Wednesday, June 29, 2011

How Are You Doing with That?

I left town for work, and that passed my Guilt-o-Meter. But I extended my trip for fun, and today I transition to the fun part. As I sit next to another conference attendee who is leaving today, someone I only met hours ago, I explain that I am staying on to enjoy myself a little with friends and mark some celebrations, and as I say it, there is no chance I can resist the urge to confess my guilt. I explain I have two kids, that they just started camp this week, that for one it's the first time at camp, that the other one has autism, and that I have guilt. She says, "And how are you doing with that?"

I answered with statements that all sounded like questions. "Like I said, I do feel guilty? But I know it's good? Because I've been a way for a few days before, but not this long? But it's okay? Because I got everything ready before I left? And I have been checking in? And it's all about baby steps? And we can't hover all the time? But, you know, it's... I... um, I feel guilty?"

And Katie says, "How are you doing with that?"

That's a good question. I guess this is how I'm doing with that.
How are you doing?

Friday, June 24, 2011

We're All Full Up Here

My son goes to public school R. We've had our share of issues there, but it's had good points, too. About a mile away is public school W. It has an outstanding rep for being the best public school for spectrum kids and simply outstanding overall in every way. The parents I know who have kids with autism there talk about it like it's the haven we've all been waiting to find. Of course, I put Rooster's name in for the "Open Enrollment" lottery. He was selected. Cheery acceptance letter, celebration. Then they found out he has autism and that the IEP we just did a week ago gives him additional services next year. (We were NOT keeping it a secret in any way.) Now school W will not take him. "We already have too many kids with autism. Our resource program is full of kids who are 'residents.'" No room for more of "those kids"...

Crazily, I am taking school law class right now, and last week was on spec ed law. I am nearly certain school W is breaking the law. And they are being so heartbreaking in the way they are doing it. It seems very wrong to me.

I can't decide if I should fight. What to do? For my son, I don't want to put him where he isn't wanted, he's too amazing and adorable for that, and I know that sooner or later he's probably going to get into the wonderful charter school that his sister is going to as a sib. I think he's going to be ok. But to not fight, doesn't that mean I fail ALL the kids with autism? Shouldn't I stand up for what is right? I don't mean to get too Ruby Bridges, but it feels like a civil rights issue, like the dogs have been unleashed on my family.

If anyone has advice of a legal nature or otherwise, I am open.

Saturday, June 4, 2011

All in the Family

So the other day I was talking about how the children of employees at a local prestigious university can get free tuition if they get accepted.

"Just think," I said, "Can you imagine if I could send Peaches to a school like that for free?"

Oh. I am so ashamed that I said that. Immediately I thought of an Archie Bunker episode I watched sometime before the age of ten that I have never forgotten. It was about feminism, and a character told this "riddle" about a boy who is with his dad when the boy gets very badly hurt. The dad rushes the boy to the hospital. Just as they take the boy into emergency surgery, the surgeon says, "Wait. I can't operate on this boy. He's my son." The riddle is, how can the boy be the son of the surgeon as well as the man who drove him to the hospital? It was the 70s, and no one could figure it out, because "those were the days" when no one's mind could readily come to the conclusion that a woman could be a surgeon. Even in elementary school, I got it, and I felt enraged. I hated the assumptions, the minimization of my gender. For one brief moment, I forgot that I stink at science and I forgot that I wanted to be Charles Kurault when I grew up, and instead I wanted to prove the disbelievers wrong, I wanted to be a great scientist.

So a friend heard my mistake, heard me make the offensive university remark, and she shot me a look. "Can you imagine sending BOTH of your children there for free?"

I felt enraged, at myself. I hated the assumptions I had made about my own boy, the minimization of kids who have autism. But ever since that moment, I have been thinking how much I WILL believe that my boy can do anything he wants, anything he sets his mind to, and that includes going to a highly competitive university when he grows up.

I DO believe. Sometimes the group think of assumptions clouds things for me for a while. Sometimes I confuse belief with hope. Belief is easier, hope is scarier. But for my little seven-year-old boy who is on the spectrum and has ADHD, and for kids like him, I'm not going to give up on either. If you see me make a ridiculous mistake or an offensive assumption again, please, shout at me.

Just say, "Stifle yourself!" And I'll stop being a meathead.

Wednesday, June 1, 2011

Lost and Found

The other day, I told my son he could not watch a movie, and he lost his temper.

First, he brayed like a donkey. I remembered in a flash that sound, and thought how long it has been since he did that, before he had the power of his impressive vocabulary.
Then, he stomped around. Reflexively, I looked to make sure all of us were out of reach, and then caught myself -- he no longer uses his hands to express frustration, just stamps his feet as he learned to do as a better alternative during our ABA sessions.
Then, he screamed, "I HATE my MOMMY. I HATE you, mommy." And the sting barely lasted a millisecond. I knew, with complete conviction, he would later apologize; in fact, within the half hour, he proclaimed his enormous love for me, topped with hugs and kisses.

I am so glad that my son lost his temper the other day.
It showed me how far we have come, how many tools he has, how our hard work has paid dividends. It showed him that he can get upset, and then he can turn things around. It reminded him that he doesn't have to get so upset, but that when he does lose it, the world will not end, and he can fix things himself.

Everyone loses their temper sometimes. Sometimes it's not what you lose, but what you eventually find.