We've moved!

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

"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

"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

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

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.