Wednesday, November 30, 2005

November 30th, 2005

I love'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 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'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 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. 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.


Thursday, November 17, 2005

November 17th, 2005 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? 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 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 is good.


Monday, November 14, 2005

November 14th, 2005

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 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 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.


Thursday, November 10, 2005

November 10th, 2005

I've been fired up the past few days. It all started with the front page story in last Friday's Cincinnati Enquirer. It was about a 12-year-old boy in Miami Township with ADHD whose parents, after years of searching, have found something that has really worked for their son...a goat. The goat is the only motivator that has consistently worked to get their son to focus. Of course, there are a couple squeaky wheels in the neighborhood that have complained and now the township is telling this family that they have to get rid of the goat or move. What a sad situation. They can't afford to move and they can't afford, for their son's well-being, to get rid of the goat. Well, I wrote a letter to the edior and they printed it. Here's the link to the letter and I'll attach the original draft that I sent to the Enquirer (the paper edited my original...which is typical but I'm fine with their edited version...I think my point was made).

I just fail to see why people have such a hard time doing the right thing. Everywhere I turn, it seems there's someone not doing the right thing. Why is it so hard? Do they just not see it? Are their neighbors so self-involved that they can't see how the goat is helping this child? What could be more important than a child's well-being? Have they lost all perspective? Or are they just ignorant to the challenges that a child with ADHD faces? If that's the case, they should do the right thing and educate themselves. Have they ever even interacted with this family? Do they know the child? If not, why not give that a shot before they start complaining about zoning ordinances? I'm aggravated. I have a feeling everything with this boy will turn out fine but I'm still steamed that this family had to go through all this. Everything happens for a reason though...hopefully, the front-page exposure has raised awareness...

One thing's for sure...the front-page exposure has me upset with more than some of the people in Miami Township (I have to say some since the family does have some supporters). I'm upset with every person on the planet that doesn't at least try to do the right thing. For instance, I'm agitated with how extraordinarily expensive it is to provide a special needs child with the services he or she so desperately needs. Jakob is 4...he has never spoken a word...he's not qualified for speech therapy??? Our insurance company only provides speech therapy for a child over 3 if he or she has lost their ability to talk due to an accident. Are you kidding me??? How much do I pay for insurance??? I have the top-of-the-line policy...apparently top-of-the-line ain't all that great. My son may not be able to talk but thank God, if my husband had erectile dysfunction, they'd pay for his viagra. Something ain't right here.

I'm trying really hard to stay calm...I'm just frustrated. I don't know if it's my small-town background or what but I hate it when something so simple gets so complicated. Red tape...blah, blah, blah. Screw red the right thing.

I feel myself wanting to get involved in the politics of it all. If I had the time, the energy and the yank to get something done, I'd try. I would probably end up having a breakdown from the aggravation of dealing with a bunch of people that rarely do the right thing. I just can't surround myself with people like that. It would make me miserable and then I'd be no good to Jakob. He needs a somewhat-sane mother...

One other thing that set me off and then I'll move on. I cannot watch Supernanny. How that woman doesn't just lose her mind on those parents is beyond me. I have a lot of patience...usually. I just don't deal well will stupidity (or laziness or ignorance or people who don't do the right thing). Anywho...last week the Supernanny went into a home with 4-year-old typical twin girls and a 3-year-old boy with autism. Now listen, I will admit, I was a clueless new mom (and still am on some levels), but this woman was beyond clueless. She was mean and insensitive and stupid. She totally ignored her daughters and would constantly shoo them away. And her son?? Oh my God, the boy has sense of danger whatsoever, and she would just let him walk out of the house...into the unfenced yard which was right on a busy street. She wouldn't even watch him...she'd ask her 4-year-olds to watch him. What???? The Supernanny observed this and simply locked the door. Unreal.

Ok, I'm done. I'm ready to write about how wonderful my kid is...

Jakob is so funny that I can hardly control the laughter. I have almost peed my pants on several different occasions this past week. He's doing so many things that typical kids do and he does it with this unbelievable amount of orneriness. For instance, when I'm trying to get him to take some gooey medication that he wants no part of, he used to scream bloody murder to the point where one of us would have to hold him down and the other would shove the stuff in his mouth. Thankfully, we don't have to do that anymore. Now he sees me coming with it, he lets out a short but definitive growl then runs to the couch. Once he's slammed into the couch, he buries his face in a pillow...thinking that if he can't see me, then I can't see him. He'll move his head slowly, just enough for him to see if I'm still standing over him with the medicine. All this crying (love that). Once he realizes that I'm not going away, he scoots down the couch, face still buried in the pillow. This routine can go on for a while...especially when I decide to mess with him along the way...a little tickle here and there so he giggles. He giggles a that giggle. Eventually, he takes the big deal. His whole thought process cracks me up. Where once there was screaming and tears, there are now attempts to manipulate (or problem solve as I like to think of it).

