Wednesday, August 11, 2010

Noah the Rockstar

I'm in awe of how incredibly well Noah has been handling all of this new seizure stuff that's been thrown in his lap. That kid is a rockstar.

He wasn't thrilled about adding yet another medical professional onto his already-full dance card of doctors to visit. For days before the first appointment with the neurologist, he kept telling me, "But I don't need a neur . . . what? A neurologist. I don't need a neurologist." As we sat in the waiting room, that refrain returned. You know, if I was a nine-year-old kid, I wouldn't want a neurologist, either.

But then he got into the exam room, and I was in awe. I just sat back quietly and watched during the first half of the appointment as Noah, in such a mature way, answered the doctor's questions about his health and sleep patterns. It was only when she got to tough questions about his birth complications and autism that the doctor had to turn to me for answers. I was so proud of my boy for taking ownership of his own healthcare, being his own advocate.

The most amazing part was when she examined Noah. He HATES having doctors examine him. I mean, he's got all these sensory issues and doctors come along and touch his body and shine lights in his eyes and jam sticks in his mouth. But Noah was incredible. He sat, he listened . . . and the only time he had any issues was when the doctor had to shine a light in his eyes. I was so proud.

Of course, it was the same thing that I heard with Nick--the doctor thought Noah was probably fine, but we'd do an EEG just to make sure.

Noah was a rockstar with the EEG. He had so much fun staying up late, and he was nothing short of incredible during the procedure, letting the tech place all of those electrodes all over his head even though he hates people touching his head. Simply amazing.

And then, of course, I got the same call that I'd gotten with Nick--the "wow, mom, you were right about the seizures!" call.

I sat down with Noah on his bedroom floor and explained to him about the excess electrical activity in his brain and the effect it has on him. I described the precautions we'd have to take now, explained he'd have to take medicine now, talked about the benefits that the medicine will have.

I expected him to get frustrated or upset--he hates taking medicine--but he didn't. He just calmly accepted it all with maturity and grace.

Noah has had to carry so much more than most kids would ever have to. Not only does he have his own medical issues to contend with, but he also has a severely autistic brother that often challenges his patience and understanding. He has his moments when it's all a little too much for him, but I'm surprised at how rare those moments are. He carries more weight that most adults do, and carries it better than most adults would.

That's what makes him a rockstar.

Monday, August 9, 2010

The Parent Volunteer

"No parent has ever offered to do that before," Beh's shocked yet excited teacher said.

His new teacher had called last week, just one of the things that shows how wonderful she is--she took the time to call in advance of school starting to touch base with her students' parents.

We had a really wonderful conversation, one that lasted about twenty minutes, and toward the end I offered to volunteer in the class on Tuesdays and Thursdays.

She was ecstatic and welcomed having a parent in the room . . . but was shocked because no parent had ever offered to volunteer in her class before.

She teaches at the school that, while it is the smallest in the district, also happens to have the highest number of parent volunteer hours in the district. The parents at the school are active and every time I've been there to volunteer for something in my older son's class, I've had to wait in line to sign in because there were a lot of other parent volunteers signing in ahead of me.

What makes Beh's energetic, student-centered, call-parents-just-to-touch-base teacher's class different then? Why at a school that thrives on parent volunteers are there no parents volunteering to come in to help run centers or read stories or make photocopies?

The only difference is that she teaches the cross-categorical class for students with special needs.

I've been thinking about that phone call all weekend, and the more I do, the more bothered I am.

For far too long in our country, we've Othered children with special needs, sending them off to the classroom at the end of the hallway and forgetting that they were there. I look back on my own educational experiences, and the only time I was even conscious of a "special ed" room existing was when I was in high school and my Halloween costume was voted the best in my first hour class; I, along with the winners from the other first hour classes, went to the special ed room, which was empty of students during first hour, for the final round of the costume contest (and lost). The room was right next to the bathroom at the end of the English hall, and I'd used that bathroom a hundred times during my years at the school but never once thought anything about who was in that room.

I look back now as a mother and I want to cry, thinking about the sons and daughters who lived a life of isolation in that room, so isolated that no one even knew they were there.

I guess that maternal response is what makes me so troubled by the fact that in Beh's teacher's long career, not a single parent would volunteer to help in her class. Why wouldn't they? They'd volunteer to help in their typical children's kindergarten classes, wouldn't they? Why would a parent of a child with special needs treat that child's education any differently?

We've heard it and lived it so many times--you are your child's best advocate. As parents of children with special needs we become medical experts and legal experts. We advocate fiercely for our children in IEP meetings to demand that the school do all it should for our children. But why on earth would the school take our children's education seriously if we ourselves don't? What's to stop them from marginalizing our kids if we ourselves treat them as unworthy of our time?

I will be there this year. I will run errands to the office and clean whiteboards and grade papers and sing songs and read stories. I will be there. And I hope to God that other parents join me.