Jakob's Journal

We've moved!

2009-04-17T11:00:00.001-04:00

Jakob's Journal has moved! All the posts already here will stay...since this has been going on for years...but the new stuff is all at:

http://blog.wkrq.com/index.php?blog=27

See ya there!!
j

March 3, 2009...an event

2009-03-03T10:24:00.000-05:00

"Mom, I want 4 hot dogs". I decided that hot dogs is 2 words so that's a six-word sentence. Impressive. Jakob is doing just fabulous. The language is exploding. He wants so badly to be understood. He's trying so hard to speak clearly. The receptive language is unbelievable. More and more, he's joining us in our world.

I went to a Biomedical Conference in Detroit a couple weeks ago. Scary stuff. I could write a book just about everything I learned there. So...for starts, Jakob's seeing a chiropractor, we're really working on detoxing him and I'm getting rid of more toxins in the house (like plastic plates, paper towels and so much more). And I'm gonna get serious about Hyperbaric Oxygen Treatment. That's a good start.

We had our Kickoff Luncheon for our 2nd Annual Walk Now for Autism with Autism Speaks on Saturday. Great crowd. Great people. Great committee. Great fun. Here's my speech...sort of. Of course, once I get up there, I tend to go off on a tangent or two but this is pretty much it.

It's been 4 years since we received Jakob's diagnosis. I lived 35 years before learning my only child had Autsim but those 35 years are a blur. I find it very difficult to remember what my life was like before words like "ADOS, sensory integration, speech pathologist, DAN doctor, gluten-free/casein-free, OT, PT, ABA, Son-Rise, methylation, B12, HBOT, floortime, RDI, infra-red sauna, chelation, glutathione, mitochondria, thermerisol"...that list can go on and on and on. And I think that's what has made the last 4 years seem like forever. It wasn't the diagnosis that was so devastating. It was actually a relief...we finally knew exactly what we were dealing with. It was the prognosis that was so hard...no one could tell us what therapies to try and no one could tell us if any of it was gonna work. So the trials began and continue to this day. Therapeutically, we have found what works for our family and Jakob is doing just great. Now we just have to get him feeling well on the inside and we'll be in business.

One thing I know for sure is that even when we find the best treatments for him...what we think will help him the most, Jakob will get better only if he wants to. I can love him, accept him just the way he is, be an example of happiness and joy and fun for him. I know that what I model, I teach so I wanna model easy-going, calm, flexible. I can create an environment for him that's condusive for him to want to leave his world of autism and join us in our world. The rest is up to him. I can open the door, he has to make the decision to walk through it.

That's tough too...not being able to swoop in and fix it. Cause as a parent, that's what we wanna do. And it can be real easy to beat ourselves up when we don't have the answers. Throw that in the mix with the guilt and worry and the anxiety, frustration, sadness, pain...we can really do a number on ourselves. Add in the financial strain and the lack of insurance companies wanting to cooperate...no wonder the divorce rate is 85% the first 5 years after the diagnosis. The challenges we face, there are more than a few.

Another thing...

I don't remember the details but I do know that in my first 35 years I had a social life. I had lots of friends and we would go places and do things. People would come over to my house and hang out. Not so much anymore. What I'm doing here today, this is my social life. And I only allow people in my house who are loving and accepting toward Jakob. And as you all know, people like that are few and far between. It can get lonely and it can rough when friends and family have no clue what our life is like no matter how hard we try to explain it to them.

Luckily for all of us, we have each other. Look around this room. We all get it, We all support each other. We all understand. We all want to help make things better and make life a little easier for all of us, especially our amazing kids. Because when all is said and done about how tough our lives are and how tough this prognosis is and how tired and beaten we are, we have it easy compared to our chilfdren.

They are doing the best that they can in a world that they simply do not understand...a world that they experience completely differently than we do. More than likely, they just don't feel good. Something inside of them is hurting and they just don't know how to tell us. There's so much going on with them that we cannot even begin to comprehend.

I really think it's time for all of us to be more compassionate and understanding with our kids, be more loving and accepting. Let's set an example for everyone not living with autism...like the person in the checkout line at the grocery store who gives us the look or the lecture. Let's teach everyone we can that our kids are doing their best...and so are we. Let's always find things to appreciate in our kids. Let's look at all the amazing things they can do. Let's remember the things they do that make us laugh. Let's celebrate their uniqueness. Let's cherish their smiles. Let's enjoy them.

As for all the other stuff...like legislation, research, insurance, awareness...let's let Autism Speaks handle that. Let's support them so they can help us help our kids. Let's support them so they can take care of the big stuff and we can have the time and the energy to do for our kids what they want most for us to do...be with 'em and love 'em just the way they are.

November 2, 2008

2008-11-02T21:14:00.000-05:00

"Little green ball, little bounces"...he's getting very specific about what he wants. Love it. The words are just spewing out. After 7 years of silence, we're getting sentences. Cool.

I gave him the option of dressing up for Halloween, he declined. He and I spent the evening in the living room. For awhile, he sat on the couch and we counted trick-or-traters and said "good-bye" when they walked away. I was trying to read his mind as he'd sit there and look at all the kids in their costumes. Sometimes, I really sense he's thinking about how he'd love to play with the other kids, he just doesn't know how. I believe he'd like to have some friends...we're getting there.

So he and I spent Halloween writing...well, I was writing...a lot. For about 2 hours to be exact. He has several favorite cd's that he likes to listen to...one book on cd (Five Little Monkeys Sitting in a Tree and The Great Pig Escape) and a couple music ones. He'll have me put one in and then he'll tell me to "draw book" or "draw music". Then I basically just write, as fast as I can every word and song lyric. The writer's cramp is unlike anything I've ever experienced. He loves it...the eye contact and the interaction is incredible. He'll tell me to write "big" or "little", he'll let me know if I missed any words, he'll dance and sing with me. I won't lie, it can be torture for me but it's funny. The minute I surrender to it and let go of any frustration or aggravation, either he moves on to some other activity or we really start to have fun with it.

He definitely has a girlfreind. She's 13 and cute and Jakob just loves her. She's my go-to girl when I have somewhere to go and something to do. I always know Jakob's in good hands and having a good time when he's with her. She can even get him to do things that he gives me a hard time about...like taking a shower. That's been a party lately. I spent 90 minutes in the bathroom last week trying to get him in the shower. I was in there having a one-girl party...dancing and singing, playing with all the tub toys. And at about 10:15, he got in...(after I surrendered). Erin took him up last night and in he went, no party necessary. Funny. She needs to move in :).

Jakob continues to do more and more. He's really opening up to people and forming relationships. The women who are working with him in the playroom are just great. They get what we're doing with him and genuinely enjoy their time with him. I couldn't have asked for a better group. They see the change in him and it's so exciting for all of us. My little guy is coming out of his world and it's so amazing to watch. When I'm upstairs and he's in the playroom with one of them, there's no better sound than the giggling. And he's giggling a lot. One thing he's finding so funny right now are opposites. He says "go" and we say "stop"...now that's funny. His other favorites are in, out, up, down, loud, quiet, right, left, open, close, big, little...actually, there are a ton of 'em. And he's saying every one. I sure do love that voice.

I've been getting asked to do quite a bit of speaking lately and I really enjoy it. I gave a short speech last night at an event for St. Aloysius Orphanage. It was a lovely evening and I had a very nice time. It's always good for me to get out there and talk about what's going on with Jakob and other kids who are facing all kinds of challenges. It helps me to stay focused on what it is that I'm trying to do. And it all feels so natural and so right when I talk to people about it. I know I'm doing the right thing for Jakob and for me.

I've done a lot of speeches about the details of Autism and how it can turn lives upside-down. And no doubt about it, it does. It did mine. For awhile anyway. And I still love to explain that to people because I know that most people just don't get it. And most people don't get how the diagnosis/prognosis can change the parents and everyone else close to the child. The change can go a bunch of different ways...it can get really ugly. That too, I experienced. But it can change everybody's lives for the better if we choose to have it affect us that way. That's the route for me these days and it's so much better than being angry and irritated all the time.

What continues to be so obvious to me is that I have to be happy. I have to be solid and sane and calm and secure if I want Jakob to feel that way. And it's not something I can turn on and off. I can't get all honked off about crappy service or some guy cutting me off in traffic and then come home, flip a switch and be happy for Jakob. It doesn't work that way. I can't worry about paying bills or a broken washer and Jakob not feel that from me. Anxiety is anxiety no matter what it's directed at and he feels it. I had a few moments this past week that I was having a tough time shaking and he sensed it. He got cranky. I know it was coming from me because as soon as I let it go, his crankiness stopped. He's my little radar that lets me know when I'm a little off. He's also my inspiration for wanting to be happy. What I model, I teach.

But I'm really the one learning all the lessons here. Jakob reminds me that life is supposed to be fun. That far too often we get all caught up in stuff that doesn' really matter. That the joy is in the little things. That everything is gonna be ok and all we really have is this moment. That trying to control anything other than how we feel is a waste of time and energy and if we can just let go and go with the flow, all will work out fine. And all is working out better than fine around here these days.

October 19, 2008...freedom

2008-10-20T10:13:00.001-04:00

I love being Jakob's mom...coolest thing I've ever been or done. Every day, he makes me laugh and teaches me so much. And every day he reminds me that he is his own little person and has his own idea about the world and how it operates. All he wants is what we all want...freedom to be who we are. Freedom. I'm so glad I've figured that out and know what to do to allow him to be himself. Life has become so much easier...and peaceful for all of us.

I've been spending a lot of time thinking and reading and watching. Reading all my self-help books (self-help books get a bum wrap...they're great), books on spirituality, books on Indigo Children and combinations of them all. A really great author on combining all of it with Autism is William Stillman...highly recommend his stuff. I need to put all my book recommendations up...there are so many. Of course, anything by Barry Neil Kaufman should go first (Son-Rise:the Miracle Continues and Happiness is a Choice).

I'm living with such an interactive, fun-loving kid. He bosses me all over the house "go that way" and "mom up" and "Mom wake up". His big thing right now outside of the playroom is having me write the lyrics to songs over and over. Writers cramp big-time. He does love to sing and his words are getting clearer all the time. He sure does love it when I figure out what it is he's singing and I sing along. The smile is huge and the eyes just sparkle. He also still loves telling me to "go that way" and "17 jumps woah go". That's a little game where I jump 17 times and then run into the other room acting like I'm gonna fall down and say "woah" the whole time. Something about me falling down he finds hysterical. This went on for 2 hours the other night. Non-stop belly laughing is a great sound, the best there is. I can't get enough of it.

He's been a little weird about taking a shower lately. I let him go without for as long as I could so Friday night was it. We had to do it. So...I went in the bathroom and had a one-girl party. I pulled out all the tricks...singing, having his little elephant scrubby dance, pulled out all the tub toys, had airplanes and cars crashing, getting in the shower myself and playing with all the stuff. After an hour and a half, he got in. That's all it took...90 minutes :). Not sure but I think he wants to avoid the water to protect his band aids. He's got a thing for band aids...the slightest papercut requires a band aid for 2 weeks...gotta make sure it completely heals. And this is a kid that couldn't stand anything attached to his skin, now he loves it. Anyway, the next night, he marched right upsatirs and got in the shower himself. Problem resolved. And it only took 90 minutes.

We went to a new DAN! doctor, recommended by Raun Kaufman. If Raun recommends, I do. I love that guy. The doctor spend 3 hours with us and there was so much info that my head is still spinning. Long story short, vaccine injury, Jakob is toxic. We're running some lab tests and will be adding more supplements. Party on.

I have to give Jenny McCarthy a lot of credit. She's brave. Taking on the medical community and the government is not something I'd want to do. Just ain't my thing. But she believes in what she's doing and she's getting out there and doing what she can to educate and help families. I so love her messages of hope, recovery and parental empowerment. Go Jenny. I sure do get asked a lot about the vaccinations and I do believe that Jakob was affected by them. I encourage all parents to do the research, consult a DAN! doctor and follow their instincts. Same goes for parents wondering whether or not to vaccinate their kids...research and follow your gut.

When it comes to our kids being "sick", I do know one thing...the mind has amazing healing power. But the mind can't heal the body if it's frustrated, angry, annoyed, fearful or any other negative emotion. So joy is the answer. And joy is contagious...our kids can catch it from us. I'm constantly looking for things to feel good about and things to laugh at and I see Jakob doing the same. We'll find the balance between joy and medical intervention and things will continue to become more and more fun every day. It's cool being Jakob's mom....so thankful that he picked me.

August 24, 2008...lesson learned

2008-08-25T07:55:00.001-04:00

Even though I haven't posted anything in awhile...I've been taking plenty of notes. So much to share, too much for a blog. Maybe a book someday...

Going back and reading what my life with Jakob was like a year ago, I get very excited about where we are today. I now have a child who wants to interact with me, not just turn the water or the movie on and off for him. He uses words instead of grabbing me by the arm or the shirt and dragging me where he wants me to go. He looks me in the eye and smiles...a lot. We play, we laugh, we snuggle. We spend time together, not just in the same room. It's really a nice life.

I'm in such a better place now. I've got this...most of the time. What's really cool is in those moments when I don't got it so good, I know what to do to get it back and I get it back really quick. Like yesterday...

Without going into all the details, let's just say that my patience was being tested. And had I been getting graded, I'd probably get a "C" in patience. I could feel myself on the verge of not handling it well. And when that would happen, I would remove myself for a few moments and ask myself, "What do I want to happen here? How do I want this to go?" Knowing full well that all I could control was how I handled it...couldn't do a darn thing about how Jakob was handling it. I'd take a few breaths, focus and go back in. Now...I had to do this several different times for several different situations. Sometimes more than once for the same situaton. But...we made it thru and some really wonderful things happened.

After Jakob had fallen asleep, I really felt like I could breathe. It was a relief knowing that today was another day and we'd get to start all over again. I made the decision that today would be different, better, easier. I decided that I was gonna be calm and relaxed no matter how Jakob decided to be. I decided that I was gonna be fun to be around. That I would be loving, accepting and nonjudmental no matter what. I took a few minutes and wrote down all the good things that had happened during our "day of a few challenges". Like...he took his supplements, there were no accidents. He did great with Erin (a volunteer), he brushed his own teeth, he wrote down what he wanted when I couldn't figure it out and he remained relatively calm during that process. There were a few more too. It sure does help to focus on the good stuff and it sure helps me get my mind set for the new day.

And what a wonderful day we had. I was fun, damnit. And we laughed like crazy. We connected. I got all kinds of silly in the playroom and he loved it. Outside the playroom, we sang and danced and giggled. I was reminded that it all starts with me. The calmer that I am, the calmer he is. The happier I am, the happier he is. The more comfortable I am, the more comfotable he is. If I'm gonna help him, I have to be the person that I want to be.

Yesterday was intense. Yesterday was a blessing. Yesterday was a lesson. A big one for me. Yesterday was a reminder to me of what I've known for awhile. I need days like yesterday every once in awhile. It makes me stronger, smarter, better. And that's what I always need to strive to be...so I can teach others how to do it.

August 3, 2008...one year ago

2008-08-03T14:23:00.002-04:00

The following is something I wrote a year ago and never published. I thought now would be a good time just so I can see what's stayed the same and what's changed. Time sure flies...

Meet Jakob

We're exactly four weeks from Jakob's sixth birthday. My little buddy is gonna be six. I can't believe it. He weighs almost 60 pounds and is so tall. He doesn't get that from his father, he's short. He gets that from my Dad, he's 6'4. He does have his father's eyes, toes and fingers. But the rest is me. He's a little me in a lot ways...the blond hair, the nose, the big space between his front teeth and the onery little grin. He's smart too, definitely also from me.

His hair is kinda long for a boy. I've never wanted to cut it short. Occassionally, people will refer to him as "she"...sometimes I correct them, most often, I don't. He used to have tight, platinum curls. Now it's more dirty blond and pretty straight with a little curl at the ends. Adorable, I tell ya.

His growth spurts are really obvious. He goes through these cute, chubby phases...mostly in his belly. He'll sit down and little fat rolls will appear. Just when I think that we need to go buy clothes in a bigger size, he'll sprout up and everything still fits. I like the chubby phases the best since that's when he looks more like my baby than my growing-up-too-fast son.

Jakob has a little button nose and a tiny birthmark on his right cheek. His eyes are brown and his complexion is pretty fair (pasty like his mom).

He has the most contagious smile and infectious laugh. There's no greater joy than hearing the laugh that comes all the way from deep in his belly. It has the power to turn the worst of days into a beautiful celebration of life.

Just looking at him, he appears to be a typical kid. By spending a few minutes with him, it's obvious that he's anything but typical.

In his almost six years, he's never spoken more than one or two words. He lets us know what he wants by dragging us to it most of the time. He uses some sign language and has recently started using a communication device that speaks for him...he just has to tell it what to say. Sometimes, he just screams or squeals this really loud, high-pitched squeal that shoots down the spine. We prefer all the other means over that one and I'm pretty sure he does too. He only whips that one out when nothing else seems to work or he's being really adament about something.

Jakob's not crazy about loud noises, bright lights or anything that might be startling. Vacuuming or using a mixer in this house can be quite an adventure.

He rarely takes to strangers, unlesss they understand exactly what they're getting themselves into. With the right approach, he can be extremely enagaging. He's much better with kids than adults. In fact, I think he has a couple of girlfriends at school. I caught them hugging on the playground one day. It was so sweet. I sat in my car and cried.

Jakob doesn't like his space to be invaded or his things to be moved out of place. He's not a kid that you grab, tickle, throw up in the air and spin around...unless he's totally prepared for you to do that. And if he has a specific spot for his cd player, then that's where it goes, at all times. I can move it but he'll put it right back. And if I try to put a favorite toy away, he'll not give up until I get it out and put it back where he says it goes. RIght now, there are specific spots in our house for approximately 37 of his things...give or take a dozen.

Jakob definitely has his own agenda...it's what he wants to happen when he wants it. He likes to be in charge. He's very much in touch with his wants, not-wants, likes and dislikes and doesn't have much interest in trying new things. He's pretty set in his ways. He also likes to let me know what he does and doesn't want me to do. He prefers that I don't sing along with his music (in the car or on the tv) and that the food I'm eating doesn't get too close to him.

It's amazing that he's grown as much as he has considering his diet only consists of five different food items. It's cookies and maybe a banana for breakfast, four hot dogs for lunch (that he eats with a fork) and a huge pile of macaroni and cheese for dinner (that he eats with his fingers). He snacks on chocolate chip cookies and fruit juice snacks. All five of these foods are very specific brands and flavors. He knows if we try to slip him a turkey dog or tropical flavored fruit juice snacks instead of the fruit medley flavored ones. And he's able to tell just by taking one look at it. If it ain't his usual, he'll refuse it immediately (usually with one of those spine-tingling squeals).

One word that guarantees a squeal is "no", a word I've learned to use sparingly. This is another one that he gets from me. I'm 38 and still don't like to hear that word. If I'm going to be told "no", it better be followed by a good explanation of why and I better be given an alternative that is equally as pleasing to me as what I was being told "no" to. Since that's what works best for me, I use the same method for "no" with Jakob. I simply say "yes" as often as possible.

I've decided that I'm not gonna look at the water bill at all this summer. I can only imagine how many gallons come flowing out of my backyard hose every day. From the looks of the mud pit we have going out there, I'd guess we're going through quite a lot. Jakob is big with water this summer. All kinds of water. Water in his little baby pool, water in his water table, water going down the 2 slides on his swingset and he even waters the mud. It's water, water, everywhere. I recently got him one of those inflatable water slides...just a little one and he loves it (the main cause of the mud pit). I'm not sure what he likes more...going down the slide and playing with the water as it pools at the bottom or watching it inflate and deflate. Inflating and deflating are pretty popular too. One thing is for sure, every time we head out to the back yard, there's gonna be some nudity on the deck. I'm so glad he's finally learned that he needs to wear his swimsuit if he's going to play in the water. Last summer we were doing a lot of laundry, loads and loads of wet muddy clothes. Maybe next year, he'll get naked in the house. I'm sure the neighbors will appreciate that.

The whole backyard scene has a definite routine...to be followed precisely. I attach the hose to the waterslide, tie up the air-release hole on the slide and turn on the blower. Once the waterslide is fully inflated, I'm told to turn on the water (he signs and tries to say "water"...it sounds like "ah, uh"). I turn on the hose and it's party time. He'll watch the bottom of the silde fill up with water and then he'll slide down it, usually no more than 3 or 4 times. Then he tells me "all done" and "off"...I untie the air release and turn off the blower. He giggles like crazy and jumps up and down as it deflates and continues to spray water. Once it'e completely deflated and he's had a minute or two to watch the spraying water, he tells me "off" and I shut off the hose. He's done with the waterslide and ready to move on to the water tables and his little pool. He unscrews the hose from the waterslide and walks to hose over to his little pool and tells me to turn the hose back on (he signs and says "ah, uh"). He puts a little water in his little pool and a little more in his water tables. He'll play in the water tables for a brief period and then he hauls the hose to the swingset. He'll climb up the stairs dragging the hose, watering each step as he goes. Once up there, he immediately runs the water down the tube slide. He gets it exactly as wet as he wants it and slides down. He loves to watch water flowing so he'll stand at the bottom and jump and squeal as the water runs down the slide and into the grass. Always on the move, he's back up the swingset and heading over the bridge to the other slide, dragging the hose with him. He'll get to the top of the that silde and start looking for me. He says "up, up, up" and sticks his foot out at me. I'll grab him by the ankle and count "1,2,3, go" with him and I'll pull him down the slide. He thinks that's pretty funny. Then he'll watch that water run down for a few minutes before he heads to the sandbox (which is such a treat since he's soaking wet). He loves to dig his hands in the sand, pick up as much as he can, hold it up and just watch it fall. Sometimes he throws it and sometimes he just lets it slip through his fingers. Either way, it's obvious by his little squeals that he's loving every minute of it. While he's in the sandbox, I retrieve the hose and fill up his little pool and wait for him to be done in the sand. When he exits the sandbox, he heads for the pool and the hose. Most of the time, I can get him to let me hose all the sand off of him. I have to count backwards from ten so he understands how much longer he has to put up with me before it's over. Then it's back to the watertables for a few minutes, maybe a dip in the little pool and he's done...or he could go through the entire routine one more time, if he's feeling up for it. At the end, I always have a naked kid on my deck who rarely waits until he's dry to go back in the house. That's the routine and it will happen in that order every time. He likes it that way, it comforts him.

Jakob just loves being outside, he always has. Even as an infant, he was his happiest in the fresh air. He loves to go for walks, run sprints in the back yard and be close to water. He's a nature kid.

Music is another one of Jakob's favorites. He's really expanding his interest in children's songs. BINGO was forever his number one and is still a favorite but he seems to equally enjoy "Where is Thumkin" and the "Wheels on the Bus". "Five Little Monkeys" is also guaranteed to make him smile...as long as I don't try to sing along. He always appreciates some good classical music whenever he needs to relax, sometimes in the mornings and afternoons and always before bed. That music is always accompanied by calming video (ususally of water). Sometimes, he tries to play along with the music on his piano that his Grandma and Grandpa got him for Christmas last year. He takes lessons and even knows a few songs (Twinkle Twinkle Little Star, chopsticks). That's another thing that I'm not allowed to do...play his piano or sing along as he plays. Party pooper.

It seems from birth he's had a strong affection for letters and numbers. Nothing beats the alphabet (caps and lower case) whether it's a puzzle, a work of art or something he wrote himself. He's perfected his art of writing letters on whitebards, index cards and big pads of paper. I've saved several large books of his work. Someday I may have them framed and sell them, I think they're worth a fortune. Some of his alphabet work also includes 1-10. I'll charge a little more for those since people would be getting 2-for-one, letters and numbers. I have a few sheets of colors that he's done as well. Red, orange, yellow, green, blue, purple and he's recently added pink to the list. That's the whole rainbow plus one so I'm not sure how much to charge for that. A whole rainbow should be worth the big bucks. He just loves writing his letters. It calms him. There's a definite beginning (Aa) and a definite ending (Zz) so he knows exactly where to start, how long it will take and when it's done. It's a comfort to him and it brings him peace. And it's cute...especially his lower case "g" and his lower case "q". Those letters are unlike any I've ever seen...worth big bucks, I'm tellin' ya.

No matter where or when, Jakob's top choice has always been movies. Movies for Jakob include Baby Einstein, Baby Genius, Signing Time and a little Sesame Street. He used to to totally get into Elmo but not so much anymore. He just loves all the sights and sounds in videos with classical music. If the movie has pretty music and letters or words that pop up on the screen, he's in seventh heaven. He can watch the same movie 3 or 4 times in a row. This is one I get too...I'll watch Star Wars over and over and over. Movies are an every-day activity around here.

I figured out that Jakob was reading last Christmas. I got him this teddy bear that read "'Twas the Night Before Christmas" and it had the book to go along with it so he could read along. Jakob had no problem keeping up and would point to the words as the cute bear said them. I always loved that story...and I continued to love it and listen to it until the end of June. That's when he finally let me put it away. I tried several times prior to June but it was one of those situations described earlier. The minute he'd walk into the house, he'd check to make sure it was sitting in the foyer 14 inches from the wall. If it wasn't there, he'd grab me, drag me to the spot where it was supposed to be and give me this pathetically sweet "Mom, where is it" look. I never can resist that look. And it obviously brought him so much joy so I'd get it back out. He's moved on to books on cd. He reads along with some Dr. Seuss classics, "Moonbeam Bear", "Chicka Chicka Boom Boom" and "Opposites are Fun". In all, there are probably 10 different books that he'll read which provides a lot more variety than just "'Twas the Night Before Christmas". I know exactly where that bear is and it'll be ready for him around Thanksgiving. For now, I'll enjoy "Fidgety Fish".

As far as fun physical activity for the kid, nothing compares to jumping. At one point, I had the big trampoline in the backyard and three small ones inside, one for each floor of the house. He busted two of them so we're down to just the one. It goes back and forth between the living room and the family room and sees a lot of action. It's another one of those things that calms him, helps him relax. He loves it. Jumping used to be an all-day thing, now he just jumps when he really needs to. But it's definitely a popular activity.

Swinging has become something that he digs. He has two different kinds of swings in the basement, a cocoon-like one and a long skinny one that he can lay on. Jakob spends a lot of time in the basement, it's his little world down there complete with a big white board, a tv and lots of pillows that he can bury himself under. He loves to be smooshed in those pillows...another calming activity. There's plenty for him to do down there. All of his home-based therapy takes place in the basement, away from all the noise and activity going on upstairs. Whenever one of his therapists shows up, he heads for the basement door. He knows it's party time. He loves his therapists, they're his best friends.

Jakob is happiest when he knows what his schedule looks like. It's a great comfort for him to know what's coming next, whether it's lunch, therapy, school or the bathroom. A schedule and a set routine make the difference between a 2-squeal day or a 500-squeal day. 500-squeal days happen when there are big transitions like from the school-year to summer vacation then back to school. Getting him into the new routine of different places at different times with different people usually takes a couple of weeks but he always adjusts. It just takes that long for him to figure out that what we're asking him to do is fun. Once he sees the light, he's all about it.

Occaionally he'll develop a little routine within his routine. I just discovered one of those last week on the interstate on the way to his favorite therapy place. It seems that Jakob has a lane preference and is very specific about when I merge into that lane. The squealing starts as soon as he's decided it's time for me to move. He leans toward the lane that he wants me in and squeals. Sometimes, I get a little point in the direction he wants me to go. It's hysterical. I've turned it into a little game and use it as an opportunity for him to try to say the words that he knows he wants to say. I tell him to point and say "that way" and I hear from the backseat ' "a, aye". If the lane is clear, I merge. If there's a car there, I tell him "wait for blue car (or red truck)" and repeat it until we pass the car. Then, as we pass, I tell him, "say "bye, bye, blue car" and I hear "be, be, ooh, ahh". It's so sweet and he just giggles...I much prefer that to the squeal.

By the way, Jakob knows every route to every place he regularly goes. Taking a different route isn't an option. I prepare for a big squeal if I take a turn that he's never seen or doesn't know. Whenever we try to go someplace new, I'm always prepared to bail quickly just in case the squealing escalates. I swear he knows how to get to my parents house in Illinois...every exit. Unreal.

He's also great at remembering where I parked the car. We could be in the parking lot at Disneyworld with 30,000 cars and he's know exactly where to go. Amazing.

He loves eskimo kisses and is still attached to the blankie he started sleeping with when he was a baby, even though it's the fourth one we've owned... same brand, same blankie, same color. He has two of them right now but only likes the green one.

My life with Jakob is never boring or dull. He keeps me on my toes and I've become very attentive to detail. Upon entering any room, I scout for potential dangers and anything that will make him mad, scared or overly excited and I prepare for any possible reaction that he may have. It's one big adventure and a huge learning experience for both of us. I hope he's learning as much from me as I'm learning from him.

Jakob is my greatest joy and the biggest blessing I've ever received. I just love him. He inspires me.

Two weeks ago, Jakob lost his first tooth...bottom, front. It had been loose for awhile and the way he'd move it around really grossed me out. I was concerned that he might swallow it or it would fall out while he was playing and it would be lost forever. I was sitting next to him while he was eating his nightly pile of macaroni and cheese and he started wiping his fingers on the tablecloth (something I'd never seen him do before). I asked him what he was doing and when I looked at him, I noticed a little blood on his lip. By the time I looked back down, he had put the tooth right next to my hand. I told him, "thanks, buddy, I was worried about that".

My little buddy is gonna be six. I can't believe it.

July 28, 2008...the media

2008-07-28T18:27:00.001-04:00

Radio people...what a pain. A couple of those talk radio guys have been yacking about Autism and have made some comments that haven't gone over too big in the Autism community. Up til this point, I've remained silent, waiting to see what happens. I'm sitting here now listening to one of the guys...he has a really big mouth and tonight, his show is supposed to be all about Autism and the comments that he made...we'll see.

I know that many have been waiting for me to respond to his earlier comments. Last week, I wrote a letter to the editor at the Cincinnati Enquirer. It doesn't look like it's gonna get printed so I'll share it here:

Dear Editor,

As a broadcaster and a mother of a child with Autism, I am very saddened by the recent comments made by 2 of my fellow broadcasters, one national, one local. It's apparent to me that all the hard work that families living with Autism have done to raise awareness and understanding of the disorder have fallen on some deaf ears. I know that as a united, passionate group, we will continue to tell everyone about our beautiful children and what they have to offer the world.

I have chosen to surround myself and my son with loving, accepting and non-judgmental people. I know that our community has more people in that category than not and I feel very blessed to live here. Those not in that category are missing out. Children and adults on the Autism spectrum are amazing, brilliant people. They simply see and experience the world differently than we "neurotypicals".

Many think that Autism is a behavioral disorder. It's not. It is a relational, social interaction disorder and the behaviors that we see are a symptom of that. They don't understand our world, it makes no sense to them and is often frightening and unsettling. Regardless of what you may see, they are always doing the best that they can, as are their parents.

Instead of judging families with ASD, it would be a wonderful world if others would show some compassion, love and understanding. Instead of complaining to the the manager or the flight attendant, try showing some concern and offering help. It would mean the world to us moms if during a "meltdown" someone would say "can I help?" instead of "that kid just needs a good spanking". You would be amazed how much quicker and easier the situation would diffuse itself when that attitude is applied.

People with Autism have sixth, seventh and eigth senses (maybe more). They know when someone in the vacinity is uncomfortable, frustrated or agitated and that only causes them to fall deeper into their Autistic tendencies. By showing acceptance and understanding, not only will you help the parents and the situation, but you will help a child who desperately needs to want to be a part of our world. And who wants to be a part of a world where everybody's grumpy, nasty and self-centered? I can sometimes understand why our kids love their world of Autism, they can create the exact kind of world they want to live in.

We don't know what causes Autism and it looks like it's gonna be awhile before that's figured out. Autism is nobody's fault but all of our responsibility. People can pretend it doesn't exist and try to exclude Autism families from a "normal" life wih "normal" activities but that can't last forever. With 1 in 150 children being diagnosed and over 3000 families in the Tri-State doing the best that they can, if Autism hasn't touched you directly yet, it will. Especially when this large population of kids reaches 18 and they become taxpayer's responsibility.

So in the meantime, let's create a community and a world where we respect parents and love the children that need a lot of help. Be the person you would hope your neighbors would be if you found yourself in the position of being the parent of a child who is frightened, confused and overwhelmed.

And ASD parents, let's remember the people around us who do care and choose to support us, there are many of them. As for those who have a problem, remember, it's their problem because they choose to make it one.

As for my fellow broadcasters, I hope in the future that you do your research before making irresponsible and hurtful comments about something you obviously know very little about. We have a huge responsibility every day when we sit in front of that microphone, please consider what you want to do with that responsibility...use it to help or to hurt. For the sake of our sweet, innocent, beautiful children, please make the right choice.

jenn jordan
"Jeff and Jenn"
Mornings on Q102

Meanwhile back at the ranch...Jakob's doing great. I've gotten some wonderful volunteers who are quick learners and they're just fabulous. I always knew they were out there and all I had to do was ask. Im so glad I put out those flyers and posted it on this blog! I still could use a couple more, so if you know anybody...

Jakob's speech is getting clearer every day. It's so much fun and he's so funny. He loves words like "woah" and "uh oh". "Oh no", "oh boy", "ouch" and "stop thief" are pretty big too.

For the love...these old, cranky farts on talk radio...it's difficult to brag about my kid while listening to this crap...I'll be back...can't wait to write about walking on fire...

June 30, 2008...We're Back

2008-06-30T19:17:00.001-04:00

Well, it didn't go as I had planned. There was a problem. The mirror in Jakob's playroom was cracked so I had to replace it...not an easy job. And not a pretty one either. Being the "Superwoman" that I believe myself to be, I figured I could get it down and put up another one. It was big...and very heavy. I dragged Sandy into this project and we got the broken one down ok...putting the new one up didn't go so well. We broke that one too...I only bled a little bit. So, I called in the neighbor and he put up mirror #3 without incident. I guess every now and then I do need a big strong man around.

This delayed the re-entry into the playroom. I couldn't have him in there with a broken mirror...that would have been recipe for disaster. He would have fixated on the crack and could have cut himself. If he messed with it just a little bit, it could have fallen on the floor and shattered...that wouldn't have been good. And if I would have tried to tape it, he would have insisted on pulling off the tape (he can't resist pulling off tape). And I couldn't put him in there without a mirror, he wouldn't have stood for that. The mirror is one of his favorite parts about the room..he likes to look at himself. So the mirror situation had to be fixed. And like I said, I only bled a little.

Today was the big day...we had a facilitator outreach with our girl Susan and he did great. I think he liked getting back in there and back to his old routine. He went right back to several of his favorite activities...bouncing on the ball, making lists, drawing pictures, blowing bubbles. He laughed and played a lot. It was no nice to see...and it felt like we were getting back to our "normal" life. It's finally feeling like we're past the hospital stuff...amen. That was rough and it feels good to get it all behind us.

