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.”


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.


Suburban Elegy

Yesterday afternoon was my first block of free time in weeks, so I brushed off the dust of Hillbilly Elegy, which has been sitting in my pile of books-that-should-be-read for months. I read it in one big gulp; it was that good. As soon as Jonah wakes up, I’m going to demand that he reads it.

The memoir is about one kid who managed to escape the culture of poverty thanks to luck, the Marines, and his Mamaw, who saved him from his own bad decisions and his mom’s bad decisions. He talks about the positive aspects of the Appalachian, Scot-Irish culture – loyal, family oriented – as well as the bat-shit crazy parts of the lifestyle, which has resulted in generations of poverty and misery.

I read the book from the comfort of our Crate and Barrel armchair that swivels, so I can put my feet up on the large picture window. I glanced up from the book from time to time to watch the women speed walking in their $100 running pants and the teenagers zooming by in their graduation-gift Cameros. It’s a world apart from the J.D. Vance’s Middletown, Ohio.

Yet, it’s not.

People fuck up here, too. In between the speed walking and the calorie counting on iPhone apps, there is a whole lot of wine drinking, which is somehow a more socially acceptable form of addiction than weed. There are teenagers who screw up in exactly the same ways as teenagers in every other community across the country. There are dubious debts, like second mortgages to pay for private colleges that aren’t worth the $300,000 price tag.

And while our community doesn’t have the divorce rates and rotating boyfriends that plague other parts of the country, we’re the only family that I know that actually eats dinner together every night. Kids spend long periods of time by themselves or with nannies that have no authority to reel them in. Kids work very hard at times, especially in the highly regimented sports programs and tutoring worlds, but other times, they are supremely lazy. They have no expectations for home chores or sibling babysitting. Even though they all go to college, the parents and consultants micomanage the process for them.

There have been lots of recent studies (too lazy to find the link right now) that show that the wealthier families are spending more on educational programs for their children than ever before. And that’s all true. But in between those scheduled activities, there is a parenting vacuum. Parents set up the activities and even drive them from place to place, but don’t talk with their kids or guide them or yell at them when they screw up.

My parents, who were the first generation college attenders and who came from very rough family lives themselves, are appauled at the bad habits that they see around them in their own UMC town and in ours. Entitlement is its own evil culture. Wealth can protect people from bad habits for a short time, but it’s not fool proof.

Summer is Here

Hi, y’all. We’re slowly shifting to the summer schedule, which turns out to be more frenetic than the regular schedule. I overscheduled activities for Ian, and Jonah has a work schedule that is throwing a major wrench into our two-car household. We are not ready to expand our car fleet to accommodate Jonah’s 5-dollar per hour bus boy schedule.

And $5 per hour? That’s what Jonah makes. Restaurants are allowed to pay servers less than minimum wage because they supposedly get tips. Jonah’s gets handouts from the bartenders and waitresses, so he’ll come home with $15 per night in tips. His first check for 35 hours of work was for $100. Meh.

Alright, I need to get my brain together here and get back to blogging/work. I’m going to go light this morning and just share some links.

This Iraqi refugee is doing amazing work with miniatures.

Upper middle class Americans are 21st Century Victorians.

New England style prefab houses are totally cute.

American workplaces are slowly realizing the potential of people on the autism spectrum and are making accommodations.

Professors on the chopping block. I’m going to come back to this one.


Massively Burnt

I am massively burnt out. Yesterday, I cleared my plate of all work obligations to get my head back together. I wasn’t totally happy with those projects anyway, and they had begun to hang around my neck like a week-old sausage necklace.

So, this morning, for like the first time in months and months, I don’t have any responsibility. The family chores are done, and there are no interviews to schedule. What ever shall I do? Nada.

I’m answering some e-mail, finishing this blog post, and then going out for a long walk. I’m enjoying the moment. Because things will get awful again soon. I couldn’t find a proper camp for Ian this year, so I signed him up for half a dozen short activities – swim lessons, Kumon, music, summer school, computing classes, horseback riding lessons. The last two weeks of August will be band camp at his school; if my mom can’t help out, I’ll have to drive four hours a day for that one.

Driving has also gotten tricky around here, because we only have two cars, and Jonah is using Steve’s commuter car to get to his summer job. So, I need to pick up Steve at the train station at 6:30 every day.  Most of the time, I’m cool with it, but yesterday, I kinda flipped out on him, because I was juggling a whole lot of parenting chores that day.  I may or may not have ranted for a full forty minutes about the goddamn Pony Power medical release form.

