Monday, July 29, 2013

Autism Awareness: A non-eloquent rambling because I had too long to think while scraping paint

Those of you who know me know very well that my son is 9 and has high functioning autism. He has all kinds of trouble in school because of his behavior, but he loves to learn and he loves science. And he is wicked smart.  So this summer we signed him up for a week long day camp at the science center where we live. Usually when we sign him up for classes there and at the Museum of Natural History he has no issues and everything runs smoothly, but today when I went to pick him up after the first day of camp his counselor expressed all kinds of concerns. Apparently he had a few meltdowns today and they didn't know how to deal with it. E.g. he lost a game and he got upset, another kid bumped into him and he got upset, stuff we are used to. But they also accused him of throwing food at lunch, which is not him at all and he had no idea what I was talking about when I mentioned it, and if there is one thing he doesn't do it's lie (I'm not sure he can, actually), so I wonder if someone made that up.  I know a lot of people claim their kids would never lie, but my son, he really doesn't; he will avoid replying if he doesn't want to tell the truth, but he will never flat out fib.

Anyway, they kept saying they needed more strategies to deal with him because they "wanted him to be able to stay," thus implying to me that they were going to kick him out of the camp. They also suggested that he needed an aide (I assume me or his father) for the field trip, which is Thursday when they go to Cedar Point Amusement Park--it's an amusement park science camp--which is probably the least of their worries because he will be fine at CP. He loves the movement, and he feels secure when he is strapped into the rides. I told them that financially I don't know how that would work (at nearly $60 for one adult ticket!), but that I would come back in the morning and have some more suggestions for them after I talked with Gavin and figured out what happened from his perspective.

He tells me it was too loud and that he was not comfortable because he doesn't know anybody and now he doesn't want to go back, but he knows they won't refund our money and he doesn't want to waste it. I am kind of upset because the more I think about all this, the more it feels discriminatory. I know they have a behavior agreement for the kids, but Gavin is not trying to be "bad"--he is trying really hard and he wants very badly to be the model of good behavior. He is very hard on himself when he loses control. I know they can do whatever they want because there's no law saying they have to service a child's special needs, but still. Also, the counselor for his group said she studied special ed, so I would think she might have more sympathy, but like I said, it sounded like they are threatening to kick him out. She should see this as an opportunity to learn what she's going to be dealing with for the rest of her career as a teacher. 


So we stuffed his backpack with half of the items in his sensory box and now I get to sit down and write a list of suggestions that could end up being a mile long for all I know.  One of the hardest things about dealing with my son's autism is that what works this afternoon may not work tomorrow morning.  Sometimes it's a crap shoot.  That's why I spend so many hours holding my breath, hoping that he will catch the next baseball that comes to him or be able to jump off that diving board without freaking out or that he will be able to get out in a game of tag without majorly tweaking.  You just never know.  

We had to scrape up a lot of money for this and I just wanted him to have a good time and enjoy himself in an educational setting for a change. So I don't know how exactly I should approach them in the morning. But moreover, I am very frustrated and sad because I can foresee his quirks causing people to discriminate against him for the rest of his life.  It truly breaks my heart to have had this sudden new awareness about Autism.