Friday, November 19, 2010

update, part 2, no pics

My camera is still missing. I'm really bummed. I'm starting to wonder if it's not lost in the big world somewhere. I don't remember the last time I used it. I know we had it on Halloween, but it's been around the house since then. Surely it's around here somewhere....

Anyway, I'll carry bravely on.....updates....

Jack- Jack turned six years old in October! He is doing really well. He's improved in so many ways. He can communicate so much better, he can answer questions decently most of the time and has such a goofy sense of humor. He's very smart and loves silly word puns, that kind of humor, and it's so fun to make a little crack about something and see if he gets it. He usually does. He doesn't really like going to therapy much anymore. I think he loves his therapists, but it's hard work now and he'd just rather stay home and play. We had this conversation recently....

Jack, in his slow and careful way of speaking-"Therapy is harder than it looks."
Me- "What is hard for you to do?"
Jack- "Double meanings are hard."
Me- "You mean like 'butterflies in your stomach'? Is that a double meaning?"
Jack, smiling- "No, that's an idiom! Butterflies in your stomach...does that mean that you are nervous, or that you had butterflies for lunch?" (giggling now because he knows the answer)
Me- "Ok, so what's a double meaning?"
Jack- "Earth is a double meaning."
Me- "What does earth mean?"
Jack- "Is earth our planet that we live on, or our the dirt in the yard?"

He still reads all the time and especially still loves the DK Eyewitness books. I recently took him for his 6 year well child visit and he prattled on and on (as he does when he's nervous) about Pluto and windy Neptune and Jupiter's moons. He's blowing through the kindergarten work in most areas, but he struggles a lot with the Bible narrations. His speech therapist is helping with this, doing sequencing cards and story predictions and that sort of thing with him. He's very distractable and often the hardest part is just getting him to sit still and listen to the story! This is one of the saddest issues for me, and other than the eye contact issue is one of the ways I *know* Jack has declined into autism. From the time he was a toddler, Jack *loved* being read to. He would bring me books all day long and would sit and listen happily for as long as I was willing to read. I remember stopping my work in the kitchen and sitting down on the kitchen floor to read him a story. Now it is very difficult most of the time to get him to pay attention to a read aloud. If I can get him to sit still next to me at all, he usually chatters to himself about some unrelated topic the whole time. Every once in a while I find a book that grabs him. We read "Make Way for Ducklings" during our "B is for Birds" study and he was utterly charmed and sat through that long book several times. But usually it is very difficult to keep his attention.

He also still struggles with writing and will for some time. He has been receiving occupational therapy and can very, very slowly and carefully write a handful of capital letters. That's big progress! But still,,,his skills in this area are probably on about the level of your average three year old. We have been practicing with a Magnadoodle board because that surface is much easier for him to write on than paper.

Other than the four hours a week of speech and OT, we haven't made much progress in pursuing other treatments. Attempts to broaden his dietary horizon so that we can try the gluten/casein free diet have failed miserably. If anything, he continues to get more picky and his growth curve has dropped off dramatically. He used to be around the 60th percentile and now his height is around the 25th percentile. This was especially obvious when I broke out cold weather clothes....he is wearing the same sized pants as last year! His calorie intake is fine, he's not underweight, but he eats such a limited diet, more limited than ever. He basically lives on string cheese, milk, crackers, apples, bananas, and grapes. Sometimes he will eat some fish sticks, chicken nuggets, or hot dogs. I know these are not very healthy, but it is the closest thing to meat that he will eat and I buy the healthiest versions of these that I can find. He eats no real meat, eggs, no beans, not even peanut butter anymore. He'll eat junk and McDonald's and ice cream and such, but of course I don't want him eating a bunch of that! He does take a multivitamin. Mostly I'm worried about his protein intake. Oh, he gets plenty of actual grams of protein I guess from all the milk and cheese. But different forms of protein supply different amino acids, and he gets pretty much all of his protein from milk products. The pediatrician recommended putting him on Pediasure once a day, so my new morning job is to get the shake down him while keeping it away from Tess...she's more than happy to help him drink it if she can!

One issue that keeps popping up with Jack is safety. This is common, I guess, with special needs kids. They get older and better able to outsmart child-proofing measures, but they still lack any judgement at all. Our most recent issue has been that when Jack wants to go outside he will open the play room window and just go on out. See, we have child-proofed the doors and he still can't figure out how to get those open. He doesn't like to ask us if he can go out because we might say no, or at the very least we will slow him down by making him put on socks and shoes (or pants,,,he often has cast those off), so he finds it faster just to open the window and climb out. That particular window overlooks the deck, so it's not high up or anything. The locks don't stop him. We haven't been able to find any latch or lock that fits our window or devise anything that he can't figure out. Because it's now so cold and dark so early, and because lack of pants or daylight doesn't phase him any, John has duck-taped the window shut from the outside. It is quite the white trash addition to the house, let me tell you. Still, it's not quite so trashy as finding your nearly naked 6 year old on the trampoline when it's 45 degress outside. We are still looking for better alternatives to the duck tape though.

In many ways, Jack seems more autistic as he gets older, even as he makes great improvements in many areas. The differences between him and other kids just are more apparent the older he gets, especially in the area of "oddities"...little mannerisms and behaviors that he exhibits...crying with any correction that you make, hitting himself in the head when he's upset, laughing inappropriately, repetitive speech. I find myself worrying a lot about his future. He has very poor social abilities as far as interacting with other children, and unlike Kain, he doesn't care. He has no interest in other children at all, at least outside of our home. He does play with Kain and his siblings quite well. One of his therapists has recommended calling the school district for additional speech therapy. They do it in small groups and she thinks this would be good for him, so I will check into that after Thanksgiving. I would love to find a social skills group for him but haven't been able to find one so far. It's frustrating.

Anyway...I think I will stop here and continue with Tess and Henry updates next time. Again I've developed keyboard diarrhea and this post is quite long enough!


Ruby said...

How about a stick in the window on the outside similar to how you put a stick at the bottom of sliding glass doors to 'lock' them?

As my mom would say "It sounds like you have your hands and your heart full"

mel said...

Thanks Ruby, this is basically what we have now ended up doing! John had to tape it though to make it stay, but so far Jack hasn't figured out how to get the window working again. Good thing, it's getting a bit cold to find him outside half-dressed!