We saw the surgeon last Thursday and he said that Jakob was "cured" of appendicitis. Relief. No one had any answers for us on the painful urination thing. It's seemed to have cleared up but no clue for sure what may have caused it. Lots of speculation...no answers. Typical for the Autism diagnosis...I've gotten used to not a whole lot of answers. So I'll just keep an eye on him and try to guess if I see something that just doesn't look right.

We're slowly re-introducing all his supplements. It'll take a few weeks to get him back up and running on all that stuff. There's no doubt that the kid has some major gut issues that we have to get cleared up. Only one way to do that...watch, give him supplements and watch some more.

On our little hiatus from the playroom, we decided to put Jakob through the Sensory Learning Program again. It compliments Son-Rise and it sure made a difference for him the last two times we did it. During the first run is when he first looked at us. During the second was the first time he sat still. This time, who knows what we'll see...could be anything. I know that he loves it. He goes right in the room, lays down on the table, puts the headphones on and smiles. Then he talks and sings the entire 30 minutes. So cute. We're at the point in the program where we do the light thing at home. We go into the walk-in closet for 20 minutes, twice per day. I wouldn't be surprised if we end up in there more than twice every day...he digs it. It has a calming effect on him and he's just so chatty. We sing and snuggle. I dig it too.

Every day I see more signs of the old Jakob...the pre-appendix-bursting Jakob. He's back to testing me every now and then...with taking his supplements, taking a shower, going to the bathroom, eating a banana, going to bed. I get the foot-stomping, squealing, screaming, alligator tears...the works. It only lasts a few seconds but boy he's good...got a set of lungs on him. It's impressive. I've really honed my skiils at being unaffected by it. I remain calm and show no signs of impatience or frustration. I've gotten really good at explaining every little move I make to him and why he needs to do whatever it is I'm asking him to do. He understands, thinks about it and then I get my way. The whole scene reminds me of me...I've always been a person who doesn't like to hear "no"...especially without an explanation of why not. So understanding how he's feeling, it's easy for me to explain, in detail, why he needs to drink his cranberry juice. If I give a good enough reason, he can't argue. I do my best to give him a really good reason the first time. It's usually pretty funny to watch...one second the scream with the big tears, the next second he's naked and getting in the shower. Sometimes it takes enormous restraint not to laugh...sometimes I just turn my head and chuckle. I just remember how it used to be a couple years ago...the screaming non-stop. We've come so far, the both of us and we've learned so much. I never would've believed that I could laugh at what I laugh at now. And I laugh a lot. I think I may have heard, once or twice, that laughter heals...

I've been wanting to get another tattoo...an addition to what I already have. A healing symbol. It needs to go in the vacinity of my current tattoo, I'm just not sure where yet. I have a whole page of different symbols for healing and I've narrowed it down to a couple. Funny story...there's a design that Jakob likes to draw over and over, a couple of them actually. And the designs just happen to be healing symbols...hmmm. I'll probably go with one of his...ain't that somethin'? Unreal.

This is gonna be a good week...back in the playroom, hanging out in the closet, I have a couple days off for the 4th, some new volunteers to train (still looking for more, if anyone's interested). I'm feeling good, feeling strong, knowing what I want and totally adoring every little thing about my kid. Not much else I could ask for...well, money would be nice. A whole lot of it. But that's it. Everything else is back on track and I am so happy and grateful for our healing...Jakob's and mine.

I've discovered that healing takes more than a few days and it's an ongoing thing...at least for me. I have a lot more to heal from than I realized. Every time I take care of one issue, another one pops up. There's a little thing here and a bigger thing there. Luckily, thanks to tons of reading and research, I'm figuring out the fastest fixes and each time something pops up, I know what to do to take care of it. I like knowing that and I love being able to do it. The more I read and learn, the deeper my understanding becomes of how I have to take of me in order to take care of Jakob. And I see the difference it makes in him. I know that we're gonna be more than ok, we're gonna be great. Actually, we're already great and getting better every day. The adventure continues...

Quick Update and Speech

2008-06-22T20:12:00.002-04:00

Still no stinkin' answer on the pee pee problem. He's still hurtin'. It's not as bad but it's still there. Nothing shows up in the urinalysis and the x-ray was normal. The pediatrician thinks it's just discomfort from the surgery. We have a follow-up appointment with the surgeon on Thursday, maybe he'll have some answers. I know I've said it before...but it should would be nice if Jakob could tell me where it hurt.

He's been home from the hospital for 2 weeks now. What a blur this all has been. For the most part, I'm pretty relaxed most of the time. I keep telling myself that if something was wrong, he'd have a fever, he'd be grumpy or crying, tests would come back abnormal...something would happen. So I'm just going with the flow.

Hopefully, I'll get him back in his playroom this week. We haven't stepped foot in there since the night he first got sick. I haven't wanted to push it since I know he's still not 100%. And I know I have to be completely comfortable and ready and I just haven't been yet. I'm getting closer though and I intend to go back in Tuesday...yup, Tuesday.

I finally got around to making the speech I gave a couple of weeks ago a little more reader-friendly. Here it is...without all the extemporaneous stuff I stuck in as I went along. This was given to parents and professionals at an event for Children's Hospital Department of Psychiatry...the theme for the evening was "Whatever It Takes".

(Have I ever mentioned that I love public speaking?)

Thank you so much for having me. I'm thrilled to have the opportunity to talk to you tonite about the things that are nearset and dearest to my heart..my son Jakob, his diagnosis of Autism, what it's like to have an amazing and special child like him and how you do whatever it takes, as parents and professionals, to make all the difference in the world for kids like Jakob.

It's been a bit of an adventurous week for Jakob and me. Last Thursday around noon, we brought him the ER with a suspicion that he might be suffering from appendicitis. Around midnnight that night, he had an appendectomy. Unfortunately, his appendix had burst and it was quite a mess. We're still living at the hospital and will be there until at least Sunday. For most kids, when this happens, it's a day or two and they get sent home to continue treatment there. But not for us...

Because of Jakob's Autism, we need to keep an eye on him 24 hours a day and monitor his condition very closely. Since he is still technically non-verbal, he can't tell us how he's feeling or where it hurts so we're left to watch him and make our best guess. There's a risk of infection, an abcess forming which would require a second procedure to drain it and he has a picc line inserted up his arm that runs thru a vein close to his heart thru which antibiotics are administered. That picc line would be very easy for him to pull out...we're doing whatever it takes to make sure that doesn't happen.

Jakob doesn't understand what's going on...all he knows is that it's kinda noisy (as all hospitals are), there are strange people coming in and out and they like to poke at him with cold instuments and invade his space. He doesn't feel so great and he wants to go home. There's really no way to explain to him why he's there or why all of this is happening to him. So we do whatever it takes to keep him calm, entertained and peaceful. He's doing pretty great, all things considered.

The care that we have received at Children's has been nothing short of awesome. The entire staff has done everything in their power to make us feel safe, warm and cared for. They've been so willing to work with me to not only understand Autism and how it affects Jakob but also to change the ways they normally do things to make it easier on my little man. The respect that I've been shown is so very appreciated and will never be forgotten.

I first knew something just wasn't right with Jakob when he was just an infant. He wasn't hitting his develpomental milestones....he didn't babble, he was very stiff, didn't like to be held, cried all the time, never looked at us, didn't play with toys the way they were intended to be played with and just really didn't seem to like me very much at all. As he continued to grow, all the classic signs of Autism began to appear...he lined all his toys up, he would do the exact same thing over and over, turn cars over to just watch the wheels spin, jumping, toe-walking, hand flapping...no eye contact, no language.

I remember our pediatrician (not from Children's) telling us that he was just a boy and boys develop slower...that we shouldn't worry...even if he did have autism, he was only a "little Autistic". We asked for a referral for a speech evaluation and he said, "Why do you wanna put him in speech therapy? All they're gonna do is play with him...can't you do that yourselves?" Needless to say, we switched doctors...

Jakob finally received the official diagnosis at 3 1/2...the therapies began and I continued to search for answers on my own.

Looking back, it wasn't the diagnosis that was so scary...it was the prognosis..and the never-ending stream of "I don't knows"....will Jakob ever speak? I don't know. Will he be able to take care of himself? I don't know. Will he ever go to a typical school and have friends? I don't know. Will he ever look at me or even care that I'm in the same room as him? I don't know...

The prognosis turned into an overwhelming wanting and needing of help and not knowing where to go for it. There was this unbelievable feeling of urgency because all the difference could be made with early intervention so something had to be done and fast. It was the prognosis that caused us to stop looking at all the things Jakob could do and to focus on all the things he couldn't do and to try to figure out how we were gonna fix it.

So what came next was inevitable...the anxiety, stress, panic, sadness, grief, insecurity, uncertainty, fear, anger, frustration, guilt...the worry...how are we gonna pay for everything he needs? How are we gonna to live like this? What therapies do we try? Will it ever get easier or will it always be like this?

Only parents who have gone thru something like this can truly understand. We learn quickly that family, friends and co-workers don't know how to help, don't know what to do for us. Some may try but few can truly comprehend what our lives are like. We become an island in a sea of our diagnosis/prognosis...with little to no support.

Somewhere along the line, many of us lose sight of the beautiful child we brought home from the hospital...the perfect little being who was the greatest gift we'd ever been given...the perfect addition to our family.

And as it is with all things in life, what we focus on just gets bigger, it expands and grows. And it's tough to not focus on what's right in front of us day in and day out...in our case with Autism, it was the screaming, the crying, the tantruming, the no sleeping, the running, jumping, throwing, crashing, the doing all the things we don't want them to do and not doing anything that we want them to do......the sleep deprivation...the sheer exhaustion.

With all of that mixed in with the rollercoaster of emotions, we no longer see the child who's just doing the best that he or she can to manuever thru a world that they just see and experience differently than we do.

All we can think about is how to fix it, how hard it all is and how people need to understand our children, how they need to understand our lives and how everyone should accept our children and us. Some of us even kick and scream ourselves in an attempt to get people to listen to us and understand something we ourselves haven't fully grasped.

It can become a vicious cycle that can easily take over every minute of every day and all we can try to do is make it thru.

It was about 16 months ago when I decided enough was enough..I was tired of feeling sorry for myself and for Jakob. I made the decision that life was supposed to be fun and darnit, I was gonna make sure that it was and I began to focus on all the things that Jakob could do and all the cute, funny "quirky" personality traits that made him who he was.

I began to really grasp that I know Jakob better than anyone...better than any doctor, therapist or specialist. I knew what he was thinking, feeling, wanting, needing...what approaches worked and which didn't. I still occasionally have to remind myself of that...and of the fact that he trusts me more than he trusts anyone...he feels safest and most at ease with me...and if I'm feeling stressed, rattled, angry, frustrated or sad, even if I try to hide it...he knows and he will feel the same way. That's why I'm always doing my best to set an example for him of how to be an easy-going, happy, peaceful and loving person...haven't perfected it yet, but I'm getting there.

Mother's intuition is so much more than a catch phrase...it's a feeling so deep in our core that if we can calm down enough to listen to it, it will lead us directly to all the answers we're looking for. It will lead us to the diagnosis, to the best treatment, to the best physicians and therapists and the best way to live our everyday lives with our children.

That inner voice that we as parents have is so powerful...if we can find it, hear it, listen to what it's telling us, nothing is impossible...nothing. And life becomes so much easier for eveyone involved.

Once I really started to pay attention to that voice, everything fell into place for us. I found the autism treatment that fits us to a tee and in the 4 months that we've been doing it, my "non-verbal" 6-yr-old has gone from saying one word to saying over 10 words clearly and trying to say at least 200 words. He looks at me all the time, I get hugs and kisses without having to ask for them and instead of jumping on a trampoline all day watching videos and not caring if I'm in the same room with him, he takes me by the hand, sits me down and wants me to play with him. It's so wonderful.

I've been doing whatever it takes to listen to that inner voice...

The biggest hurdle to be aware of with that inner voice? Not living in the present moment...guilt about the past and worry about the future...so very, very, very easy to get caught up in. I know...been there, done that. Truth is...ain't nothing we can do about what already happened and the only thing we can do about the future is do the best we can right now. The only thing we have any control over is the right here, right now...so why don't we just live the right now to it's fullest?

It may take a little practice...but it can be done and when you do it, you'll know...you'll feel it and you'll love it. For parents and professionals...the next time you're with your child or the child you're treating...forget about what happend 5 minutes, an hour or two days ago. Don't think about what you're gonna do later that night or next week. Forget about the laundry or the jerk who just cut you off in traffic. Just be 100% present with that child and in that moment...no matter what that moment is. There's no better feeling than really being there, and the child you're with will feel it too...amazing things can and will happen. Do whatever it takes to just be there.

I always thought that I did that...I always thought that I was a pretty good at really paying attention and being aware of Jakob's needs. Then I locked the two of us in a playroom with no tv, no battery operated toys and no computer. I began to let Jakob take the lead and do whatever he wanted. I had the room filled with all of his favorite things and turned him loose. Whatever he wanted to do, he did and I did it too. I was completely focused on him...where he was and what he was doing. I really got into the activity he was involved in...whether it was bouncing on a ball or writing lists on a white board. I joined him with lots of energy, excitement and enthusiasm. I accepted him for who he was and didn't judge him. I began to see the world thru his eyes. And he began to see me as a person who understood him completely, a good friend who not only loved him unconditionally but enjoyed doing the same things he loved to do.

It was a huge turning point for us and continues to be. When I join Jakob in his world of Autism, he's more willing to join me in my world. The 3 hours every day that I spend with Jakob in his special room is by far the best part of my day. And every day before I walk in, I do whatever it takes to remind myself to be present and live those 3 hours to the fullest...100% there in that room with my Little Man who is always doing the best that he can...whether he's jumping on the trampolines or telling me to draw a barn with a cow, a dog, a pig and a cat and 4 flowers (always 4, never 3 or 5, always 4).

A great benefit of learning to really be there is doubt disappears...it just melts away. The doubt about if we're doing the right thing, the doubts about what our child can do, the doubt about what they see and what they know. We begin to truly believe in them...and we have to. As parents of these kids, we're the only ones that can and often the only ones that do. And if we don't believe in them, how can we expect them to believe in themselves? Do whatever it takes to believe...

Believing leads to faith...we discover a faith in what they're capable of, faith that all is truly well, faith that everything's gonna be ok and faith in ourselves that we are always doing our best and giving everything we have...do whatever it takes to have faith...

This whole process of being there, believing and having faith takes care of the future. All of a sudden there is hope for the future where before there may have been uncertainty. If we're believing in our kids, having faith in them and ourselves, and being present in the moment, we know that no matter what the future brings, everybody and everything is gonna be alright. And we sincerely and completely see our child and our situation as a blessing. Not only does our child get better, we do too.

As a parent of a child who is different, and that's all he is...different than most, I have become a better person and a better parent. I know the parents here tonight know exactly what I mean...we've all heard the sayings "God doesn't give you more than you can handle" and "God gives special children to special people" and "everything happens for a reason"...all of which may very well be true.

But the choice is ours as to what to do with what's been given to us. We can be angry about the rotten hand we've been dealt, we can feel sorry for ourselves, we can expect everyone around us to make it all better or we can decide that we're gonna make the best of every moment we have and learn the lessons that our children are here to teach us.

There have been so many lessons for me throughout this journey that have changed the way I see the world, what I think is important, what I think life is all about, who I really am and what I really want.

Jakob has taught me so many things...patience, compassion, understanding, acceptance, that different is more than ok...it's cool And he's definitely taught me that the world doesn't revolve around me...I am sooooo not in charge.

He's taught me that "stuff" doesn't matter...the house, the car, the handbgs and shoes...life is about relationships, loving, giving.

He's taught me that I can survive on 4 hours or less of sleep a night...

He's taught me to be grateful for everything in my life...to not focus on all the things I don't have but appreciate everything I do have.

I've had some pretty big reminders of that one this past week...I've seen some things at Children's that brought back to mind something that my dad used to say to me all the time..."no matter how tough you think you have it, there's always someone who's got it tougher"...

I'm sure that's something that those of you who work at Children's are reminded of every day and I commend you for having the strength to take on the jobs that you have. I'm always in awe of people who choose to make their life's work changing the outcome for others. I marvel at your ability to take on the challenges that other people face and do your best to make a difference.

I know it has to be hard sometimes and I'm sure you've asked yoursleves "why did I decide to do THIS for a living". (Hey...I ask myself that pretty much on a daily basis when my alarm goes off at 4am.."what was I thinking when I decided to do a morning show????"). But you get up and you do it. You do make a difference. You do change the outcome. You do help families like mine who are so overwhelmed and confused and unsure what to do.

For some of us families, you're all that we have. We parents know what tends to happen when you have a child that's "different"...friends, family, co-workers...they distance themsleves...they don't know what to do or say to help or make it better. You become our friends and family because you do understand, you care and you help. We need you, we appreciate all that you do. We're grateful you chose to make this your life's work and there are days when we don't think we could make it without you. And maybe we don't tell you that enough...sometimes we just get too caught up in our own crap. Sometimes we just need someone to be upset with. Sometimes we need someone to blame. Ya know, we treat you like we treat family sometimes. But know that there is always love here for you...and lots of it.

So please, continue to do whatever it takes to help families like mine. Help us know that we're ok and that our kids are ok...they just need a lot of love, understanding and patience. And help us know that everything's gonna be ok. We need you...we need your knowledge, expertise, compassion and your friendship. We need to be able to come to you with our deepest, darkest secrets and our fears and we need you to help guide us to the answers. We need you to remind us sometimes that nobody knows our children better than we do. We need you to help us feel calm, cool and confident amid the chaos that some days bring us. We need you to help empower us so we can believe and have faith.

Everyone in this room is facing a challenge...some by choice, some not. And it's up to each of us to decide what to do with that challenge. I hope for everyone here that you choose to face it with confidence that you are doing the right thing, that you're always doing the best that you can and that the children that you are here tonite representing are doing the best that they can too in a world that they simply see and experience differently than we do.

Thank you so much for giving me your time tonite, I've loved being here with you. I wish you nothing but the best in your adventure and I hope you continue to do whatever it takes to teach your children what we all as parents and caregivers want most for them...to experience, peace, love, joy and happiness. When you live in the moment, believe and have faith...all things are possible. Thank you.

Silly Fear

2008-06-15T19:53:00.000-04:00

Happy Birthday to me...wow, 30-something...doesn't seem that long ago that I was 27. On second thought, yeah it does. It was eons ago. I'm ready to stop counting...

For the most part, Jakob's recovery is going well. He's eating and drinking, peeing and pooping, no abdominal pain or fever. Only problem...cloudy urine and painful urination. Symptoms pointing toward a urinary tract infection. He's at his dad's and I'm waiting for the call that he's peed in a cup so I can take it down to Children's for testing. They recommended we take him to urgent care but we would've waited for days for him to pee there so we talked them into letting us collect the sample at home. I hope this goes smoothly, that it is just a UTI and we can simply treat it with antibiotics...

It's been a weird week for me. I've been caught between 2 worlds...the world of hospital living and the world of living at home. I've wanted everything to get back to "normal" but can't shake the need to constantly hover. I've sensed that he's still not quite feeling great...of course, I've been googling...never a good idea. I don't recommend that to anyone. The possible diagnosis for cloudy urine and painful urination are frightening. It's a UTI, that's it. I've decided.

This is one of those times that I need to follow my own advice and live in the present. I'm doing everything I can and worrying about stuff that I have no control over is not only useless but exhausting. Anxiety ain't fun. Life is supposed to be fun. So I'm having fun sitting here on my birthday, thinking about cloudy urine, damnit. This is fun.

Prior to the cloudy urine, I had decided it was time to really look at the lessons in this big adventure. The lessons...in a minute...I wish he'd pee already. I knew I should've taken a nap earlier. I'm still wiped. And now I get to make a trip to the ER with urine in a bag...and wait for the results, get the antibiotics and take them to him. I want it to be a simple process. I'd like a simple process. Really.

Here I go again, getting all worked up with worry. Let's talk about worry...gotta let go. Gotta focus on things that I have control over. I can control driving the urine to the hospital. I can control getting the prescription, I can control making sure he takes the meds...but that's it. So all I can do is that. All is well. Jakob is fine. He is. I know it. So enough worry...it's just silly.

I would be able to feel that at a deeper level if he were here under my nose...four deep breaths...ok, I'm good.

A couple of the big lessons...

Nothing is more important in my life than Jakob. Nothing even compares. Living in a hospital room for 11 days...no brainer. Not sleeping all night just to make sure he doesn't pull out an IV, no biggie. Remaining calm in the midst of chaos...if it means keeping him calm, easy. Taking everything as it comes, got it. Looking in his eyes, focusing on how he's feeling and what he's thinking...that's the best thing I can do for him. Everything else??? I can deal with all that later...the mortgage, work, email...later.

Another big one...I have wonderful family and friends. My Mom rushed to be here to help for 12 days. She just dropped everything to help me out and look after her grandson...she's gold. Dad was constantly calling to check in. My friends were calling and emailing like crazy. The Autism community was keeping track of us and sending out thoughts and prayers. There was so much concern for Jakob and me. It was so nice and it helped so much. We're very blessed.

It really was a big lesson in being present. No matter how tired I was or how scared I was feeling, when Jakob needed me to be there, I was present. When he woke up and was panicking from all the wires, the hospital room, the strange faces, the pain and the anxiety, I became incredibly present. I looked in his eyes, spoke softly and calmly to him, assured him everything was ok. I told him that I understood why he was so unhappy and I promised him that I would help make it easier. I was totally present with him and I know what a difference that made. Being present when he doesn't want to take his supplements is nothing compared to that. If I can hold it together during major drama, the every-day stuff is a breeze.

(a few hours later...)

Took the urine sample to Children's...now just gotta wait. Something about an initial screening and then having to wait 48 hours til we know for sure. Whatever. I guess if they're not all worried about it, I shouldn't be either. No worries, all is well.

I'd love to quote my psychic...I got an email from her today. Now there are some that think she's a little nuts. I'd call her eccentric, sweet, loving and kind. She's a good person with a huge heart and I dig her. Maybe she can see the future, maybe not. Either way, she often says just the right thing at the right time. She said, "Ok weird thought. Do you think of your son as other than a perfect way God is manifested? He will reach your expectations. And more. Expecting him to have a problem he can't fix is not asking him to reach. Be sure and don't limit him with your fear."

She makes a really good point. Jakob is perfect. I know that. Sometimes I need to remember that...like whenever I get caught up in the fear. The fear I experience now is nothing compared to where I was a couple years ago. The fear then was disabling. Now, I'll get a little anxious and start googling a little...that's nothing. Two years ago, I never would've been able to handle the past few weeks. I feel pretty good about that. We're both doing great.

Someday I'll share everything I told him in the hospital...I know my little speeches made a difference. And I know he's healing. All is well. I know. I really know.

Home

2008-06-09T19:43:00.001-04:00

Jakob came home last night and he was so happy to be here. He smiled, he laughed, he tried to jump up and down. He watched his favorite movies, sang along and giggled. It was so cute. He climbed gladly into my bed and fell asleep around 11:30. What a sweetie.

We're gonna have to keep a pretty close eye on him for the next few weeks and keep him relatively calm...no jumping around, no crashing. He's pretty skinny and kinda pasty lookin...that should improve pretty soon. He's back to eating and going to the bathroom as usual.

He's not with me right now and I'm not handling it too well. After spending 10 days straight living with him in the hospital, it's a little tough to not be watching over him now that he's home. It's pretty crappy...

It's gonna be awhile before I recover, I think. I held it together pretty well, all things considered, and now the adreniline has run out. I'm just gonna go to bed early tonite and rest up for my little buddy for when he comes home tomorrow. I can't wait to spend some quality, home time with him. Sweet dreams...

"Om"

2008-06-07T01:11:00.002-04:00

Friday night...day 9...10:45pm...

I'm so exhausted that I'm about to burst into tears...like the sobbing, uncontrollable, can't catch my breath, couldn't talk if I wanted to kind of tears. Sheer and utter exhaustion.

Jakob fell asleep about 15 minutes ago and I've been waiting to make sure he was really asleep before I got out the computer. I got weak this afternoon and I caved. One of the nurses brought in a laptop, Jakob saw it and was going for it. I was out of the room at the time and when I returned, my Mom was just grinning. Jakob had written on two different white boards "Mom, Computer"...I couldn't say no. The kid's in the hospital for crying out loud. He's been thru quite an ordeal. He knows I have it and he knows I can't lie to him and tell him I don't so I caved. More than 4 hours later, I got sneaky and unplugged it. My battery is pretty much shot so it only took about a half an hour for the thing to die. He looked a little sad but just shut it and sat back on the bed. He was having a pretty good time with Starfall.com but I was reminded why I hide it at home...there's no way anything I can do can compete with a computer.

And in all honesty, I was too weak and too drained to do the song and dance routine to keep him happy. Granted, it may not have taken much to entertain him but I am so far past wiped that I don't have an ounce of that kind of creativity in me. The computer gave me a break. But not tomorrow...computer will be gone.

It's looking like we're heading home Sunday night. They'll give him his last dose of antibiotics, take out the picc and we'll be on our way. Of course, only if everything continues to go smoothly which I believe in my heart it will.

He ate 2 hot dogs and several little bowls of cereal today and he drank some water...finally. So we were able to take him off the IV fluids. That made us both happy. He's not nearly as restricted and can get up and move around pretty easily. Today was the first day that he really had pretty good balance while standing up. He's been pretty wobbly and he kinda leans forward. You can tell he's sore. Tonight he really whined when he peed...the doctor is having us watch him. He thinks it could just be some internal soreness from swelling in his abdomen. A UTI is possible too but we're not seeing any of the other symptoms for that. Wait and watch...2 of my favorite things to do.

Now I'm really close to an ugly cry...where my whole face scrunches up and either I start snorting snot or it runs all down my face...we're supposed to have a patient attendant here and it's not looking like we're getting one...which means I'm up again all night. I don't know if I can do it, I really don't. This is too much. I think I've already overdosed on coffee and diet coke...the caffeine isn't working anymore. Bawl like a baby or get pissed off...tough decision...neither one will solve the problem so why waste the energy.

I'm just so glad that Jakob is doing so well. This whole event has had some scary moments. He's so strong and such a little trooper. He's really done so much better than I could've ever imagined under the circumstances. I give most of the credit to Son Rise. He's just so much calmer now, so much more easy-going, so much more tolerant and patient and connected to people. I'm so proud of him. We've barely even had to give him any meds for anxiety...none in the past 30 hours. No pain meds in at least 12. I'm so proud of him.

Sleep is over-rated, I'll sleep when I'm dead...sleep is over-rated, I'll sleep when I'm dead...my new mantra...and it's not working.

We had an attendant last night...and Jakob was up til 1am. So, I got 4 hours sleep. A record for our stay here, I think. And the girl we had was so cute. She spent the night coloring with Jakob's markers little signs for his door...his name, a rainbow, some clouds. She was sweet...why the hell didn't they send her back here tonight????????????

Positive thinking, positive thoughts. There's always somebody who's got it worse than me...Jakob is recovering, this too shall pass, we'll be home in 48 hours, I'm wearing a cool shirt.

I had a ball last night at my speaking engagement. It went pretty well. Considering I wrote the majority of my speech during my last sleepless night, I felt pretty good about it. If I would've had just one more hour, I think it could have been better...next time. I'll try to do a little editing to make it more print-friendly and I'll post it soon...I think I'd fall asleep if I tried to do it now. If I'm gonna write, it has to be new material.

Maybe I should just cry and get it all out...but crying is tiring and would just make it worse...sleep is over-rated and I'll sleep when I'm dead...

He's been sleeping for over an hour now and hasn't moved a muscle. It's at the point that I think the likelihood of him pulling anything out is slim but I just can't risk it. And I know if I did leave him unobserved and allowed myslef to fall asleep, I'd either be really restless from feeling like I wasn't doing the right thing or I'd pass out so deeply that I wouldn't be able to wake up if I needed to...either way, laying down is a bad idea.

(Saturday,,,1am)

A very kind nurse just came in to sit with Jakob so I could go downstairs and get my 8th cup of coffee today. I gave up coffee months ago (occassionally, I'd have one) but this past week, I've been back big-time. I just haven't known what else to do or try. Light and sweet...an extra large, please.

I've had so many friends call and send emails this past week, all sending their thoughts and prayers. Even got a bunch from people I've never met...so very nice. I feel so blessed to have so many people thinking and caring about my little guy. If you were one of them, thank you. I know that all that thinking and praying really works. I appreciate it so much.

I've made a decision...I'm gonna put down the computer, sit here in this rocking chair and go on a rampage of appreciaton...nothing can beat that. I'm gonna just rock back and forth and think about all the things I'm grateful for...it's a very powerful exercise...I may even throw in an "om" here and there...like "om, I'm so grateful for my king size, memory foam bed at home that I'll be sleeping in only 48 hours from now...om...amd laying next to me in that bed, a happy, healthy 6-year-old boy who's feeling great...om"...

Who Needs Sleep??

2008-06-05T06:45:00.001-04:00

Day 5...I think. Yeah, it's Tuesday...10pm. As the rest of the Tri-State runs to the basement to hide from the tornadoes, I watch a sweet, innocent and confused little guy sleep.

He's definitely feeling better, I think. It's just so hard to tell...one minute, he's smiling. The next, he winces. According to the doctors and nurses, medically he's doing just fine...no fever, his abdomen is soft, he's passing gas...but, they've got him back on fluids. He's not eating or drinking anywhere close to enough...don't like that.

The pic line went in last night and I can tell it'll make life easier for him but it's annoying him. We have to watch him every second, even when he's sleeping, so he doesn't pull the darn thing out.

I'm tired, no doubt about it and I still have my moments of near-panic. At this point, it feels like it's more about the Autism than it is the surgery. He's healing but he wants to go home and doesn't really care why he can't. The only time he ever wears shoes is when he goes somewhere...today he was asking for his shoes and pointing to the door.

A hospital is pretty much sensory overload all the time. People coming in, checking stuff, poking at him, sticking stuff on him. There's tons of noise with all the equipment beeping, lights flashing, people talking, different people in and out. I've been pretty impressed with his ability to deal with all of it. The tricky part is getting him to stay asleep...he's a light sleeper and the poking, beeping and talking can wake him up pretty easily. And once he's up, he can be up for awhile. He's tired too.

He's been able to stand on his own for a minute or two and has taken a few steps. We put him in a wheelchair tonite and took him for a ride around the floor. He liked that a lot but sure didn't wanna go back to the room. He shed some pretty big alligator tears. I hadn't given him any anxiety medication in well over 36 hours but I whipped it out tonite. I don't like drugging him but I know there's a line on how much frustration he can take. I want to avoid getting too close to that line as much as possible...better safe than sorry. And the stuff we're giving him ain't all that powerful and it's only for while we're here, I know he won't need it once we're home.

They told us today that we'll for sure be here til Sunday or Monday and I'm ok with that...actually, I think it's great. Once again, with the pic thingy, the antibiotics, the risk of an abcess and everything else...better safe than sorry.

This past week will be going on my list of craziest weeks ever. A new and different experience.

Sometimes, I think back 10 years ago and remember what my life was like. I never would've guessed I'd end up here. I never would have imagined being a Mom let alone a Mom of a very special little boy. People who knew me 10 years ago wouldn't recognize me now, I'm so totally different.

That used to freak me out a lttle but not anymore. I really love my life the way it is. I don't miss the parties, the drinking, the wild weekend trips, the concerts, the bars, the clubs, the hangovers...the whole scene. I mean yeah, it sure was fun, we had a ball and it was great but this is really great too. I love taking care of Jakob and doing everything I can to help him be happy. I love my Autism families that I get to spend time with. I love doing things in the community like help plan a walk or speak at an event. There's nothing else I'd rather do. I know that's tough for some to believe, but it's so true. I've found my purpose and I love, love, love it. Ya know, they say when you find your purpose, you can go, go, go without getting exhausted or bored or annoyed. I get that. Got my purpose, just need to define exactly what I'm gonna do with it...

Little Man is now receiving his super-power antibiotics thru his new pic line. I'm hovering in the dark, keeping an eye on all 10 fingers. We're half-way there, only 5 more days...it sure is easiest when he's sleeping...

Wednesday, 2am...

Well, I thought that maybe I'd have some time to write during this hospital stay and I've gotten my wish...

I've now been up 21 hours straight with no relief in sight. We're supposed to have a patient attendant with us at all times but she got pulled at 8:45 last night and hasn't been back. Jakob's father called at 9:30 and was supposed to come back to the hospital but I've not heard from him. It's me and Jakob all alone and he has to be watched at all times. So...here I sit in the dark with my laptop...party is on.

I'm supposed to leave for work in about 3 hours but it doesn't look like that's gonna happen if there's no one here to be with Jakob...plus, I don't have a car...guilt is setting in. I have to remind myself that there's no place more important for me to be than right here...and certainly, my co-workers are more than capable of handling it without me while we go thru this.

So many of the Autism Moms I know are able to stay home...or choose to or have no choice. I try to imagine what that would be like. Sometimes I think it sure would be a lot easier to only have to focus on Jakob and the house. Then I have days when I think wow, never a break from Autism and the house. I go back and forth. I'm just so very lucky to have people at work who understand and are compassionate about our situation. I know plenty of Moms who works in places with people who aren't that way.

Work has been another place in my life that has experienced a big shift in the past 10 years. When I was in my 20's, I was the girl on the radio who was at every happening club, dancing on the bar with the microphone and buying everybody shots. I was skinny with new boobs. I was hosting male reviews. I signed off every day by saying "I'm heading out for a cock....tail, straight-up".

Now, I'm the Mom with the "special" child who loves to host fundraisers and give speeches about Autism. Once again, I'm totally cool with that. I do have times though when I feel like I'm not doing my part...I don't make it to every Party at Sawyer Point or every concert or station function. I can't drive around every afternoon in the Whatever It Takes RV. My schedule is tight and pretty inflexible. It's during those times that I have to remind myself what it's like to give one of those speeches or host one of those fundraisers. It's the right thing for me to do and I'm doing what I'm best at these days...that counts for something and I hope it's making a difference...I sure want it to.

I'm hungry...

Thank God this hospital has Starbucks...

When do the donuts from Busken get here???

But it's funny...that whole purpose thing, I'm physically drained but not too slap happy. I dig this writing thing. I'm giving a speech Thursday night and I got most of it written while I've been sitting here...at least I'm getting things accomplished (in addition to keeping an eye on the most precious thing in my world and keeping him safe...mulit-tasking at its finest).

Jakob sure does move around a lot when he sleeps. I think it's a hospital/appendectomy thing. He usually sleeps with me at home and I never notice this much activity...good thing I'm watching...he has plenty of opportunities to start grabbing at stuff...

I wonder what I'll be like tomorrow (later today) when he wakes up. I sure hope I can be alert and on my best game so I can entertain him and keep him happy. I know there will be other people here that he loves but ya know, there's nobody like Mommy. He loves the silly faces and sounds I make. He digs animation and I don't think anybody's as animated as I am...maybe I should have gone into the theater. I did wanna be a dancer on Broadway. I took 11 years of tap dance, ya know...someday, I'd like to be just famous enough to be a contestant on "Dancing With the Stars"...

