Monday, April 22, 2013

The next big thing

You know how wary I am of quackery. How angry I get about all the whack-jobs out there peddling their bizarre, untested therapies and "cures" to parents desperate to do something, anything, to help their children function more easily in the neurotypical world.

So it is with a great deal of skepticism and a after whole lot of reading that I have scheduled an appointment for Ryan to have his brain mapped.

Next week I will take Ryan to a doctor's office an hour away from home. They will put a bathing cap-type thing on his head, squirt gel through the holes, and hook electrodes up to his head. Then a nurse will perform a Quantitative Electroencephalograph (QEEG) while Ryan performs tasks like reading and counting.

Based on the resulting brain map, he will then start a lengthy regimen of neurofeedback therapy. The premise is that the brains of autistic people have atypical electrical activity (the brain map will "reveal areas of cortical dysregulation occurring on the right hemisphere"), and that the brain can be trained to rewire itself, resulting in greater "social competence." Ryan will play computer games, and the bathing cap thingy will signal when his brain is firing strangely, and then the game will stop until he brain is typical again. Magical scientific stuff happens, and after a few months the brain has been permanently reprogrammed.

On face this sounds like it could easily be bullshit. So I read up, asked around, and various people I trust assured me that neurofeedback therapy is for real. I met with the doctor, and he seemed legit.

I want to believe this will help Ryan interact with other kids in more expected ways. I really do. But it's a significant investment of time and money, and I don't want to be ripped off or made a fool of, or waste time that could be better spent at a playground.

Because I'm kind of desperate to do something.

Tuesday, April 16, 2013

Hi There Yet

Ryan is even worse at making friends than I am.

But he tries.

He really tries.

We took a walk around our quintessentially suburban neighborhood. A girl on a bike pedaled toward us, and Ryan shouted, "HI THERE YET!" The girl did not stop, but Ryan continued trying to greet her, over and over.

Then we came upon a house where four boys around Ryan's age were shooting baskets in the driveway. Ryan ran ahead of me and stopped dead on their lawn, silently staring at them. The boys shot him an uneasy glance. I approached and said, "Hi. This is Ryan." Remarkably, Ryan said, in an almost perfectly typical way, "Can I play with you?"

The boys stared at him in the same peculiarly cold way all the kids around here stare at Ryan. I held my breath.

"Do you have a basketball?" they asked him. Each boy had his own ball. There was one extra on the grass.

Ryan turned to me. "Do we have a ball at the new house?" No, sorry, we don't have a basketball. I suggested maybe they could share. One boy made it clear that the extra ball was not his. Nobody passed Ryan a ball.

I encouraged Ryan to take a step toward the boys, but he decided it was time for us to "get to the next speed bump," so we moved on.

He seemed content not playing with those boys, but I felt wounded on his behalf. I felt the sting of rejection that was meant for Ryan but which he is, so far, blessedly unable to detect. I pushed down that sense of rejection I felt throughout my childhood - my desire for the mean girls to want to be my friends; the sting of kids asking me to watch their backpacks during recess so they could go play (I really thought that doing them that favor was going to increase the likelihood of them inviting me to play with them the next time).

As we kept walking, a couple of adults gave a brief friendly-enough response to his enthusiastic "Hi there yet" and then returned to their conversation about garden care.

Ryan said Hi There Yet to a couple of dog walkers and some older boys playing basketball in their driveway, and then we went home.

I envy his aloofness to the neighbors' reactions to him. He has made overtures toward many kids nearby, of all ages, and they have all been met with blank stares and cold shoulders. Back in Mount Verminon, Ryan had no problem getting the other kids in our building to include him in their games. Part of the difference may be that we all shared a common back yard - there was no sense of "my space" and "your space" to overcome. Here, the balance of power automatically tips toward whomever lives at the house where the kids are playing.

Or they might just be jerks, like the kids who made my childhood so lonely.

Fortunately, Ryan seems better equipped to handle this sort of rejection than I was.

Or than I am.

Friday, April 12, 2013

Hi Chrissy!

"Hi Chrissy!"

This afternoon Ryan had a long phone conversation with Chrissy, his old one-on-one teacher from Mount Verminon. This was the first time they had spoken since last June.

Before we moved last summer, Chrissy had assured me that she wouldn't drop off the face of the earth, but, you know, life happened, and somehow Ryan never fit into her schedule. Chrissy had been a very important person in Ryan's life for many years, and our move wound up cutting her completely out of the picture. This made me angrier than I'd like to admit - especially when Ryan started asking about her.


Asking about Mount Verminon. Asking to move back to The Old House, because in his mind that's where Chrissy was. I had all but begged her to come visit, or to let us visit her. I offered to match the money she would have made from her second job so she could spend some time with the kid. At one point I flat out told her that she was on my shit list; she didn't seem terribly impressed.  I don't take kindly to anyone who makes my kid cry.

Ryan missed her. I missed her. And I missed the effect she had always had on Ryan. The weird behavioral issues we've seen around here lately, well, I don't think our toilet brush would have wound up in my desk drawer if Chrissy had been around.

And beyond being a stabilizing force in Ryan's life, she had been a huge part of my own personal support system. She was my parenting coach, my crisis counselor, my emergency babysitter, my sounding board, my friend. And then we moved, and I felt completely alone, figuring out how to handle Ryan's transition to his new home/school/environment, learning about the Connecticut special ed system, not knowing anyone or how to meet families like ours.

So Chrissy and I scheduled a time when she and Ryan could talk on the phone. I wrote "Call Chrissy" on Ryan's daily list of steps (having a list to look at helps him visualize his day and eases transitions). I put my cell phone on speaker and dialed Chrissy, praying she wouldn't flake on us.

As soon as she answered, Ryan's face lit up.

Normally Ryan has little use for phone calls - he'll get through one or two exchanges with his grandmother before wandering away from the phone - but for this call, he was fully engaged. I wouldn't describe what happened as a traditional conversation, but Ryan and Chrissy sang songs together and interacted for a solid 10 minutes.

And since traditionally Chrissy Time was a one-on-one experience, Ryan insisted on being alone on the phone with Chrissy. He kicked me out of the room, shut the door on me, then had his own special time with his old friend. I tried coming back into the room, but he quickly brought the phone with him to his bedroom and told me to go away. And when I suggested maybe we should let Chrissy go because the whole "conversation" was getting too weird, he said, "Can I talk to you more on the phone, Chrissy?" So, you know, there was no saying No to that.

I won't reveal the finer details of their very private conversation, but Ryan seemed completely content, and Chrissy said it was a good way to end a long week.

I felt Ryan's relief.

And if things work out, they might even have an in-person play date next week.

Monday, April 1, 2013

It's April again...

It's April, which for many people means Autism Awareness Month, and for many other people means Autism Acceptance Month, and for me means another 30 days of hopping on and off my soapbox to try to make the world a little easier for my kid to navigate.

Let's kick off the month with this video made by an autistic self-advocate named Amanda Baggs. In it she is seen stimming for three minutes, then she types out an English translation. It is a film about communication, about different ways of interacting with one's environment, about what's going on inside the head of a person many neurotypical folks would dismiss.

There's a vibrant mind behind the stims - being expressed through the stims. Try to understand her language, as she has learned to write in ours.