The Map-Maker's Mother

One thing we have plenty of up here on the mountain is time. Time to sleep late, time to nap, time to read, time to look at the light dance on the aspen leaves–but also time to think.

And what I’ve been thinking about is the social skills therapy we just tried for MapKid.

Social skills therapy is generally deemed critical for Aspie kids. These children don’t intuitively understand the rules and conventions that govern social interactions. They don’t “get” that having a conversation means taking turns talking and listening to what the other person has to say. They don’t know how to ask another child to play or respond to comments from adults. They certainly don’t know what to do if they are teased or bullied. They don’t know how to be friends.

This is obvious with MapKid–perhaps it is one of his most fully Aspergian traits. Conversation to MapKid is him holding forth on the features of his Garmin. Play is something he does alone or, at best, alongside another kid. Friendly remarks from adults–even those he knows well–can prompt growls, shouts, and attempts to climb under his chair.

The worst reaction can come from teasing by adults. At dinner at an Italian restaurant shortly before we left town, he was nearly hysterical when a waiter tried to be funny by pretending to misunderstand his order of, inevitably, chicken strips and french fries. “So you want spaghetti and meatballs?” the waiter said. “No, chicken and fries,” said MapKid, genuinely baffled that the guy didn’t understand him. “OK, chicken carbonara then,” said the waiter, flashing a grin at the adults. “No, chicken and fries!” said MapKid, now really frustrated. “Got it,” said the waiter, “Shrimp scampi for you.” “No!!!” MapKid erupted. “I said chicken and fries!”

The waiter looked shocked. Obviously this was a practiced shtick that he’d tried with numerous kids, usually to rousing success. MapKid was crawling out of his seat, shouting. I tried to physically control him down and my dad, embarrassed and furious, leaned across the table whispering dire threats. I looked over the head of my son to the waiter and said, “He really doesn’t understand.”

“Look, buddy,” I said to my son, “He’s going to bring you your chicken and fries. Right?” I fixed the waiter with a desperate look that begged don’t be cute. The poor waiter seemed to finally get it. “It’s OK,” he said. “I was just playing around. Here, I wrote it down. Chicken tenders and french fries, right?”

MapKid finally settled down and ate a generously buttered roll and the adults tried to regain their equilibrium.

So! This is why we need social skills training. That, and the future in which social interactions between his peers will become more complicated and the consequences of not “getting it” more dire.

I looked around for options starting last spring and found a handful within reasonable driving distance. (Apparently, if we lived in Plano, we couldn’t throw a stick without hitting some kind of social skills something or another, not to mention occupational therapy, speech therapy, play therapy, even horseback-riding therapy. But then we’d have to live in Plano, which has its own punishments.) The closest seemed, in many ways, ideal. They emphasized they did little classroom-type training–everything was generalized, in a play setting. So kids would play together under guidance and learn how to better interact.

It all seemed great on the website.

But the reality never quite lived up to the hype. When I showed up to meet the staff, they didn’t seem to remember I was coming, despite my appointment. When we arrived for his first day, they didn’t remember we were coming that day, either. There was great wandering about and trying to determine which classroom he should go to, all of which completely rattled MapKid, already highly on alert at this new endeavor.

I left that first day with my Mommy Radar humming. It’s not that I felt he was in danger–there were loads of adults running around and it seemed safe enough. But where was the structure? Where was the instruction? MapKid’s reports didn’t help. They had played board games, he told me; they played outside on the swingset. But then, I told myself, you can’t expect him to appreciate or understand that there’s a purpose behind the board games and that this is attempt to teach him about taking turns and good sportsmanship.

The problem was, I wasn’t convinced the board games were about taking turns and good sportsmanship. It looked to me a lot like day care for autistic kids.

Here’s the other thing–and I pray you read everything I say here, so you don’t get the wrong idea of what I mean: the other kids were much further along the autistic spectrum than MapKid.