One thing that's been great while we've been here, he's only saying "no" one time instead of 4...it's so cute but getting a lot of use. No matter what I ask him, he says, "no". "Jakob, do you want a movie?"..."no"..."Do you want a drink?"..."no"..."Do you want some O's, a banana, a hot dog?"..."no, no, no". "No matter what I ask you, are ya gonna say 'no'"...."no". Makes me laugh.

His one front tooth is so loose. It's gonna be gone any day now. I hope he doesn't swallow it. I'm really gonna miss those 2 baby teeth. I've always loved that big space between them. And baby teeth are so cute. When the big ones first come in, kids look more like walruses than kids. Maybe I am getting slap happy.

I gotta get this kid eating and drinkiing soon. I want him off IV fuids. I want him off this machine. If he'd eat and drink, he'd only have to be hooked up to this thing twice a day for 30 minutes getting his antibiotics. Then he'd have the freedom to run around a little bit. Well, not exactly run around since he's only been able to take a few steps.

I haven't been home in almost 6 days and the clothes that my sweet Mom has been bringing me aren't my finest. No make-up, no curlers, no conditioner, no razor, no tweezers...a bra with underwire. I hate underwire...so not comfortable. I'm not feeling pretty.

I bought matching shirts for Jakob and me at the gift shop today.."Team Cincinnati" 3/4-length t-shirts...so groovy. I love Nick Lachey, ya know. I have a pair of his pants.

I can only imagine, when this is all over and Jakob's back home and everything's back to normal, how far behind I'm gonna be on everything. I know when we came here, my to-do list was pretty out-of-control and there's stuff that needs to be added to it. Oh well, I'll get done what I can when I can...not much else I can do.

I wonder if the reason Jakob's father is a big fat no-show is that a tornado picked him up and carried him away???

I had a couple quick glances at the weather reports but I really don't know what's been going on. I've been pretty detached from the outside world for the past week. And I don't miss it one little bit. I don't miss television. Sitting in front of that box and getting caught up in other people's lives or made-up lives just doesn't do it for me anymore. I do like to watch Ellen and Oprah every once in awhile and I do love "Dancing With the Stars" but that's pretty much it. And I do want to do dirty things to David Cook...but I don't know if that counts.

I put out flyers looking for volunteers for our Son Rise Program and I've gotten a couple calls. That'll be fun to get rolling on. I know a big reason that all of this has gone as well as it has is Son Rise. He's calmer, cooler and more able to take all the craziness. I'm so proud of him. I know 6 months ago, we would've been dealing with a completely different kid...one who would've been throwing fits for the past 5 days. He still picks his nose and eats it tho...I think he does that just to make me queasy...it's the one thing that gets me every time...even tho I don't react to it, he knows.

I think he's so squirmy dues to gas. Apparently, passing it is a really good sign following any kind of GI surgery. I know he's having gas pains...he'll wimper a little and then ta-da...then he smiles...not as big of a smile as when he does it in the tub but a smile nonetheless.

2:45...only 4-5 hours until Mom gets here...where's that Starbucks and has anybody seen the Busken truck?

To the ER

2008-06-03T10:52:00.000-04:00

I think it's Saturday...yeah, it is. We're in Chilldren's Hospital, we came to the ER Thursday around noon. At around 11:30 Thursday night, Jakob had an appendectomy and it was messy. It had burst and they did their best to get it all cleaned up.

We're gonna be here at least 10 days pumping some big-time antibiotics in him to fight infection. And we gotta keep an eye out for an abcess...since it had burst, there's a good chance they didn't get all the fluid out and it could form an abcess. If that happens, it'll present just like the appendicitis and they'll have to go in to drain it.

I could go on and on with all the details but I don't think I will...it's kinda overwhelming and tiring. But I feel, at this point, that we have a pretty good handle on everything...as good of a handle as possible.

Darnit anyway. I knew. I did. I suspected it when the vomiting kept going. And how weird is that? A kid's throwing up...doesn't everybody think flu? Or food poisoning? Not me...I thought appendicitis. It was my gut telling me, that whole motherly intuition thing kicking in and again, I didn't listen. Just like the Autism. Lesson learned, difinitively...listen to intuition, that inner voice. Screw common sense and analyzing....I got a higher power than that at work and it's a lot easier just to pay attention to that. Lesson learned. Darnit.

So here we are, in the middle of another big adventure. And as with everything, it's as hard as I decide to make it. I will admit that this challenge is a biggie and I've found it to be, well...challenging. I've had my knots-in-the-stomach, wanna vomit, light-headed, borderline panic attack moments. Like when we were home before we came to the hospital, in the car, in the waiting room, during the testing, during the surgery....safe to say that there have been more than a few times that I haven't felt very well. I feel my best when Jakob's sleeping and I can just look at his sweet little face and watch the monitor...heart rate 119, breathing 98%...all is well.

The first time he really woke up after surgery was our roughest moment. He opened his eyes in a strange place with strange sights and sounds and he was hurting. He had an IV shoved in his arm that was wrapped heavily so he couldn't get to it and attached to a board so he couldn't bend his arm. He had a catheter, a monitor attached to his toe and more monitors on his chest. There are 3 holes in his belly that are taped up. It was sensory overload. His pain meds hadn't kicked in yet and he really really really wanted all the stuff "off". To put it lightly, he was freaking out...understandably. All I kept thinking about was Sally Field in "Steel Magnolias"....I totally saw myself running back and forth at the nurses' station, screaming "my son needs pain medication and get me something to relax him...NOW". He kept reaching for everything, trying to yank stuff out. And he was in obvious distress, totally confused. I knew I had to stay calm since he would just get more panicked if I was...not sure how good of a job I did with that. He eventually calmed down, I think just out of pure exhaustion and we eventually got him all the meds he needed.

Since then, we've had a few bouts with the IV, he keeps getting the thing off his toe and if we don't watch him closely, he'll mess with the incisions. Gotta keep him distracted as much as possible...good thing I didn't get rid of all his DVDs...

(Sunday morning)

Today he gets a chest x-ray, his breathing isn't where it should be and we'll be gettng him up and moving around as much as possible. Now that we've cut back on the morphine, he's awake more and we have to scramble to keep him occupied. Thank God, my Mom is here...she's good at keeping him busy and she moves quickly, fast is critical.

I think he's in some pain, he's obviously tired but not sleeping too great. It's probably from coming down from the morphine and he's a light sleeper anyway. There are always people coming in and out of the room and lots of noise in the hallway. He's about half-asleep right now with the sheet pulled over his head. The attached monitors and the IV are really bugging him and that's not helping either.

He's been so good, really, all things considered. He's just so sleepy and he's weak. Every once in awhile, he points to the door and says "that way". He's ready to go home and I can't blame him one little bit. We're doing everything we can to surround him with his favorite stuff and we'll see in the next day or two if it's working.

I had to laugh...there's a white board in here where they write all the nurses names. He noticed it yesterday when he was still pretty out of it. He pointed at it and said "bipe" (wipe)....pretty funny. So needless to say, we are on our own to remember everybody's names.

I can't say enough about the staff here, they've been really wonderful. They probably think I'm a little nuts but I"m sure I'm not the first Mom to pace around asking a ton of questions. I've asked if boogers count as solid food, why the DVD player is in French and if there's a special room for ex-husbands who snore really loud...those may be new ones but I'm not sure.

(Sunday night)

He ate some Perky O-s about an hour ago...yay! First solid food...good sign. Now he's passed out cold. We had him up for over an hour this afternoon. He still can't stand on his own and struggles to sit up straight and hold his head up but he's definitely getting stronger. If he wakes up again (which I'm sure he will), we'll get him up again.

In all honesty, I'm sitting here pretty pissed off right now. There's someone in the room who refuses to listen to me. I want the tv off when Jakob's sleeping...it's proven that sleeping with the tv on affects the quality of sleep and this person is being a real ass about it. I'm taking deep breaths and doing my best to relax...#*#**

I gotta give my little man a lot of credit. He's really doing great, better probably than I would do in the same situation. It'll be interesting to see what happens when the meds wear off...I'm not sure how big of a role they've played in his ability to deal with everything...I'm guessing significant...

I'm finally starting to feel tired. I've been running on pure adreniline for 5 days now and it's all catching up with me. I've finally hit the point where I feel everything's gonna be ok and I'm relaxing. Each little step along the healing path lightens the load...he drank water, he sat up, he peed, he spoke, his fever broke, the swelling went down, he passed gas, he went 5 hours without morphine, he slept for 3 hours straight, he pooped, he ate! Talk about appreciation...I've been appreciating a lot. A stay at Children's Hospital will wake anybody up who thinks they've got it rough.

I remember my Dad always saying to me when I was kid and I would complain about something, "there's always somebody who's got it tougher than you". I've always remembered that and I've really witnessed it these past few days. How these parents do it, I'll never know. There are some unimaginable stories here and the people who work with these kids are amazing. Don't know how they do it either. And then I look at the kids, bless their sweet, innocent hearts.

More to come...

May 28, 2008...poor buddy

2008-05-28T01:34:00.001-04:00

So...it's 1am and I'm watching him sleep on the couch. It's actually been about 12 minutes since he last vomited and I'm poised to move if it happens again.

Now I know why he was so darn sweet all afternoon! He was all snuggly and cozy...seemed to feel ok though. No fever, he wasn't cranky. I was thrilled that when he was telling me "no" he only said it 2 times instead of 4. Poor little buddy. It started at about 8:45 and has been continuous. He's soooo exhausted and I'm just sitting here feeling pretty helpless and pretty darn tired myself.

I just keep watching...wondering.

This is the tough part, always has been. Is it simply an upset tummy? Is he having any severe pain? I would think if he was really hurting, he'd cry, right? Well, he ain't crying. Food poisoning? All he eats are bananas, hot dogs and Perky O's...

Sure would be nice if he could tell me. I find great solace in the fact that he'll be able to tell me soon...we get closer every day.

So now I have a big decision to make...he hasn't thrown up in 19 minutes...do I try to fall asleep next to him on the couch or do I keep watching?? I have to get up to go to work in less than 3 hours...what to do, what to do...

He just moaned...better grab a towel...there will be lots of laundry to do tomorrow, that's for sure.

Seriously...how do people do this with more than one???????????

Yup...I'll be up awhile yet.

Another frustrating part...and this is gonna be a bit graphic...but he doesn't really grasp the whole throwing up thing. I keep telling him to "get it out" but he keeps insisting on trying to swallow it. Fun, huh? He makes it harder on himself and there ain't much I can do about it. Poor buddy.

Watching this reminds me of those nights I mixed tequila shots, purple hooters, buttery nipples and sex on the beach...only instead of on the couch, I was laying on the cold bathroom tile....and swearing I'd never do that again.

How much bile can there be?

I've already googled "vomiting no fever" and I shouldn't worry for about another 12 hours...unless other symptoms pop up...

I'm just gonna keep on watching...probably wouldn't be able to sleep anyway...

May 25, 2008..."NO"

2008-05-25T22:12:00.001-04:00

Little Turkey. He is. Ornery to no end and letting me have it.

I got back from L.A. Thursday night after being gone since early Sunday morning (American Idol finals). He was in the tub when I got home and seemed genuinely happy to see me. Then a light bulb went off in his little head...he remembered that I had left him for 5 whole days and he was gonna make me pay.

Friday and yesterday were a treat. No matter what I did or said to him, I heard "no". Sometimes, he only said it once, sometimes 4 times, sometimes in combination with an emphatic shaking of the head and occasionally with a scream. I had to laugh when I was sitting across the room from him not doing or saying a thing and he just turned and looked at me and shouted "no". I just put my hands up in the air and was like "dude, I didn't even ask you a question". I guess he was just letting me know that no matter what I did, he was all about "no". I'm so grateful that he's gotten so much practice saying the word...he's almost got it.

Him being a little turkey butt after me being gone a few days is nothing new. This has happened before. Each time, the behavior I see is slightly different but the sentiment is the same.

I've been gone a lot in the past 7 months...5 times to be exact. Anytime from 3-7 days. In all honesty, this time rocked me a little. The other 4 times, I came back with new tools and tricks for dealing with his Autism. This time all I came back with was sleep deprivation and a crush on David Cook. I wasn't very well equiped to handle the defiance. I was tired and really felt like the re-emergence back into our little world was like a frying pan to the face. It hurt. And it really annoyed me that I wasn't handling it as well as I knew I could.

I have done my best to remain calm and present but it was a struggle at times. Certain quotes that I've read have been popping into my mind as I take a few deep, cleansing breaths...

"This too shall pass"

"As a man thinketh, so shall he be"

"Energy flows where attention goes"

And all the stuff about Jakob sensing my mood and where my head is at...there's no faking with him.

I'm feeling pretty good now and I know that tomorrow is another day. I will do my darndest to be completely present and accept him right where he's at...even if it is No-No-No-No Land. And I will always look for all the good stuff he's doing....did I mention that he's almost saying "no" perfectly??

I also know that we've been a little out of our routine for the past couple of weeks and we gotta get back on track quick. This week, I'm gonna go full-force looking for volunteers and fine-tuning his program. Just gotta do it. And when I do, all will fall right back into place. I know in my heart-of-hearts that all is well....actually, better than well. All is great.

May 11, 2008...Mom's Day

2008-05-11T20:19:00.003-04:00

Happy Mother's Day!

It has been an emotional week. I'm still in a bit of a fog following our walk last weekend. When ya pull a wonderful group of people together and plan and plan and plan a first-ever walk, you just never know what's gonna happen. We kinda just did what we thought we should do and we crossed our fingers. Well, it worked. In the rain, we had somewhere around 5000 people show up and we raised close to $400,000...not bad. Had it been a beautiful day, I think we could've had 10,000...probably a good thing it rained...not sure if we would've been ready for that!

It was really something to see the community come together like they did. One thing about Autism, there are so many times that as a parent, you feel so alone. No one felt alone that day. It was so awesome to see this huge group of people all there to support us. It was definitely a "wow" moment and I can't wait until next year. Now that we have our feet wet (literally), we know what to do next time and we know where to tweak a little. Very, very cool.

I thought that after the walk, things would slow down a little...not quite the case. A little room to breathe would be nice...someday soon.

In the meantime, a couple of quick things to share...

The Enquirer ran a very cool article on Jakob and me, here's the link:

http://news.enquirer.com/apps/pbcs.dll/article?AID=/20080428/LIFE/804280301/1035

And for Mother's Day...this is one of my all-time favorites...makes me tear up every time.

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice,
a few by social pressure and a couple by habit.

This year nearly 100,000 women will become mothers of handicapped children.
Did you ever wonder how these mothers are chosen?

Somehow I visualize God hovering over Earth
Selecting his instruments for propagation with great care and deliberation.
As he observes, he instructs his angels to take notes in a giant ledger.

"Armstrong, Beth, son. Patron Saint, Matthew."

"Forrest, Marjorie, daughter. Patron Saint, Celia."

"Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."

Finally he passes a name to an angel and smiles. "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel."

"But does she have the patience?" asks the angel.

"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off she'll handle it."

"I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.
She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.

I will permit her to see clearly the things I see--ignorance, cruelty,
prejudice--and allow her to rise above them.

She will never be alone. I will be at her side every minute of every day of her life
Because she is doing my work as surely as she is here by my side."

"And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles.

"A mirror will suffice."

April 30...Jakob needs you

2008-05-01T14:06:00.002-04:00

Ok...I'm ready.

It's time to grow our little Son-Rise family and I'm looking for volunteers to come to my house to play with Jakob. Now that I am fully prepared to train people, give feedback and run team meetings, I'm looking for some people. We want loving, accepting, nonjudgmental people with a ton of energy, excitement and enthusiasm who can commit to 4-6 hours per week in the playroom with Jakob for a minimum of 6 months.

No experience is necessary, I will train you.

It's a ton of fun and a life-changing experience for everyone involved.

If you or anyone you know is interested, please email me at jenn@wkrq.com and I'll be in touch!!

It's time to take this miracle-working to a new level!!

Thank you!
j

April 27, 2008...is it hard

2008-04-27T19:50:00.002-04:00

The other day, I did a tv interview about Jakob, Autism and our Autism Speaks Walk. I loved it for obvious reasons...publicizing the walk, bragging on my kid and raising awareness about Autism. The anchor asked me one simple question about raising a child with Autism....she asked, "Is it hard?".

Simple question...complicated answer. And I've been thinking about it for the past few days. I don't even remember how I answered it (haven't watched the tape yet), but I do remember thinking fast on my feet and trying to come up with a short, comprehensive answer (since I know how the darn media is, short answers are what they're looking for). No matter what I said, it wasn't enough so I really want to write about how "hard" it is...

Is it hard?

Yup...hardest thing I've ever done. Changing the way I think and changing beliefs I held and changing the way I see the world...hard...took (and continues to take) work.

Most challenging thing I've ever done. Going after what I wanted was never tough for me. Usually after figuring out what I wanted, I could figure out pretty easily how to get it. And usually it didn't take me very long so it never required a whole lot of patience. I knew what I wanted here...for Jakob to be happy. But I had no idea how to make it happen and it seemed nothing I tried worked. It took everything I had to keep trying...and keep trying. This challenge wasn't easy...it was hard.

Most exhausting thing I've ever done. Never a peaceful moment. Constant movement, constant thinking, constant worrying, constant running. Constant, constant, constant. Never time to kick back and relax. Never any sleep...(and the sleep I did get wasn't good sleep...tossing, turning). Tired and cranky all the time...both me and Jakob. Yup...that was hard.

Scariest thing I've ever done. Not having any clue what to do next or what therapy to try was scary. Not knowing what was going to happen to us in the future...institution??? Scary. Yup...fear is hard.

Most frustrating thing I've ever done. Ya know, all of us learn how to parent from our parents and how they raised us. Some of us had rough childhoods and make a conscious decision not to parent like our parents did but most of us eventually turn into good-old mom and dad. Well, my parents didn't parent a child with Autism...ain't no book for that. Every trick that I could've tried didn't apply to Jakob. I had to learn a whole new set of rules. Not knowing how to do it was frustrating...so yup, that was hard.

Overwhelming, maddening, depressing...have I mentioned exhausting? I could go on...

Yeah, it used to be hard...very, very, very hard. Then the day came when I decided enough was enough, life ain't supposed to be this way and I no longer wanted to live like that. That's when I started to breathe and trust my gut. I knew that there were answers out there for Jakob and me and I knew I could find them. And I also knew that this whole life experience would be as much fun as I was going to make it and that it all was happening for a reason. I knew there were lessons in this that I needed to learn and I was determined (and still am) to figure out every one of those lessons. Life's not about the destination, it's about the journey, right? I made up my mind that I was on one heckuva journey and I was going to enjoy it and do everything in my power to make sure Jakob enjoyed it too.

So the journey truly began for me a little over a year ago and I gotta tell ya, I'm digging it. I still face challenges and I still stuggle sometimes but I don't get so wrapped up in it that I get lost in it. It's liberating.

Simply put, "hard" is really no more than the opposite of easy. And I'd always been told that nothing worth having comes easily. So thru all the struggles, the pain, the anxiety and all the other negative emotions came something worth having. I have an amazing child whom I would never change or trade for anything. He is the light of my life and my greatest teacher. I was born to be his mother and he chose me to be the one to take care of him and to help him.

Another thing to remember is...it ain't about me. None of this is. It's about him. I can guarantee that no matter how "hard" any of it was for me, it's been at least twice as hard for him. He's the one living in a world that he doesn't understand. He's the one with gut issues and doesn't feel well. He's the one who couldn't communicate. He's the one who no one understood. My little "hard" issues were nothing compared to that.

I have a job to do. A job that I take on with great passion, love and understanding. It's my job to help him make sense of this world he's living in. It's my job to make this world seem like so much fun that he'll want to join me and everyone else in it. It's my job to help heal his gut and rid his body of toxins so he feels better. It's my job to give him a bath, brush his teeth and put him to bed at night. It's my job to get into his head and his world so I can help him make sense of everything he's experiencing. It's my job to love every little thing about him. It's my job and I love it.

So when she asked me if it was hard, my first thought was "it's as hard as we make it" but I knew I couldn't say that without a lengthy explanation....so above is a short-in-length explanation. The long explanation will come someday in book form...all the details of the journey will be shared...there are lots of details.

In the meantime, wanna know what he did last night? He was in the tub, happy as could be with the warm water all the way to the top. He was sitting there, looking at me, smiling and I was talking to him about how he can be, do and have anything he wants in life. And as he was grinning at me, he cupped his hands and splashed me right in the face. I was soaked. And I didn't want to react but it was so hard not to laugh so I just sat there with my eyes shut for a few seconds. When I opened my eyes, he had this huge smile on his face and he leaned over and pulled the plug in the tub. I guess what he wanted to do more than anything in his life right then was get Mom good...and he did. Once again, he proved me right. Little turkey.

April 20, 2008...just a little video

2008-04-20T17:45:00.002-04:00

We have another outreach tomorrow with our child facilitator, Susan. I love these outreaches. It's so helpful to see someone play with Jakob...someone who's been practicing the 3 E's (energy, excitement and enthusiasm) with kids on the spectrum for more than 10 years. She's really something.

So...I've posted a few videos from her last visit, 2 weeks ago. Pretty good stuff (if you can forgive the camera-work). In the beginning of the "joining" one, you cannot see Susan, just know that she's doing exactly what he's doing and loving every moment of it...his reaction to the joining is what I just love.

Enjoy!!

http://www.youtube.com/watch?v=Nm3fhFBPe_g

http://www.youtube.com/watch?v=X_cIHAF1HeQ

http://www.youtube.com/watch?v=Khc2PV-CCXQ

April 18, 2008

2008-04-18T18:53:00.001-04:00

I'm sitting in my room at the Sheraton Airport in Hartford. It's Friday and my week at the Autism Treatment Center of America in Sheffield, Massachussetts has come to an end. But, I will return and I look forward to seeing some of the amazing parents that are on the same jouney as I am in November.

I've been wanting to write all week. I just didn't know where to start. I found myself in a bit of a fog as I just took it all in...the information, the emotion, the inspiration, the realizations and the never-ending hope for the future. There was something different about this trip compared to the last. This time, I was in a room with 85 other people who were all knee-deep in a Son-Rise Program. Over 60 children were represented in that room and every single one of them had made huge gains...regardless of if they'd been doing the program for 3 weeks or 3 years. Some were so very close to recovery.....yes, recovery.

At the very end of the program today, we all gathered in one big circle and just looked around at each other. For the first time all week, my eyes filled with tears. Such an amazing group of people...moms, dads, step-parents, siblings, grandparents and volunteers. They were all there dreaming big dreams for the children they loved and knowing that all things are possible.

I looked at the mom who was there for her 31-year-old son and felt so inspired...talk about never giving up. She was amazing. And she was there with her 28-year-old daughter...wow, what a family.

Then there was the mom with the 2-year-old son who has only been doing the program for 3 weeks. I was so happy for her. She's found Son-Rise so early in the game. She won't have to go through what so many of us do...the searching, the struggling, the fighting, the stress, the fear and the anxiety. Lucky girl, lucky little boy. I can't wait to hear updates on how they're doing.

The respect I have for every person in that room is immense. I know the strength and conviction it takes to go against the grain and follow what they know in their gut is the right thing to do for their child. I wish that for every parent living with Autism. I can speak from the heart when I say what a wonderful feeling it is to just do it...decide to do it and take that leap.

Every parent in that room celebrated everything about their child...I didn't hear any whining, moaning, groaning or complaining...so refreshing.

I heard stories of kids who were completely non-verbal just months ago now speaking in 3-4 word sentences. Kids who once had an interactive attention span of 30 seconds now interacting for 30 minutes. A four-year-old who was totally exclusive all the time now always wanting to be with his mom and dad. A six-year-old who could've cared less about who was in the house with him who now greets his mom at the door with a smile.

I just spent 5 days in a place where miracles happen. A lot of miracles.

I got to meet the parents who created the Son-Rise Program for their "severly autistic, incurable, hopeless, doomed-to-be-institutionalized son". Bears and Samahria Kaufman...they did it. I've met their "incurable" son, Raun as well. Super-neat, way cool family. Throw in Raun's sister, Bryn and her husband, William and you have a bunch of unstoppable forces of nature. Wow. Seriously, wow. Maybe someday soon I'll be able to say more...but for now, wow is the only word I can come up with.

I can't wait to get back in the playroom with Jakob tomorrow. I've learned so much more about what to do and how to do it. I can't wait to see and talk to the wonderful volunteers who have been working with him....I have so much to share. I can't wait to find and train more volunteers to play with Jakob...I have so much to teach them. And Jakob has so much to teach all of us.

As excited as I was after my first trip here...we can now triple that excitement...at least triple.

By George, I've found it. I looked and I looked and I looked and I found it. What an awesome feeling.

April 7, 2008...it's working!

2008-04-07T21:28:00.001-04:00

So neat, so cool, I just dig it.

We had another Son Rise Facilitator Outreach today and wow, the kid is doing great!! We made a list of special changes...wanna see?? Ok! I'd be glad to share...let's start with vocabulary. When we started in January, he said "up" and that was pretty much it. Now he says "bubbles, Mom, move, black, blue and bounce"...all clearly! And there are soooo many words that he's soooo close to saying. It won't be long and he's trying so hard. He's definitely understanding the value of language. It' so cool.

And he's giving us so many green lights, so many opportunities to introduce him to new activities. He's developed such an interest in interacting with us that he's open to trying different things.

He's so much more flexible. He's lightening up and being less rigid.

We're getting more and more eye contact every day and he's looking longer. He's engaging us!

And...he's ineracting for longer periods of time. He'll stick with an activity with us for 5, 10, 15, 20, 30 minutes...sometimes even longer.

He was so funny the other night, I cried I was laughing so hard. He's loved to draw rainbows for the longest time. One day, a while ago, I drew 2 moons and made a rainbow with that...he titled it "Moonbow". So then we did a starbow and a sunbow. We've been drawing these "bows" for weeks. Well, the other night, I drew 2 cows...then 2 dogs...then he took over and drew a pigbow, catbow, fishbow, turkeybow, frogbow, lizardbow and a snakebow. He'd draw the animals and hand me the crayons that he wanted me to use to make the "bow" and then he'd title it. He started a turtlebow but was so tired that he was almost falling asleep. I promised him that he could finish the next day and he agreed to come upstairs and go to bed. So frickin' cute. He was coming up with all the animals on his own...I'm tellin' ya, he's brilliant!!

Oh yeah...and he's given up cookies and is eating bananas and cereal instead. Ha!

We're just having so much fun and he's laughing all the time. One of my favorites things to do is ask him where Mommy's belly button is...he takes his hand and first shoves it down my clevage thinking he's gonna find it. He eventually does but it may take a minute or two. He's persistent...gotta respect that.

I leave Sunday for Massachusetts. I'm really looking forward to it. I just can't wait to learn more and see what we can do with him next.

I did take some more video today...I'll get it up soon...as soon as I figure out how to edit it. We have this blind spot in the playroom where you just can't see what he's doing through the window so there are some points where it looks like an empty room. I'll work on it. And, I have to take video of me in there with him to take with to Mass...so I'll get that up too.

Party is on!!

March 30, 2008...More video!

2008-03-30T20:12:00.002-04:00

Well, tomorrow is a big day...it's the Red's Opening Day Parade and we've been building the winning float. It's Q102's entry and we're promoting the Autism Speaks Walk (which I'm Co-Chairing...have I ever mentioned that? It's a project!). We have a working waterfall and everything...pictures to come. If I can figure out how to post them!

Between the walk, the float and the Raun Kaufman (the original Son Rise kid) lecture series that I've been trying to make happen, all my free time has been pretty much spoken for. But it's all good and I love every minute of it.

Jakob continues to amaze me every day. Today, he wasn't too happy with me tho. I had to give him a supository this morning so we could do a heavy metals urine test...party, party, party. It made him a little cranky...it would make me cranky too.

There are so many words that he's getting closer and closer to saying. The sounds are coming easier to him and they're becoming so much clearer. It's hysterical to hear him try to say "banana". One thing he's definitely got is "Mom, up". He sure does enjoy bossing me around.

We've been able to eliminate cookies from his diet. He's back on bananas and cereal. All the stuff I'm trying to get him to eat, he loves to shove in my mouth. Some of the gluten free/casein free stuff ain't half bad. Notice I said "some".

I go back to the Autism Treatment Center of America in 2 weeks. I'm really excited. I'm anxious to learn more and get better at this. The week-long course is actually taught by the parents who developed the Son Rise Program...so cool!!

I have some more video to share. I shot this a few weeks ago. Enjoy!

http://cetconnect.org/lifelong/autism.asp

March 23, 2008...I got video!!

2008-03-23T19:58:00.003-04:00

Ok...I'll write something exciting soon...but in the meantime, I figured out how to load video on You Tube!! Big accomplishment for me!!

Here's Jakob in the playroom with Susan...our outreach facilitator who has a 13-year-old son who recovered and she's been doing Son Rise with kids for 10 years...she's AWESOME!!

http://www.youtube.com/watch?v=Wd3X_3C0et8

http://www.youtube.com/watch?v=yVeqyMd2uEI

This is what Son Rise looks like!!

March 9, 2008...Dooby Dooby Moo

2008-03-09T19:57:00.001-04:00

I spent over 8 hours in the playroom with Jakob yesterday. I'm sore. I woke up this morning really feeling some muscles that I didn't even realize I had. It's all that bouncing on the ball..that darn ball. Jakob sure likes to bounce on the ball.

The jumping has slowed down. We don't do a whole lot of that anymore. And really, there's not that much bouncing anymore. It was just the 8 hours that got me.

Jakob has a new obsession...a book called "Dooby Dooby Moo". It's a riot. He has me read it to him, then he just turns the pages a bunch of times and then he reads it to me. "Dooby, dooby moo, the cows snore. Fa la la la baaaa, the sheep snore. Whacka whacka quack, duck snores." He has his favorite parts...like when the "animals ran to the talent show desk and signed in" and "Duck really wanted that trampoline. He jumped on stage and sang Born to be Wild". I started a couple weeks ago REALLY acting out the story...very dramatic. Apparently, he loves it. He now does all the acting and just giggles. He watches my every move and looks in my eyes non-stop. He's so connected and is truly enjoying every second of interaction. Last night, I couldn't get him to come upstairs to go to bed. Finally, I grabbed the book and he followed me up. He took it to the bedroom and placed it right beside by the bed. Then he climbed in and went to sleep with a smile on his face. He's a trip.

Learning to be more present is the most important lesson I've ever learned...what a difference it makes when I'm with him. To go in that playroom and not think about anything other than just being with him is the greatest feeling ever. I never realized how not-present I was until I tried to be more present. I was constantly worrying about this or thinking about that...all stuff I couldn't do a thing about at the time...just wasted mind-chatter. It's something I think we all are guilty of most of the time. Thank God for Oprah and Eckart Tolle...bringing it to the masses...

In other Jakob news...he's becoming so much more flexible, he's trying to say every word in Dooby Dooby Moo and lots of other words too, he's pulling me all over the house to play with him and he's so interested in everything I'm doing. He's joining my world more every day. It's so wonderful. I couldn't ask for more. Thank you, Son-Rise.

February 25, 2008..what I said...

2008-02-25T20:12:00.004-05:00

Wow...I'm sleepy.

It's been very busy...we had our Kick-Off Luncheon for the Inaugural Cincinnati Walk Now for Autism with Autism Speaks on Saturday. Between preparing for that, work, Jakob and his playroom and one other big project I'm working on, I haven't had much time for sleep let alone sit down to write. I've missed it. And since I'm so wiped right now, I'm just gonna share the speech I gave at the luncheon. This is it, for the most part...of course, I ad-libbed a little from the podium...but you'll get the jist...

It's been 3 years since we received the diagnosis that changed our lives...even tho I knew when Jakob was just an infant that the diagnosis was coming, it was a scary day. Looking back, it wasn't the diagnosis that was so scary...it was the prognosis..and the never-ending stream of "I don't knows"....will Jakob ever speak? I don't know. Will he be able to take care of himself? I don't know. Will he ever go to a typical school and have friends? I don't know. Will he ever look at me or even care that I'm in the same room as him? I don't know...

The prognosis turned into an overwhelming wanting and needing of help and not knowing where to go for it. There was this unbelievable feeling of urgency because all the difference could be made with early intervention so something had to be done and fast. It was the prognosis that caused us to stop looking at all the things Jakob could do and to focus on all the things he couldn't do and to try to figure out how we were gonna fix it.

So what came next was inevitable...the anxiety, stress, panic, sadness, grief, insecurity, uncertainty, fear, anger, frustration, guilt...the worry...how are we gonna pay for everything he needs? How are we gonna to live like this? What therapies do we try? Will it ever get easier or will it always be like this?

Only parents who have gone thru this can truly understand. We learn quickly that family, friends and co-workers don't know how to help, don't know what to do for us. Some may try but few can truly comprehend what our lives are like. We become an island in a sea of autism...with little to no support.

Somewhere along the line, many of us lose sight of the beautiful child we brought home from the hospital...the perfect little being who was the greatest gift we'd ever been given...the perfect addition to our family.

And as it is with all things in life, what we focus on just gets bigger, it expands and grows. And it's tough to not focus on what's right in front of us day in and day out...the screaming, the crying, the tantruming, the no sleeping, the running, jumping, throwing, crashing, the doing all the things we don't want them to do and not doing anything that we want them to do......the sleep deprivation...the sheer exhaustion.

With all of that mixed in with the rollercoaster of emotions, we no longer see the child who's just doing the best that he or she can to manuever thru a world that makes no sense to them...a world of sights and sounds that bombard them from every direction...a world filled with people everywhere who are so unpredictable...a world where they don't understand how to communicate or relate to people...we lose ourselves in the prognosis...

All we can think about is how to fix it, how hard it all is and how people need to understand our children, how they need to understand our lives and how everyone should accept our children and us. Some of us even kick and scream ourselves in an attempt to get people to listen to us and understand something we ourselves haven't fully grasped.

It can become a vicious cycle that can easily take over every minute of every day and all we can try to do is make it thru.

But there is hope...there is always hope. Our kids can get better, they do get better...some even recover. There's a father in the room today whose son did recover...ever met a parent whose child recovered?? Amazing and inspiring story...and if you'd like to meet him, I'd be happy to introduce you to him after the presentation so he can tell you what he did to help his son.

But it's up to us in this room...those of us most affected by Autism. We have to believe in our children if they are to believe in themselves. We have to make our world look so interesting and fun to them that they want to leave their world of autism and join us in ours.

Some of the greatest things that can happen to a parent with a child who has autism is to be able to see their child for who he or she is....the beautiful, amazing, brilliant person who's simply a little different and to love every one of those differences...to understand how they see our world, to get inside their heads...and to love their autism because it is a part of who they are. I love that Jakob likes to write lists...the same words, in the same order with the same colored markers over and over. I sit in front of him and make lists with him and doing that has become one of the highlights of my day. All the simple things that bring him so much joy now bring me joy. I have grown to love every moment I get to spend with him in his world...even jumping on a trampoline or bouncing on a ball...for long periods of time.