Jonah’s new job as a bus boy at a local restaurant is working out. He loves being the young guy who gossips about soccer with the bartender and listens to the waitresses bitch about each other. 

Those half-finished French fries and barely touched steak that got sent back to the kitchen? Yeah. Jonah ate it. He feels no shame.

And the next time that you rely on wikipedia for information, I want you to keep in the mind that Ian has apparently become a wikipedia editor and is inputting information. He won’t admit which pages he’s changed, because he thinks he’s in trouble. Steve figured it out what was going on, after examining the search history on his internet browser.

I’m really glad that we’re in summer-mode. Even with the driving problems, I need something new. After I go for my walk, I’m going to throw open the windows, blast some music, and clean the house. I love changes.

Back Again

Hello, all. Thanks for your patience. I had to take a blog and writing hiatus for a few weeks, because of life. There have been many milestones for my family — a prom, an anniversary, a concert, a prom — and I had to make the milestones the priority.

I’m still not entirely done. We successfully got Ian and Steve on the bus at 5:30 am for an eighth grade class trip to DC. Tomorrow, Jonah turns 18. He started his first job busing tables at a restaurant last night. On Friday, we go back to his college to register for classes. Then I have to get Jonah some black pants and shoes for his high school graduation. There’s the graduation ceremony, a family bbq, and college orientation coming up, too.

It’s all good stuff, but getting everyone at the right place at the right time with the right clothes requires a lot of organization and lists. I’ll post pictures when I get the time to download the camera.

This morning, I’m having some panic attacks. I’m neurotic and that’s what I do. I’m desperately worried about life after these milestones. What’s going to happen when Jonah goes to college? School has structured our lives in the suburbs for thirteen years. His sporting events and school functions have filled our calendar and formed our social groups. What happens when that structure is gone?

Yes, we still have Ian here, but it’s not the same. He’s a special ed kid who goes to a public school about thirty minutes away. Special ed kids never get access to those same events, particularly when their schools are far away. He does do a lot of activities, because his brain never shuts down, and I need to keep him busy as much as I can. But his activities usually involve me waiting in a waiting room or in the parking lot. They are not social events. He’ll be in the marching band next year, so I suppose we’ll have that.

So, what will life be like in the suburbs without a typical kid to participate in community events? Will it be boring and lonely?

A number of Jonah’s friends’ families are moving a couple of days after graduation. Nobody wants to pay New Jersey taxes for a week longer than they must. One family is moving to Missouri. Another to Michigan. Once the kids are done with their education, there is no reason to stay.

We aren’t moving for a while, at least while Ian is still in school. My extended family is all here within 20 minutes of our home. Steve’s job is in the city. In fact, in the midst of all this, I’m also planning a kitchen renovation for this fall. So, I’ll suppose I’ll fill our social gaps with more work and volunteer activities. I’m sure it will be fine, but the suburbs are a weird place, and it’s hard to know whether or not we’ll still feel at home here in a few months.

Well, I’ll do some proper blogging this week. There’s the Comey testimony tomorrow. Yay! I know people who are having viewing parties at their homes. We’ll just hang out here and have fun.

Where Does the Money Come From?

Last weekend, Steve and I celebrated our 20th anniversary. We renewed our vows at the local church without telling my loud, large extended family. It was just us and the boys who did the readings. We eloped.

The vow renewal was all thought up and arranged by my sweetie-pie husband. It was a romantic gesture that more than makes up for the way that he proposed. He handed me the ring — “here ya go” — while we were eating some take-out Chinese food on the floor of my apartment. (It was a studio apartment. The living room coffee table was also the kitchen table.)

After lunch with the boys, we went into the city on our own. We stayed at an adorable little hotel near the High Line park and splurged on drinks in trendy bars and a fine meal in a fancy restaurant.

At one point, we looking around at the other people in the bar and restaurant. Our fellow drinkers and diners were 20-somethings. And they had nicer shoes than I did.

When I was their age, I was eating Chinese food on the floor and drinking in dive bars. My first job out of college paid $15,500 per year. So, how can they afford the fancy places? Are they getting paid a lot? Are their folks helping out? Do they have a lot fewer expenses, because they don’t have kids yet? Is it all going on credit cards?

I don’t usually join the “Milennials Are Annoying” conversations, because who wants to be the grouchy old dude? Also, for every high-spending Milennial, there are probably a hundred who are living within their means. But I am genuinely confused about even that small segment that I saw this weekend.