Jakob's bedtime routine has become 100% enjoyable most of the time. Every little detail of the routine used to have to be deviation from that routine or it would get ugly. Now, in his big-boy bed, he's able to go with the flow a lot easier. Lately, it hasn't been taking him long to fall asleep. He's usually sleeping before the first video is over and I'm still in the bed with him. He loves rolling around on the bed with his blankie, pillows and comforter. He used to hate having any kind of blanket on top of him. Now he can't get enough of it. He actually fell asleep tonight with his head under the comforter (and me under there with him). I didn't want to be that mom that had to lay in bed with her kid for hours before he'd fall asleep...but I can see how moms can get trapped in that situation. Kids are so darn cute when they're sleepy like that. Jakob lays there with his head on the pillow and looks at me with this huge grin. I'm a total sucker for that. And when he pulls me into the bed and lays me down right where he wants me to be and snuggles up with me...forget about it. Remember, this is a kid who as a baby didn't want anyone in his space. Bedtime used to break my it's the best time of my day. If he keeps growing at his current rate...we're gonna have to get a bigger bed...and a few more pillows.

School and all of his therapies are going great. He's doing so well and I'm so proud. I think it's time to add more hours to his weekly schedule. The experts say that a child with autism should have 40 hours per week of therapy. I feel like he does so much but we're only at 23 hours. I think he's ready to handle more. I have to find someone that does music therapy in the home...speech therapy would be great too. I really believe that Jakob will sing before he talks. He tries so hard to sing...he imitates sounds from his Baby Einstein videos and makes noises along with the Sesame Street videos. He does the most singing when I'm not in the room. It's as if he can only concentrate on one thing at a time. If I'm in the room with him, we're dancing or stomping our feet or clapping...but no singing. As soon as I leave, he sings up a storm. So I do my best to keep balance...I dance and clap for a while and then I give him his space so he can do some singing. It works out pretty well, it gives me a little time to get some things done around the house.

The house...I don't wanna talk about it.

I’m looking forward to decorating for Christmas. I have a few small evergreen trees with white lights on them that I leave up year-round. I hardly ever put the lights on...until recently. Jakob has developed quite an interest in the lights. Last year, he couldn’t have cared less. I'm gonna put up a huge tree with lots of lights and I can't wait. I just have to make a decision how crazy I'm gonna go with the rest of the house...last year, I had forty-some trees up...I don't think I'm gonna do that again...or maybe I will. I never know til I get started. I just have to get the tree up first...I wonder if a 12-footer will be big enough or if I should go bigger...

The most important goal I have right now for my life with Jakob is continued laughter. We had so much misery for so for Jakob was hard. He wasn't a happy baby and toddler hood wasn't any better. Making him laugh has become easier and I've never heard a greater sound than his full-blown belly laugh. What's that saying...laughter heals the soul? Certainly, in our house, there's no better therapy...for me and more importantly, for Jakob.

Here’s the original letter to the editor that I sent to the Enquirer:

For the past few days, I haven't been able to stop thinking about the Miami Township family with the 12-year-old son who has ADHD. After more than 6 years of searching for that one thing, that one answer, that one vehicle, that one way that this child's parents can reach him, his mom and dad have found it.

They are so very lucky.

I can't help but believe that the neighbors and the township simply don't understand what an amazing discovery this is. There are so many parents living every day trying to find their goat with no luck. I am a parent looking for a goat. I have a four-year-old son with autism and I feel this family's pain. I have been searching for that one thing that will reach my son. We have little victories here and there, a toy or an activity that draws Jakob in for a while but nothing yet that has stuck. After endless hours of researching, observing, shopping, purchasing, setting up and showing these things to Jakob, I have not found the goat. I'd give anything for a goat.

I will continue to search for my family's goat with the daily prayer that I will find it. Every day I look at my beautiful son and see the potential in his eyes but there's something that's preventing him from allowing his potential to shine. Once I find his goat, I'll unlock that potential.

This family has been able to unlock their child's potential with the help of a goat. I pray for them that their neighbors and the township will spend more time educating themselves about developmental disabilities and stop getting caught up in zoning ordinances. I know if they had a better understanding of how awesome a goat can be, they'd welcome the goat to the neighborhood and maybe even take a turn with him on the trampoline.

jenn jordan