If we can see our kids as a blessing...not just say it but feel it to our cores...and start to look for the lessons that they are here to teach us, we will change the outcome. I know Jakob has taught me patience, understanding, compassion, he's forced me to re-think my priorities in life and he's definitely taught me that the world does NOT revolve around me and I am not in charge. I'm sure there are many more lessons to come and I look forward to the learning them. The sooner we learn the lessons, the sooner we all can heal and grow into better people and better parents. Our lives become more peaceful and we can experience true joy. It is absolutely possible for each and every one of us.

We can show the world that our kids are ok...and so are we. We're a strong bunch, we autism moms and dads and it's our strength that will see our kids through...our stength and our never-ending belief in them.

I'm so excited to have Walk Now for Autism with Autism Speaks coming to Cincinnati. We have such an amazing autism community here and we have this opportunity to all join together for a nice slow-paced walk and a day at the Zoo. I couldn't imagine a better place. It's a day for all of us affected by autism...parents, family, teachers, therapists, doctors, friends and the community to come together and enjoy our kids...to see them for who they are, to love them unconditionally, to understand their lives and ours and to support each other. It's a day where everyone will see the beauty in our children. It's a day of acceptance, love and celebration. And of course, to raise much needed funds to give families the support we desperately need. The kind of support that relieves some of our daily stresses of where to go, what therapies to try and how are we gonna pay for it. Relief so that we can stop the panic, the stress and the fear so we can spend our time focusing on the amazing little people our children truly are...and enjoy every minute of it...

Autism Speaks...it's time to listen...

February 4, 2008...crazy calm

2008-02-04T19:08:00.000-05:00

VAL...GOT YOUR MESSAGE...LOVE YOU!! EMAIL ME AT JENN@WKRQ.COM AND WE CAN CHAT...

We're trucking along and life is good. Jakob and his playroom...a beautiful combination.

Ya know, I never go back and read any of my old entries so I don't have any idea if I've ever really explained what we're doing. Put simply...Jakob spends his days in a special playroom in our basement with minimal distractions. It's quiet, uncluttered and full of stuff that he loves...minus the computer, tv or any toy that uses batteries. The focus in the playroom is it's Jakob's World (even more-so than my house already was) and we do whatever he feels like doing. We join him in his world. If he feels like tearing paper, we tear paper. If he wants to jump on the trampoline, we jump. If he wants to be tickled or squeezed, we tickle or squeeze. One of his favorites is writing lists on his whiteboard. When he makes his lists of colors, we make a list of colors. We're building a relationship and it's working. He loves that we love doing whatever it is that he's doing and he's taking a sincere interest in us. We're building a bridge.

And what I'm noticing is he's looking at me so much, real eye-to-eye, engaged eye contact. He's taking an interest in everything I do. He likes having me around. He takes me by the hand and invites me to play with him. And he's so much more willing to do the few things I ask him to do without putting up a fight...like going to the bathroom, taking a bath, going to bed. There's more peace in this house and we're having so much fun.

We worried a little bit about keeping him in the playroom...would he stay in there all day?? No problem. We've done 9, 10, 11 hours straight in there. We've even come upstairs after 8 or 9 hours and he's gone back on his own. He loves that room. It has everything he needs and he loves it best when someone is in there just being with him.

Outside the room, I'm totally crazed...Christmas decorations still up, working, helping plan Walk Now for Autism with Autism Speaks on May 3, trying to find volunteers for the playroom and the list goes on. But all is well, it truly is. Jakob is in the happiest place he's ever been and that makes everything ok. The tree can stay up til June.

January 27, 2008...all is great

2008-01-27T20:18:00.000-05:00

I'm really tired but all is well. Actually, all is great. Jakob has been amazing. The kid is doing so many things that I've never seen before and he's so happy, so connected. As he falls asleep at night , without having to watch a movie, he just looks me in the eye and smiles. The look of peace and joy in his eyes is priceless. I go to bed every night with a smile on my face. I much prefer that to the way I used to go to sleep...one big ball of stress, heart pounding with an uncontollable urge to cry. I don't miss that.

One thing's for sure...I gotta get some people lined up to spend time with him in the playroom. I've been doing anywhere from 4-6 hours a day in there with him and it's starting to catch up with me. I can easily pull off 4, maybe even 6 but where I'm running into a challenge is when we come up out of the room. Believe me...I'm not complaining...in fact, it's awesome. Instead of him just hanging out doing his own thing and not wanting to be bothered, he's pulling me all over the house to play with him!! It's unreal. I love it! I just can't get anything done. I still have Christmas decorations up for crying out loud!

He's totally capable of spending 10-12 hours in the playroom every day. He'd happily go in at 7:30am and not come out til after 8pm. He's done it more than a few times. He loves that playroom. And what could be better than having him spend one-on-one time with somebody who loves and accepts him and just wants to be with him doing all the things he loves to do? Nothing can compare to that. So...off looking for loving, accepting, non-judgmental people I go.

So far, I do have one good one. He's young, cute, full of energy and perfect. I love him...and I need 3 or 4 more just like him. It's funny, he was the first person I thought of when I decided that we were gonna do a Son-Rise Program. A mother's instinct, I guess. From the moment I put him in the playroom with Jakob, I knew. He was the kind of person I want Jakob to be with. Easy to describe...but I think you gotta see it to understand. He's somebody who accepts people just the way they are...no judgments, no discomfort. I wish there were more people like him in the world. I know there are some...just gotta find 'em.

And until I have a full schedule of wonderful people, I'll just keep working on my list of things to do...one thing at a time. I actually made a list...it's around 56 things long. No problem, no worries, all is well. The most important thing is being taken care of...my son is going to sleep smiling.

January 13, 2008...love that room

2008-01-13T20:19:00.000-05:00

Another few days, a few more lessons learned. The big one...I definitely need more than 5 hours of sleep a night. I just don't function at my best on that much sleep and that's what I got every night this week. I do ok for a couple of days but then I really feel it. I move very slow, I think slow, I don't have as much patience, my judgment becomes slightly impaired and I get a little crabby. I still get by ok......I just find myself sticking my fingers in a 5-pound bag of M&M's every time I walk by. Gotta get that crap out of the house.

Jakob's cool. Really cool. I keep getting asked what changes I've seen in him. Well, he looks at us...a lot. Right in the eyes, not through us. There's a sparkle there too, he's liking looking at us and connecting with us. The eyes are the window to the soul and for the first time, I feel like we're looking into each other's souls. It's amazing. The best is when he's looking into my eyes, I see the sparkle and he smiles. The bestest smile ever.

Another big change is he's trying to talk more. We're getting tons of verbalizations. There are sounds we've never heard before and they're even spontanious. Out of nowhere, he'll try to say stuff. Now granted, only a trained ear can understand what he's saying but it's so much more than we've ever heard from him before. He told me "lights off" the other night. I about wet my pants...and I turned those lights off faster than you can imagine, after I threw a huge celebration in his honor for trying to say the words. I've never felt more hopeful about him
learning to speak than I do right now. I can't even express how excited I am. Every day, we're a little bit closer to my dream of he and I having a conversation.

Other stuff I'm noticing...he's calmer, more flexible, more connected, understanding more, bringing us into activities instead of just ignoring us...he's with us. My little guy is with us.

I spent 4 hours with him in the playroom this morning. Four hours feels like 40 minutes. The time just flies. I love that darn playroom. I love his trampoline, his blankie, his markers and whiteboard. It's fun being a kid again and being a kid like Jakob. His world is wonderful. I think everybody should spend a little time in the Autsim world...I definitely think the world would be a better place if more people could see things from a different perspective. A perspective where rolling a marker along the floor is so cool and exciting, where there's so much
joy in the little things. Love that darn playroom.

www.autismtreatment.com

January 6, 2008...it has begun

2008-01-06T21:21:00.000-05:00

January 6, 2008

So far, so great! We've officially begun our Son Rise Program. As of right now, it's just for several hours a day until I get all my volunteers and a schedule set. So for now, it's been primarily me in the playroom with him. The last couple of days, we've been down there for 5-6 hours each day. He doesn't want to leave. He loves it. And so do I.

I can honestly say, it's been the best time that Jakob and I have ever had together. And we'd had some pretty good times before. But this is different. This is all about him. I have no agenda. I'm enjoying, completely and without any distraction, being a part of his world. And what a beautiful world it is. It's a simple, joyful place with a lot of letters, numbers, markers and a trampoline. The big blue ball and the mirror are quite popular too. And it wouldn't be Jakob's Playroom without his blankie....and a blankie for me too. All of his favorite things are there and they're quickly becoming my favorite things as well.

Time flies in the playroom. I have to wear a watch to make sure that he eats and goes to the bathroom on schedule. An hour feels like 5 minutes...unless we're jumping. I learned a big lesson the other day...always wear good jumping shoes and a bra. They're must-haves. Also, be sure to have enough cookies and water...for him and for me.

Meanwhile, all my Christmas decorations are still up and probably will be til March. Happy Holidays!! The spirit of Christmas remains alive and well in this house, in more ways than one.

January 1, 2008...New Year, New Playroom!

2008-01-01T21:52:00.000-05:00

It's a New Year and here we go!! Tons and tons of great stuff is in store for 2008. This is the year that it all makes sense and lives will change for the better. Lots of lives.

It's already begun in my basement. Jakob's Son-Rise Playroom is up and running. We've been spending a couple of hours a day down there over the holidays and I have to say, wow. WOW. I can't wait to be down there all-day, every day. He loves it. I took him down there about 9 this morning and he didn't come up until 1:00. I left a couple of times, but he stayed. We jump on the trampoline, play with letters, do some writing, play with puppets (I need some practice with those...not much experience there), bounce on a ball and giggle a lot. The eye contact is unbelievable and the interaction is amazing. He pulls me into every activity and enjoys playing with me. And he likes it so much, he doesn't wanna leave! How 'bout that?? Have I ever written anything like that before?? I don't think so!! My kid with Autism wants to play with me!!!!!

The only thing that I still need to run the best program I can run is volunteers. I'm gonna go searching this week...churches, yoga clubs, places like that. I'm not too concerned. I know there are tons of people out there who want to be a part of creating a miracle, which is exactly what we're doing here. It feels so right and so great.

It feels so good to finally have a handle on everything. I get it. I get why I'm here and what I'm supposed to do. I know where I'm headed and I know what I want. And I know that in order to find the peace and happiness that I want for myself and for Jakob, it all starts with gratitude. Gratitude needs to be the attitude of every moment of every day. I'm grateful for all the little things as well as the big things. I'm grateful for the little grins, the big smiles, the giggles, the hugs, the unsolicted kisses. I'm grateful for sleeping in til 7:00, the electric toothbrush, the trampoline and the swing. I'm grateful for the alphabet and for numbers 1-100. I'm grateful for Chicka Chicka Boom Boom and really grateful for Dr. Seuss. I'm so grateful that Jakob chose me to be his Mom.

I'm also grateful to have ever known my friend, Theresa. She came into my life to teach me something and she did. She also taught me a lot by leaving so abruptly and unexpectedly. She validated what I had already known...life is short and meant to be spent joyously. And that's not easy for everybody, especially families living with Autism. It's so easy to get caught up in the prognosis and trying to fix things that we forget to have fun, experience joy and love each other just the way we are. That's where our focus needs to be and everything else just falls into place. The tough part is figuring out how to do that...and it all starts with gratitude. Being grateful is the most powerful thing anyone can do.

So that's my resolution for 2008...be grateful, always.

So very sad

2007-12-21T16:57:00.000-05:00

Here's what's been going on...this is the message that I posted on several local Autism message boards...

December 21, 2007

Hi Autism Family,

I have some very sad news today. Yesterday, the Autism Community in Cincinnati lost one of its finest, Theresa Sharp.

Theresa was an amazing mom to her son Justin (7) as well as her two typical children, Evan (9) and Kayla (3). She had a passion for helping those affected by Autism and she touched the lives of everyone she encountered. She was an example of love, acceptance and finding the joys in Autism. She was an inspiration to me and a good friend. I will miss her terribly.

I believe there is a lesson in every tragedy and the lesson here for me is...love your children more than anything. Love everything about them, including their Autism. Always appreciate what you have and not think about what you don't. Look for the blessings every day, they are always there.

The arrangements are being made today and when I have them, I will share. In the meantime, please pray for Theresa's beautiful children and her family.

Kiss your kids,
jenn

December 10, 2007...how it went

2007-12-10T16:34:00.000-05:00

I can't even express how excited I am. And I'm not even sure where to start so I'll try to keep it simple.

Last week, I wrote several journal entries while I was out of town. They're below exactly as I wrote them. It was an emotional an eye-opening week. An amazing week.

As I sit here today, I know without a doubt that I have found the answer for Jakob and me. This is it. This is the only program other than the diet that I will recommend for parents. It's the only one that makes any sense to me. It's the only one that makes any sense for any child with Autism. I believe in it 100%.

The premise...teaching a child with Autism that the world we're living in is a more interesting, fun, exciting place to be than the world they're living in. That there's nothing better than connecting and being with other people. That communication gets them what they need and want. This program teaches children how to live and thrive in a world that they currently don't understand and can't handle. The child leads us...Jakob will show me the way into his world and I will show him the way out.

If you are a parent of a child with Autism, please take a look at this with an open mind and an open heart. I know that what I write doesn't even come close to explaining this program so if anything I write resonates with you, please investigate further. I'll include the website and resources at the end.

Here is some of my journey and a flavor of what it's all about...

December 3, 2007...Day 1
8:45AM

I am in Sheffield, Massachusetts at the Autism Treatment Center of Amercia. We flew into Hartford last night and drove almost 2 hours in the freezing rain to the Option Institute which is home to the ATCA. I'm here for 5 days to learn everything that I can about the Son-Rise Program.

The journey that brought me here began last February when a friend of mine urged me to watch Oprah, the day she featured teachers from The Secret. I saw the show, ran out to buy the DVD and the book. As I watched the DVD, I knew that there were answers in all the information for Jakob. So, I started reading...a lot. I immersed myself in tons of information about the Law of Attraction, and thoughts become things, and the power of the mind, self-healing and just plain happiness. I've always known that what I wanted more than anything for Jakob was for him to find peace, experience joy and feel love. That's all that ever really mattered to me. I'd go the bookstore and books would just pop out at me and when they did, I'd buy 'em and read 'em. One day, I felt a tugging to the psychology section where I saw one copy of the book, "Son-Rise: The Miracle Continues". I read it in 2 days (and it was a BIG book). I cried throughtout the whole story...the story of a child diagnosed with Autism whose parents were told that their son was "hopeless" and was destined for institutionalization. Well, they weren't satisfied with that prognosis and set out on their own to help their son. After only a few years, their son no longer had Autism. Amazing story and everything they did made so much sense to me. It all seemed so right. So, here I am in the middle of the woods, ready to learn how to do what they did.

I'm excited and I'm ready. This feels so right.

We just got back from registration and breakfast. Most of the people who work here have English accents and they're so very friendly. The parents are a different story. Sitting in the room was a little difficult for me. I could feel their pain and their helplessness. I even started to cry a little in my oat meal. Class starts in about a half an hour. I hope what they learn today will ease their anguish. I know what's coming and it's all about happiness being a choice. It's a choice I like...a lot. And a choice that I want to teach Jakob.

4:30PM
Five hours worth of presentations/classes today...3 hours this morning and another 2 this afternoon. Quite a group we have here...44 moms, 21 dads, 4 grandpas, 2 grandmas and 17 volunteers (people who will work with kids). All of us here total 61 kids who may benefit from the program if the parents choose to implement it. There are 17 states represented and 7 other countries, including Nigeria, Ireland and the Netherlands. There are pictures of all our kids posted on boards in the main classroom....good looking bunch.

A lot of the stuff we covered today I've already been doing...accepting Jakob as a gift (not a burden or sad story), using what motivates him (toys and activities that he enjoys) and always approaching him with a loving and accepting attitude. Easy.

What I love about this program is it is 100% based on love and acceptance. It's all about joining him in his world in order to bring him into ours. It goes back to so many things I've written about before and have known in my heart for so long.

The main things that this program focuses on are eye contact, communication, interactive attention span and flexibility...the Big Four. All the other stuff will come later, naturally when the Big Four have improved. Perfectly aligned with my beliefs...who cares if Jakob can add and subtract, sit in a circle or draw a square if he doesn't care if I'm in the room, doesn't look at me or talk to me. First things first.

Sharing all the details of the program, I can't do. There are several books that I can recommend that explain it way better than I ever could. I will share some of the bits that really have an effect on me...like...

I am Jakob's greatest resource. I know him better than anyone else and I know him better than any test result, evaluation, doctor, therapist, "expert", family member or friend. It's taken me some time to say that and really mean it. I have that confidence now. My wish is for all Moms to have that confidence too. I think so many Moms are so frazzled and constantly freaking out because instead of listening to their inner guidance system, they listen to everybody else..."get this kind of therapy, react this way when your kid does that, this is the only answer, this is a good as it's gonna get, you're just gonna have to live with it". BS.

And...there is no such thing as false hope. Hope is a beautiful thing. It feels good. Hope is key and essential to success in any area of our lives. Hope is the belief that what we want can be had. I have a lot of hope...tons of it.

That's what was big for me today. All the practical stuff that I can use during daily interactions with Jakob, I'll be able to write about as they come up. I can't wait.

My plan is...Jakob will not return to school after the holidays. Jakob will begin a full-time Son-Rise Program at home. This week while I'm gone, a new playroom is being built for him in the basement and he will be spending anywhere from 8-12 hours per day in there. It'll be 8-12 hours every day focused on the Big Four. I love the Big Four.

9:30PM
Tonight we watched "Son-Rise", the movie...made for tv in 1979. The hair, clothes and music made me giggle...I remember it all very well. Very inspiring. Just more evidence that I'm in the right place.

Tomorrow's a big day...lots of classes and a couple of one-on-one sessions with counselors. I'll get to explore some of the roadblocks I may personally run up against when setting up and running this program. That oughta be fun. They scheduled me with senior counselors...probably a good idea since they certainly won't have any trouble getting me to talk. Poor guys...no clue what they're getting themselves into...

One final thought before I pass out...it's so very nice to be around people who see the beauty in children with Autism. No negative talk here...it's all good. They understand that all the kids are just doing the best that they can and all their behaviors are just their way of trying to deal with a world they don't understand. They accept that the kids see the world differently and it's ok...everything they do is ok. Wouldn't it be nice if everyone felt that way about our kids...and us?

Day 2
7:30PM

Busy day. Another 6 hours of classes today and an hour-long consultation with a senior teacher tonight. Our senior teacher was actually the woman who taught our afternoon speech session. She was perfect for us since Jakob is still non-verbal. A lot of valuable insight into how to motivate Jakob to talk. As it has always been, I know he has it in him. Now I know some things to do to get the words out of him.

It's truly amazing to me that more people don't do the Son-Rise Program. It makes so darn much sense. It's explained so clearly how kids with Autism see the world, how things affect them differently than it affects us and what it's gonna take to reach them. No-brainer. Maybe that's why. Since Autism seems so complicated, people figure the solution has to be complicated too. Well, it ain't.

Sometimes, the information is so simple that I feel stupid. Seriously. And even though there are some things that I've been doing for years and things that I've known about Jakob from the beginning, I kick myself that I didn't do more...that I didn't trust myself enough to do it more.
But...the past has no power and the only way to affect the future is to focus on NOW. I know that, so focusing on the NOW is what I'm doing here in the woods in Massachussetts. It's cold here...and there's a little snow, a lot of ice and some pretty impressive wind gusts...that's the NOW weather report. There are signs up around here that warn of deer hunters so "don't go in the woods" and also "beware of black bears". Cool...I really hope I see a bear...from a good, safe distance.

So...what we covered today. I had to look in my manual to remember the details...so much info that I'm still just absorbing. The big one was "stimming" behavior...self-stimulating, repetitive behaviors that when Jakob does them, it's obvious that he's in his own world. We got a real good look at why kids with autism do them and it was really eye-opening for some. Bottom line...he's doing it because he needs the predictability, it's comforting, it may be self-theraputic or he may just be needing to tune out the world because it's too overwhelming for him. It makes him feel safe. It's not bad...nothing he does is "bad" or "unacceptable". And the way to handle it when he does it...join him. This is something I've been doing for awhile and the response from Jakob has been amazing. It totally cracks him up and he loves to see that I'm having fun doing the same things that he obviously enjoys so much. It's a way to connect with him. It opens a door. This is a very simple concept that I feel is ok to just throw out there for other parents who read this to try. Do it...and do it enthusiastically. Get into it. Try to see the world from their perspective.

I know anytime one of the "experts" would say "he shouldn't do that" or "you have to stop him from doing that" or "hold his hands down when he starts to flap them", it felt SO WRONG. It felt awful. It felt mean. It felt so unaccepting and controlling. I know I'd never want somebody treating me the way I was being instructed to treat my son. It was always asking for a fight...and who wants a fight??? And why would I ever want Jakob to feel like I didn't accept him? Just plain mean.

We spent the afternoon learning some techniques to encourage communication. Good stuff, really good stuff.

I'm anxious to get home and try it all out with Jakob...and it's only been 2 days. We have 3 more days to go and the manual is thick. I'll be coming home with a whole new level of understanding and a definite plan.

The plan will unfold in future journal entries as I put it into action...

Day 4

Yesterday was so busy, I just didn't have it in me to write. And quite honestly, I needed to get past my frustration. I was so frustrated and irritated that I hadn't found this program sooner. But more annoying than that was why I hadn't heard about this program and why more parents didn't know about it. (I'm great now, feeling good, feeling strong.) But every parent needs to know about this program. I've run the gammet. I've tried damn near every one (hyperbaric chambers I haven't gotten to but I was investigating). This is the one that feels right. No other even comes close to comparing. And once other parents understand what Son-Rise is, I believe that they'll feel it too. It's so natural.

I'm so happy to be here. I'm so thrilled to be learning everything I've learned these first 4 days. I'm so excited to go home and put into practice everything I've learned. I can't wait to learn more tomorrow. And I'm so looking forward to sharing with other families what this program is all about.

The concept is so simple, so common sense, so easy and so much fun. No more forcing Jakob to do anything, no more dragging him places he doesn't wanna go, no more calling any of his behaviors "inappropriate" or "unacceptable" or "undesirable". I finally know, with complete confidence, that he's doing the best he can and it's ok. He's ok...in fact, he's great. He's perfectly happy right where he's at. I'm the one that wants more for him and that's ok too. We just have to start right where he is. I now know how to do that. And I know how to start where we are and build upon that...and build it all the way to recovery.

I've spoken to so many parents here who feel the same way. We're all in the same boat. When we were asked what we want most for our kids, we all had basically the same answer...we want to connect with them and know that they know how much we love them. But before Son-Rise, we'd all been told to push them to be more "normal", and we've listened. We've forced them into school settings and into therapies where it was obvious that they didn't wanna be there. They cried and kicked and screamed. Why?? For what??? So they could draw a circle? So they could stand in a line with other kids? So they could use scissors?? How is any of that gonna help them make a connection with other people? What's more important??

Our world is scary for them. They don't understand it. They see the world in a way that we can't even imagine...the sights, the sounds, the smells, the sights. It's too much. And when a child is tantruming or running away or "stimming", it's just their way of trying to deal with this overwhelming environment that they don't understand. And here's the kicker...all the things they're doing to cope with our world...we try to make them stop doing. So here we are, taking away the things that make them feel better...are they gonna wanna connect with someone who's doing that to them? Are we behaving in a way that's going to build their trust in us? Are they gonna want to be a part of a world that causes them even more stress than they're already feeling?

Inner peace, joy, love, happiness...let's go for that. Jakob laughing, looking me in the eye, being with me, connecting with me...let's go for that. Jakob and I having a conversation...let's go for that. Let's.

One of the many things that I've heard here that made me cry is a story of a girl who had polio when she was a child. The doctors said she would never walk. When she was 20, she won several gold medals in the Olympics in track and field. Here's what she said..."The doctors said I would never walk, my Mom said I would. I believed my Mom" That really got me. If I don't believe in Jakob, who will? No more flickers of doubt. I believe.

Back to December 10...

Well, that's how it went. Right now, I'm not sure what else to say. I barely touched on all the principles. There's so much more.

Jakob's playroom in the basement will be finished by the weekend and I can't wait to get him in there.

I can say this...I've begun using some the specific methods with him and I can see the difference already. He's looking at me more, he's paying more attention to me and he did his very best to say "I love Mama" yesterday. "I love Mama"...I've been waiting a long time for that.

I look forward to sharing our journey. I promise once it's up and running, the beauty and the benefits of the program will be well-expressed.

www.autismtreatmentcenter.org

You can request a free information packet with a DVD that is a must-see.

A must read (in addition to "Son-Rise the Miracle Continues" by Barry Neil Kaufman):

http://www.optionindigo.com/product.aspx?68

November 27, 2007...pooped

2007-11-27T22:15:00.000-05:00

What a pumpkin. I love him more every day. He's just the neatest person I've ever had the pleasure of knowing. I'm watching the finale of Dancing With the Stars while he's upstairs in my bed singing along with his Underwater Adventures DVD. It's so funny to be down here listening to him. He's having a one-man party. I've learned it's just best to let him wind down on his own. If I'm up there with him, it turns into a two-person party and he'll never fall asleep. It's tough though, he's even more fun than Dancing With the Stars.

He's not the only one needing sleep. My schedule is a little thrown off already this week. Jakob's dad had the flu so he came back to me a day early...cut into my big nap of the week that allows me to catch up. No biggie, I'll catch up when I'm retired. And of course, Jakob's way more fun than a nap.

I wanna talk about all the reasons why I'm grateful for my son, there are so many. I had a couple hours scheduled for yesterday to do just that (immediately following my nap). Tonight, it's late and I'm wiped. So, in order to give the topic the attention it deserves, it will have to wait. I'll definitely get to it, I promise.

The singing has stopped, he must be out. Probably right in the middle of the bed. So, I'll be hanging over the edge right next to the alarm clock that goes off at 4am. Lucky for him he's so darn cute.

November 25, 2007...back in the habit

2007-11-25T20:09:00.000-05:00

Holiday weekend...over. I just took a big fat nap, much longer than I had planned and I'm still a little foggy. Most of the Christmas decorations are up and there's only a little bit of a mess to clean up. I should have it all wrapped up before Jakob comes home on Tuesday. Big task...and as always, I wonder why the heck I put myself through it every year. And then I take a look at how pretty the house looks and I remember why. Taking it all down is another story...one room never got taken down last year so it was ready to go for this year. Perfect!!

Jakob handled the crowd in the house pretty well. Granted, he was on the computer most of the time but he was happy. The only time he got upset was when I'd try to get him off the computer. I'd get the scream, stomping of the feet and a whack in the mouth. Love the looks I get from others when he smacks me...have to explain the no reacting thing. I think some people think I'm nuts...but that's nothing new.

We did have a little trouble at Thanksgiving dinner. He went to his dad's in the morning for a little while and he came home right as we were sitting down for dinner. His routine is...he goes to his dad's and from there, he goes to school. So if they go anywhere other than school, he gets thrown out-of-whack and gets upset. So, he was upset. While everyone else was enjoying some very moist turkey, I was taking a walk around the block...under-dressed and cold. Very cold. Bummer...I really wanted him to sit and eat with us but that wasn't happening. He opted for the computer instead. He went to his dad's Friday morning too...and I picked him up and brought him home. That went smooth as silk. Routines are still a pretty big thing.

With all the commotion around the holiday, I'm a little behind on my "Jenn Time" and I've fallen a little behind on my reading. I've been reading the same book for 2 weeks...that's way off schedule. I'll have some catching up to do this week. I'm going on a trip next week and have some stuff I gotta get read before I go...studying to do. I'll be spending a week immersed in Autism stuff...can't wait...details coming soon. Aunt Sandy is going with me so my Mom is coming to stay with Jakob. He just loves his Grandma and they're gonna have a ball, they always do. I never mind leaving town if Grandma's coming to stay. It's great for the both of them to have the time together.

I'm getting a little ansy waiting for the New Year...New Approach to Autism. I wanna get started NOW! But I'm doing all that I can...keep him happy, get the basement ready, get everybody ready. After next week, I'll be going full speed ahead with the preparations. It's gonna be good and it's gonna be fun.

I'm going to get my wits about me and tomorrow, I'll share some of the things in my life that I'm thankful and grateful for this holiday season. An attitude of gratitude...which will make all the difference in the world...for Jakob, and for me.

November 20, 2007...wine

2007-11-20T21:55:00.000-05:00

Well, the timer wasn't a big hit. But there's hope...he didn't throw it! I'm thrilled.

I've certainly had my challenges with the computer but it's been nice to hear from his therapists that he's been doing great for them. I've always said that if he's gonna give somebody a hard time, I prefer it be me. Even though it doesn't seem fair. I laid in bed for 6 months carrying that child and I birthed him. I'll be sure to remind him of that when he's older. I'm a mom, that's my job.

Jakob is off school for the next 5 days...that's a long break. Not much therapy either with the holiday. I'm gonna have to make sure he gets enough sensory activity...lots of jumping, swinging and crashing. The basement is gonna see a lot of action. I'm in the process of a little basement remodeling...it's gonna be fantastic. The playroom I created using material for walls and a ceiling is getting done right. We'll be spending a lot of time down there in the next few months and it will be the perfect environment for all we'll be doing with him. I'm super looking forward to it.

This weekend will be interesting. When it gets a little chaos-y and there's tons of activity, it's tough to keep up with Jakob and explain why he's doing whatever it is that he's doing to everyone who doesn't understand. Wish me luck and recommend a great chardonnay...

November 19, 2007...30 minutes

2007-11-19T20:15:00.000-05:00

Well, 3 trees are up...4 more to go. I'm getting more into it. Jakob watched me work on the big one...the 12-footer. I'm convinced he thinks I'm nuts. He just looks at this huge thing and locates the plug so he can turn off the lights. He thinks that's pretty darn funny. I just shake my head. But of course, not in front of him. Any reaction is re-inforcement and I certainly don't want to re-inforce the lights being turned off.

The timer came today!! What a treat that's gonna be. I'm looking forward to giving it a shot. He's been in the mood for throwing things lately. He threw one of his vibrating toys right at the tv the other day. I wonder if he'll throw the timer...and in what direction. Every day is an adventure.

One thing Autism moms never get enough of is alone, quiet time. I know that I went without it for years. Gotta quiet the mind, pull it together and hear my own thoughts. When things were so crazy, there just weren't enough hours in the day. All there was time for was a shower, work, chase a kid around and try to figure out what made him tick. It's amazing what just a half an hour of peace can do for the soul. I make sure I get at least a half an hour a day. I can see yoga in my future...

My parents get here tomorrow and my dear friend, Stacey arrives Wednesday. It'll be a houseful on Thanksgiving. It can get a little hectic so I'm gonna have to come up with a gameplan of activities for Jakob. I want him to be happy and have fun...preferably without Starfall.com. So much of it depends on how everyone reacts to him. Hopefully, everyone will play nice and Jakob will have a great holiday. When he's happy and having fun, so is everybody else.

November 18, 2007...now

2007-11-18T13:51:00.000-05:00

The timer gets here tomorrow...I can't wait. The little turkey butt was up at 4:30 this morning wanting the computer. I was able to keep him entertained for about an hour but that was all the patience he had in him. I'll be on the lookout for UPS tomorrow and I may even kiss the delivery guy. Luckily, UPS guys are usually pretty cute.

I've begun the Christmas decorating and I have too much stuff. It's rediculous. I'm not as into it as I used to be...too many other things going on that I need and want to do. But I'm torn...I do love it when the house is all decorated. I've found a couple of Jakob's musical decorations...he sure grinned when he saw them. He placed them on either side of the computer and would take short breaks to play with them...but he never stepped away from Starfall...Heaven forbid.

We're in this holding pattern as I get everything ready for the New Year, New Approach to Autism. There's so much I want to try with him but everything's gotta be in place first. I'm getting ansy. Luckily, we're about to have a house-full for Thanksgiving and that will keep us busy. I'm looking forward to it, it's nice being surrounded by people who dig Jakob.

The self-healing is coming along...although I still have my moments. That's when I remind myself of something that is true for all of us...it's not my fault, but it is my responsibilty. And responsibility simply means my ability to respond. So, I check how I'm responding, decide if that's the way I really want to be responding and if it's not, I fix it.

There's nothing I can do about the past and the only way to affect the future is how I respond now. All the power is in now. Now, now, now. And right now, if I want to be productive tonight and make it through Desperate Housewives, I need a nap...NOW.

November 15, 2007...focus

2007-11-15T21:38:00.000-05:00

Somebody had a rough day at school. I could see it in his eyes...he was pooped. Computer issues...shocker.

Of course, the first thing he wanted when we got home was the computer and he looked so darn sad, I gave it to him. It was pretty non-stop for 2 hours.

After he got it out of his system, we had a fabulous evening. We watched a nursery rhyme video and he was hysterical. We were singing and dancing and he kept giving me unsolicited hugs and kisses. We had fun. He was giggling a lot and that was nice to see. All things considered, it was a pretty quick recovery time from the squealing and stomping I witnessed when we first got home.

We have a little microphone toy and a mirror that we can record our voices into and we were singing along with all the nursery rhymes. We have some work to do on the pronunciation but the kid's got rhythm...impressive. So frickin' cute.

I've started flipping through the bazillion catalogs I've gotten in the mail looking at potential Christmas gifts. I just don't know what to get him, I really don't. It sure seems like he already has everything from that period of time when I bought everything there was available. All the new stuff I see involves batteries and we're going off those, so...I don't know. In all honesty, I'm probably just out of practice. I haven't been doing a lot of shopping lately. I gave up credit cards in July. I'll just keep looking.

Focus, focus, focus. That's what I'm doing. Be in the moment, live in the now, be present. It's so important not to let any of the silly stuff from other parts of my day seep into my time with Jakob. I catch myself thinking about crap that has nothing to do with where I'm at and what I'm doing. It's easy to let the mind wander. Gotta focus...bring it back. Get in the zone. I'm getting better at it every day.

It really is a no-brainer, there's no part of my day or my life that even comes close to comparing to the time I spend with Jakob. He's the best. So when I'm with the best, I need to enjoy it.

And tonight, I did. Big time.

November 14, 2007...no problem

2007-11-14T21:24:00.000-05:00

Welcome back, computer!!

Shortly after I posted yesterday's journal entry, Jakob came up the stairs and immediately asked for it. Not much I could do, he knows I have it. So, the computer is still an issue.

Somewhere in this house I have a timer. Couldn't find the darn thing so I ordered another one. It was the first time I used a 1-800 number in a long time. I would've loved to have ordered it online but my computer is no longer mine. The timer will be here Monday and I'll be setting time limits on his computer usage. Computer + Autism = Bad Idea. At least he's familiar with time limits and even if he doesn't like it, he'll get used to it. But there is coming a day soon, when there will be no computer use at all...as soon as I have all my ducks in a row...new year, new approach.

