We learned the syndrome when he was 8. I always new there was something different about him. I choose to work with what he has to keep him as strong as possible. School was my biggest fear. Children could be so cruel, and my son knows what he has. I mean he really compares himself to other kids his age.
I decided a long time ago that even though my son had this syndrome, I would set high goals and help him to learn to fight for what he could do.
I am proud to say that he is still in a regular classroom with other children his age and was only held back one year (my choice). So he is in 6th grade instead of 7th.
I did all the research I could about food and exercise for him.
Then I learned how his brain processed things (more research).
Then I acted a plan that was mostly focusing on preparing him for what he needed to know in life.
Easy stuff was first, like staying still and out bursts. To eating habits and when and where to eat. Like I learned the Gym and the cafeteria are the worst places for my son. The sounds and the many voices all at once would help him lose control. So we compromised, I explained to my son what was causing him to feel this way and we told him if we found a nice quiet place to have lunch maybe it would help to keep him in the classroom.
That was 4 yrs ago and he is doing great. Don't get me wrong we have our moments when they call me and say he's under a desk. It just doesn't happen that much and usually it's because of some kind of change.(sub-teacher, too much going on, tests, etc.)
He does have an aide with him most of the day. Our school district is training they're teachers about the syndrome because of the increase in awareness, I believe. Each child has a special spark in them you just have to stop being scared or worried and make the syndrome your friend. Then you can see what it really does to your child and learn to work with what you have. (Keep your enemies close?)
It' s hard to deal with, especially since I have 3 other child (8, 12, 21.) and they do not have the syndrome. My 8 year old son knows about this syndrome and has learned how it works.
My 12 year old daughter adores all her brothers, she always keeps her brother close and I usually find them together playing some kind of card game.
My oldest left for the Air Force in 2003 and that was the hardest time. Autism hates change.
So I make him focus on the things that pretty much stay the same. See to me even if it works one time thats a small step to winning the fight.
Some people say "there is no cure, how can you talk about winning a losing battle?"
Well, everyday I can look at my son and he knows who I am, I win!
Everyday I can get a hug or even a kiss hello, I win!
Everyday I wake up and he is still trying, I win.
Autism is not going to win without a fight from this family!
My 13 year old has allot of stored "use-less" information. Well maybe to the outside world. To us its' amazing.
All my children are very close and when they are together you would be amazed at how much they all watch out for the 13 year old. They also do not let anyone make him feel small. It's really a blessing.
I hope this helps, I love talking about my son and our battle. If there is anyone out there that needs help or just an ear let me know. I'll try.
Saginw, Texas.