So here it is almost April 2007, Autism Awareness month, and we're having a really rough time with Jackie. He seemed to develop an adverse reaction to his abilify called Akathisia, which means that he's pacing alot and very restless. I don't know for sure that he had this but his psychiatrist thought so from what I told her about him and how aggressive he's become. Now a week and a half later on the decreased dosage of abilify he's doing better, but there is still some restless behavior and pacing.
No one wants side effects from these drugs we take and give to our kids in the hope that it will help some of them to control their behavior more then they seem to be able to do without the aide of medication. I have been putting off another update to Jackie's pages because I haven't been doing much RDI with him and we've been struggling with the bad behaviors he's displaying mostly out of boredom and to get attention. With it being Spring Break I didn't think I would have time to work on an update until after the move but somehow I have found the time and motivation to add the tenth page to Jackie's Pages.
Because of his restlessness we've decided to wean him off the abilify and to get him off the topamax, but not both at once. It might work out that he stablizes at 5mgs of abilify and then we will start taking down the topamax by 25-50 mgs at a time, per week and hopefully he'll be off that completely before too long. I have read some scary things about topamax and therefore that has changed my thinking about having my son to continue taking it. I don't think it's really helping him so to get rid of it will make me feel a lot more comfortable, unless we see him go through something where he loses his gained speech, I see it being gone before summer's arrival.
We are hopefully going to move into a great place soon, one with an on site park, and hopefully we'll get an aide to come out and help us take him to the park during the summer. We had an aide during the fall and he did really well, but something bad happened to her son and she had to quit working to take care of him. And since then no one has stepped up to the plate to fill those shoes she filled so well. Jackie still talks about her and I have to tell him, "Jackie, she's gone, I'm sorry. Sometimes people come into our lives and sometimes they go out of them and we just have to accept it."
He doesn't really understand it but I also tell him, "She didn't leave because of anything you did so don't think that way." Because he would say, "Bad boy?" and I knew that was where his train of thought was running and I wanted to head it off before he started to obsess on it. So as you can imagine things here have been pretty up and down again, he was doing so well there was no incidents of aggression going on while we had the aide and when we lost her the aggression started back up and that was why we increased his abilify. It wasn't immediately that he developed this Akathisia, but like a month and a half later that we began noticing the aggression returning and he seemed restless and was pacing a lot both at home and at school, sometimes refusing to sit down, which are all symptoms of Akathisia.
We don't know what tomorrow holds, but we hope that our son gets past this ackward phase he's in, a lot of it is the onset of puberty hitting his little system and the hormonal changes that are setting the stage for his next growth spurts. He's doing well in some ways I would like to share, the other day he looked at the clock and spontaneously said, "It's two o-clock," and he knew that we were going to go outside shortly after two so this was a big deal to me. I was thrilled he made that casual observation! The other thing is that he's able to write his name now, first and last, though his handwriting is still pretty bad, he's able to do it.
Unfortunately he stepped on his guitar purposely and broke it and then had to pick it all apart so it was unfixable, and he's torn up a pair of shoes and done some other troublesome things at school. But for the most part we think he's doing better since we decreased the abilify a bit. I want to direct you to a friend's youtube videos, two friend's actually, one is my friend Amanda and she was on CNN recently, I consider her a friend because we've chatted in the Brain Talk Flashchat and had a marvelous time together with a few other of the autism support group mothers. Her videos are simply amazing, if you want to see into the world of autism from an adult perspective her videos are perfect to help you see inside autism. She is also a disability advocate and talks a lot about how people who have developmental disabilities are sometimes looked at as non-people by others and how dehumanizing it is to have that done to you.
The other is my friend Phil Commander who I met on the RDI support board last year. His videos with his son were fabulous, but his account was locked up with no reason given and his videos all removed, and he has since remade an account and is redoing them all. If you're looking to learn more about biomedical interventions for autism Phil is one dedicated father who helped his son to in my opinion come out of autism almost completely, if not completely. If you're looking for something unique, thought provoking and interesting, check his youtube videos out. I found a few pics to put up to add to this, so here is a picture of the front of the new place we're hopefully moving into in May.