For now, it's a minor battle. A battle I've been winning every time and I love that. I mean, I'm fair. I let him play with it for plenty of time before I start to shut him down. Tonight, we shut it down twice...once for a bath and once for bed. Each time, I gave him sufficient warning that the end was near and he let me know that he wasn't pleased...usually with a squeal and a swipe across my mouth. He does this thing where he puts his hand over my mouth and wipes it...usually pretty hard. He'll continue with the swiping then throw in a stomping of the feet with squeals and an occasional drop to the knees. Once in awhile, I'll get a laying down on the back with stomping feet. That one is always cute.

No big deal...as long as I don't react. That's the key, ya know...no reaction. A reaction is exactly what he's looking for and if he gets it, the drama will continue. No reaction=no more drama. And when I say no reaction, I mean no telling him "no", no dirty looks, no trying to stop the swiping, no grabbing his hands to make him stop, no laughter...I give him nothing. I'm a rock. The only thing I'll do is offer him up a new activity...tonight is was bath and upstairs movie. He always comes around, even if it takes a couple of minutes. I really enjoy the look on his face when he realizes that all he's trying ain't working. It's this "oh, crap, she's got my number. I may as well give in and do what she wants. It'll be fun too." I always make sure to sell the new activity...gotta make it sound like nothing compares to a bath and a movie in bed.

What an "a-ha moment" it has been to realize how every little thing I do has a profound effect on what he does. Same goes for everyone he comes into contact with. And it's the little stuff that makes as much of a difference as the big stuff. That's why the healing of myself has to come first. If I don't have my act together, Jakob won't get his together. And it's more than lead by example...it's "feel" by example. My anxiety feeds his, my frustration feeds his, my anger feeds his.........my patience feeds his, my understanding and compassion feeds his, my love feeds his. From now on, and I have to feel it to my core or else he knows, he's getting as much patience, understanding, compassion and love as possible. I used to think I already did that...and I did to an extent, but I had a long way to go. It's awesome to be learning more every day and getting better at it.

Computer, smacking me in the mouth, spraying water all over the bathroom...no problem. I got it.

November 13, 2007...the song

2007-11-13T19:25:00.000-05:00

Oh brother...the Dynavox apparently took a tumble...good thing it's under warranty. Big fat crack in the top, left corner...would have been nice if someone would've told me about it. Something like this would've set me off...but not anymore. I'm the calm, cool-headed Jennifer now who simply handles it. We'll get a new one and I'll breathe.

Absolutely no computer problems today! He made it beautifully (so far), he hasn't even asked for it! (maybe because his Dynavox doesn't work..)

He's downstairs doing PT right now so I have a few minutes.

I think he's coming down with a little cold. He's dragging a little and has a runny nose. I've heard a few sneezes too so I've given him some Zicam. We're at the time of the year for chapped lips too...except it's never his lips that are chapped. It's the skin right under his lips. He lets me put some Burt's Bees on it, then he licks it and makes a nasty face. I guess it doesn't taste very good but he lets me do it. That alone is a wonderful thing. I remember the days when I'd have to hold him down to do anything to him. He's become much more trusting.

He's pretty great with his supplements and the anti-fungal too. We actually give him his supplements in prune juice (eww) and he takes it like a champ. I'm so proud. We're gonna have to get some blood work done soon...I can only hope that goes well (I'm thinking positively).

As we gear up for a new year and a new approach to Autism, I'm gonna spend a lot of time observing Jakob. To really do that, it takes keen eyes and ears. Like tonight, there's a song he's singing...a definite specific song. It took a couple of times to figure out since the words are uninteligible...and it's a song from freakin' starfall.com. For cryin' out loud. I can totally hear the "starfall bus" part from the chorus. What a trip.

I'm just gonna follow him around, watch what he does and listen to what he says. Every opportunity I get to play with him, I'll take but he's in the lead. Now that's a new concept...Jakob's in charge. Right.

It's a heckuva lotta fun now, getting into his head since his head is a pretty content place these days. It isn't filled with anger, fear and frustration like it used to be. I'll keep ya posted on what I see and hear. For today, it's "starfall bus"...catchy.

November 12, 2007...I'm learning

2007-11-12T19:10:00.000-05:00

Jakob really loves the computer...a lot. It's a bit of a conundrom. Some of the things he's doing on starfall.com are educational...BUT, what Jakob needs more than anything is to work on language and connecting with other people. He ain't getting much of that if his face is buried in the computer. The compuer is gonna have to go.

Hopefully, that transition won't be too tough. I've been out of town for a few days and he's been without it. I hear he gave Grandma a little bit of grief, dragging her all over the house and checking all of my hiding places for it. But he recovered from the disappointment and played with her instead. We'll see what happens when I pick him up from school tomorrow. The challenge is gonna be...how am I gonna check my e-mail or write journal entries?? I guess I'll just have to be out-of-touch after 3:30pm...oh well, just hanging with him is more fun anyway. I can write in the afternoon.

The healing of myself is coming along beautifully...too bad it's not an overnight thing. But that's ok. I'm enjoying this learning process, I'm an enthusiatic student again. And the more I learn, the more I learn I need to learn. And I'll learn it...and then learn some more.

I just had an AMAZING weekend where I learned a lot. My quest that will lead me to opening the door for Jakob continued. The door that, if he chooses, he can walk through and join us in our world. It's ultimately up to him, I just have to open the door.

And open that door, I will. I know it. It feels good to have that confidence.

It's too tough for me to explain right now. I'm still processing all the information. But there will come a time when I'll be able to share what I'm learning with every parent living with Autism.
In the meantime, I'll keep sharing bits and pieces of what I'm doing...

And today, my number one priority is to find a place to hide the computer. I'm gonna have to get rid of all electronic toys too. They gotta go. No human being can compete with a toy that lights up, makes noises or plays music. Forget about it. I'm not gonna get rid of everything all at once though, that's just mean. My goal is to have him off all the stuff by January. A new year, a new way of living with Autism...and it's going to be so much fun for everybody, especially Jakob!

I can't wait!!

November 6, 2007...the first step

2007-11-06T18:59:00.000-05:00

Healing myself. Sounds like a party. But so far, it has been. I'm feeling better every day and more and more like the girl who laughed all the time. I'm a work in progress and so far, I like it. A lot.

Probably, the biggest lesson I've learned about Jakob is he's sensitive to more than certain foods, grocery stores and restaurants. He's sensitve to the moods of the people around him. Super-sensitive. No matter how hard I try to fake it, if I'm annoyed, agitated, frustrated or impatient, he knows it. And it absolutely, undeniably affects him. He feels more than he sees.

So that means I can never be annoyed, agitated, frustrated or impatient. Simple enough...uh huh.

It's a process and it's a choice. I can choose to feel however I want to no matter what the situation is. They're my feelings and I'm the only one responsible for them. There is no one else to blame for my feelings.

And I'm not a victim. Neither is Jakob. We are survivors and thrivers.

Attitude is everything and my attitude is improving every day.

We're off to a pretty good start.

November 5, 2007...getting clearer

2007-11-05T20:05:00.000-05:00

As Jakob's "differences" continued to become more and more apparent, I continued my own personal downward sprial. It was unavoidable.

In order for me to understand why he was the way he was, I had to get into his head. I had to see what he saw and feel what he felt. It was the only way to help him.

The whole way I looked at the world changed. Jakob was in pain, he was suffering, he was frustrated and angry. I'd never felt any of that my whole life so the only way that I could ease his pain was to experience the way he was feeling and look for ways to make it better.

The process took over every aspect of my life. I had to feel it every second of every day to really get a handle on it. I had to live through him. And I did.

The old Jenn was completely lost and confused as the my "Inner Jakob" took over.

I guess that's why it's all such a blur...I was too close to it to see it.

The memories that I do have are the moments when I was trying to figure it out. Why certain things made him stim, what environments were just intolerable, what people did to cause him to shut down. It got to a point where I could spot a potential issue from a mile away and I did everything I could to avoid it.

Where I got myself in trouble was when I reacted to my own insecurities and self-doubt. Unfortunately, that happened quite a bit. From the doctor that told me that vaccinations were harmless to therapists who used methods that caused him additional anguish in their attempts to help to friends and family members. Instead of following my own gut instincts, I would listen to them since they were the experts. When in fact, I was the expert. He was living inside of me.

I get it now. It's becoming more and more clear to me every day and I know what I have to do.

First and foremost, I have to heal myself.

Then, along with other people who love Jakob, I will heal Jakob.

November 4, 2007...it's blurry

2007-11-04T18:25:00.000-05:00

We got moved into the new house and I hoped that things would miraculously improve. Maybe there were just too many changes in our lives and once we got into the house and settled, everything would calm down. Maybe I was just a nervous nelly and seeing things that weren't really there. I always did have a pretty active imagination so maybe I was just imagining things that weren't abnormal at all. And I did trust everyone that was telling me that he was fine and honestly, I liked hearing that.

It's funny. I can vividly remember so may times in my life from a very young age, through high school, college, my first few years in radio, my wedding. But those first few years with Jakob are a different story. I remember panic attacks, uncontrollable crying (his and mine) and an overall feeling of helplessness but that's pretty much it. That time period seems more like an out-of-body experience. I wasn't really there. I mean, I couldn't have been. I was a happy, fun-loving, positive-thinking girl with not a worry in the world...not the girl that was living in the new house with Jakob. That girl was anything but in control. That girl was lost. And that girl wasn't having any fun at all. I certainly tried but it sure seemed like nothing was going as planned.

I had never known stress like that, the kind that never lets up. Every waking moment was filled with anxiety and I wasn't sleeping much. Jakob would wake up in the middle of the night and be up for hours. The only thing that kept him happy were Baby Einstein movies so we owned the entire library.

I've never done well with sleep deprivation and I was definitely suffering from it. Work was hard, home was hard, everything was hard. I kept up with the medication.

The bickering between his dad and me kept getting worse and worse. We didn't agree on anything...especially anything to do with Jakob or money. I knew the conflict surrounding Jakob had to be affecting him so I tried not to fight in front of him. But we were fighting all the time, so it was hard to shield him from it. Even when we weren't arguing, you could still cut the tension with a knife. If he didn't hear it, he had to feel it.

Since Jakob was only 18 months old when we moved into the house, we were still rationalizing all his different behaviors. He wasn't talking yet, but the doctor said not to worry until he was 2. Whenever we'd try to take him somewhere and he'd freak out, we'd write it off to he's hungry or tired. When he ignored other kids, we said that he just wasn't used to being around other kids. When he'd ignore adults, we figured he was just picky and if he didn't take any interest in them then they weren't doing anything interesting.

I kept up with all my research, still leaning toward Autism but at the time, all the research said that it usually didn't get diagnosed until the age of 3. I was playing the waiting game and hoping all the red flags would go away.

Looking back, I'm pretty proud that I made it through as well as I did.

I don't beat myself up for that time anymore. I was absolutely doing the best that I could. I was in new territory. I was still using the old problem-solving skills. This was just a whole new kind of problem and the answers weren't coming as fast as I wanted them to. And the problem was of a completely different nature. There was something wrong with my child and I believed it was my fault. Tough pill to swallow. But every waking hour, I was doing the best that I could...and I knew Jakob was doing his best too.

November 2, 2007...big red flags

2007-11-02T17:44:00.000-04:00

The first 6 months in Cincinnati were rough. Jakob was mobile and getting into everything. He liked to run...just run. Not toward anything and not away from anything...just run.

There were several incidents during that first 6 months that I'll never forget. I had gotten him the cutest little lion costume for Halloween. It was a simple pullover number with a hood that had a mane around the face. I put that on him and he was pissed. He wanted absolutely no part of it. He kept trying to pull it off his head. I took him up the street to a friend's house to show them how cute my kid was and he screamed like nothing I'd ever seen. I think we scared the daylights out of them. We stayed just a couple of minutes and had to take him home. After I got the costume off, he calmed down a little but remained angry for awhile. Ya know how when a little person is really mad and crying, they look right at you to make sure you know that you're the one that's causing all their misery? That wasn't Jakob. He looked everywhere but right at me. It was as if he wasn't looking at anything at all. It was a complete loss of all control. It was scary.

We had enrolled him in Gymboree classes. There were probably about 10 kids in the class all around his age. The other kids loved to run around, climb on things, play with toys and participate in circle time. They took an interest in the other kids and laughed a lot. Jakob was a different story. He was a runner...he just ran back and forth. He could've cared less about anybody or any of the activities. We'd try to get him to hang out in the circle and sing with everybody but he just wanted to run. We'd chase him down and drag him back to the circle. Then he'd get up and run again. The only thing he really enjoyed was the parachute and of course, running all over the place. He never made eye contact with anybody and didn't answer to his name. I don't think he could've picked me out of a crowd. He'd walk up to any woman with blond hair and want to be picked up. That was especially hard on me...furthering my belief that I was such a terrible mom that my kid didn't even know what I looked like and that I obviously wasn't spending enough time with him. Guilt with a capitol "G".

The big one happened in December. This was the day that I couldn't come up with an explanation for why he was doing what he was doing. We had taken him to a wedding in Columbus. He was ok until we got to the church. Before the ceremony began, there were trumpets. Those trumpets startled the daylights out of him and he looked terrified. The screaming began and didn't stop until we got home. We took turns watching him in a hotel room at the reception. Every time we'd try to bring him into the ballroom, the screaming started all over again. The lights, the music, all the people...it was just more than he could take. It was a long day...a very long day and I was feeling what people were thinking. It was a combination of "don't you have any control over your kid" and "there's something not right with that child". A look that I've gotten used to over the years.

A new job, looking for a new house and looking for answers about Jakob consumed every day. I didn't sleep much and I was feeling pretty lost. The pediatrician wasn't any help, telling me that he was fine and that vaccinations were safe.

I would ask people around me what they thought might be going on and they would all say not to worry. Yeah, right. If only I had followed my mother's intuition and trusted in it. But it was too hard to face at the time. The truth was more than I could bare.

November 1, 2007...a transition

2007-11-01T14:55:00.000-04:00

Oh yeah...one thing I forgot to mention yesterday...when Jakob was 11 months old, I got fired. That contributed slightly to my level of stress and anxiety...

Luckily, it didn't take long to get a new job and within a few weeks, we were packing to move to Cincinnati.

I thought a new start in a new city may do us some good. A new place, a new home, new friends, new job and we'd be closer to my parents. It sounded like a big adventure and I was excited, nervous and definitely overwhelmed.

At this point, there was little denying that something wasn't right with my little man. I certainly had my suspicions but the doctor kept telling me that he was fine and I had nothing to worry about. Meanwhile, I was constantly searching for answers in every child heathcare book I could find and on the internet. I read about Autism. At that time (2002), there wasn't a lot of great information. There were a handful of warning signs but nothing like there are today. Some of them seemed like they might apply to Jakob but I could always rationalize it and like I said, the doctor said not to worry and I decided to trust the expert. Especially considering that I had already decided that I was an awful mother.

The move took my mind off of it for a little while. I needed the break but a trip to an island with frozen cocktails would have been a better escape than packing up everything, saying goodbye to everybody and trying to figure out where we were going to live.

During all of this, Jakob's dad and I were fighting more than ever. I think some of our friends were happy to see us go just so they wouldn't have to listen to all the bickering anymore.

And I was still fat. I'd lost maybe 35 pounds of the baby weight but considering that I'd gained 80, I still didn't look like myself. And losing weight was my last priority. There was way too much drama already without me having to give up pizza and quarter pounders with cheese. A girl's gotta have some joy in her life for crying out loud.

The truth was there wasn't much joy at all and I knew it. I wasn't happy and that just added fuel to the guilt fire. I was a new mom with a beautiful baby boy and I was miserable. I wanted so badly to enjoy all of the new mommy stuff but nothing ever went like I thought it was supposed to. Everything was a struggle. I loved Jakob so much and he couldn't have cared less if I was even in the room. And nothing I tried seemed to work. Once in awhile, I'd get a smile or a laugh and I cherished those fleeting moments. But for the most part, I felt like a failure. I was a failure at being a mom and I was failing Jakob.

October 31, 2007

2007-10-31T15:24:00.000-04:00

The first year of Jakob's life is pretty much a blur. All I can really remember is how I felt. I was a mess, a complete mess.

I didn't know what to do with him. He cried and screamed so much. He didn't like to be held. Every time I picked him up, he pushed away. I thought for sure that I was just a terrible mother and my kid hated me. I was afraid that he didn't even know me and I carried all the guilt for that because I was working. I was never there when he got up in the morning and when I was home, I was so tired. I never had any energy. I was physically and mentally exhausted.

I can remember crying spells that no matter what I did, he just kept crying. My girlfriends would come over and they could get him to stop, at least for a little while. And since they could get him to stop, I figured they had mothering skills that I obviously did not. I was convinced that I sucked.

Same went for work. I sucked there too. It seemed like I never did anything right. At every turn, no matter what I did or said, it felt wrong and like I was letting everybody down. The guilt while at work was overwhelming. I felt like I needed to be home with my baby who was more often than not, so unhappy.

When I was home, Jakob's dad and I fought constantly. It was anger like I'd never felt before. There was nothing funny at home...absolutely nothing to laugh about. Sleep deprivation, a screaming baby, a screaming husband and a house that looked like it had been hit by a tsunami. All that in addition to the work situation led me to medication. I didn't know what else to try and the anxiety was too much. I could feel my pulse race, my shoulders were in my ears and all I wanted to do was cry. But I couldn't break down. I was the Mom and the breadwinner, I had to try to keep it together.

I do remember Jakob's first birthday party pretty clearly. It was just a few weeks before we moved to Cincinnati. We had close to 30 people coming and I was nervous. I knew how Jakob reacted to a lot of people...it wasn't pretty. We had taken him to a few restaurants and it never went well. He would scream and scream until we left. He'd pretty much scream whenever we took him anywhere. So my plan was to put him in his highchair and leave him there...at least for awhile. I remember how mad some of our friends were when I asked them not to pick him up. They were so offended but I didn't know what elso to do and I certainly had no explanation for why Jakob was the way he was.

I had never felt more out of control. I went from a girl who had a pretty good grip on life to the Tazmanian Devil. I was being pulled in 20 different directions all at the same time and had no clue what to do or try next. Constant chaos. My head was always spinning. It was an awful rollercoaster ride and I saw no way to get off. For the first time ever, I didn't have any answers.

But in the back of my mind, I knew it was Autism.

October 30, 2007...I knew

2007-10-30T13:50:00.000-04:00

I think I knew the diagnosis was coming even before Jakob was born.

I had a pretty rough pregnancy. It was a pregnancy that I was told would probably never happen. From the age of 16, I'd been told that I would have a tough time getting pregnant in the first place. Once in my 20's, I was told that even if I was able to conceive, the pregnancy would be high risk.

I had just started a new job...a morning show. The hours were horrible. I was getting up at 2:30am which is what time I used to go to bed. I was having a hard time getting adjusted and I just wasn't feeling right.

It was Superbowl weekend and the game was being played in Tampa, where I lived at the time. I was getting ready to go to a big party and have more than my share of beers. But something told me that drinking a lot wasn't a good idea and maybe, I should take a pregancy test. I did...I took 2 to be sure. I was in shock and terrified. I didn't expect it and I wasn't ready for it. I cried...a lot and then I got in my car and went to the party.

The last thing I wanted to do was tell anyone at work. I was only 2 weeks into the job and knew there was a good chance that I would, at some point, have to go on bedrest. I knew no one was going to be happy about it. I was a nervous wreck.

I also knew that my marriage was in trouble and having a child was just going to make it worse. I knew it and I knew something about the pregnancy wasn't right. Fot the first time in my life, I was experiencing pure panic.

One of my biggest fears before getting pregnant was that there would be something wrong with my baby. I never feared the most common abnormalities...Down's Syndrome or CP. I feared Autism. I wrote it off to the fact that I'd had 2 bosses have sons who were diagnosed with Autism. Since that was the one that I'd had some direct contact with, that was the one that was in the forefront of my mind.

When I found out I was pregnant, I was 5 weeks along. At 15 weeks, I was admitted to the hospital for emergency surgery and put on immediate and full bedrest. I was only allowed out of bed to go to the bathroom or take a shower. For the next 6 months, the only time I left the house was to go to the OB/GYN or to the hospital. I was hospitalized 3 more times for a variety of issues before Jakob was finally born.

The station put some broadcast equipment in my home so I could remain on the air but it was weird. I never really felt like I was a part of the show and my pregnancy was never discussed. Very rarely did we even mention that I was at home, on bedrest trying to save my baby. I don't know what else to call it other than weird....disconnected, I guess.

In the first couple of months of bedrest, friends came over pretty regularly to visit but that slowed down after awhile. I'm sure I wasn't a barrell of laughs and they had places to go and things to do...fun things.

I watched a lot of tv and ate. I ate a lot...full meals every 2 hours which would explain the 80-pound weight gain. My friends snuck me Hershey bars with almonds that I hid in the drawer next to the bed. Those Hershey bars were probably my best friends.

I was nervous, scared, anxious, sad, stir-crazy, horrified and fat. Those emotions were all pretty much new territory for me and for the first time in my life, I couldn't find much to laugh about. It was rough.

And as I would lay there, on my left side with my head slightly elevated to control the acid reflux, in the back of my mind, I was thinking Autism. As I rubbed my belly and kept saying "I love you", I was thinking Autism. As I cried over the loneliness and the fear, I was thinking Autism.

October 29, 2007...how it was

2007-10-29T19:59:00.000-04:00

There was a time when I was pretty calm, cool and collected.

I didn't get mad, I handled problems by simply finding solutions. I just knew that for every problem, there was a solution and I used all my energy looking for it. No dwelling on the issue. The solutions always seemed to come quickly and easily.

I didn't get rattled. I'd see people around me getting all riled up and I'd be finding a way to laugh about the situation. I knew there was healing in the laughter. And I also knew that answers wouldn't come as long as we were bitching about the problem. The more we bitched, the more power we gave the problem and the bigger it would get. Plus it just never felt good to be upset. It wasn't fun and I was all about fun.

I'm sure there were moments when I experienced some negative emotions but it didn't last long. Mild frustrations and irritations were unavoidable but like I said, I'd find something funny in the situation and before I knew it, a rational thought came along followed shortly by a solution.

Overall, I was a pretty darn peaceful and happy person. I lit candles and listened to Enya. I fell asleep watching Letterman with my adorable cocker spaniel, Miller by my side. The two cats, Bud and Weiser were always close by.

I had an issue or two (primarily an inability to manage money and choosing men that weren't right for me) but other than that, life was pretty simple and easy.

I had a lot of fun and I did a lot of exciting and interesting things. I always had good stories to tell about my adventures.

I had no fear and I experienced a lot of joy. I smiled and laughed a lot. In fact, I was pretty much always smiling and laughing.

I had no complaints and I felt good, physically and mentally. I was skinny and loved doing my hair and make-up. Every 3 weeks, I went to the spa to get my hair and nails done as well as a massage and a facial. I had a standing appointment and it was lovely.

I would never go out in public in my pajamas. I had a closet full of trendy clothes and shoes (over 200 pair at one time). No matter how full my closet was, I could always make room for more (this is where managing money became an issue...I had pretty expensive taste and I felt that I had a certain image to uphold).

I had great friends that I spent a lot of time with. We went to clubs, concerts and football games and we loved road trips. We'd try anything once and somewhere I have the pictures to prove it.

The job was a riot and it was easy.

I had a good time no matter where I was or who I was with. I was comfortable in my own skin and never felt out of place or insecure. I enjoyed everybody, I could carry on a conversation with anybody, anywhere and sincerely enjoy every second of it. I didn't get offended or annoyed.

I occasionally still have dreams about my old bachelorrette pad with the lacquer furninture. It was cool. Honestly, I was pretty cool. And I had a cool car...a white Toyota Celica Convertible...it rocked.

Change is unavoidable, it's a part of life. And dependant on how you view change, it can be excrutiating or exhilirating. There are major life events that cause major change and most people know exactly what they're getting into when they choose major life events like marriage or children. I thought I knew...but, I hadn't a clue.

The end result for me was the disappearance of the girl described above. She probably would have survived in some capacity had it not been for the diagnosis. But it was the diagnosis that changed everything.

(Check back tomorrow...)

October 28, 2007

2007-10-28T20:26:00.000-04:00

So sorry that it's been so long! I've been very busy and so has Jakob. He's doing just great! Such a sweet kid and so darn cute...always.

His birthday party was a success. Tons of kids and lots of water. The waterslide was by far the most popular toy of the summer. He played on it every day. The water bill was a little high but worth every penny. The smile on his face every second he was in the thing was priceless.

It's still so hard to believe that he's 6. He's getting so tall and he's about to lose his second tooth. He definitely doesn't look like a baby anymore. Sometimes it hurts.

School has been going well. He seems to have adjusted to going all day but it was a little rough at first. The look on his face when I picked him up told me that he was wiped out. He still comes home a little tired but within a half an hour, he's ready to go. It's a high-energy party until 9:00 when I give him his Melatonin...then within about 45 minutes, he's sleeping...in my bed and kicking me on and off throughout the night. The sleeping arrangement is pretty comical. I have a king-size bed and he sleeps right in the middle of it. I curl up on my side with one leg hanging off the edge. Uncomfortable but cozy.

We went back to the DAN doctor and he's back on supplements and an anti-fungal. We've definitely seen an increase in his vocalizations, he's trying so hard to talk. It will come, I just know it will. In the meantime, he's using the heck out of his Dynavox. He manipulates that thing like nobody's business. He asks for food and toys...lately, he's been asking for the computer. So needless to say, I'm falling behind on e-mails. I've lost my computer to a kid who's addicted to starfall.com. I'm not sure what to do about this one. I mean, there are benefits to him learning how to use it, but what I really want him to do is connect with people and work on speech...there ain't much of that going on when he's plopped in front of dancing letters. There's not much I can do to compete with that. So, I haven't quite figured out what to do...but I will.

I have his Halloween costume ready to go...the Cat in the Hat. And for an added bonus, Aunt Sandy and I have Thing 1 and Thing 2 costumes...it should be a treat. Speaking of which, I haven't gotten treats to pass out yet. I'm sure we'll do full-size candy bars of some type and some kind of little toy. I always do something other than candy since so many kids can't have candy. That would suck...going house to house and getting a bunch of candy you can't eat. If Jakob ever decides to go house to house, I hope there will be something he can get that he'd be excited about.......like a computer of his own.

I've made a promise to myself to write something every day. I intend on keeping that promise. I have so much to write about...like I said, I've been very busy. Instead of writing, I've been reading...a lot. Book after book after book about the meaning of life, Autism and faith. I've learned a lot and I've found the answers to questions that I've been asking for a long time. I've found the answers for Jakob and me...I look forward to sharing them.

Check back tomorrow...

August 28, 2007

2007-08-28T14:11:00.000-04:00

It's birthday time!! I can't believe my little pumpkin is turning 6 on Monday. Time flies and we've been busy.

Jakob started first grade last week. It's so hard to say for sure how he's doing since he can't tell me. I haven't quite figured out at the end of his school day if he's just wiped out or shut down. There's a big difference but the look can be the same. I'd say at this point, he's handling it pretty well. He comes home and is in a fog for about 30 minutes. Then he gets his second wind and it's playtime. I don't want this month's water bill...the hose is constantly running...nothing beats playing with water.

I went shopping for presents today. I walked in the store, telling myself that I'd just pick up a few things...yeah, right. I found some pretty cool stuff and I hardly spent any money. At least nowhere near what I used to blow in one outing. I'm becoming more fiscally responsible (and it sucks). But I'm really looking forward to giving it all to him...I know there's a ball toy and some gears that he's gonna go nuts over. I'll never make it 'til his birthday. I'm already picking out which one I want to play with tonight.

I decided to keep his party simple...tons of water and lots of people. It's gonna take some manuevering to keep him calm and cool with the craziness but I know we can do it. He'll have a blast if he's in the right frame of mind. It's my job to get him to his happy place. May the force be with me. (I love Star Wars very much)

August 6, 2007...a simple smile

2007-08-07T07:26:00.000-04:00

He's just so darn funny. Even if he's screaming, he's still funny...and cute.

He's been on a kick lately...water is too much fun. I got him one of those inflatable water slides...just a little one. He loves it. The back yard has paid the price...one big patch of dead grass and right beside that, a big area of mud. Oh well, it's just grass. I'm not sure what he likes more...going down the slide and playing with the water as it pools at the bottom or watching it inflate and deflate. He got into the pattern of asking me to blow it up (by looking at me, pointing up and saying "up, up, up, up"), going down it twice and then telling me "all done". Then I deflate it, wait until it's completely deflated and he tells me "water, off". Quite a process to only go down it twice. So I decided there would be a 10-slide minimum and I explained this to him thoroughly. Oh yeah, did I mention he usually steps outside, takes off his pants and wanders around until he finds his swimming trunks?? Nudity is big in our back yard. Anywho...the 10 slide minimum...it was 2 slides and he was done. So, I start running around like a crazy person explaining that he had 8 more to go. WIth some excited encouragement, I got him all the way up to 8 slides. He was pretty adament at this point that he was all done and wanted it off. We came to a compromise...I picked him up and he went about half-way down. A total of 8 1/2 slides...not bad. If anyone had been watching, they must have thought I was nuts...crazy, sweaty lady forcing a kid to go down a waterslide.

I've decided to just leave the darn thing up. It's a multiple-times per day activity. Fifiteen minutes here, 20 minutes there. Water, water everywhere. Every once and awhile, he'll decide he wants the hose detached from the slide so he can fill up his little pool and water table or run it up the swingset and run water down the 2 slides. As long as there's water running, he's pretty happy. It's just been too darn hot out there...nice and cool for him with the water, a sauna for me.

Jakob's latest favorite video is one that has a bunch of kid's favorite songs. He sings along...he definitely has the melody and inflection. Occasionally, I'll hear a word that sounds a little like a word. He's trying so hard. One day, I was sitting and watching with him and "Where is Thumpkin" came on. So, I took a marker and drew a smiley face on my thumb. He thought it was pretty funny but wanted it off. He even took a white board eraser and tried to erase it...didn't work. Now, every time that song comes on, he draws a smiley face on his own finger...and tries to erase it. It's so cute and he gets pretty tickled with himself. We're both so easily amused.

It's only been a few weeks since he first started using his DynaVox and I can't believe how good he is with it! So smart. For most everything he wants...food, toys, bath, movie, he uses the DynaVox to ask for it. Sometimes, I have to point to "his talker" and remind him to tell me what he wants but there are plenty of times that he just does it on his own. I'll be in the living room and I'll hear coming from the moose room, "I want cookie". He gets lots of cookies. If he asks for it, I fetch. The only way he'll be inspired to use it is if he gets what he asks for...he has to see results to be motivated. I've programmed some things in for bathtime and they seem to be some of his favorites..."wipe my eyes" and "dry my ears" really crack him up.

He's such a great kid. I just adore him. Without a doubt, we have our challenges...every day. But I've really begun to not look at them as challenges...they're just Jakob and me doing our thing. It's an understanding between us, it's a lifestyle. If I feel myself starting to get frustrated or lose my patience, I just stop what I'm doing and smile at him. A big, genuine smile that comes from deep down inside. A warm look and a big smile always soothes him...and me. It's a quick fix to any issue...him wanting to do something I don't want him to do, me wanting him to do something he doesn't wanna do or if he's just in a "leave me alone" kind of mood. It may take a few minutes to work, but it always does. I'm so lucky to have figured that out...

July 22, 2007...and it continues

2007-07-23T11:14:00.000-04:00

And it continues.

There have been slight improvements in Jakob's mood but overall, he's still pretty disagreeable. I feel badly for him. He can't help it, he's just out-of-sorts and he can't pull it all together. This is what they call regression and it happens from time to time. Sometimes we take 2 steps forward and one step back. This time it feels like it's 10 steps back. Squeal, yell, squeal, squeal, squeal...quite a party.

We're back to trying to find his "Happy Place". The good thing is since we've done this before, we know what it takes. First and foremost, a lot of patience. And since he can't yet tell us what's the matter or why he's upset, we just gotta watch closely. Gotta know when we can jump in and when we gotta go slow. Gotta remind him that anything can be fun. And we gotta listen to him. The listening piece is the most important and the hardest since he doesn't have words. Respect him and his space, always.

Each of us has our limitations...stuff we're just not good at, stuff that we just can't tolerate, stuff that's overwhelming to us and stuff that upsets us. Jakob simply has more limitations than the average bear and has never been able to express how he feels about anything. He's never been able to say "I don't want to" or "I don't like that" or "please don't do that". I can't even imagine what that would be like...extremely frustrating, I'm sure. And I don't blame him for getting upset...not one bit. If I was being pushed beyond my own limitations (which I am well aware of) and wasn't able to say how I was feeling, I'd squeal too (and probably kick, slap or punch...we're so lucky that Jakob doesn't do that).

The one really bright spot right now is the DynaVox. He's starting to figure it all out. He's used it to ask for cookies, take a bath and he seems to really like the button that says "I want Mom". Pretty funny. With help, I've done some programming so the buttons are for things that he'd likely want. The food section was easy. For breakfast, cookies and banana. For lunch, hotdog, cookie and grapes. For dinner, macaroni and cheese and cookies. And for snack, cookies and candy (which is actually fruit juice snacks that we call candy for short). He and I have sat for extended periods of time and spelled words out with the keyboard. We spell the word, hit the touch screen and it says the word...very cool. It's fun to watch him learn the keyboard...I can see the wheels turning and I know he's memorizing where all the letters are. I'm sure he'll be a professional typist in no time.

And then the fun will really begin...we'll find out what he's thinking, good and sometimes maybe not-so-good....we'll see...

July 18, 2007...the aftermath

2007-07-18T18:35:00.000-04:00

The biggest issue I deal with when it's been awhile since I've written an entry is deciding what to write about. The reason I go long periods without an entry is there's just too darn much going on. Pick and choose...go with the funny stuff, the challenging stuff, the exhausting stuff, the times I wanna cry and scream, the times I just can't pull it all together or the moments of utter joy. Focus on the positive, I guess. But I don't like to do that too much...since there's more than just joy to the story. There's certainly tons of the other stuff.

We'll start with the facts. Jakob went to New York with his father for 8 days. From what I've been told, he did pretty well. It was pretty weird for me though. It was the longest I've ever been away from him and the first time I was home without him for more than a couple of days. A whole week. I was a little lost. I was like "Ok, it's Wednesday, I should be driving to Kid Camp, running errands, cooking macaroni, giving a bath and picking out the perfect getting-ready-for-bed movie" but there was no Jakob. I kept saying to Aunt Sandy "I don't know what to do"! So...I took some naps, watched a lot of Star Wars and cleaned my room. Cleaning my room was a several day adventure. It's actually livable now...kinda scary!

When Jakob returned home on Sunday, he was wiped out. Within 15 minutes of walking into the house, he was in my bed (in a clean room, at least). High fever and in pain. He'd sleep anywhere from 15 minutes to an hour, then wake up screaming. He was hurting, I didn't know why and there wasn't anything I could do to soothe him. The cry reminded me of when he was an infant and was constipated so that was my first guess...(or of course, like every mother, I feared appendicitis. My brain went straight to major surgery). It had been a couple of days since a BM so it made sense...what was causing the fever, I hadn't a clue. So we went to the doctor...a virus. Giving him a stool softener, Motrin for the fever and waiting it out were our instructions. So for the next 4 days, it was no eating or going potty, intermittent fevers, waking up crying and just generally acting tired and miserable. Poor little buddy. He missed pretty much all his summer classes which is double-tough since his sanity is so dependent on his schedule. It was a big bummer...especially considering I was on vacation...what a way to spend one of the two weeks I get per year. But I was glad I was able to be home with him and comfort him as much as he'd let me.

