My conclusion that Clonidine was helping Sam during the day was wrong. He was just sick. It started with about two weeks of fatigue, then a cough and then high fevers. He got so bad he became very dehydrated. It ended with his first round of antibiotics. As soon as he was better he was insanely hyperactive again. Sigh. I should have known.
Sam's new stim involves taking children's books (board books) and putting them on the edge of a counter or table. He opens the cover and then hits it. He flaps his arms and watched to see if the books falls to the floor (it usuallys does). He repeats this again and again - perhaps varying the location. At times he gets very worked up and starts throwing the books. Some throws are long throws, designed to go across the room. Other throws are hard throws, meant to hit the ceiling. Eventually these books break and he chews them a bit. He engages in this activity fom the time he wakes up until the time he goes to bed. I have repaired many books and thrown away many more that were beyond help.
We have tried, without success, to defeat this stim. The problem is that Sam does not engage in a stim for a certain period of time (10 minutes, an hour) and then snap out of it. Pretty much every minute of his waking life is stim - that is the point to which he has regressed. There is no other activity to which he can be re-directed. I could force him to do a puzzle for a minute or to but then he is right back to the activity. I have spent the last coupld of weeks following him around trying to re-direct his energy and it is not making a speck of difference. After following him around all day yesterday, my birthday, until my hips and lower back were in too much pain to continue (pregnancy), I gave up. I do not have the ability to win this battle. I will talk agin with our home teacher next week to see if she has any other suggestions. I will try them with my strongest resolve but I suspect we will be right back here again in a few weeks.
WHat makes this stim so sad for me is that he is destroying the very same books I remember readin with him before he got this bad. He loved books. He would hand me a book and say "bead?". We would read and read. He would smile and point to parts he remembered (the moon in Hickory Dickory Dock, the blueberry bush and the cat in Yertle the Turtle). Now trying to get him to sit for more than 10 seconds is close to impossible. Getting him to listen to a story makes his skin crawl and he starts yelling and jumping or running. Even if I could "train" him to sit and listen, he takes no pleasure in stories anymore. Whatever he once understood is gone.
I suppose I should feel happy that Sam managed to be pretty calm over the Thanksgiving holiday. We managed to host dinner without too many issues. The hard part is now family keep commenting on how pleased they are with his progress. It is a reminder of that hopeful feeling I felt in November - the feeling that I was getting a tiny bit of my boy back. But now it is gone again.
3 comments:
Just a suggestion, and take it for whatever it is worth, you may want to talk to your doctor about possible side effects of the antibiotics.
I know its hard when they totally fall off the wagon - seems like a years worth of work is down the tubes or something and it will never be ok again. Khaled will speak sentences and then he gets so dysregulated some days he cannot even mouth the word juice or focus his eyes on an object for a few seconds.
Do not underestimate the effects of illness on the human body. We have developed over the course of our lives many ways to cope with the changes illness brings - and we have internalized these processes and made the necessary neural connections in our brain associated with those feelings. Autism has not allowed our children to do this. They got nothing basically to cope.
Do you think a change of scene might help?
Instead of following him around the house, woudl you want to take him for a drive. I bet its like crazy snow in NJ these days. Push him down some slopes in a toboggan perhaps? Unless he is too ill. Indoor playground?
Sometimes the only thing left to do to break the stim is to change the environment its occuring in.
For us the ear slapping got so bad at home, I would have to change the evnironment when it was out of control. Almost as if the house had become an SD for hitting himself on his ears.
Sorry for the random suggestions - its all guesswork in our house most of the time!
I pray you guys come out of this soon.
I know the feeling about the progress. It is hard when everyone thinks your child is doing so much better and then they regress. My son who has Asperger's syndrome had a good year last year and everyone was so impressed at his improvements. Now how do I explain that he is now at age 7 back to square one? His behavior is back where it was when he was four with the sensory stuff in full swing this year. Good news is he has always gone back and forth so next year could be better. And next year could be better for you too!
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