They were beautiful kids, but kids with lots of challenges. This boy seemed to have great difficulty talking. He seemed to like me–at least, he always followed me around when I was there–but I could rarely get a word out of him, and when he did speak he was very hard to understand. That girl needed help with the most basic of tasks–we often arrived at lunchtime, when one of the staff was carefully feeding her lunch. That boy seemed to do a lot of stimming–repetitive motions like rocking–and he talked all the time in a monotone. These kids really needed help and therapy. MapKid looked like a Rhodes scholar next to them. My heart went out to these children.

It certainly wasn’t the case that I didn’t want my child around these other children–it was fantastic to show him how wide is the range of human behavior and human need. Not everyone is as spic and span and healthy and well-adjusted as might appear in his Sunday School classroom at our upper-middle-class church with its well-educated, expertly-socialized kiddos.

But I did feel like the staff weren’t going to have much time for my relatively high-functioning kid and his relatively minor problems. After all, if you can’t feed yourself, difficulty sustaining a conversation seems like a insubstantial issue.

Further, it was a little unsettling that the staff seemed to delighted to have MapKid in their midst, since he provided a good model for the other kids to emulate. But what model are you providing for him? I wanted to ask.

The kicker to all this was how expensive the darn program was. For three afternoons I week, I paid the equivalent of full-time day care at a top-notch facility for an infant. This while my freelance business is barely scraping along.

So I fretted and fumed and pondered to myself. I consulted my husband; I consulted Dr. Dave (the psychologist who helps me with MapKid). And one day I said, I’m done with this. It was a Friday, and MapKid was expected that afternoon. He’d been at Vacation Bible School every morning that week and was exhausted. I sent them an email that he was worn out and wouldn’t be coming. Then over the weekend I sent a second email that we were withdrawing.

I gave my reasons as purely financial. And, yes, the money is a real issue. But if I had been convinced of the program’s value, we would have figured out a way to pay for it. I had started investigating what our insurance would cover (or, to put it a better way, how to swing the system so that we could fit it into a cubbyhole that insurance would accept).

I immediately got a charming email from the program director offering to get us a grant from a local social services office. I had two responses: first, why didn’t you tell me about this marvelous grant a month ago? And second, oh, geesh, way to blow my excuse out of the water.

I went by the day before we left town to drop off my last check, and I saw the director. I told her we were going to be gone for nearly a month (er, creative license? Slight exaggeration?) and that I would let her know what we wanted to do when we got back. I smiled and shook hands and told them thank you and walked out the door.

It wasn’t until I got into the car that I realized I had forgotten to get the stuff we had taken up there–two plastic shoeboxes, a bag, bug spray, sunscreen, etc.

You know what, I thought, backing out of the driveway, they can just keep it. Consider it my donation to the organization. I’m done. I’m done convincing myself this is a good idea, I’m done suppressing my anxiety. I’m not saying it’s a bad place–it’s just not right for us.

And so we’re back where we started. I’ve been reading up on social skills curricula and found some good options that we could maybe do ourselves at home. I’m not convinced this will work–not only is MapKid usually unwilling to accept me in the role of a teacher, but he also needs to practice these skills on his peers, not me. I’ve pondered setting up my own system, where we practice a certain skill ourselves, and then invite one of his school or church friends to try it out. I can think of a handful of friends who would be willing to let their kids participate in this social experiment.

And I’ll also look at other options. I may end up having to drive to Arlington or Grapevine after all. You do what you have to do.

But I keep thinking of those children, the other children, the ones still there. Are they getting what they need? Their parents are paying for the same services, or more, if their kids are there all day every day. (Maybe they have one of these secret grants.) I feel an occassional twinge of guilt that I’m removing my excellent role model child from their vicinity, but after all, I have to do what’s right for my child, not theirs.

I hope that I’m wrong and that those kids are getting the help they need and that this is more than day care for autistic kids. They deserve more. They deserve better.