So here we are this week trying to get him back into the swing of things and it's been tough. Lots of squealing and I mean lots. The kind of squealing that pierces the ears and shoots down the spine...the worst kind of squealing there is. He's been disagreeable, argumentative and unwilling to do much that's asked of him. I understand and I feel so badly for him. He's frustrated and confused. If I didn't have the words to express what I was feeling, I'd probably squeal too. So we've taken a few steps back and we gotta start over. We've been at this squealing place before so we know how to fix it, I just hope we can fix it fast. He's already missed two full weeks of summer programming and this week has all been about fixing what's gone wrong...frustrating for me too. I'm sitting in the lobby right now at one of his summer camps and I can hear him squealing...poor therapists. All I can do is say "I'm sorry"...

Hopefully soon, Jakob's communication frustrations will be minimized...we have the DynaVox!!! It's a pretty amazing piece of technology and I don't think it's gonna take long for him to be a pro. I guess the best way to describe it is it's a small computer that talks for him. It's a touch screen and he touches the pictures or words that he wants to say and it says them. There are up to 40 pictures on one page and his ability to scan is amazing. I'll ask him to show me a word and he finds it...fast. He and I have done a little playing with it and I've decided that he's a DynaVox Hog. He really doesn't let me play with it much...and he squeals when I try. He actually hit "Mom", "wait", "mine", "please" on it the other day. Pretty impressive, I especially liked the "please"...manners are very important. It's gonna take a little time but with the help of his Solid Gold Therapy Team, we'll get it down. Programming it will be a different story. I spent a couple hours at the hospital the other day and I should've taken notes. I'm not exactly a computer wiz but it's time I became one. At least now I have a really good reason to learn.

I'm very excited about my latest project...helping to bring WALK NOW for AUTISM with Autism Speaks to Cincinnati. We're forming committees, talking to venues and setting the date. Every time I think about it, I start to tear up (I'm still in that cry-at-everything-autism stage for some reason). There are so many passionate parents and service providers that I know that this WALK will be a huge success. The Autism community here is amazing and I can only imagine what we'll be able to accomplish as we all work together. That's the thing...all of us working together as one big cohesive unit...one strong loud voice ...(here I go again crying, better stop, I'm in public right now). More on Autism Speaks to come later when I can cry in private...go to www.autismspeaks.org to learn more about the organization.

The squealing in the back is really heating up...I better start preparing myself, it may be a long night...

June 27, 2007

2007-06-28T09:20:00.000-04:00

Eventful, very eventful.

Jakob's summer schedule is in full swing and he's loving it. He's going to 2 different camps and having a ball. We're doing ABA at home, speech, OT, PT, piano, swimming , music therapy and extended school year. Like I said...eventful. The scary part is we're still not even close to the recommended 40 hours per week. I'd love to get him 40 hours but it's so hard. All I know is the more therapy he gets, the better he does. Structure and activity are everything to him. He's like me...if left to his own devices for too long, he gets ansy and irritable.

The DynaVox (communication device) will be here soon. I'm so excited. He's trying so hard to talk. He's pretty much trying to say everything we ask him to say. It's so cute and sweet. He's able to make a few sounds that are understandable...he's getting there. At least I can tell that he knows exactly what he wants to say, he just can't get the words out. And since he's reading and writing, he should just go to town on the DynaVox. I can't wait!! I'm so anxious to hear what he's thinking...even if he decides to get on my case a little bit. The other good thing we're noticing is he's using a lot of inflection. It's most noticable to me when he's singing and he's singing a lot...his favorite right now is "I'm Proud to be a Cow" from one of his Sesame Street videos. It's so cute, it cracks me up. He was singing it loud and proud right before falling asleep last night...hysterical.

He's doing so much writing and reading and it's becoming so apparent that he's aware of what's going on around him. He follows directions, he answers questions, he asks for what he wants. He has all of us scrambling to figure out what to do with him next.

We've decided to get him back to the DAN doctor, it's time. Of course we can't get an appointment until September but that's ok. We can start all the supplements back up when he goes back to school. One thing I've definitely learned is someone other than me has a better chance of getting him to eat or drink something new. He's quite the booger when it comes to any kind of dietary change. He's still extremely picky...hot dogs, cookies and macaroni and cheese with an occasional banana or grape. That's it. Oh yeah, and fruit juice snacks. And I thought I was particular about what I put in my mouth...

One other thing I really wanna do is get Jakob an Autism service dog. The more I read about them, the more I want him to have one. Some of the stories about kids and their dogs are amazing. Animals and kids just go together and can create a bond like no other. Plus, it would be nice to have an extra set of eyes on the kid...especially when he's trying to go for a walk all by himself. I'm filling out the application.

It's so awesome how far Jakob has come. I know we still have a long way to go but he's got it in him. It's hard to believe he's the same kid that I was living with 2 years ago...the kid who never reponded to his name, didn't follow any simple instructions, didn't want to be held, didn't want to do anything other than watch the same videos over and over. He's so connected now and genuinely enjoys people...well, people who know what to do with him. I've discovered that he's a great judge of people...if Jakob doesn't take to a person, I probably won't either. He's my people-screener and it saves us both a lot of time.

Jakob's not the only one who has become a totally different person in the past couple of years, I have too. So many things about me have changed and it goes beyond having a different perspective. Yeah, I see the world in a new light because of Jakob and yeah, some things that used to really matter to me don't anymore. But I think somewhere along the line, while I was trying to get inside his world to just look around a little, I ended up moving into his world with him.

For example...I used to spend 5 nights a week in nightclubs...sometimes elbow to elbow, music blaring, people yelling and I loved it. I felt right at home. Now, I just can't take it. Crowds of people and lots of noise send me into a panic attack...heart pounding, can't breathe, just wanna run, gotta get out of there. And whenever that happens, all I can think about is how Jakob used to feel every second of every day. No wonder he cried and screamed and tried to run...I get it.

Another thing I can't take is too many things going on all at the same time. I cannot cook his macaroni, talk on the phone, do a load of laundry and check my e-mail all at the same time. It's too much. I get frazzled and inevitably mess up at least one of the things. I can't tell you how many loads of laundry have sat in the washing machine for 3 days before I remember it's even there. Focusing is an issue. And I get frustrated when I can't do it all and just want to be left alone. I see Jakob go thru that regularly. If he's had a long day, he just wants to do his thing and not be bothered with anybody or anything. I get that...unfortunately, rarely do I get the peace that I so desire. There's always something I have to do whether I want to or not...the price I pay for being a grown-up.

I've also taken a few steps backwards in the social skills department. I used to be able to carry on a conversation with anyone, anywhere. And depending on the day, I still can but on those "off" days, it's better for me to stay at home. I really don't know how to describe it other than sometimes I just really feel awkward and out of place...I can't "connect". It becomes another one of those "get out as fast as I can" kind of situations. I may say something really stupid or ask a dumb question or just completely space out. Don't know why it happens, it just does. I'm most succeptible to it when I'm tired and I've been tired a lot lately. I hope this is just a temporary thing and it'll stop soon.

It's just odd...it's as if my inner Autism is coming out. In the end, it helps me understand Jakob at a deeper level so it's a good thing. I figure if I can come up with a way to pull myself out of these weird funks, then I can help pull Jakob out of his. It's a learning experience for everybody. And learning is fun...that's what Mom and Dad always said...

Mother's Day 2007

2007-05-13T17:37:00.000-04:00

On this Mother's Day, for all Autism Moms...

I wish for you a day without yelling, screaming, arguing, tantruming, hitting, kicking, fighting or crying.

I wish for you a day without your child running away from you when all you want is a hug.

I wish for you a day without pushing away when you try to give your child a hug or a kiss.

I wish for you a day where being a Mom is easy.

I wish for you a day filled with smiles and laughter.

I wish for you a day where out of nowhere, completely unexpectedly, you get a big hug followed by a big kiss.

I wish for you a day where your child happily does everything you ask of him.

I wish for you a day where you never have to wonder if your child loves you.

I wish for you a day where your child is happy to see you when you walk into the room.

I wish for you a day where you can walk into another room and not have to worry about what will happen while you're gone.

I wish for you a day where you don't have to listen to the same song over and over and over again.

I wish for you a day where you don't have to watch the same video over and over and over again.

I wish for you a day where your child looks you in the eye and connects with you, even if it's only for a fleeting moment.

I wish for you a day without tears...your child's or yours.

I wish for you a day without worry about what the future holds.

I wish for you a day without wondering how you're going to pay for all the therapies your child needs.

I wish for you a day where your friends and family gather and they love your child just the way he is.

I wish for you a day without fear, stress, sadness or anxiety.

I wish for you a day of feeling "normal".

I wish for you a trip to the store with no stares, dirty looks or parenting advice from people who have no clue.

I wish for you a day with no struggles.

I wish for you a day where your child looks at you and says "I love you, Mommy".

I wish for you a day where all the dreams that you dreamed about being a Mom come true.

I wish for you a day of peace, love and hope.

I wish such a day for you because you deserve such a day.

Only we Moms of children with Autism understand. No one else will ever know the pain, sorrow, desperation and fear that we feel to our core every minute of every hour of every day.

Luckily, we are able to find joy in the little things. We've learned to appreciate moments that parents of typical children take for granted and we cling to them. Those are the moments that we live for, the moments that give us the strength to carry on. And we will carry on for we have a purpose...to save our children.

Because of all that you do, Autism Super-Mom, I wish for you an amazing Mother's Day.

Because you are amazing.

May 6, 2007

2007-05-07T20:53:00.000-04:00

Things are starting to slow down a little...well, not really. Still gotta figure out Jakob's summer schedule and what we're gonna do about school next year. Stay in kindergarten another year or go on to first grade...not sure yet. There are benefits to both, just gotta decide and commit. August is just so far away and it's impossible to predict where he'll be and what will be best for him. So much of that will depend on his summer schedule and what programs we get him into. So, that's heavy on my mind right now.

I saw a movie today...made me laugh, made me cry. "Snow Cake", starring Sigourney Weaver as a woman with Autism whose daughter is killed in a car accident. Wow, she did an amazing job. I saw some of Jakob in her character...she said so many things that I know Jakob thinks. Made me giggle. Great movie...I highly recommend it. Hopefully, people who see it will get a better idea what Autism is all about.

I love all the attention that Autism has been getting...movies, specials, news segments. Celebrities are coming out and talking about their kids...Toni Braxton, Jenny McCarthy. Awareness, awareness, awareness. Lives of families living with Autism will get better when people understand what our lives are like. Compassion grows from understanding.

I was so excited when News Channel 5 decided to do a story on Autism that featured Jakob. They followed us from school to therapy and back home. It seemed to me that so many of the stories about Autism focus on the sad and scary aspects of the disability. No doubt about it, Autism is very sad and very scary, but I don't want people to be scared or sad when they meet Jakob. I wanted to show the "softer side"...and I think Carolyn and Kurt (producer and photog) did a great job of that. They had over 3 hours worth of video that they had to narrow down to 2 1/2 minutes. Tough editing job...glad I didn't have to do it.

Jakob had an evaluation for an augmentative device last week. Little booger is too smart for his own good. He mastered the two basic models in no time and was well on his way to figuring out the really complicated one. So, of course, that's the one that he needs...the fancy, expensive one. It's called a DynaVox and insurance probably won't pay for any of it (price tag...$7000). I don't exactly have an extra $7000 laying around but I'll figure it out. This thing is unreal...it's basically a small, flat-screen computer that speaks for Jakob. He touches pictures and words and it says the words. He can type words, build sentences, communicate his wants and needs...it's awesome. How can I say "no" to that?? I can't, so it looks like we'll have a DynaVox sometime this summer. I'm excited. Whatever it takes to help Jakob...

I can tell that Jakob's gonna have an interesting summer now that he's getting older and braver. It finally happened...it was inevitable...he decided to let himself out of the fence in the back yard and go for a walk. We got home from school, he went in the back yard and I took his backpack in the house. I checked his backpack for notes from his teachers, poured myself a Mt. Dew and was headed into the back yard when the doorbell rang. It was the neighbor letting me know that Jakob was on his way up the street. A crowd of moms was gathered outside waiting for thier kids to get off the bus but he wasn't stopping for anybody. By the time I caught up with him, he was about 3 houses down. No big deal, no danger. I wanted to live in a neighborhood with lots of kids, far back from the road on a lightly-traveled street since I knew he'd likely make a break for it at some point.

He was funny. When he finally realized that I was coming up behind him, he turned and grinned at me like "Hey Mom, I'm glad you decided to join me". Later that night, we went for another walk and we worked on "stop" and "wait". He's getting it...by the end of the weekend, he never got more than 10 feet in front of me and whenever he did, he stopped on his own. Everytime I told him to "stop", he did and he got really good at "wait". Meanwhile...all the doors are tied shut and I'll be installing new safety devices so he can't get out. Booger.

A short time after his little neighborhood adventure, he fell of a swing. He was trying to adjust his butt in the swing and he let go...oops. He didn't fall far but he did a heckuva back somersalt and landed on his knees. He looked at me and the alligator tears started. He cried for a couple minutes and it was over. He got right back on the swing. No fear...for him anyway. I'm gonna be a nervous wreck, but what can I do...boys will be boys...

April 29, 2007

2007-04-29T18:52:00.000-04:00

I've been crying for 8 days now. I'm tired. I can't believe how sensitive I've become in my old age. Stuff makes me cry...especially anything to do with Jakob or Autism. So much has happened in the past week that the tears have just been flowing...

It all started at the Autism Speaks meeting last Saturday morning. I got all emotional when I looked around the room and saw parents, providers and support groups all in the same room. It was like the "who's who" of the Cincinnati Autism Community...and they were all together. Something I'd never seen before and it was pretty powerful. I can only imagine how much we can accomplish if we all work together. Wow.

Then, Saturday night was the ceremonial first pitch at the Reds game. I spent most of the day trying to keep Jakob as happy as possible. I wanted that kid ready to go. Talk about focus. I was so focused that I don't really remember a whole lot, it's bit of a blur.

I do remember that Jakob was awesome. No problems getting ready at home. He changed into his uniform, ate early, went potty and got into the car without incident. We had to be at the stadium at 6:15 and that had me worried. Jakob's "big" potty time is usually between 6:30-8:00PM. I was terrified that we'd be on the field and "oops"...so I was pretty excited when he took care of that before we left. It might sound like a silly thing to worry about...but had there been an "oops", he would have wanted the "oops" out and he would have tried to take it out himself, right there on the field. That would have been a problem. So anyway...it all worked out.

Jakob dealt with the crowd, the walking and the waiting. He was taking it all in...the lights, the sounds, the music, the people, the whole ballpark. As we hung out on the on-deck circle waiting for his time to hit the mound, he sat on my lap facing me and snuggled. He was so calm that I was afraid he might fall asleep. It was so sweet, he'd look around the stadium then look at me like "Mom, what have you gotten me into this time?" and then he'd lay his head on my chest. What a pumpkin. I can't honestly say whether he was calm and cool or overstimulated and shutting down. Either way, it was a victory.

I started to tear up a little bit when the Jumbotron started playing a piece of "The Road to the First Pitch". Luckily, I'd already seen it several times so it wasn't too overhwelming. Jakob watched too. I'm not sure if he was grasping that it was him up there with a bunch of people who loved him a lot or if he was just thinking "huh?" But he was paying attention to it and that was great.

When it was time, he took my hand and followed me onto the field. We stood a little farther away from the plate than we had practiced. I knew he could get it there and I wanted to show him off a little. I put the baseball in his hand and told him "you're gonna throw it to Grandpa". He held the thing pretty tight and put his arm in position. His eyes were wandering all around the stadium, not sure what to look at so I remember holding his head and turning it toward home plate. I told him a couple more times, "throw it to Grandpa" and I started counting, very slowly and deliberately, "one, two, three...throw it"... and he did it. He did it.

He heard the crowd but I don't think he understood that they were clapping for him. As we walked off the field, he could hear the kind people in the stands say "yeah, Jakob" and "go Jakob". He lifted his head so I know he heard them and knew they were talking to him. There was a man on the sidelines who reached over to give Jakob a high five...and Jakob gave it to him.
That whole night was the coolest thing ever. And it was wonderful to share it with my family and so many people who have made a place in their hearts for Jakob. So many of his therapists and teachers were there. It was so nice. And it was so great to sit with the Autism Society for the game...the kids and their families. The kids all seemed to be doing really well. I was concerned about us sitting so close to the fireworks. That first homer made us all jump. I know it knocked a couple kids for a loop but there were some that handled it beautifully.

Jakob was pretty cute in the stands. He sat in his seat with his feet on the seat in front of him. He kicked that poor woman more than a couple of times. She was very understanding and forgiving. He was pretty quiet sitting there, unless I tried to put his feet down. When I tried, he let me have it a couple times with squeals and stomping of the feet. Battle over...he won. So we sat thru 3 innings with his feet on the chair. After 3, he stood up, put up his seat, told me to get up and grabbed Aunt Sandy by the shirt and told her to get up. When I asked him if he was ready to go, he said "o" and signed "go". So we left.

He remembered exactly how to exit the stadium and where we had parked.

Most of the way home, we were all singing "Take Me Out to the Ballgame". Jakob really likes the "1,2,3 strikes, you're out" part. He counts on his fingers and does the umpire signal for "out". Then he giggles, a lot.

I sure do like that giggle.

(In my next entry...the Channel 5 piece and Jakob's most recent evaluation...)

April15, 2007

2007-04-15T20:16:00.000-04:00

Wow. Talk about busy. It's a little nuts. It's all good so I don't mind the craziness.

Let's run down what's been going on since my last entry...

Two weeks ago, we built an Autism Awareness float for Q102's entry in the Reds Opening Day Parade. We got Second Place...in our first attempt in a competition!! It was VERY exciting!!

Last week, we shot a lot of video for our documentary "The Road to the First Pitch", we threw a fundraiser that raised money for the ASGC and we had a Jakob's Playdate at ABC.

This week, we prepare for the first pitch and finalize the details for the big Autism Speaks presentation on Saturday morning.

And all that on top of how wonderful Jakob has been...

My parents were here last weekend and I've never seen my Dad have so much fun with Jakob. They were reading "The Monster at the End of This Book"...which my father read to me at least 500 times when I was Jakob's age. Dad never has been able to just stick to the script and he's quite animated. Jakob loved it. Dad also enjoyed Jakob's reaction when he twisted his ears and made a funny sound. But nothing really compared to the running around the house singing "All around the mulberry bush, the monkey chased the weasel. The monkey stopped to scratch his butt...pop goes the weasel". Dad was never very good at sticking to the lyrics either. And when Dad sings...let's just say "he's really feelin' it".

We even had some unbelievably sweet moments...like when Jakob was starting to get sleepy and he curled up beside Dad on the couch. All the girls in the room went "aww"... and I think my Dad really dug it...I know Jakob did.

This morning with Jakob was an award-winner...definitely one of my "Top 5 Moments". Jakob was doing some writing...he loves to write words from his "Signing Time" videos on index cards (I should own stock in index cards). I took a piece of construction paper and wrote "Mommy loves Jakob!" on it. He grabbed a fresh piece of paper and a pink marker and wrote "Jakob loves Mommy"...with no prompts from me. He just did it. I melted.

That piece of paper is hanging on the fridge and will be framed in the near future.

And...sometime this week, I'd really like to get my next tattoo...it's a simple one..."Believe".

March 26, 2007

2007-03-26T21:40:00.000-04:00

The adventure begins...it's spring. It's time to play outside. Outside is fun...lots to do. There's a trampoline and a swingset with slides and everything. And...there's a sandbox. So far, he's been pretty good with the sandbox. He's gotten in there a couple of times but didn't stay too long. I'm gonna keep my eye on that one. If he likes the sand to the point where all he does is stim on it, it may have to go away. I hope that doesn't happen...I know he really enjoys it. And I can't wait for him to remember the hose...

Spring is always a busy time. Jakob's social calender fills up quickly and we seem to be going all over the place. I dragged him to a fashion show and a slumber party over the weekend and he was a dream. He just hung out. He didn't get mad, he didn't pull me to the door, he didn't squeal. He was great.

Now, what I've learned is...if he's great in public, there's a decent shot that he's gonna make me pay for it. And, he did...a little bit. When we got home, he had a lot to do and not much time to do it. He had to read his books (all 7 of them), arrange some toys, eat some cookies, and get a drink. So...we were up awhile...til about 10. That wasn't too bad.

It was the one-man party that started at 2:30 am that got me. The party went on 'til 6:30ish. Party, party, party. And I'm afraid that I set myself up for this one. I think I screwed up with the alphabet sheets. He loves the alphabet, ya know...so you'd think that alphabet sheets would be great, right? Wrong. When I heard him talking at 2:30, I found him trying to rearrange the sheets. I think he was trying to line up the letters on the flat sheet with the letters on the fitted sheet. I'm still not sure. I tried to help him but I couldn't figure out exactly what he was trying to do. Finally, I pulled his winter sheets out of the closet. He took one look at those and tore the alphabet sheets off the bed. He even helped me put his flannel Christmas sheets back on the bed. This process took at least 45 monutes...and I was hopeful he'd climb into his flannel sheets and go back to sleep. No luck there either. He headed down the stairs. It was time to read.

Pretty much everything after that is a blur. I just remember him having a great time...until 6:30ish. Yup...he got me. He got me good. Turkey. I guess that's what I get for taking him to a 9-year-old girls' slumber party.

March 19, 2007

2007-03-19T21:21:00.000-04:00

I cried. I couldn't help it. It was so awesome. Priceless. He did everything he could...he scampered, he marched, he waved his flag, he clapped his hands...he did it all. I cried. It was just too much for me to handle.

It was a proud moment.

Another sign I need for the house...

"Life is not measured by the number of breaths we take,
but by the moments that take our breath away."

Tonight was one of those moments.

It was so great to see him up there...handling the strange environment, the lights, the crowd, the noise. Not to brag, but as far as the dance moves were concerned, Jakob was one of the most accurate performers. And it's so sweet to see him with the other kids. The one little girl standing next to him...I've seen her with Jakob before. I can just tell that she looks out for him and gives him some help if he needs it. I have to send her a thank you note. She's so cute and so sweet. I love her.

I have it all...audio, video and still photos. I can't wait to share.

I need a tissue.

March 18, 2007

2007-03-18T20:10:00.000-04:00

Wow...we've been busy.

Jakob was AWESOME for his EEG. I'm still saying "Wow" every time I think about it. He wasn't a fan of getting the stuff put on and taken off, but that was expected. He doesn't like feeling confined...and his wrists were strapped down and he was in a papoose. He doesn't like his head being touched...they had to glue a lot (I'd guess at least 20) of thingies onto his scalp, then they were wrapped and taped, then a hat and more tape on top of that. He was pinned down for about an hour. I was sweating by the end of it. I was counting backwards, singing, playing peek-a-boo and whatever else I could come up that might make him smile.

All things considered, he came through like a champ. There was screaming, hollarin' and some big alligator tears but I never lost him. He continued to make eye contact and smile every once in a while. I call that a victory.

It was at home that I was most proud. He wasn't cranky, he didn't try to rip it all off his head, and he never got mad at me. He was an angel. He read his new audio books and some of his old ones. He watched a couple of videos (Signing Time and Animal Adventures) and we hung out. He was affectionate and he even took a nap. He and I spent the night together on the couch with my head by his feet. I figured that if he moved, he'd kick me in the head and I'd wake up. He slept great...

The best part of all is the EEG came back normal...no seizure activity. Whew...

We have a couple of events coming up that Jakob has really been practicing for. His big concert at school is tomorrow night. We've been singing the songs and doing the hand motions every time we're in the car. He's got it...the question is, will he be feelin' it when he's on stage? It all depends on that...if he's feelin' it. If he's really feelin' "Grinding Corn", everybody look out.

The other event is a BIGGIE...Jakob is going to throw out the first pitch at a Red's game. Wow. We are soooo excited. Spring Training started 10 days ago. He's a lefty with a heckuva fast ball. We're documenting it all for a video segment called "The Road to the First Pitch". (The game is Saturday, April 21. It's a night game and ticket order forms are available at www.autismcincy.org.) More on this to come...

I just have to say that Jakob has really been a dream lately. He's doing so many new things...he's impressing everybody. We're all wondering what's going on....what's changed...what are we doing differently that's working...and none of us have an answer. So we're just gonna go with it and figure out what to teach him next. His imitation skills have been amazing so there are a lot of possibilities. I'm looking forward to finding out what our next adventure is going to be.

March 7, 2007

2007-03-07T09:18:00.000-05:00

Another first last night and it was a really good one.

I'm pretty sure that Jakob is reading. I've gotten him a few audio books and he loves 'em. "Green Eggs and Ham", "Chicka Chicka Boom Boom", "Moonbeam Bear" and two Beatrice Potter stories, "Tale of Peter Rabbit" and "Jemima Puddle-Duck". He puts the cd in and points to all the words as he reads along with the cd. It's very cute.

He requests my involvement with "Moonbeam Bear" and "Tale of Peter Rabbit" so I sit next to him and point to the words with him. After a very inspriring reading of "Peter Rabbit" last night, he wanted me to read "Jemima Puddle-Duck" to him without the cd.

Jakob has rarely had the time, patience or interest in being read to...especially a long story. So I was a little surprised that he was wanting me to do it. I plopped him on the couch next to me and we read the whole darn thing. He turned the pages and was engaged the entire time. I was like "wow". It was so nice just sitting there reading a book to him. A simple pleasure...one of those simple pleasures that I've waited a long time to share with him.

After the reading was done and he was just sitting there nestled under my arm, we had a little chat. I told him how I know that he's having all kinds of thoughts and ideas running through his head and how I want so badly to know what they are...that we're trying so hard to help him find the way for him to tell us...and that I needed him to keep trying. I told him how much I loved him and believed in him. I think he got it. And as I sat there smiling at him with tears running down my face, he laid down, grinned at me and fell asleep.

Firsts are the best...

March 6, 2007

2007-03-06T10:37:00.000-05:00

I'm still a little bit in shock that it went so well. Jakob had his appointment at the cardiologist yesterday. (I don't know if I've mentioned this before but Jakob was born with a hole in his heart. The doctors have been telling us since his birth that it was a very small hole that would probably close on its own. We never worried too much about it since we were told that even if it didn't close, it wouldn't create any problems for him.) We were dreading this appointment, fully expecting Jakob to be uncooperative. As always, I planned and I was hopeful and Jakob was PERFECT. He let the nurse take his blood pressure and use the stethoscope. And then, he let us strip him down to his underwear, put electrodes all over him and he laid still while they did the EKG.

Unreal...not the same kid I was living with a year ago. Now granted, so much of that has to do with what we've figured out about Jakob. What works and what doesn't. First, it has to be made a game and it's gotta be fun. He loves to be told that he's doing a good job so he needs to be told that every step of the way. No such thing as too much praise for this kid. The best trick I've learned is using a countdown. If he knows how much longer he has to sit still or lay down, he's more tolerant. This is how we do haircuts and get him out of the tub. I start the countdown (usually at 30) and if I start to go too slow, he'll let me know. Sometimes, he even takes over the counting on his own. But he seems to be so focused on the numbers that he tolerates whatever it is we're doing to him. It's a great trick and I use it as much as possible.

It was great news at the end, it appears the hole is closed and we no longer have to be concerned about it. I like that...something NOT to be concerned about.

Now we just have to get thru the 24-hour ambulatory EEG next Monday. I wonder what number I'll have to start counting back from to make the countdown last 24 hours...

February 28, 2007

2007-02-28T09:19:00.000-05:00

While I've been trapped in the house with the flu, I've been looking around and taking inventory of the signs I have up. I have more than a few...

We Create Our Tomorrows by What We Dream Today
Believe
Hope
Relax
Peace
Dream
A Happy Childhood Lasts Forever
Faith
Joy
Scatter Kindness
Blessings
We Believe in Santa
Laugh
Because Nice Matters
Live Laugh Love
Serenity
Home is Where Your Story Begins
Normal is Just a Setting on the Washing Machine
Imagine
Harmony
Create
Smile
Hugs
Dwell in Possibility
Expect a Miracle
Peace on Earth Begins with Me
Simplify

I think I was onto something...

February 21, 2007

2007-02-22T08:39:00.000-05:00

Wow. That was funny. Kinda gross but very funny.

We have made huge headway in the potty-training department. We pretty much got the pee pee part down. The only time I've had an issue is if he really has to go (and I can tell cause he does a pretty entertaining pee pee dance), but he's in the middle of doing something. Something very important. And if he's in the middle of something, he ain't leavin' it until he's done. So...if he's watching a "Signing Time" video, we could have an accident. Other than that little glitch, he's been great. I've even taught him to "dab, dab, dab" himself to clean up drippage and he wipes the toilet seat before he flushes. He's good...really good.

The number 2 thing is a different story. I'm lucky if I catch him in the middle of the movement. If I catch him, we make a dash for the bathroom in hopes that we can finish the job in the bowl. Sometimes we make it but most of the time, we don't. I realize that it's happened when I see him walking a little funny and he's headed for the bathroom. Well, tonite, I caught him heading to the bathroom so I ran in and flipped up the lid, yanked his pants down to his ankles and plopped him on the seat. But he was done. We missed it. Usually when this happens, I take the contents of his underwear and drop it (or them) in the toilet and make a big deal about "poopie goes in the potty". I messed up. I took five steps out of the bathroom to grab the wet wipes and when I got back, he had put his underwear and his sweatpants in the potty and he was trying to pick up a runaway with a piece of toilet paper. God love him, his was putting the poopie in the potty.

Ooh...and last night, I realized just how many timea a day I tell Jakob I love him. (It's a lot). Every time I say it to him, he does the sign for "I love you" back to me. Precious, I tell ya. LAst night, he was almost out and he had this half-grin happy face. I whispered "I love you" to him and with his eyes still shut, he signed it back to me. If only I'd had a camera...it was the cutest darn thing that I've ever seen.

I'm keeping him.

February 13, 2007

2007-02-16T10:47:00.000-05:00

This was the week...the EEG. But, good-old Cincinnati weather didn't want to cooperate so we'll be doing it in about a month. No biggie, it's not an emergency kind of situation. I was just ready to get it done. I'm tired of worrying about it. And, I've put a fair amount of brain-work into the preperations for the event. I was ready. I changed something in every room in the house. I made sure there was at least one of Jakob's favorite things in each room. I even brought out some stuff that he hasn't seen in awhile...stuff I know he'd still love. I wanted the house to be the best "Jakob's World" it could be. It should take me about 2 days to screw it all up so I'll have to start over in a couple weeks. That's ok...I already have the plan in my head and now that I have more time to work on it, I can expand it if needed.

Have I said lately that Jakob is the cutest, sweetest kid EVER?? He wrote "I Love You" on his Magna Doodle the other night and he's been perfecting the sign for "I Love You". It's sweet beyond compare...

I've been having flashbacks lately of when it wasn't so fun and easy. Jakob is not the same child that lived here 2 years ago. That child was so uncomfortable in his own skin let alone around other people. He's so inter-active now that there are times I just can't believe how far he's come. It's pretty cool.

The past couple of weeks have been a recipe for disater but Jakob has come through it beautifully. It started with strep throat and then the weather hit. No school, no therapy, stuck in the house...complete change of routine. He's been a champ. No significant issues and not one meltdown. Very impressive. I don't know how much longer he can last like this...so Mother Nature better lay off for a little while or I need to buy my own fleet of snowplows so all the kids and teachers can make it to school and they won't have anymore snow days...just a thought.

I really couldn't believe it. The kid was running a doozie of a fever, had a nasty cough and his little cheeks were so red. His throat had to be hurting. He was moving a little slower than usual and his appetite wasn't so great but other than that, he was perfect. A really good patient.

As a result of the running a fever in the middle of the night, he started sleeping in bed with me. It's been a week and a half. He's still in the bed. He likes it in there for some reason. Not sure if it's just the size of the bed or the pillow and blanket he gets or the fact that the bed is in a corner...or maybe it's me that he likes...just a thought. All I know for sure is he gets in the bed without any kind of fight and he won't fall asleep unless I lay there with him. I can tell when he's about out...he's laying on his tummy with his head on his blankie looking at me. His eyes get really heavy and he gives me this big grin. He fights it...checking several times to make sure that I'm still laying there before he finally conks out. Precious, I tell ya, just precious.

I've been asked if I want Jakob to participate in his class concert. I guess it's a pretty big affair. It's at the high school and he'd be up on stage with a lot of kids. The concerns are whether or not it will be overwhelming for him with all the lights and all the people, he doesn't sing, and he does the hand motions but usually only after the song is over. In all honesty, when the school called me to talk about it, I was just waking up from a really good afternoon nap. I wake up very slowly (just like Jakob) so I was a little disoriented throughout the majority of the conversation. I was alert enough to simply ask for a couple of days to think about it.

After I became aware of my surroundings, my decision was easy. Yup. He's in. We're gonna try it. I'm gonna get a copy of the song on CD so we can practice at home and in the car. I will learn every clap and every stomp. We'll be ready for the performance and all we gotta do is get him dressed, in the car, out of the car, in the door, and onto the stage. Once he's up there, he just has to stay there and look cute. The last part is easy...the looking cute part. I'm ready to try it and I think Jakob is too. I believe that once he sees a bunch of kids in the parking lot and they're all going into the school, he will follow. Just like Christmas Eve, he's gonna wanna know where everybody's going. But if we're not that lucky, I'm not gonna push him. I will not force him to do anything...there will be no screaming for Jakob. We will go at Jakob's pace. If it don't go smoothly, it don't go. And I will know when to pull the plug. I really do feel good about the whole thing...I think we'll pull it off. (As long as he has a good day leading up to putting on his shoes to get out the door. Once the shoes are on, it's a go.)

Fact is, there's always a shot at something like this of somebody being a jerk. We may get some funny looks...definitely the looks of "I wonder what's wrong with that kid" and "that Mom has no control over her son"...and that's ok. I can take it. I couldn't be any prouder of that kid, he's amazing even if he does a solo performance of the song after the rest of the group has finished singing. Actually, I think that would be awesome...better remember the video camera...

January 31, 2007

2007-01-31T21:12:00.000-05:00

In honor of today, my Mom's birthday, I dedicate this entry to her...the coolest Grandma Jakob could ever ask for...

The toughest part of living away from home (home is where I grew up...and I'll always call it home), is that my parents are missing out on a lot of stuff that I know they would find hysterical and endearing. They dig their grandson, just the way he is. Every day, Jakob does at least 5 things that would make Mom and Dad giggle. Jakob's funny...very funny...if you get his sense of humor. Mom and Dad get it. Jakob and I are very lucky.

