Summers With Disabilities

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.

 

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13 thoughts on “Summers With Disabilities

  1. Thinking about being caught in a blizzard is the best trick. However, in all seriousness, I have no advice for neuroatypical boys.

  2. It’s been a long time since I was a teen, but I think a jock strap under the shorts ought to help keep it from showing. Good luck!

  3. E will be 15 this weekend. Let’s just say I’m thanking my husband for teaching him how to do his own laundry back when he was 10.

    Our summer schedule is as follows:
    *Summer wind ensemble practice once a week plus 4 concerts over about 5 weeks.
    *Marching band camp for a week in August
    *Reading one hour a day with me. IOW, we sit together in the living room and he reads something (Hitchhiker’s Guide to the Galaxy is his current choice) and I read something (I’m reading Matt Hills’ Fan Cultures, fwiw). I read 15-20 pages of dense academic prose in an hour. E reads 10-15 pages of HGTTG in an hour. And we wondered why he never finished a book in 9th grade English.
    *The rest of the time he gets to play video games and listen to music (he prefers prog rock; lately it’s pre-Phil Collins Genesis). His social life is also as good as it’s ever been, and he is invited out about once a week to hang out with friends and/or go do something, like a baseball game.

  4. I have planned nothing for my 13yo. I feel a little bit guilty — some camps filled up before I got my act together. I am considering seeing what happens if I just do nothing. He has access to a pool, to which he can get on his own and Grandparents who find him entertaining. I suspect there will be a lot of internet surfing, with no direction. He’ll have to do chores, it not that many. Is that OK? Or do I have guide him to more constructive activities? Or maybe provide some scaffolding. I still haven’t decided.

    1. He spent half the afternoon sorting his clothes and then copied the alphabet in his grandparents native script, so one day down.

  5. We actually declined half-day ESY for our first grader. He’d only been out of school for 2 weeks and was still pretty burnt out from the school year. I wasn’t impressed with the plan to “maintain, not learn anything new,” or convinced he needs to spend 4 of his 9 summer weeks back in a classroom. I’m skeptical of the “need” to entertain kids, even special needs kids, with adult-directed activities all summer. One of the main benefits of being an at-home parent is the freedom to have a “classic childhood summer” — we can stay up late, sleep in, read big stacks of books, spend some afternoons at the pool and days at museums, take a few road trips, and learn to work through boredom (which supposedly helps kids develop executive function). We’ll do swimming lessons, OT, and VBS. We also have daily chores, the library reading program, a bunch of handwriting and math workbooks, lots of art supplies, and strict limits on screen time. Our area has fun-looking STEM and sports camps, but unless you’re working and need the childcare, I’m unconvinced.

    1. A word of caution–we discovered with our oldest that we’d underprogrammed her the summer between kindergarten and 1st grade.

      She finished up kindergarten very well, but then had a huge social regression over the summer (which was very low key except for maybe some swimming). I THOUGHT we’d had a great summer, up until things started blowing up in 1st grade with social regression and school issues. (Of course, the transition to 1st grade is tough under any circumstances.)

      So for the next 9 years, we made sure she had something scheduled at least part of the week for at least half the weeks of summer. This summer (the one before 10th grade) has been much less scheduled, but we still had a week of travel, two weeks of gifted camp (she missed one because of illness), weekly music lesson, (sporadic) music practice, help with Baby T (age 4), official paid babysitting (for us and a friend’s family) and some home soldering instruction from dad. If all goes well, we may also have a one-week music camp and a private swim lesson or two. We also have a water park season pass.

      But this is substantially less than in previous summers and while it sounds like a lot, there’s been SO MUCH screen time. My main excuse is that Baby T is still not potty trained, so keeping up a good attitude about that uses up most of my available battery power, as pre-k starts in about six weeks, and it looks like it may be starting without us…

      Baby T is only doing a two-week swim class this summer plus 6 weeks of a weekly parents’ day out program. I suspect we’ll put her in more stuff next summer.

  6. Related:

    http://www.theonion.com/article/lonely-elementary-schooler-already-crushing-librar-56342

    “Having blown through nearly half the titles on the 20-book list in less than two weeks, chronically lonely fourth-grader Logan Parata is currently crushing the Santa Clara County Library’s summer reading program, sources confirmed Wednesday.

    “The bespectacled 9-year-old, who staff members say is a regular fixture at the library despite its greatly reduced seasonal traffic, is reportedly dropped off at the entrance of the building each morning at 9:50—10 minutes before the facility opens—and spends almost the entire remainder of the day alone at his favorite table quietly tearing his way through each of the recommended books for his age level.”

    1. I loved summer reading when I was a kid. My mom had to bribe me to go outside. I wasn’t lonely, just happy to read and read and read. The other thing wrong with the story is that no true reader would ever stick to the “recommended books for his age level.”

      1. af said:

        “The other thing wrong with the story is that no true reader would ever stick to the “recommended books for his age level.””

        Good catch.

  7. I just realized this morning that older kiddo is volunteering at a camp that might add 2 hours of driving to my day. Even when the kids think about the driving, they don’t think about the return journey for us. Aaargh.

    When she signed up, we’d thought she’d be driving herself. But busy schedules have meant she hasn’t taken her test yet. And there’s the fact that I freak out when I think of her driving alone (which is all on me).

    I was reminding myself this morning that agreeing to do something and then being really cranky about it is not a good parenting plan.

  8. bj said:

    “I just realized this morning that older kiddo is volunteering at a camp that might add 2 hours of driving to my day. Even when the kids think about the driving, they don’t think about the return journey for us. Aaargh.”

    Yuck!

    “I was reminding myself this morning that agreeing to do something and then being really cranky about it is not a good parenting plan.”

    Yeah.

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