Monday, October 22, 2012

Night of Too Many Tears

It's really weird watching a telethon when you know you might be one of its beneficiaries.

Special ed is wicked expensive, so I am thankful that Jon Stewart's Busboy Productions and Comedy Central present Night of Too Many Stars every couple of years to benefit organizations that provide appropriate educational services for kids on the spectrum.

When I was a kid I would watch the Jerry Lewis telethon. I'd see the images of kids struggling with muscular dystrophy, with their withered legs and twisted spines and cumbersome wheelchairs, and I'd just feel bad for them. These kids were totally Other to me: they were deformed, they needed help, they were charity cases. When I thought of Jerry's Kids, I thought of something along the lines of Urban Dictionary's current top definition of the phrase: "A retard who is behind some sort of window licking it whilst staring at you.Goodtimes."

I don't like to think of our family's life as a charity case, but really, we're not so different from Jerry's Kids. Our child has special needs that cost more than a typical child's, and there are warm-hearted people in the world who want to contribute to that (or maybe just want to buy the opportunity to pee with Seth Rogen).

But I'll tell you, what brought me to tears was that "Firework" duet with Katy Perry and Jodi DiPiazza, a little girl for whom autism education has paid off. (If you haven't seen it yet, get some tissues and click here.) I sobbed first from joy for all this child and her team have accomplished, then from anger and frustration that Ryan isn't yet in that same place.

But our work continues.

Have I mentioned that Ryan's going to perform in an adaptive production of The Nutcracker this winter? I'll write more about that soon, but after just two rehearsals I can already tell you this show won't be art, but it will be magical.

Tuesday, October 9, 2012

Expectations

Hello, Strangers.

I could easily say I have not written in a while because I've been busy with work. That statement would not be untrue.

More honestly, I have not forced myself to find time to write because I've been digging myself out of a very deep hole.

*****

A few weeks ago Ryan suddenly started having lots of accidents - there was a solid week when he wet the bed every night. I didn't know how to turn this situation around, so in addition to positive reinforcements (stickers! prizes!) for staying dry, I established a policy that if he wet the bed, he couldn't play on the computer before school. Ryan was miserable, I was sick of hearing him complain about the loss of computer privileges, and the bed was still wet every morning. This wasn't working for anyone.

I brought Ryan to the doctor to see if there was an underlying UTI causing the problem - there was not. The pediatrician said we were dealing with a behavioral response to something that Ryan was upset about. He told me to keep up the positive reinforcements but to change my attitude and let the punishment go.

And from that night on, we have not had a problem.

Somehow, Ryan was feeding on my anxiety, resulting in bedwetting, which fed my anxiety, which made him more upset, which led to more bedwetting. When I changed my expectations and relaxed, he was able to relax.

*****

I've been dealing with depression for the last twenty years, with varying degrees of success. The last year before we moved, I really felt like I had control of it - I actually felt good, not just good enough. But since the move this summer, things have turned ugly. Ugly enough that I've gone back into therapy for the first time in years - and I hate therapy.

Over the years I have seen many therapists, and they've all been basically the same person: pulling thoughtfully at their beards (even the women), holed up in dark, creepy offices full of Oriental rugs, all asking the same questions. Years ago I got to the point where I could predict what a therapist would ask me, so I decided to save myself the money and inconvenience and just ask myself those questions.

But I've found a local doctor who seems different - she doesn't even have a single Oriental rug! She is action-oriented, which I appreciate; instead of having me talk myself to death, she helps me build to-do lists that will remove some of the obstacles that have left me feeling stuck.

I'm making an effort to take better care of myself, and that starts with changing my expectations. When I started taking antidepressants twenty years ago, I thought I'd be on them for six months, tops. Since then, I've spent a lot of time feeling disappointed in myself that I still need them - as if controlling my depression without the use of medication would somehow indicate I was a better person. Moreover, I've spent a lot of time feeling disappointed that I have not been cured of depression - that even when I'm happy and engaged in my life, the sadness is always lurking in the background. That I can't remember a single moment in my adult life when I was 100% happy.

So, starting now, I am changing my expectations. I will stop expecting to be cured someday. I will accept that depression is something I have to learn to live with, because it's not going away. I will try not to beat myself up when there are moments I can't hold the sadness in. I will have good days and I will have less-good days.

Maybe a sticker chart would help me.