Had Mom been here for Jakob's discovery of the beauty of fresh batteries, she'd have been bent over. One of Jakob's Christmas toys...(a bear that tilts his head side to side and reads "Twas the Night Before Christmas") was starting to read slower...and slower...and slower. So in a moment of brilliance, I decided to teach him the concept of new batteries. I was smart enough to not let him see me screw off the cover for the batteries, but I did show him that I took out the "old" batteries and put in the "new" batteries. He was amazed at how immediately following this procedure, the bear was talking at full-speed again. Well..........I need to mention that the bear is not the only battery-operated toy that he has full access to... So now, anytime one of these toys starts to sloooowww down, he grabs the toy and takes me to the kitchen drawer that he saw me get the batteries out of, and he gives me this "please, fix it, Mom, please...I can't live like this, Mom" look. Ya know the one...the one I'm a sucker for every time.

I ran out of batteries the other day. That wasn't good. I scrambled, found some battery-operated toys that he wasn't playing with and did a swap. Of course those batteries only had about half-lives left in them. So as those batteries were dying, I was running around yanking batteries out of every spare toy I could find...I had to have back-up. I'm going through batteries like nobody's business. Time to go to Sam's Club...great deals on batteries.

It'a all my fault and now I'm paying for it. Never should have shown him the beauty of new batteries...

Stuff like that happens all the time. He catches me doing something and I'll be darned if he doesn't jump right in. Of course, when I want him to do something, I ain't got a shot, but if I'm plunging the toilet and he sees me doing that...the plunger becomes his new favorite toy.

It's fair to say that I'm always on my toes and there's never a dull moment.

I think my parents were granted the wish that every parent wishes for...that their child gets a child just like them or even a little bit ornerier...

Once again...thanks Grandma and Grandpa...

Jakob's Journal

2007-01-17T11:12:00.000-05:00

Panic is over. Everybody's fine. If Jakob's having seizures, they're small. We'll figure it out and do whatever we gotta do.

Panic is unavoidable...how long the panic lasts is up to me...and it's over, for now.

Jakob has been on a roll for awhile. There's no doubt that he's understanding almost everything that he's hearing. He's following directions (when he wants to) and really making his feelings known when he doesn't agree...

Still not any words consistently (except for "up"), but he knows what he wants to say. He just can't get it out...but he's trying so hard. Especially when he's upset. I can just see it coming...he gets frustarted over something, he tries to communicate what he wants, he can't, that makes him more frustrated...it can go bad fast. Luckily, I have very few epidodes with him. It's so nice to feel like I have a handle on him...there are so many memories from when it wasn't so easy. Jakob's team of doctors and therapists believe Jakob has a case of "true apraxia".

He's been a happy little booger...showing off every chance he gets. My parents bought him a piano for Christmas...a real piano. It's a fabulous addition to the Moose Room. He generally practices in the morning and again in the evening. "Twinkle Twinkle Little Star" and chopsticks are his favorites. He also enjoys playing along with videos....when there's music in the video, he plays along. When the music stops and they start talking, he stops. It's quite amusing. He loves playing piano with Grandma the most. He'll sit in there with her for a long time. She shows him a song and he can play it...sort of. He's less enthusiastic about my playing...apparently, I'm not as good as Grandma. I'm definitely regretting not practicing more when I was kid. 6 years of lessons...I haven't reatined a lot. It's coming back to me slowly, but it won't take long for Jakob to catch up.

Over the holidays, Jakob was perfect. I really enjoyed being here when he got up in the morning. He's a pretty sweet kid in the morning. He's so much like me...he wakes up kinda slow. He needs a little bit of time to ease into his day. He'll come around when he's darn good and ready and when he does, it'll be cute and sweet.

He opened presents with a lot more interest this year. I've got it figured out...he will like 2 out of every 7 gifts. That's about right...for every 7 toys I buy, he likes 2 of them. Huge improvement from 2 years ago when it was about 1 in 20...I love forward progress!!

Jakob even went to church on Christmas Eve with Grandma, Aunt Sandy and me. He was funny...he was a little hesitant getting out of the car but once he saw other kids, he grabbed Sandy's hand and practically dragged her in. He sat through the whole service and he was taking it all in. He especially liked watching the guy play the piano. We went to a children's service and they brought in live animals. I tried to get him to feed the goat, he wasn't overly thrilled about it but he didn't get mad when I put food in his hand and held it up to the goat's mouth. He did make a pretty funny face though...

Jakob's Journal

2007-01-06T13:12:00.000-05:00

Ok. I really wanted to do an entry entitled "2006, A Year in Review"...and I will, but there's a more pressing matter that I feel the need to write about first......

Jakob may be having seizures. He's having the tests done in mid-February so we'll know more then. So that's five weeks until the test, 6 weeks before we know the results. I've been suffering from occasional nausea.

Jakob was scheduled to have one short test in December. I'd made the appointment as a precautionary measure after hearing some stories about other kids like Jakob. We ended up having to cancel that appointment...Jakob was sick and his sleep was all messed up. It wouldn't have been pretty. And since I really hadn't seen anything that led me to suspect any seizures, I wasn't that worried about waiting for the longer test.

Over the past couple of weeks, while I was on vacation and with Jakob most of the day, I noticed a few different behaviors...a lot of eye rubbing, blinking, awkward mouth movements. It was happening so fast, I just wrote it off to something else...maybe a stim, a hair was in his eye, it's his sinuses since he's sick. I had a reasonable explanation for all of it.

But then...while he was in OT, his therapist saw something that she believed may have been a seizure. Jakob had just gotten off a swing and was walking with her when he stopped. He was blinking fast, flapping his jaw and wringing his fists. It lasted 3-5 seconds, he stopped and leaned against her for a moment and then did it again for another 3-5 seconds. She came upstairs and utterred one of my favorite phrases, "Now Jenn, I don't want you to panic"...(yeah, right). She told me the story and I calmly whipsered my favorite 4-letter word...

Since that happened, I'm watching him like a hawk and remembering stuff from all the way back when he was an infant. Memories just flash...I remember when he was under a year old...I can't remember if he was sick or if it was right after immunizations....but I was holding him and he shiverred...for just a second. Then he did it one more time. I remember it freaking me out. But everything freaked me out when he was that little and it was as if he just got a chill. I mean, I do that. Sometimes, outa nowhere, I'll have a chill run up my spine. So, I wrote it off to that. And I remember keeping a close eye on him after that and I never saw it happen again. Maybe that was a seizure...

I've only seen one thing since she said "don't panic" that looked kinda different. It was real quick...he kinda cocked his head, looked out of the corner of his eye, blinked a lot and opened his mouth as if his ear had water in it. As soon as it started, I grabbed his face and it was already over. Maybe that was a seizure. I dunno...6 weeks until we get the results.

I never believed that Jakob was having seizures...I have to say that I'm a little shocked by all of this. And part of me feels like a real moron. What if he's been having seizures from Day 1 and I never had a clue? What if some or all of his stimming behaviors are actually seizures?? What if the seizures are causing his speech delay and had I figured out that he was having seizures 2 years ago, he'd be speaking now??? I could keep going...but the one question that keeps popping in my head....What if it's a brain tumor? That one's the worst.

Then I spiral into...What caused this? Something that happened during my pregnancy or something we did along the way? Why is it showing up now? A decision I made is somehow to blame...

I shouldn't have taken the sedative for the surgery that put me on bedrest, I shouldn't have had the RH factor shot, all the meds to stop the contractions, I shouldn't have let them use suction during delivery, I shouldn't have gotten his immunizations, all the prescriptions he was on for ear infections and acid reflux...and on and on...

It's the guilt thing. It will never go away. If there's a mom out there who swears she never questions if she's to blame, I really wanna meet her. And it's not even a matter of believing that I'm to blame, it's the question that maybe I am...never knowing for sure and nothing I can do about it now. But it's always there. It's hard to stop thoughts from popping into my head. Somebody make the voices stop...(just kidding).

That's when I usually try to stop my brain from running and be rational. That's not always easy...but I do my best. Sometimes I start with a quote from Psychic Suzanna ..."The past has no power and the future is changeable. The power is in this moment and you". Sometimes it works, sometimes not so much. Bottom line...all I can do is watch for anything unusual. That's it right now. So I gotta do just that and "relax", "believe" and have "faith". (All my signs are still up...and I've added a few more).

I've contacted his fabulous doctor and she calmed my nerves. I thought it was such a great response that I wanted to share some of it thinking it may help other Moms out there...(I hope she doesn't mind)...

"The funny thing about seizures is that unless they are very prolonged, or someone is driving or swimming or participating in some kind of activity like that,
they are not dangerous. It worries us all to think a child is having a seizure, but many kids have small seizures, sometimes frequently, without any "damage" to them.

What I want you to look for (but don't make yourself crazy!) are any episodes where he has repetitive movement that you can't stop or disrupt. Some of these episodes can be very brief, so it can be hard to
determine if you could have stopped it because it's already over! Staring spells can be hard to interpret because so many kids have them, but again when you can't interrupt it and he seems really out of it,
that is more suggestive of a seizure.

There are some times during which a child's seizure threshhold can be lowered (meaning if they have a risk for seizures anyway, the risk increases) such as during illness/fever, certain growth periods
(adolescence) or even stress, depending on the child.

Keep me posted. I am glad we are doing the longer EEG. If he keeps doing this in OT, see if you can capture it on video."

She's a wonderful doctor...I think we'll keep her...

I've alerted all of Jakob's therapists and they're on the lookout for anything suspicious. I've been getting reports from everybody...so far we've had some sightings but no major accounts. Some blinking and a little eye-rolling but nothing major.

I also remind myself that if he's having seizures, once medicated, he may be better able to speak. Now that would be a blessing. What if we get him on meds and he starts talking? Wow, I think I'd break down in tears. So...in the end, this could be a good thing. Everything happens for a reason, right? We'll know more in 6 weeks.

My rational moments are becoming more frequent and the panic attacks are dwindling.

One more possible explanation for all of this is something my Mom suggested..."Maybe he's just constipated." Thanks, Grandma...

Jakob's Journal

2006-10-01T18:37:00.000-04:00

I did it. And it hurt. A lot. But it was all worth it. I now have the coolest tattoo ever. There are 8 puzzle pieces around my ankle...5 with the letters of Jakob's name, a sun, a star and 2 hearts. I totally dig it and I'm glad I did it. It took and hour and a half. And it wasn't pleasant. As soon as it heals, I'll put some pictures up. It'll probably take a couple of weeks before it looks normal. Right now, it's scabbing over...not too pretty.

The Autism Expo was pretty amazing. A great turn-out and lots of great information. Jakob went with me and he was so good. We were there for 4 hours and he didn't let out one squeal. He was perfect. We set up a few sensory tables and we made quite a mess. There were beans and birdseed everywhere but I think the kids enjoyed it. And that's what it's all about, isn't it?? Having fun. A happy childhood lasts forever (I have that sign over the doorway into Jakob's room...it's one of my favorites).

I just have the hardest time believing that Jakob is 5 years old. It doesn't seem right. These 5 years have gone by so quickly and they've certainly been action-packed. Every time I see a baby, I try to remember Jakob that little and I can't. I have a few memories, but not many. I just remember how I felt...so lost and convinced that I had no maternal skills whatsoever. I also remember a lot of screaming and feeling like my child didn't like me. What a long way we've come...

He's been doing so much vocalizing...I swear he speaks to me in sentences sometimes. I have no idea what he's trying to tell me but he's definitely trying to tell me something. Someday...

People who haven't seen Jakob in awhile are always impressed with how far he's come. And I've been asked what I think has made the biggest difference. I dunno. I really don't. I think it's a combination of everything...I know we first started seeing a difference when we went through the Sensory Learning Program. That's when stuff first started to come together in that little brain of his. Since then, I dunno. I know that physical thrapy has been big for him...he needs so much sensory stimulation. ABA has helped a lot...so has OT, school and speech. It's a combination of it all.

But what I believe makes the biggest difference in any child...typical or not...is what life is like for the child at home. I have done my best to make Jakob's life at home as easy for him as I can. It's cozy and warm. filled with things that Jakob loves and plenty of places for him to go to get whatever stimuli he needs. He is pretty darn happy here almost all of the time. Very rarely do we have an episode...I like that. If he's happy, he's affectionate, he's laughing and everybody's having fun. I know that if I have that kind of homelife, I can handle almost anything the world throws at me...I hope it's working for my little man. I think it is.

It's time for me to seriously start looking at Halloween costumes. Gotta find something that's comfy...last year, he was a Native American...it was cute. I'm sure I'll go through plenty of catalogs and websites...the hunt is on.

We also need one more ABA therapist...

And a guitar...

Jakob's Journal

2006-09-25T20:41:00.000-04:00

I think everything is ok. Jakob has a cold but he seemed to be ok when he left with his dad yesterday. No fever, just quite a bit of snot. Anybody know how to stop a kid from picking his nose and well...ya know what comes next...anyone? I've learned to stomach a lot of things as a mother, but that's one that still makes me queasy.

Jakob's fall schedule is going well so far...school, ABA, OT/Speech and PT. He sure seems to do better the busier he is...that whole "40 hours per week" thing that I've heard so many times actually makes sense. I still have some slots that I need to fill up...more ABA, music, more speech, swimming, tumblebees...it's on my list.

This fall is gonna be really busy and it starts this week. Nick Lachey's pants are gonna be all over the place and the Autism Expo this Saturday will start it all. I know I have several fundraising events and speaking engagements scheduled with plenty more to come. I plan on taking Jakob with me whenever possible. It's so good for him to get out and it's good for me since I miss him so much when he's not with me.

Jakob's sure been doing a lot of vocalizing...he has so much to say. The wheels in his head are going full-speed ahead and I can tell that he so desperately wants to tell me what he's thinking. I'm still believing and still holding onto the hope that someday soon he'll be able to tell me everything...

I feel very blessed with Jakob in so many ways. He truly is a joy...he's happy and loving (most of the time), he's so funny and makes me laugh harder than I've ever laughed in my life. His laugh is the greatest sound in the world. I want people to stop feeling sorry for him and me...we're great. No pity, please. Just the respect I deserve for taking on our challenges and doing so with a positive attitude. That's all. Respect is nice.

I'm very excited...tattoo is scheduled for this Thursday. Ankle band...puzzle pieces with Jakob's name and a couple other little things. I've been waiting and wanting this for a while and finally, I'm gonna do it. No fear. Can't wait. (Just found prescription painkillers in the meicine cabinet...forgot I had them...undecided whether to use as a preventative measure or wait to test the pain level...we'll see.)

Jakob's Journal

2006-08-29T08:32:00.000-04:00

Rough day today...can't stop thinking about Marcus. The thought of someone locking my Jakob in a closet for two days...these people are evil and the system is too flawed. It's that simple. Obviously, changes have to made and a whole lotta people need to learn more about autism. It ain't gonna be easy but it has to be done. How many more kids like Marcus are out there...completely misunderstood? I'm so sad...and horrified.

Marcus is the latest in a string of stories about children with autism who were being taken care of by adults who couldn't handle it. There was a mom in Illinois...a doctor...who suffocated her 3 or 4-year-old daughter. A mom jumping off a bridge with her son who had autism in the Northeaast somewhere. The details of the stories are blurry to me since I chose not to dwell on them. Too hard to imagine...too exhausting to try to comprehend. But I remember how the stories ended. They ended with biological moms murdering their children. It was never out of anger in the previous situations...it was despair. Despair over their children's challenges and how hard life was for them. They didn't lock their children in a closet because he was "misbehaving". But the end was the same...the people taking care of these children were unable to see the little miracles in their midst...the beauty and the joy inside a child with autism.

The Carrolls had no idea what they were getting into...nor did they care. They were in it for the money, that's obvious. It just frightens me that a child like Marcus could be placed with people like that. Poor little guy never even had a chance.

Autism is not easy to explain. It's even harder to understand. It takes years for parents to get a handle on it. Years...and endless research, hands-on trial and error, observation, therapists galore, doctors of all kinds, talking to other parents, more reading materials...and most importantly, a lot of love and patience. It would take a very special person to foster a child with autism. I can't leave Jakob for 2 hours with a babysitter who doesn't understand autism...I can't imagine him living with someone who doesn't know...

I wanna give Jakob a big hug right now but I can't...he's at his dad's. But I will have him tomorrow and we're gonna snuggle.

Jakob has become quite the snuggler. It's hard to believe he's the same kid that never even cared if I was in the same room. Now, if I try to tuck him in bed and leave, he pulls me into the bed. He likes to spoon...me in the back. The other night, I was laying with him and I thought he had fallen asleep. He had himself buried under the sheet and I thought for sure he was out. I gently got out of the bed and he popped up, threw the sheet off his head and with his eyes more than half-shut he reached for me and pulled me back in the bed. Moments like that are amazing...it's those kind of moments that let me know he loves me. I haven't always felt that.

In fact, just a couple nights before, I wasn't feeling it at all. Every once in awhile, Jakob will hit. I know how to prevent him from getting so frustrated that he hits, but this time, I didn't even see it coming. I honestly thought he dislocated my nose. Palm open...whack. Several times. I wasn't angry with him...I felt awful for him. I knew that he was frustrated, tired and just feeling helpless. He wanted me to know something, to understand him and I was trying but I wasn't figuring it out fast enough. I felt so bad for him. What really stinks in a situation like that is I have to leave him. When he's reached that point, there's not much I can do. I've learned that over the years. If I keep at it, the situation will just escalate and there's no reason to put either one of us through that. He has to work it out on his own. He wasn't crying or screaming, there was no threat of him hurting himself so I told him he can't hit, I told him I loved him, gave him a kiss and tucked him in bed. The next morning, he woke up happy.

I'm sure the Carrolls would have handled the situation differently....................

Jakob's Journal

2006-07-06T18:22:00.000-04:00

Entry for July 5, 2006

Love the laughter...love it, love it, love it. Some have said Jakob's laugh is infectious...I have to agree. He gets going and his smile is ear to ear and the laugh is coming all the way from the bottom of his belly. Really...when I hear it, I melt. I absolutely love the sound of his little voice too. Ya know, I'd never heard it until he starting saying a couple words...like "up"...which is his favorite word. We hear that one the most.

Jakob was so good on our trip to Grandma and Grandpa's house. I swear, he knows how to get there...if I would have taken the wrong exit in Bloomington, he would've been mad. He watched my every move...it cracks me up. He is so good in the car...never slept but was singing and laughing and looking around the whole trip. I would bet that a road trip with Jakob is more enjoyable than a road trip with most typical kids. I am so lucky in that department.

Probably the most pleasant surprise of the weekend was my parents' 40th weddding anniversary party. Jakob stayed in that loud, noisy room for an hour and a half. He did not want to be there but he didn't cry. He didn't even whine...he just stood at the door. I'd lure him away with a cookie or fruit juice snacks (candy) and he'd hang for a little while before he'd go back to the door. He even watched one movie in his portable DVD player...in 4x fast forward...

Much of the credit for Jakob being so good goes to Greyson, my best friends' 6-year-old son. Shawn (his mom) told him to stay with Jakob and try to get him to make eye contact. Sweet little Greyson was dodging back and forth in front of Jakob trying to get him to look him in the eye...what a great kid. I wish more kids could be like Greyson...Greyson tries to understand Jakob. He's an old soul...a very sweet old soul.

The day after the party, Jakob and I were having a moment (I was changing his diaper) and he wanted to play with the buttons on the tv. I asked him a couple of times to wait and he did so happily but he was starting to get flustered after about the third time. He stopped squirming for one second, looked at me and said "pweef" (Jakob's pronunciation for "please"). Needless to say, I let him have whatever he wanted for the rest of the night. "Pweef"...my new favorite word.

Jakob really seems to be having a great summer. Summers are supposed to be great when you're a kid. I have a lot of great memories from my childhood...I want Jakob to have the same. This summer has been his first "fun" summer...I hope there are many more like this one to come.

It's hard to describe in short form the changes we've seen in Jakob the past few weeks. He's happier, he more communicative...verbally and with gestures or signs, he's making more sounds, he's transitioning easier, he's "with us" most of the time. And did I mention that he's happy??? Smiles, giggles and full-blown belly laughs at every turn. It's so cool.

I should probably confess...now that I've had time to reflect...maybe I did go a little crazy for awhile. I still don't regret the way I chose to handle my stresses...I could have made worse choices. All I'm saying is maybe I didn't always make the best choices along the way. Hindsight is always 20/20, right? No dwelling...I'm fixing the damage done. See ya later credit cards and junk food...hello spending freeze and Rocco. Wonderful. Just wonderful.

Jakob's Journal

2006-06-27T10:31:00.000-04:00

Entry for June 22, 2006

Jakob is doing great...life is good. No complaints. He's been handling his very busy schedule beautifully. I'm quite impressed. We're doing something right...I'm not sure what, but it's right.

Jakob's been unusually interactive lately...he has lots of energy, he's laughing a lot and he's runnin' me ragged. We had quite the busy day yesterday. Our itinerary looked something like this:

Picked him up at camp at 4:15...home by 4:45. Lots of talking in the car and he was definitely making sure that I was going the right way.

As soon as we got home, he went straight to the trampoline in the living room where he jumped for a good 15 minutes.

Then he was in the mood for a bath. I played one of his favorite cd's while he was in the tub and we had a ball doing "head, shoulders, knees and toes".

Dinnertime...huge pile of macaroni and cheese.

He plays the piano, ya know. He's learning a new song..."Where is Thumkin?"...he's almost got it. So we practiced and he just loved all the praise...he's very talented.

TV time...Underwater Adventures was the video he chose. He really likes to watch his video, jump on the trampoline, sing, dance and play with a toy or two.

When the video was over, we went for a little stroll around the block...very nice walk. When we went outside, he went straight to the car thinking we were going for a ride. He sure gave me a big smile when he realized we were going for a walk. He likes to go for walks.

After his walk, we hung out...played with some toys, he jumped on his trampoline and we watched some tv.

He's just been a complete joy...in such a good mood, laughing a lot. I like it. I like it a lot.

But the best part of our day was going to bed. Jakob did something he's never done before. I went through his whole bedtime routine and I tucked him in, gave him a kiss and told him I loved him. When I turned to leave the room, he grabbed me and pulled me into the bed. He laid me down right where he wanted me (behind him in the "spoon" position)...he wanted me to snuggle with him. It was awesome. He's never been very big on anybody being in his space...and now he was putting me in the middle of one of his favorite spaces. I know so many parents who go through the phase with their kids not wanting to sleep alone. Jakob's never had a problem with that. When Jakob pulled me into the bed, it was one of those moments where I felt "typical". Too cool...too sweet. He's awesome. I love that kid...he's my baby.

Jakob's Journal

2006-06-14T10:24:00.000-04:00

Entry for June 13, 2006

Today...when I picked him up from camp, I got a great parking place...right in front. I could see thru the door that they were doing circle time. There were 2 little guys standing at the door when we pulled in. A therapist redirected them back to circle time. Then, Jakob came to the door. His little eyes all red and swollen...so tired and ready to cry. He saw me and smiled...and when the therapist tried to get him to go back to the circle, I saw his little lips mouth "mama". I about lost it. It was sooooo sweet. I didn't care that it was 7 more minutes until camp was over for the day, I went in and kissed my kid. I'll never forget that sweet little face standing at the door, ready to go home after a long day at camp. It's so hard being 4...

By the way...the only reason I got the great parking place was because all the other mothers knew better than to park where their kids might see them...it disrupts the class...oops. Sorry.

Jakob's Journal

2006-06-13T09:56:00.000-04:00

Entry for June 8, 2006

Jakob's summer schedule is off to a good start. He started an 11-week camp for kids with autism and so far, he's come home every day unscathed. He's been worn out but not miserable. That's awesome for the first week. It's been by-far the smoothest transition that I can remember.

There's only been one incident and I kinda saw it coming. I picked him up at camp early and drove directly to where he has physical therapy instead of home. After only going to and from camp 3 times...he already knew the route. When we didn't turn where we usually do, he knew it. Unreal. Grown-ups don't remember how to get places as well as my 4-year-old.

As soon as I went straight instead of right, he started to whine a little...but not bad. At that point, I thought we might have a shot of pulling this one off. But...as soon as we got to a place that he recognized and he realized that we came in a different way...the whining increased...not good but still manageable.

Into the parking lot at PT, he was still a little whiney. When I tried to get him out of the car, it was a big fat no-go. He kept trying to strap himself back into the carseat. Comical, really. He didn't want to go in. He was making that very clear without using any words. It wasn't tough to figure out. So...how did I get him out of the car??? I don't remember but I got him out.

Next challenge...get him through the parking lot and through the door. Good luck. I tried to sing...he let me know that he didn't give a crap about any monkeys jumping on a bed. If I tried to get close enough to get a good hold on him, he'd grab me and pull me to the door handle. So, I walked away...slowly, as he stomped his feet and whined. He'd turn his back to me, stomp, stomp, stomp, whine, then check to see if I was watching him. Typical kid-thing to do...very dramatic. But he was genuinely upset...very confused...that was definitely not his regular routine. We did something different and he didn't like it one bit. I felt bad that he was so upset, I wanted to keep him calm and happy but I didn't want to give into this one.

I walked through the door alone with one eye on the parking lot and I motioned to the receptionist. She saw me at the door alone and knew something was amiss. I said, "tell Christy we're here, but we're in the parking lot". Thank God for Super PT Christy...she came out in the stinkin' heat, on the blacktop and sat down with Jakob beside the car. He communicated to Christy that he would rather not participate in therapy today...rather emphatically. So she brought a trampoline to him...he thought about it, but decided against it. So I went inside to get one of his favorite toys. He saw the toy, ripped it out of my hands and pulled me to the car, all in one swift move. The kid is quick. So...all good ideas exhausted (didn't have fruit juice snacks or a cookie with me...those may have worked...poor planning on my part and I knew it), it was decision time. Do I: a) put him in the car and take him home or...b) pick him up and carry him through the door kicking and screaming? I chose option b . Rarely do I pick a battle but this time I felt I had to. I didn't want him to think that all he had to do to get out of therapy was kick and scream in the parking lot. No thank you. I figured...do it fast....scoop him up and run...get him through the door. The door would be obstacle number one. He tends to grab onto whatever he can in a doorway...the door, the wall, the frame...and he reaches with both hands and feet. It's like getting a couch with flailing appendiges through a narrow doorway. It's a trick.

It wasn't pretty but I got it done. Once inside, he still wasn't happy and we didn't get much accomplished. Christy managed to get him on the spinning board which he dealt with pretty well but that was it. We were done. We went home. Battle over...we both kinda won. I got him into therapy, he got to get back in the car.

This little incident could've been recipe for an ugly evening but I just followed his lead. We got home and he felt like chillin' out...we watched some tv, jumped on his tampoline and just hung out. I let him show me what he needed to do to pull himself together...he's gotten so good at self-regulating. Sometimes, he just wants to be alone. I get that. I sure need my alone time...so, I respected the kid and gave him his space. He fell asleep happy and we started from scratch the next morning. One day at a time...one incident at a time...

Jakob's Journal

2006-06-07T07:31:00.000-04:00

(I'm smiling as I write this...as I sit in my Happy Place)

I'm not gonna get angry
Nothin's gonna make me mad
I'm gonna laugh no matter what
Not gonna get frustrated
breathe

That was funny.

Jakob's Journal: June 4th, 2006

2006-06-06T09:44:00.000-04:00

Entry for June 4, 2006

I'm in my happy place..."Serenity Now"...great day yesterday, great morning this morning. He sat at the table for his breakfast, he hung out in my room, he jumped on his little tramp inside and his big one in the back yard, He's been singing and dancing. There's been some water and sand involved. He's been so happy, it's been so nice.

Ok...my job continues to become clearer to me...at home, I prepare him for a good day...whatever that day entails. If he's gonna be running all day...start out the day nice and calm. Ease him into it...try not to rush him unless you absolutely have to. Make sure he does all of the jumping he wants to do. If he doesn't wanna change his diaper right away...don't rush him. Do not force him to do anything that he doesn't feel like doing right now. Pick battles...and always show him respect. Respect the kid. I wouldn't want somebody constantly telling me what to do, bossing me around, making me do stuff before I was ready to...I wouldn't want somebody messin' with my tv or turning off the stereo if I was listening to my favorite song. Jakob has to have a place where as often as possible, he gets his way. I know the difference between being a booger and being rotten. Jakob isn't rotten. If he's doing something rotten, it's out of frustration that he can't communicate what his needs are. If he's screaming uncontrollably, it's because he's losing his mind...it's the same way I feel when I can't get someone to understand me. How would I feel if the entire world didn't understand me??? That's why it is my job to be the safe place for Jakob. He will always be understood by me. His needs always come first. When I do that...everybody wins. I make his life easier...and in return, my life is easier. It's peace, love and laughter, baby! And who wouldn't wanna live like that???

June 1st, 2006

2006-06-05T12:03:00.000-04:00

Get him to his happy place...that's what my gut has been telling me for months. I'm starting to listen to it.

In his happy place, he sings, dances, self-regulates like nobody's business, imitates everything...sounds and motion.

Get him to his happy place and he shouts the "g-o" in BINGO...and imitates every dance move in "She'll Be Comin' Round the Mountain" (which was one of my childhood favorites...ask my Dad).

He's a riot. Nothing rattles him...he goes with the flow and most importantly, he's happy.

Find Happy Place.

Go there.

As often as possible...

I have a happy place...I think everybody does to some degree. I mean, it makes sense ...in order for me to be in my happy place, I have to take a shower, wash my hair, my skin needs to be pretty clear, I have to do my hair and make-up, wear a cute outfit that I feel thin in, and of course, cute accessories...shoes, jewlery, purse. My skin must all be hair-free and moisturized. And I must have coffee....lots of cream and sugar. That's just the prep required to go to my happy place. The small details affect me...if I feel really fat on a particular day, I'm "off" that day. So I can understand if Jakob's day gets thrown off by not being able to jump on his trampoline before he goes to school.

I find the more I watch Jakob, the more I learn about all of his different quirks. And if he's allowed to be himself and do "his thing", he will arrive at his happy place. Some of "his things" are jumping, eating cookies, music (different kinds on different days at different times dependent on the situation), the bath, the back yard...sand, water, trampoline and slide, fruit juice snacks, running a few sprints, bouncing on a therapy ball, bubbles and a couple hot dogs. The trick is to figure out what he needs at what time...and that changes day-to-day. So I watch and try different stuff that I know are on his list of "happy things".

The road that I chose back when all this first started was to try as much as possible...try anything I thought might work. If he showed an interest in building blocks, I bought every kind of building block I could find...animal ones and vehicle ones, different colors, shapes, sizes...some played music, some spun around ...I probably own a couple of garbage sacks of blocks. And that's just blocks...don't get me started on puzzles, books, balls, pillows, games, art supplies, dollhouses, firetrucks, cars, trains, DVD's and videos, tv's, DVD players...a swingset, fence, therapy room, therapy equipment...the list goes on.

When it's all added up...it's a potential downward spiral. I really lost my mind for a little while. Don't get me wrong...I don't have buyer's remorse on anything I bought for Jakob...I just probably could've found it cheaper. But I was in a hurry and I didn't have the time to shop around. I paid for convenience. Now my shopping must cease for awhile...sad day...no new handbags. No new nothin'. I'm not panicking yet...I think I'll be ok. Best put...if I continue at the same pace that I've been travelling, I'd lose the house within a year...so, it's time. Time to stop...well, almost. I think I need to get one more little thing...a sign for my house that says "Start where you are, Use what you have, Do what you can, It will be enough"...really, it is time.

Jakob has reminded me this past week of an important lesson... we both have to have love and laughter. What's by far the most important necessity for me to get to my happy place is...love and laughter...lots of both. If I go to bed at night and I spent the day laughing with Jakob and gettin' lots of Jakob hugs...I know I had a great day.

I've been trying to think of people I know who live under that mantra (love and laugh) and do it succesfully every day (I know a lot that try but not many that succeed). My parents are amazing at it. It's become more and more obvious to me the more I watch them with Jakob. They're awesome...there are no words to accurately describe it. I love them and their examples so much. I'm gonna get a bracelet that reads "WWM&DD (What Would Mom and Dad Do)...maybe two strands...one with WWMD and one with WWDD. I like that idea...could make me millions (please don't steal it...I could use the money).

Other than Mom and Dad, there are really only a couple of people I knew really well when I was younger that were big into love and laughter...and I haven't been close to them in awhile. I've heard that they've had some rough times...I hope their personal tortures are over and they've found peace...and a little love and laughter. They certainly had their happy places...they just weren't sure which roads to take to get there. They're a little slow at reading maps...just like me. Every once in awhile, I think about my old friends and I wonder how they'd get along with Jakob. I think they'd get along beautifully...love and laughter people "get" Jakob. Problem is...I need to find people that successfully love and laugh every day...with no drama. Peace needs to be on that list too. Add peace. Thanks.

Peace, Love and Laughter. Gotta get a tatoo. I've had one idea that I really kinda like...it's on the ankle, it's pretty, feminine, very colorful...striking if you will...a definite conversation starter...I need a good artist to make a design that somehow means "Autism Mom"...I want it to be something people will see and compliment me on...it will force people to ask a question that leads into a lesson in autism. And even if nobody ever asks...I like it because I'm proud to be a mom who has a child who has autism. I'm proud of his ability to find peace, love and laughter...it's taken us a long time to get to here...and we have a long way to go, but I like what I'm seeing.

The best way for me to stay in my happy place is to not let anything bother me...not snotty remarks, dirty looks, being ignored or dismissed. I cannot control what anyone says or does...all I can control is how I react to it. So, I'm going to try to react to everything with at least a little bit of love and laughter. I'm gonna laugh no matter how hard I want to cry or how badly I want to scream. Attitude is everything. I'm not gonna get angry. I will not be easily frustrated. Smiles...lots of them. But I do think I'll keep up the breathing exercises...just to be safe.

It seems that my happy place is a lot like Jakob's happy place. Whew...that makes this easier. Find my happy place...find Jakob's...nice.

Jakob's Happy Place...I swear I've tried to find it for soooooooo long. The beauty of it all is finally, after all this time and all this thought and all this total change in our lives...I feel like it was all worth it. I was tortured during this search.

I'm not sure why this all feels like such and epiphany for me, but it does. An Oprah "A-ha" moment. I swear, it sounds cliche, but it's like I've been gathering all these puzzle pieces and now I have enough of them to start trying to put them together. I'm trying and it seems to be working. Time to breathe, even if it's just for a moment.

I'm sure there's at least one therapist and one mom (at least) that are saying to me right now "Jenn, you pain in the butt, I've been telling you all this for years...but you wouldn't listen"...and they might be right. Maybe.

But what I think I've realized is...this is a journey and there's no map. No concrete directions anywhere. I can look at some pictures of where I want to or need to go...but I have to figure out on my own how to get there. A lot of turns have been taken...interstates and backroads...engine trouble...a couple fender-benders...nasty weather...some good flights with only minor turbulance...a delay or two on the tarmack...a flat tire...and tons of motion sickness. It's been quite a trip and right now, I feel like I've found Hawaii...

