Tuesday, June 25, 2013

Not yet

I thought I'd be used to it by now.

We've been in our new house almost a full year. Everyone told me a new town takes getting used to. They assured me it takes a while to make friends. They agreed that suburban life is very different from urban life, but that I'd learn to like it.

It hasn't happened yet.

I want to be happy here. I recognize that it's pretty and quiet and that we have tons of room. I acknowledge the schools are better, that we're closer to Stu's job, that there are more opportunities for Ryan here.

There are exactly two things I like about our new home: we have a garden, and I can get to the beach in 10 minutes.

I feel isolated. My house is literally four times closer to a cow than to the nearest store. I hate driving everywhere. I have to drive 40 minutes each way to get to practice, an hour each way three times a week to take Ryan to therapy, and 15 minutes each way to the supermarket. I miss walking three blocks to the bank. Just taking a walk to nowhere feels weird; lots of streets don't even have sidewalks.

I've tried reaching out to my neighbors, and I've found one lady who's pleasant enough to talk to while she's walking her dogs, but no one I'd like to be friends with, and no kids who are willing to play with Ryan. The girls on my team are perfectly nice, but I don't feel like I've made any close friends yet.

I miss running into neighbors on the elevator. I miss the gaggle of kids that would teach Ryan games in our back yard. I miss New Yorkers - people who don't drown you in fake smiles, who don't wave their gun permits around, who have been known to leave the town in which they were born. I miss other members of the Tribe.

You know you're a New Yorker when you're not in New York.




Friday, June 14, 2013

Neurofeedback Therapy Update #1

Many of you have asked for updates on our adventure in neurofeedback therapy. Nurse Brainley says we shouldn't expect to see any behavioral changes for like five weeks, so for now I'll just tell you about the process.

We drive.

A lot.

I pick Ryan up at school at 3:30 and we drive for a solid hour to the clinic. At 4:30 Ryan scampers right in to the waiting room - on our second visit he asked if we could have a sleepover there. Then we walk back to Nurse Brainley's office, where there is a padded office chair and a mismatched ottoman in front of a large computer monitor. Ryan wiggles and laughs as we try to clean his earlobes with an alcohol wipe. He fights putting an electrode clip on his right earlobe, but accepts the left clip without a struggle. He asks if he's going to get a shock; we assure him he's not. Then the nurse glues an electrode to the top of his head, exactly seven inches up from the bridge of his nose. She sticks a cotton ball on top of the electrode and calls it a cotton ball hat.

Cotton ball hat. This is not Ryan. The clips eventually go on the earlobes.
Then Ryan is instructed to sit quietly and focus on the screen. The screen has a video game-like graphic - the first time we went there was a race car, the next time there was a spaceship. When he focuses on the car (or on a spot on the wall or really anything) the car zooms around the track. When his attention shifts or his body moves, the car veers off to the right or slows down. This exercise is supposed to train his brain to focus for longer periods.

He plays 5 or 6 rounds of this "game," Nurse Brainley cleans the goo off his hair, and then at 5pm we get back in the car for another hour.

We're supposed to do this three times a week.

For the next three months.

We've only had two sessions so far, and already I'm annoyed.

But if this therapy pays off, the drive will have been totally worthwhile.

Tuesday, June 11, 2013

Aware


On my way to Saturday's game, I hadn't even made it out of my neighborhood when I started getting angry text messages from Stu: "He's already having a fit and pissing me off." "I HATE this."

Stu has had it up to here with my derby schedule. The events that clutter our calendar. The practices and bouts that keep me away from home at bedtime, when Ryan is most challenging to keep under control.

I apologized again, thanked him again, told him to bring Ryan to the sports center and let him run around on the indoor soccer field before the game.

Ryan happily shadows my team's warm-ups, trying to follow along with our routine. My teammates are all wearing autism awareness patches, courtesy of a new sponsor. I note the peculiarly autistic way Ryan enjoys our exercises, stimming on us running from one edge of his peripheral vision to the other.

Stu says Ryan's a totally different kid when I'm not around. I'm sure he is, but I've obviously never seen that kid. He looks pretty content to me, except for the occasional freak-out over a bag of sand that's too heavy for him to move; I don't know why he thinks he needs to move the bag of sand, but I've stopped expecting answers to those sorts of questions.

I trace the edge of the patch on my jersey and shift my eyes from Ryan, walking the edge of the field between the wall and a soccer goal, to the typical kids playing together in the middle of the turf, and back again. Someday this sight won't hurt, I think to myself; it already hurts so much less than it used to.

The game begins. I look into the crowd and see Stu and Ryan in the bleachers, eating ice cream. I see my friend Niki and her daughters sitting near them. Everything looks under control. I wave as I skate past during skater introductions.

At halftime Stu gives me the death glare. It seems Evil Ryan has emerged in my absence and given Stu a hard time. He keeps muttering, "I'm done. I'm done." He says he wants to leave without Ryan and go home. I tell him to take a walk and just let Ryan play with Niki's kids for a while. He heads for the door and I think I hear him say something about going home.

I tell Niki she's in charge and I skate back to my bench.

I fiddle with the patch on my jersey and try to get my head back in the game. I avoid saying too much to my teammates. Throughout the second half I keep looking around the crowd for Ryan, and to see if Stu has returned. As we take our consolation lap around the track (in derby, even the losers get high-5s from the crowd), I see no sign of Stu, Niki, or any of the kids. I wonder if our marriage has reached the point where I have to choose between Stu and roller derby.

Turns out they were in the building. All of them. And back at our house all 3 kids were bouncing on the couch past 11pm.

And Stu and I have not spoken about it since.

But I am Aware.This is part of our Autism. I skate to escape, but the further I get from responsibility, the more it piles on Stu.

Time to find a good babysitter.