Proving myself wrong
Warning: negative posting ahead.
OK. Thought we had made a turn in the right direction. Behavior seemed to be improving, and peer initiations had returned. The schedule change seemed to be one of the key steps in allowing Hunter to get healthy.
Not sure what happened, but we seem to have put our car in reverse. Not neutral, where we could hang out for a bit and maintain, but throw the car in reverse and peel out of the parking lot.
Friday I picked him up from school and his teacher indicated that she thought he was getting sick. He had cried for two out of three hours of school. I cancelled his occupational therapy, swim lessons, and ABA therapy and drove him straight to our pediatrician. She didn't have an opening, but they know our situation and the nurse swabbed him for a strep culture. It was negative. I still wasn't convinced, because his teacher commented on how different he was, so they grew it out over the weekend.
The weekend was packed again with soccer games, birthday parties, and beautiful weather. We spent time riding bikes and running around, but Hunter seemed to have a shorter fuse. He became upset at the littlest things. He did go in his soccer game for a minute (his private preschool teacher came to watch the boys- so sweet!!) and slapped hands with all the players after the game, but there were more negative moments than positive.
Today he seemed fine when I picked him up to take him to his IOP, and walked in happy. His therapist wrote to me, "It's hard because his first couple of hours were some of the best things I've seen from him (spontaneous comments to peers, spontaneous initiations and interactions with peers, lots of "going with the flow", laughing, following all directions, and we had pulled some of the more obvious embedded reinforcers), then he had an episode of behavior and was not able to cope or get over." He had his shoes off and was crying hysterically about having a "bad day" when I walked in at the end. He had hit the therapists, screamed, ran away from the group...something triggered him and he was done.
I immediately called the pediatrician to get his strep results: negative. I called the nurse to find out the ASO titers: negative.
I just don't get it.
How can a child be so good, so engaged, so happy at one moment, and then come crashing dramatically down the next?
If you would have asked me five years ago if you could cure Autism, I would have said absolutely not. You can decrease the severity with therapy, interventions, etc, but it is not curable.
All I want now is to prove myself wrong. I want to be able to scream a big, "Take that Autism!" at the top of my lungs and travel around to every doubting professional, like myself a few years ago, and show them that you can recover from Autism.
Autoimmune Autism, that is. Maybe when someone asks me in the future what his diagnosis is, I will tell them just that- he has AA. Autoimmune disorders arise from an inappropriate immune response of the body against substances and tissues normally present in the body (autoimmunity).
He is working so hard to function with his good blood cells that are being read as bad, and his body is turning against him.
Nobody likes to be proven wrong, but bring it on Autism.
Please...
make me eat my words.
Painting time!
OK. Thought we had made a turn in the right direction. Behavior seemed to be improving, and peer initiations had returned. The schedule change seemed to be one of the key steps in allowing Hunter to get healthy.
Not sure what happened, but we seem to have put our car in reverse. Not neutral, where we could hang out for a bit and maintain, but throw the car in reverse and peel out of the parking lot.
Friday I picked him up from school and his teacher indicated that she thought he was getting sick. He had cried for two out of three hours of school. I cancelled his occupational therapy, swim lessons, and ABA therapy and drove him straight to our pediatrician. She didn't have an opening, but they know our situation and the nurse swabbed him for a strep culture. It was negative. I still wasn't convinced, because his teacher commented on how different he was, so they grew it out over the weekend.
The weekend was packed again with soccer games, birthday parties, and beautiful weather. We spent time riding bikes and running around, but Hunter seemed to have a shorter fuse. He became upset at the littlest things. He did go in his soccer game for a minute (his private preschool teacher came to watch the boys- so sweet!!) and slapped hands with all the players after the game, but there were more negative moments than positive.
Today he seemed fine when I picked him up to take him to his IOP, and walked in happy. His therapist wrote to me, "It's hard because his first couple of hours were some of the best things I've seen from him (spontaneous comments to peers, spontaneous initiations and interactions with peers, lots of "going with the flow", laughing, following all directions, and we had pulled some of the more obvious embedded reinforcers), then he had an episode of behavior and was not able to cope or get over." He had his shoes off and was crying hysterically about having a "bad day" when I walked in at the end. He had hit the therapists, screamed, ran away from the group...something triggered him and he was done.
I immediately called the pediatrician to get his strep results: negative. I called the nurse to find out the ASO titers: negative.
I just don't get it.
How can a child be so good, so engaged, so happy at one moment, and then come crashing dramatically down the next?
If you would have asked me five years ago if you could cure Autism, I would have said absolutely not. You can decrease the severity with therapy, interventions, etc, but it is not curable.
All I want now is to prove myself wrong. I want to be able to scream a big, "Take that Autism!" at the top of my lungs and travel around to every doubting professional, like myself a few years ago, and show them that you can recover from Autism.
Autoimmune Autism, that is. Maybe when someone asks me in the future what his diagnosis is, I will tell them just that- he has AA. Autoimmune disorders arise from an inappropriate immune response of the body against substances and tissues normally present in the body (autoimmunity).
He is working so hard to function with his good blood cells that are being read as bad, and his body is turning against him.
Nobody likes to be proven wrong, but bring it on Autism.
Please...
make me eat my words.
 |
| Creating canvas art |
 |
| brothers...they look just a little alike one another |
Comments
Post a Comment