May 30th, 2006

2006-05-30T15:29:00.000-04:00

Water is sooooooooo much fun. Water in the tub, water in the water table on the deck, water on the tube slide, water all over the swingset, water in the fountain...Jakob likes water. Kinda scares me a little. I've heard too many stories about children with autism drowning. Gotta watch him every second.

Slight change in Jakob's schedule this week...no school. That's actually a HUGE change for him and he didn't handle it too well the first day. He was at his Dad's and according to Kenny, at the exact time he usually goes to school, he put on his shoes. So, Kenny tried to take him to the park that's close to the school. As soon as Jakob realized they were going a different direction than the school, it all went south. Not pretty from what I hear. All I know is he ended coming to my house and doing a lot of jumping. Apparently, Day 2 without school went much better. Hopefully, he'll adjust quickly to the new schedule. Poor thing....we just keep throwing curve balls at him.

Jakob and I have been having some great moments. He's just so much fun to play with (when he actually lets me touch his toys...I keep telling him that if there's anyone he should share his stuff with, it should be me since I paid for all of it). I've been able to pull out some of the toys that I had to put away because he was stimming too much. We've been having a lot of fun with marbles and bubbles. But definitely, the big winners are water and his Baby Genuis Favorite Nursery Rhymes DVD. Between "BINGO" and "Five Little Monkeys", it's been quite a party around here. We crank up the stereo and sing like nobody's listening and dance like nobody's watching. It's scary how easily I can get in touch with my inner child. I'm sure it has something to do with my being an only child...lots of time playing alone can foster quite an imagination.

I've decided what I wanna do when I win Powerball. I'm gonna buy a huge piece of property that I will build no more than 50 home on...all to be occupied by families living with ASD. Everybody knows everybody and everybody understands. We watch out for each other's kids and we help each other out. If I win really big money, I'll build a couple of apartment/townhome complexes for adults on the spectrum who could live alone with a little help. It could be a big, happy, safe, gated community. I've already picked out the families I want living right next door to me. I have lots of ideas for playground areas and a pool...and of course, landscaping.

I try so hard not to dwell on the tough stuff but it's impossible not to notice it when we're out. The older he gets, the more funny looks we get. I hate it. I just hate it. My maternal instinct to protect goes into overdrive and I just wanna keep him home, safe and warm, surrounded by things that make him happy. Unrealistic...but instinctual.

What I think all of us autism moms go through is a phase where we want to try to have a "normal" life...and do all the things that moms with typical kids do. And the longer we're in this, the more we realize that it's just not possible. Every time I try to be "normal", I just get reminded how different we are. I find that I'm most comfortable around other people who can relate...other moms in the same boat as me. I love my autism moms. I love that my autism moms look at Jakob and just see Jakob. They don't jump at his behaviors, they're not scared of him, they know what to do with him. They hug him and give him high fives. They laugh at the same things I do. Being surrounded by people who get it makes it not seem so hard. That's why I gotta win Powerball...

May 19th, 2006

2006-05-19T11:51:00.000-04:00

I had the most wonderful night last night. I was invited to say a few words at the Kindervelt Annual Meeting where they inducted the new president and board and presented a check to Children's Hospital's Division of Develpomental and Behavioral Pediatrics..(where Jakob goes)

Sitting in that room and standing in front of those awesome women, I remembered the Autism Every Day video...and wow, I felt at home. In this room sat a whole lotta moms, most with typical kids, a few like me but all with an unconditional love for children. Not only do they take care of their own kids, they take a lot of time out of their lives helping other people's kids. And to be in that room with these classy ladies and know that each and every one of them can, at least to some degree, understand my life.........it was nice. Really nice.

I met a couple of autism moms and even Jakob's art teacher (who he'll have in kindergarten next year). One mom...who I've been told at least 23 times that I needed to meet...was there. What a doll. No lie...I walked up to her and she immediately put an autism awareness necklace and bracelet on me. She had made them herself...too sweet. She was something...so positive, so energetic, so funny. Her daughter is older than Jakob so she's been doing this for a lot longer than me. She gave me hope...hope for Jakob and a little hope for me. If her daughter can do so well and improve so much that this mom has time to take care of herself...then maybe, I can pull it off too. Honey, if you're reading this...thank you for being so strong and giving us newer moms hope. God knows, one thing we autism moms must always have is hope...

So anyway...

I was hoping that I could just bask in the warmth of last night for a few days...but no luck. The everyday stresses hit me smack in the face this morning. I still have hope...but I do feel a little beat up. I really did it this time and I just hope I can fix it. I think I can...I hope, I hope, I hope...I've thought about writing about my potential downward spiral...I just haven't figured out what to say yet...I'm working on it and I'll write about it soon...just not quite yet...

Thank goodness that over the emotional few days I've had, Jakob's been great. He's laughing, he's happy, he's definitely energentic and entertainly onery. There have only been a few squeals of disagreement or defiance and maybe 1 or 2 meltdowns...a big improvement. I'm still seeing some stimming behaviors but not as many and he's doing fewer sensory seeking activities...like chewing and crashing. All of his therapies are going well...he's been very cooperative. He sure could use some OT though (hint, hint, JA)...

Jakob is almost out of school for the summer and it will be interesting to see how he'll handle the change in his schedule...I'm hopeful that all will go ok...very hopeful.

May 17th, 2006

2006-05-17T11:51:00.000-04:00

I'm sitting in "Serenity Now" watching Jakob make a mess. There's really nothing I can do about it unless I want a big fight so I'm just letting him go. He's stimming a little but it's not excessive. It's the sandbox...the sandbox that he has ignored for 2 summers has suddenly become his number one priority in the backyard. It's awesome that he's now tolerating the sand...sand used to be one of those sensory things...he wanted no part of it. Now it doesn't bother him a bit. He doesn't mind it on his hands, feet, in his hair or down his pants. He doesn't even mind it if it's wet. After this afternoon, I know that I don't mind it any of those places either...the booger nailed me with several handfuls of it...on my head. Right now, he's on his knees hurling sand all over the yard. That's what he's been doing for the past couple of weeks. At this point, I'm curious to see what he's going to do when the sandbox is empty...I'm guessing I'll be making a trip to Home Depot for more...

I've been having an emotional day...an urge to cry for no real reason. I mean, I have plenty of reasons but none of them are overwhelming me today...maybe it's just a combination of all of it and when it's all added up, it's getting to me. Summer programming for Jakob, finding new ABA therapists, gotta get him in speech and music therapies, gotta get him a haircut, gotta start chelation, gotta get him back to the DAN doctor...gotta, gotta, gotta. Those are just decisions that need to be made and things that need to get done...it's just a matter of doing it. The other stuff I try not to think about too much...like the future.

Maybe what set me off was the short film I watched this morning. It was shown during Imus' show on MSNBC and it's all over the internet. It's one of those things that everyone I know sends me a link to...like the basketball player and the cover of "Time". It's a pretty powerful 13 minutes entitled "Autism Every Day". It features 4 moms talking about what it's like to have a child on the spectrum...and it focuses on the hard parts, the parts that most people don't understand about autism...the scary parts and the sad parts. A must see for everyone, really...if people want to understand. Nothing in it surprised or shocked me...since I live it every day...but it helped me realize even more how little people understand. Autism is my life...and it will be forever. Not a moment goes by in my day where my life isn't affected by autism. Now...I'm tough, I can handle autism...but sometimes I can't handle the fact that autism has control over my son. Yeah, I guess the video got to me and made me think a little bit more about it today than I usually do.

One of the moms in this short film said something to the effect of "all my son wants is to stay in his world and all I try to do is bring him into mine..." I know that feeling and the frustration, sadness and pain that comes along with it. I just wanna hug every autism mom I know...

As far as the future goes, I've pretty much decided that it will be Jakob and me forever. The likelihood of me even dating is slim. It would take a pretty amazing guy to live with me and take on the challenges that Jakob faces. And when the heck will I ever have time to search out that amazing guy...there just aren't many guys like that available. Oh well, everything happens for a reason, right? And it's really not something that I worry about...just something that enters my mind every once in awhile.

Jakob has been doing a little better since my April entry. The transition between Kenny's place and mine has continued to get easier for him. I will admit, it was pretty rough in the beginning. But I kept reminding myself that the whole situation would be hard for a typical kid, let alone a child with autism. The biggest challenge was his disagreeability (I think I just made up a new word). When he'd come back to my place, he was snippy with me. No matter what I asked him to do, I got attitude. He was pretty wound up too...seeking out stimming activities and refusing to transition away from them. It was hard...harder than it had been in the past. Every behavior he was displaying was something I'd seen before so I had to remind myself how I handled it then. Once I remembered, it became easier. Cycles. Everything in cycles. Everything.

Jakob's Journal

2006-05-03T16:05:00.000-04:00

Welcome to the new incarnation of Jakob's Journal!

All the previous posts have now been archived here.

Thank You!

April 2006

2006-04-30T11:48:00.000-04:00

It's been too long. No excuses, no good explanations other than writers block.

Hopefully, I'm back.

The rollercoaster has been full speed ahead and I think we're finally slowing down and getting ready to pull into the station. Jakob and I have fared pretty well...neither of us threw up once.

Since my last entry...Kenny moved out, Aunt Sandy moved in along with Sadie (beagle), Sophie (miniature long-haired dachsund) and Casey (cat)...Mom and Dad cleaned my garage, I've redecorated my bedroom and...........Jakob has said some words!!!!!!!!!!! I've heard several..."up", "open", "bath", "belly", "please"...

I'm really tying not to get too excited. The only words we're getting consistently and appropriately are "up" and "bath"...the rest seem to come and go. Now that I've been doing this mothering thing for awhile, I've noticed the patterns...that whole two steps forward, one step back stuff. When we're in the two steps forward portion, life is wonderful...I'm not so crazy about the one step back part. I've always believed there's a fine line between hope and reality. I hope that Jakob will speak...I believe he will but reality is...he may never. I feel like I'm always hoping for the best but preparing for the worst. That's the reality of our situation.

Now let's talk mumps...Jakob has not had his second dose of the MMR. What does a mother of a child with autism do? Follow the advice of one doctor who says "you have to get the shot...they're harmless and the mumps is a serious illness...you don't want Jakob to get the mumps"...or listen to the doctors who believe that the first MMR contributed to Jakob's autism say "don't get that vaccine...I've seen kids who have been progressing and then crashed after the second MMR"? Really tough question...I wish I knew the answer. It's such a scary decision and I'll be honest...I had a bad feeeling about Jakob getting shots before he ever had one...if I had listened to my gut, would he have autism now?? I don't know. Do I give him the shot and risk losing everything he's learned? Did I mention he says "up" and "bath"? Do I wanna risk losing that?? I don't know...do I want him to get mumps? No. If I make the wrong decision...who suffers?? Jakob. Stressful. Torturous. Do I have enough confidence in what my gut tells me to risk Jakob's well-being?? I don't know.

Whew. It's a relief to get that off my chest.

Now back to the positive stuff. It's taken some time for Jakob to adjust to going back and forth between the two households. There's no doubt that the change for him is drastic. Kenny and I do things very differently. He's one tough little booger and he seems to be adjusting pretty well. I've noticed that it's been taking him less time to re-adjust to my house each week. I've also been able to figure out what Jakob needs in order for him to self-regulate. Upon his return home, we must begin with him taking a couple of laps around the house so he can make sure all of his favorite toys are still here and in the right place. Then it's up to my room and straight to the tub. He's really been loving the bath. It's so cute...I always have access to the tub restricted so he has to request "bath"...and if he says "bath", I can't tell him "no"!! So into the tub we go. Once he's in the tub, he does a lot of talking. He pretty much tries to say any word I tell him to. The best was "belly". It came out of nowhere...he was pouring water on his stomach and I said "pour water on your belly" and he said "belly". I stopped dead in my tracks and said "say belly" and he said "belly"...then I said "show me belly" and he patted his belly. It was an amazing moment. Awesome moment.

I hate when there's a major decision to make...it's so distracting from the everyday joys. I wonder how much I'm missing by trying to figure out what I should do. Frustrating, really. Too bad I can't just spend all my time enjoying Jakob...it just don't work that way. Darn it.

So...I do my best to relax as much as I can. Wait for answers to come to me. I'm starting to doubt that they will ever come...so as soon as know who to believe in all of this, we'll be good to go.

I have one decision that I've made for Jakob's summer. I'm pretty sure it's the right decision...I feel good about it. He'll continue with ABA, OT and PT. Then there's a program at his school and a summer camp. I'm also gonna add speech and hopefully music therapies. It sounds like a lot but we're still not close to 40 hours per week. Wow...40 hours is a lot. And as much as I hate to be away from him, I believe he needs the help. I feel like time is running out...he's already 4 1/2...the pressure is on.

I feel like I'm being pulled in so many directions. I seem to get different answers to the same questions depending on who I ask. Just like autism itslef...inconsistent and confusing.. And no matter what I choose to do with Jakob, there's someone who thinks I'm doing the wrong thing. It causes me to doubt myself as his mother. I mean, I am his mother...who knows him better than me?? Right? But...there are certainly a lot of doctors and therapists who know more about autism than I do. So...what's more important...knowing autism or knowing Jakob? A big part of Jakob is his autism but autism doesn't define who he is. I believe that. So...what comes first? What do I focus on?? Jakob or the autism???

February 10th, 2006

2006-02-10T13:50:00.000-05:00

It always seems to happen like this and I'm not complaining. It seems every time I write an entry describing a challenge we're facing with Jakob, within a couple of days, he's so much better. Jakob and I have had the perfect night so far.

I was sitting on the couch and he was standing up watching tv. He walked over to me and rested his cheek on my chest and crawled up on my lap. I was holding him like women hold babies...I was cradling him. And as I looked at his face, I realized that I hadn't held him like that since he was an infant. Not because I haven't wanted to...but because he wouldn't let me. Once Jakob could move around, he'd wiggle his way out of my arms. He didn't like being held so he rarely was. It's hard to connect with a child who doesn't want anything to do with you. Tonight, my little buddy did something very sweet...he let me hold him like I've wanted to hold him for so long. There are little joys like that in every day and when I slow down, those little joys become big joys and my whole outlook on life changes. That's the power of a special child.

Things are gonna start getting a little crazy around here this week. My aunt, my other aunt, my parents, 3 dogs and a cat get here. It will be a full house. So, I've started a new project!! I'm turning the master bedroom into a suite...complete with a sitting area, a play area and a tv viewing area. Actually, I'm making it sound a lot fancier than what it will be. And honestly, I'm not sure yet what it's gonna be. All I know for sure is I want a big soft bed, a tv for Jakob, a tv for me, a sitting area and lots of stuff Jakob likes to play with. The bedroom will be a great place for Jakob and me (and Miller and Weiser) to go and just hang out. He loves the king-size bed with all the pillows and blankets. Having the bath tub nearby is a bonus too since he loves it in there. With all the chaos, I can't finish the room right now...but I sure can start coming up with ideas and doing something temporary that will work. It's good for me to have as many creative outlets as possible...gotta keep my mind occupied so I don't think too much about all the stuff that could make me want to curl up in the fetal position and wimper...(for the record, I really am holding it all together pretty well).

-Jenn

February 9th, 2006

2006-02-09T13:51:00.000-05:00

Wow. I'm gettin' my butt beat by a 4-year-old. It's sad, really. How did I get sooo old soooo fast??? My little buddy has been having a rough go of it. Lots goin' on...the double ear infection/strep throat thing started the whole snowball effect that has left us at the bottom of an avalance. That's one thing that parents of typical children sometimes don't get...when a child with autism gets a cold, we're dealing with a lot more than a runny nose and a cough. For Jakob, the illness made him crabby (understandably); he had to take anti-biotics and therefore wouldn't drink anything but water so he hasn't been taking any of his 20-some supplements which affects his digestive system and his sleeping patterns; and then of course, there's his schedule. No school, home all day, no ABA, no therapy...just home. Take your average case of cabin fever and multiply it by...oh, let's say...10,000??? Welcome to my world. Poor little guy...he's just all messed up.

The tough part, that will be with us forever, is the set-backs. I can't even count the number of people who have told me "2 steps forward and 1 step back". I'm not a fan of the 1 step back part. One step back means "hold on, we're goin' for a ride". I'm beat. Tonight, I'm letting him win as often as possible. "Wanna cookie, Jakob? Wanna watch a movie? Wanna run the bath tub for 2 hours straight just cuz?? Sure, kid. Whatever you want." RIght now, he's watching his favorite video while singing, jumping, crashing, running and throwing medium-sized objects at the windows. Luckily, he's not a very good shot. I sit quietly on the bed, observing and keeping my butt out of his way.

If there were a video camera in this house, the "Mommy/Turkey Butt Quality Time" would either entertain people or frighten them...

The other day, Jakob and I were in my bedroom and I was cleaning out some drawers. Miller, our elderly cocker spaniel, found a pair of underwear he liked and he was chewing on them. I didn't say a word. Jakob jumped up off the bed, ran over to Miller, ripped the underwear out of his mouth and handed them to me. I fell over. It's a good thing I'm able to remember those moments as he screams bloody murder for no apparent reason...

I have to constantly remind myself to slow down. That's all I really have to do. I feel so horrible for Jakob...how frustrating would it be to not feel well, be hungry or thirsty or tired and have no way of telling anyone? I cannot imagine how helpless that must make him feel. If I were him and I had all that drama goin' on in my world, I'd probably be a lot crankier that he's being. All that in mind, I cut him a little extra slack.

Perfect example...he now LOVES the tub. He wants a bath every night and I have no problem with that. The problem arises when he refuses to get out. He was in the tub for an hour last night. I finally coaxed him out with the jammies that he previously would not take off for four days. He hadn't seen those in awhile and he was mighty pleased. Sometimes, I have to pull out the big guns.

One other contributing factor might just be...at the age of 4 years and 5 months...he's hitting the "terrible two's". Great. I thought we did that already...apparently not. In a lot of ways, Jakob was an awesome 2-year-old...he kept to himself, loved puzzles and videos...very low maitenence. It's funny how we mothers can rationalize any of our child's behaviors...or at least try to...for awhile...until we're forced to face it...and given the choice of how we want to handle it. It's quite a journey... and I'm only at the very beginning.

I would be lying if I ever said that any of this is easy...and it really hasn't gotten a whole lot easier along the way. Don't get me wrong, there have been huge improvemnets...HUGE. I know that and I am so very grateful to everyone who has helped Jakob, Kenny and me. We still have so very far to go and there's no end in sight. All I can do during these 1 step back periods is slow down, breathe and realize that no matter how hard these times are for me, it cannot compare to what he must be going through. With a lot of love, empathy and compassion, we'll get through it...together.

-Jenn

January 2006

2006-01-01T13:52:00.000-05:00

Double ear infection, strep throat and a whopper of a cold sore. Poor little buddy. It's so sad...but I have to give the little guy credit, he has a pretty high tolerance for pain. He and I had a little talk about that. I simply told him that if he's not gonna talk and tell us that his ears feel clogged and it hurts to swallow, he better start making more of a fuss so we know. We all (myself, Kenny and my mom) thought that he just had a cold. He wasn't acting sick...just a little cranky.

I spent this past weekend in Vegas (a much-needed trip) and according to my mom, Jakob spent a lot of time saying "mamamama"...especially when he wasn't getting his way. I sure like to get reports like that...

Right now, he's up on the landing where I still have a bunch of lighted evergreens for him and he's playing with his alphabet puzzle. For added ambiance, I have a Sesame Street cd playing. Ernie's singing that song about visiting the moon. It's a ballad...nice and slow. The whole listening to music thing is pretty new. I set it up a few weeks ago...cd player on the landing with the speakers facing the 2-story family room. He really digs it. It took him about 5 seconds to figure out how to play, stop, fast forward, skip disc, adjust the volume and turn on the 3-disc changer. Turkey butt. Too smart for his own good. In fact, he just shut it off and is setting up the table to play with his marble run...very exciting.

The marble run is another story. He gets the stepping stool first and places it exactly where he wants it under the table in the eat-in kitchen. Then he takes out the little tray that we build the marble run on and puts it in its place. (As always, everything has a place and an order...routine is everything.) Once the tray is in its place, he seeks out the closest adult and leads them to the laundry room where the marble run is stored. Since we have a childproof thingy on the doorknob, he has to ask for help. If I'm the lucky grown-up, I ask him what he wants, he usually signs "open" for me and I try to get him to at least say "O". If I get a really good "O" out of him, I'll ask him to say "open" and I'll get "O-EH"...it's so cute. We're getting closer and closer to language every day. Anyway, once he has his marble run, it's go-time. He always builds the base and the very top the same way. The middle section varies. There are so many things I like about the marble run...my favorite part is the patience he displays. I remember the days when if one tiny piece of a toy didn't do what he wanted it to, he would melt down. Now he just fixes it when it breaks. It's a beautiful thing. Problem solving at its finest.

Jakob cracks me up every day...he's a very busy 4-year-old. He has a lot to do and not much time to do it. I've never seen anyone pay so much attention to detail. He notices every little change in his environment and if one little thing is out of place, he'll fix it. My favorite routine to watch is getting ready for bed...arrange the pillows, move the comforter, toss the blankies, get his sippy cup, give me a kiss, read a book, dim the light, adjust more pillows, give me a hug, hide under the comforter, read another book, play with his cars, brush his teeth, find his sippy, read one more book, turn out the light, dive under the comforter and wait for his kiss goodnight. He's busy...very busy...lots to do...

I realize that I haven't posted an entry since the end of November. I've sat down several times and started to write something but haven't been able to finish. There has been a lot going on in my home that I haven't been able to talk about in this journal and it would have been impossible for me to talk about Jakob without bringing up what's been going on...(I hope that makes sense). Thankfully, there has been a resolution and I believe it's for the best. Kenny and I have decided to divorce. It's amicable and mutual and I know we're doing the right thing for everyone involved, including Jakob. Kenny and I will be great friends and we will continue to co-parent Jakob. We both know how important it is for us to get along...the three of us will always be family, we just won't be living together.

It's very important to me to say that no one is at fault here. Neither of us is to blame. Neither of us has done anything that is unforgivable. We are simply too different...incompatible.

Needless to say, there will be some changes around here. Kenny will stay close by and I'll be getting a new roommate. My aunt from Florida is moving up here to live with me and help with Jakob. Aunt Sandy and I are very close and we've lived together before so we know how it's gonna go. I'm going to do everything in my power to make this transition as smooth as possible for Jakob. I have every confidence that it can be done.

As soon as everyone is settled, I will make the time for this journal. Bragging about my precious son and connecting with other families living with autism are two of my favorite things to do. They are two things that I need to do to help myself feel complete...

-Jenn

November 30th, 2005

2005-11-30T13:47:00.000-05:00

I love Christmas...it's by-far my favorite time of year. I love the decorating, the shopping, the cheesey music...all of it. I'm looking forward to Christmas Eve church services...still trying to decide if I'm gonna take Jakob. The last time I took him to church, it didn't go well. I don't know...he may do great. He's been handling unfamiliar surroundings pretty well lately. I'm gonna wait on making a decision...I'll wait til we're leaving the house on Christmas Eve.

Jakob loves the decorations...especially the lights on the tree. He's figured out how to get most of them on...the ones he hasn't figured out yet, he drags me over to them and does the sign for "lights". The sign for lights is elbows out to the side with hands down...but Jakob flaps his arms like a chicken. It's the cutest darn thing.

Jakob did great over Thanksgiving. It was just the three of us and my parents. Jakob sure does love his Grandma and Grandpa. He and Grandma did a lot of dancing together and my Dad is a pro at rowdy games. They all had a ball. It was pretty peaceful and nice. Jakob has improved so much at dealing with changes in our home environment...including lots of people and noise. I can tell when he's had enough and needs a break. The beautiful thing is I can take his portable DVD player and put it right in the middle of the living room and he'll sit there and watch it. There's no more rushing him to another room when he gets a little over-stimulated...that makes life so much easier. And God knows I'm all about easy.

Now that we're definitely inside for the winter, I've been trying to get the house ready for cabin fever. I know we're gonna suffer a lot from that...as well as seasonal depression. I don't do well with cloudy, dreary days. All I wanna do is sleep. So...I'm trying to provide us with plenty of fun things to do inside. Organization has never been one of my strengths...that becomes really obvious whenver I start a project in the house. I'm trying to minimize clutter but still have enough activities to keep us busy for a while. It's going ok...just slower than I'd like. I need to find a different place for his train track...it's all over the floor in the foyer. Whenever you walk into the house or come down the stairs...there's a train track. I'm getting him a train table for Christmas but I can't exactly put that in the middle of the foyer...I need a bigger house...ha...like that'll ever happen.

I almost forgot!!! The other day, Jakob opened his first present. It was actually a half-opened present from last year that got buried in the laundry room and he found it. He pulled all the paper off and it was so very exciting...more for me than anyone else, I think. Right now, I don't have any of his presents under the tree...primarily because I can't not give him a toy that I've already brought in the house...I'm weak, so very weak. I'll just have to go shopping again and wrap the stuff immediately...yeah, that's the trick. My best bet is to not buy him anything else until Chrismas Eve...fat chance.

Ooh..one more thing! Jakob is now repeating sounds! We say "O"...he says "O". We say "E", he says "E". (Those are his 2 favorites). I ask him to say "Mama", he says "ah-ah". There are a bunch of words that he'll make sounds for...we're getting there and it's so encouraging. Finally, some sort of language. Amen. I don't wanna say anymore about it right now...I'd hate to jinx it.

With all the craziness that comes this time of year, I simply continue to try to do the right thing when it comes to Jakob. More than one person in my life think I'm nuts...well, either nuts or on the verge of a breakdown. Sometimes I wonder myself. But all I have to do is take one look at Jakob and I feel pretty good. He's such a joy. I was explaining to one of his therapists that it's as if I'm living with an 18-24-month-old inside a 4-year-old's body. He's doing so many things that a typical 2-year-old would do. He's so affectionate and happy. He's constantly wanting attention which is awesome...I can remember when he didn't care whether or not I was in the room and now he's constantly wanting me with him. He'll pull me out of the kitchen and put me on the couch. Then he'll climb up on my lap and give me a huge grin.

I wish I could have a camera rolling at all times in this house. I think people would have a whole new perspective on autism if they could just see how cool Jakob is. He's sweet, he's funny, he's smart, he's adorable...he's perfect.

Jenn

November 17th, 2005

2005-11-17T13:46:00.000-05:00

Phew...it was a short down cycle. Things are back to "normal" and Jakob is a cool kid again. He's still a little short every once and awhile but that's typical. It's just what sets him off changes with the weather...71 degrees one day, 38 the next. It's a good thing that I kinda know how to adjust the thermostat (I feel like I'm getting good at these analogies).

We had a conference at his school and his teacher seemed really happy about his progress. That was so encouraging to hear. He's doing so much better playing with other kids, taking turns, transitioning from one activity to another. They said he seems "calmer and happier"...I'm glad he's the same at school as he is at home.

We also had an appointment at Children's. They seemed happy with his progress too and told us to keep doing what we're doing. The doctor asked a hard question..."what 2 treatments/therapies do you think have helped him the most?" I had no idea what to say...I honestly don't know. I think each thing we've tried has helped something different. And when all the therapies are combined, we got progress. Certainly, ABA has made a big difference...but I wouldn't give up anything else and only do that. If I had to choose only one or two, I don't know what I'd do...probably end up heavily medicated.

I took Jakob to get a haircut today and he did beautifully. He sat in a racecar and watched the Best of Elmo. He didn't even get bothered by the big clumps of hair that kept falling in his mouth. I was so proud. I can't believe we left without a balloon...oops. Next time, I'll take two.

Did you know that 80% of couples who have a child with autism get divorced? It's true.

I talked to an old friend today who just found out about Jakob. He was really upset...reading this journal had quite an affect on him. I have to say that it's pretty suspicious that there are 4 of us radio people who all worked in the same building and we all ended up having sons with autism. I can remember when I was pregnant and paranoid about autism, I kept thinking that the odds had to be that my baby would be ok...there were already 2 little guys who had been diagnosed. There was no way that there would be more, right? Anyway...it was very nice to talk to him, he was very sweet. We definitely had a good laugh at how much our lives have changed in the past 10 years...

One thing I've learned in the past 10 years is I cannot surround myself with negativity. No negative thoughts, no negative people. I can't afford to have my spirits brought down about anything. I want my glass always half full. If there's a problem, I don't wanna get mad...I wanna fix it. My grandpa was kind of a grouchy guy sometimes and I can remember my dad saying to him when he'd get mad "now Dad, there's no reason to get all mad...what good is that gonna do ya? Let's just find a way to fix it." I wasn't very old at the time but I recall it like it was yesterday. It's one of the many lessons that my sense-talking father has taught me. I wish I could teach that lesson to some people I know...it would be a great lesson for them to learn. It's a lesson I try to teach Jakob every day and I think he might be catching on.

When Jakob gets mad, it can be hard not to laugh. The way he crinkles his eyebrows and stomps his feet...of course, he's getting mad at something silly. Kids and their drama. I wish the biggest problem I had today was that the bridge on my trainset wouldn't stay up...travesty. He knows when I find his behavior to be unacceptable. I have that motherly "look"...that look of disapproval. The fit usually stops when I give him that look. The look is usually held for no more than 10 seconds and then I do something to make him laugh. As long as we're in an up-cycle, we're in business. We can go days without a tear. We've been tear-free for 4 days...life is good.

Jenn

November 14th, 2005

2005-11-14T13:43:00.000-05:00

This is autism...things go great for a while...and then bam! I have to say that Jakob has had quite a run this time...we've had a very productive up-cycle. But I'm seeing signs of the beginning of a down cycle. It's very cyclical. The tough part isn't recognizing the down cycles, the tough part is accepting them. They're a part of the deal. They're the tough times...the hard times. It's hard to stay patient and calm, positive and awake during down cycles. These are the times when getting out of bed in the morning is scary...because I don't know which Jakob I'm gonna wake up with. We're not at that point yet...but I'm afraid it's coming. And here's where it gets tricky...do I start preparing for a down cycle or do I fight to keep it from happening?? I don't know the answer and I really wish someone would tell me what it is. It's difficult to do the right thing when ya don't know what the right this is. Everything is a test...a shot in the dark.

Here's why I think a down cycle might be coming. I've been noticing a lot of stimming behavior..stuff I haven't seen in a while. Jumping, hand-flapping, lining things up, watching the wheels on his train spin. His temper has also been a little shorter. Today he went from totally calm to totally pissed in no time flat. I haven't seen his fuse that short in a while. He has been pretty easy to distract...but not so much today. We had a playgroup and Jakob was doing great...until the lights went out. We would have been OK if the lights would have come right back on...but they were florescent lights that take a few minutes to heat back up. Jakob didn't want the lights out and let everybody know that he wasn't happy about it. Zero to ten in no time flat. Screaming, tears, stomping his feet...smacking himself in the face. I tried to distract him and nothing worked. We finally gave up and left. He passed out in the car on the way home and slept for 2 hours.

I would have to say that for the last 28 hours, he's seemed a little out of it...just not all there. Maybe he's just tired...maybe he doesn't feel good, maybe his new supplements are upsetting his tummy, maybe he's hungry, maybe he hasn't had enough sensory input, maybe he's had too much...maybe he just doesn't like me very much right now. I go through phases where I don't like some of my best friends very much...I love 'em but they make me crazy. Maybe I'm just making Jakob crazy today. I really wish I could just ask him what was the matter and he could tell me. I know that's what we're working toward...speech. And I know we're making progress. I just get a little impatient sometimes.

It could just be a couple of off-days...or it could be the beginning of a down cycle.

What makes these cycles even more frustrating (to everyone involved, especially Jakob), is ya never know how long each cycle is gonna last. Jakob could go weeks in an up-cycle then have a 1 week down cycle...he could go only 5 days in a good cycle then have a down cycle that lasts 2 weeks. There's no schedule. A schedule would be nice. I could put it on the refrigerator...

There are a couple of other possibilities why Jakob's been a little off. We waited too long to re-order one of his supplements so he ended up going a couple of days without it. Maybe that caused some sort of imbalance in his system. Or...he and I went out Friday night for a few hours (which we rarely do) and then the playdate Saturday morning...maybe that was just too much social activity for him.

Maybe he's had too much sugar. Maybe he's mad at me for trying to get him to eat different stuff. Who knows for sure...only Jakob.

I've had a chance this week to catch up with some other autism moms that I haven't talked to in awhile. They've been going through some rough times lately. I hate to see wonderful mothers have rough times. They're doing such a great job with their kids but they don't see it. They beat themselves up and make themselves physically ill. "Start where you are, use what you have and it will be enough"...looks good on paper...but I so understand how they feel. We're all still pretty new at this and we're manuevering through it. And each of our kids is so different...I'd love to exchange manuevering advice but each one of us is operating a totally different machine. One has the minivan, one has an 18-wheeler and the third one a lamboughini...three totally different rides.

The one thing we all seem to share is how it feels...how it feels to live in denial, to grieve the loss of the life we imagined we'd have, the guilt believing that this had to be our fault and the fear of the future. Not a day goes by that I don't wonder where Jakob and I will be in 20 years. I have hopes and dreams somedays, other days I'm terrified. And not a day goes by that I don't think about who's gonna take care of my baby when I'm gone. That's such a weight to carry. That weight makes it very hard for us to keep our chins up during the trying times.

Another thing we autism moms have in common is how this rollercoaster feels. It's the fastest, scariest rollercoaster I've ever been on...big plunges and turns...upsidedown and sideways...underground...through a tunnel, with loud music blaring, knuckles turning white from hanging on to the handlebars...screaming bloody murder. What ever happened to those old wooden rollercoasters? Those never seemed to upset my stomach.

Also within the last 28 hours, I had a little bit of a run-in with an individual about Jakob's behavior. Jakob was being good. We were in public and Jakob was hangin' out. He was having a good ole time, actually. He was laughing and doing a little singing...apparently too loudly. This woman that was seated in front of us was visibly annoyed. There wasn't a lot I could do...I tried to quiet him down but the more I messed with him, the louder he got. Once again...Jakob was being good...just a little bit of a volume issue. Well...this woman turned around and said to me in a very condescending manner "would he like a cookie"? She obviously thought a cookie would shut him up...she was so snippy. I very calmly replied "he probably would, but he has autism, and is on a very strict diet". She said, and I quote "I'm sure he is" and she turned back around...not to be heard from again. The person sitting next to me almost fell off their chair. I couldn't see her face after that but I was told that she was just seething the rest of the night...seething because now knowing our situation, she couldn't complain. I might understand if we were being disruptive...but we really weren't. If we were being too loud for her, she had plenty of other places in the room that she could have moved to. Jakob and I had already been sitting in the very back corner of the room...the only place left for us to go was home. And I would have taken him home if he was being that big of a problem but he wasn't. He was being good...actually, he was being great. In the big scheme of things, the incident really wasn't that big of a deal...slightly disheartening but probably more typical than not. I know of stories from other parents who have had much more intense exchanges. I'm sure the more places I take Jakob, the more exchanges I will have. It's inevitable. I better start preparing for that. For my first time, I feel I handled it pretty well.

Well, I'm gonna hold onto my shorts and do my best to get Jakob whatever he needs for whichever cycle he's in...I'll be busy.

-Jenn