A couple of years ago, I wrote an article for the Atlantic about how long summer breaks from school are brutal on parents who work, on parents who can’t afford camps, and on working class and poor kids whose academics skills suffer. I left out a major group in that article. Summer breaks are brutal on parents like me, who have a kid with special needs.
If your child has special needs, the child might qualify for something called an Extended School Year (ESY) through the school, which is intended to prevent academic regression. The school district makes it extremely clear that the purpose of an ESY is not to teach the kid anything new – God forbid. No, all that happens during this summer program is that school maintain basic reading and math skills, so the kids aren’t starting from square one in September.
And, as your case manager will tell you, an ESY is not camp, so there will be no fun, exercise, or exposure to other children. It’s a room, a teacher, some worksheets and that’s it. For four weeks out of the eleven weeks of summer break. Some schools provide a full day of ESY for July. Ian is getting 2-1/2 hours for 20 days. And, I’m just finding out that he’s been grouped in with the kids in the lower functioning life skills class, so he’s really going to get nothing out of it.
Because 2-1/2 hours per day of activity is not enough for any kid, I spent April scrambling to find other programs and activities for him. Ian doesn’t have any friends, so if I don’t have him in activities, he’ll be basically mute by the time we go back to school in September.
In the end, I patched together about seven or eight different smaller activities for the summer. I’m acting as the Uber driver taking him from thing to thing. We have a color coded schedule on the fridge. Today, he has four different activities – ESY, swim lessons, speech class, and marching band practice.
The tricky thing is finding the right activities for Ian. He doesn’t fit into any category neatly; sometimes he needs help and sometimes he doesn’t. For example, last week, I put him in a half day Maker Space camp for typical kids. Maker Spaces are basically robotics and art classes, which is something that Ian is really, really good at. Since the camp was offered through the school district, I got them to pay for aide to shadow him around to make sure that he wasn’t being too weird or to help him with verbal instructions. Turns out that he didn’t need the aide, because he is even better at computers than I realized. He finished all the programming fifteen minutes faster than the other kids.
The Maker Space camp was a major win, but the afternoon swim class isn’t. The town swim club is one of the murky, vintage ponds. They have extremely strict rules about swimming in the deep end, because kids have drowned in there. Even though Ian is a strong swimmer, he doesn’t know how to do the alternate breathing trick, which is a requirement to pass the swim test. The town pool offers swim classes for teenagers who haven’t yet passed the deep water swim test. When I read the description in the pool bulletin, I thought that “teenager who can’t pass the swim test” was code for “skinny teenagers with Aspergers.” Turns out it was code for “immigrant teenage girls who have never put their feet in the water before.”
*** WARNING. DISCUSSION OF TEENAGE BOYS AND PUBERTY ***
So, I’m sitting at the side of the pool watching Ian among the girls in bikinis, who can’t float on their backs, I’m freaking out for two reasons.
First, Ian is teenage awkwardness in swim trunks. His skin glows so white that it is almost blue. When the teacher had him practice stretching out his arms over his head for the proper crawl stroke, I could see each one of his ribs. There is an archipelago of zits over his shoulders. He’s a mess. Now, Ian has always been a beautiful kid, which has always meant that teachers and therapists gave him extra love and attention. His looks were always a major high card in his hand. We need to clean that kid up.
The second issue is that Ian’s boy part has been doing what teenage boy parts do — it springs up at all sorts of random times. Not being in possession of one of those parts, I’m not really well versed on how one controls the up and down motion of said part. I’ve heard tale of dead kittens and multiplication tables. Because Steve’s at work all the time, it has become my job to point out that the part isn’t where it should be and that it is not socially acceptable to walk into the swim club with one’s thing pointed in that direction. Typical kids, like Jonah, seem to figure all this out on their own, but kids who aren’t well connected with their bodies and have poor social skills need a lot of direct instruction on these matters.
So, I’m watching Ian surrounded by a gaggle of non-floating teenage girls in bikinis worrying that something really bad is going to happen. It didn’t. I actually think for Ian that the up and down motion has nothing to do with girls. It happens when he’s excited about other things, like music, numbers, or SpongeBob videos on YouTube.
Sometimes Ian can manage the typical world really well; other times there are bumps. He also had a rough time this week with managing the heavy drum sets in matching band and switching from the math program in Kumon to their reading program. But the bumps are small enough to mean that we have to keep muscling through the activity. But it also means that I have to be really on top of things.
I’m not entirely sure that I’m going to survive the next ten weeks.