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The Power of Teachers

I have this ritual at the end of a school year. I go through all the school stuff Noah's saved up throughout the year and send some to the recycle bin, and save some for a special box that has a slot for keepsakes from each school year.

I'm running a bit behind (the new school year is two weeks away), but I got to his second-grade things this week. And I found whale mobiles and dinosaur paintings and manduka lifecycles. I also found a pattern of descent.

Noah is smarter than any of you. Don't feel bad; he's smarter than me, too.

He's simply brilliant.

He also happens to have disabilities.

In first grade, Noah had an awesome teacher. She knew how to support him; she knew how to work with his abilities to help him thrive. And she genuinely cared about him.

But in second grade, Noah had a different sort of teacher. The kind that wouldn't let him use the bathroom when he asked, leaving him to sit half the day in urine-soaked clothes. Yeah, I don't have enough words to say about her . . . so I won't.

I looked through Noah's work of a year and saw a pattern. He started out with stellar grades. 100%. 98%. 107%. As the year went on, though, those scores dropped. 65% became far more common than 107%.

She'd defeated him.

I look at the advent of the new school year with trepidation. What kind of teacher will Noah draw? Will we be lucky and get someone like his first-grade teacher, or will he be cursed with someone like his second grade teacher? And if he does get someone like his second-grade teacher again, will he ever be able to recover from that devastation?

Writing a love letter in a coffee shop

I’d claimed the perfect table at Starbucks, right next to a column that both blocked me from visual distractions and gave me access to that most prized of things—an outlet. I plugged my computer in, swallowed some caffeine, and set to work on my soul-sucking IRB paperwork.

That’s when he came over, a man with glasses and thinning brown hair. He pulled two chairs up to my table: one to set his laptop bag on, the other to set himself on.

WTF.

I looked around and the tables were pretty full. I think they all were occupied save two, and those were cluttered with magazines and newspapers. Okay, I supposed that I could share my table. But, dude, he could have at least asked before claiming the space.

When he ambled around, trying to find a place to plug in his i-pod, I noticed there was something not so typical about him. He seemed perplexed when he finally spotted the outlet, only to find that I and a seventy-something year old man in Nikes had swiped it already. So he ambled back to our table and sat down.

“I’ve never connected to the Internet from here before,” he said after taking a sip of his Strawberries and Creme Frappucino.

“Oh, you haven’t?” I said as an acknowledgement. And I turned back to my soul-sucking IRB paperwork. I had to get it done, you know. It’s why I left the house after all . . . and I’d told myself I wouldn’t go home until the soul-sucking paperwork was done.

But then he started asking me spelling questions. The first word was “tournament.” I whipped out the spelling because that’s what English teachers are supposed to do—it’s the parlor trick the rest of the world expects of us. Except, I got two letters in and he stopped me. I was going too fast.

So I slowed down. One very slow letter at a time. And I realized that there really was something not so typical about him.

I had the soul-sucking IRB paperwork to complete. I needed to get it done. But . . .

I got pulled into a conversation with Matt. He was writing a letter to his girlfriend, Tanya, who lives in Yuma. She is the first girlfriend he’s ever had and he just met her at Camp Tatiyee (it was the first time she’d ever gone). There is an age difference—he graduated from high school in 1999 and she graduated in 2003—but he didn’t care that she was an older woman. Yes, I know those numbers don’t make sense, but since she is taller than he is he knows she's older. What matters is that he was twenty-eight and in love for the first time.

He asked me for help composing his letter, and this is what he had at the end:

Dear Tanya I wish u were here in Tucson Arizona. I’m gonna see u at the basketball tournament in Mesa. Can’t wait to see u again at the camp next year. I had fun with u at the dance and the go-carts and the fishing. I love u. I want to see High School Musical and Twilight with u. Will u marry me.

I’ve spent over a decade tutoring writers, helping them find a way to convey their messages to their audiences. But sitting with Matt in Starbucks, helping him write a letter to the woman he loves, was the most rewarding experience I’ve ever had with a writer.

Yeah, f*** the IRB paperwork.

Kitty White

I spend most of my moments keenly aware of how lucky we are. I’m reminded time and time again that things could be a lot worse for Nick. He could have violent tantrums multiple times a day. He could pound his head against the wall just to stim on the blood pouring from his forehead. I know that things could be a lot worse.

But lately I've been watching some things unravel for my little boy. When we started seriously implementing biomedical interventions in December, Nick made tons of progress. Tons. His eye contact improved, his stims decreased, his sleep patterns normalized, and his chronic diahhrea healed. And then it seemed the progress decided to back pedal. Nick's stims are steadily increasing again (so much so that I lovingly gave him the nickname of Super Stim). His sleep patterns . . . well, I guess I can't use the word "patterns" because there is no pattern at all anymore--he's as likely to be awake at 4 AM as 4 PM. His stomach--that's the worst part. The chronic diahhrea has returned; he must feel miserable.

Last night I was tucking him in for about the tenth time because he just couldn't get settled enough to fall asleep. He'd look at a book, then stim on his hands (I finally figured out that he's imitating train signals with his arms--I think that's kinda cool, actually), then he'd get up out of his bed. I finally pulled out the lotion and rubbed his feet while he stimmed, giving him the deep pressure he loves. I rubbed and rubbed . . . and cried. I was doing everything I knew how to do to make him feel better--all the therapies, all the doctors, all the vitamins. I felt like there had to be some way to make him feel better, because I had seen his health improve so much just a few months ago, but I had no clue what it was. And so just I rubbed my son's feet and talked to him.

"Mommy loves you so much, Nick."

"I miss you."

Nick was right there next to me, his growing feet in my hands, but I still missed him. I missed hearing him tell me about his day. I missed hearing him tell me about the thing going through his head that made him laugh so hard. I missed hearing him share his hurts with me so that I could comfort him. And just because I've never actually heard him say any of those things doesn't make the missing any less real.

I wiped a tear and started rubbing the lotion on his hands, wrists, and arms. And he started one of his verbal stims, one that I'd heard before. "Ki-dee-why," he said. Time and again.

But here's the thing: his pronunciation got clearer each time. It began to sound like "Kitty Why." And then . . . then I heard it.

"Kitty White. Kitty White."

I said it back to him and he smiled that content Nick smile that creeps across his face when he realizes someone gets him. "Kitty White," he said, eyes locked onto my face, and I said the phrase back to him.

Then I ran out of the room. To find his Kitty White.

I scooped Mitty up from her peaceful sleep and plopped her down on Nick's bed. "Kitty White," he said and laughed. "Meaaaaa-ow!"

I left Nick with his Kitty White . . . and, miracle of miracles, the restless boy found his sleep.

That wise little boy. Nick had done more than say "Kitty White." He'd answered me. He let me into that world that I'd been missing, told me that he'd been laying there thinking about his cat. That calm little smile that had crept across his lips winked at me. "See, Mom. I'm right here," it said--nothing to miss.

Repeated messages

Here are some of the things I've been hearing lately:

"I haven't seen you in so long!"

"I've missed you."

"It's been a year since we've hung out."

Add any variation you like to that, and I've probably heard it recently.

I guess that work and autism have sort of overtaken me.

I love my work. I love my boys and all of who they are. But I love my friends too. I miss them.

(Denise puts aside blogging to call a friend.)

This is autism too

Our culture overflows with autism stereotypes. Auties are these people with amazing mathematical abilities but who are for the most part emotionally blank (well, except for when it comes to the occassional feeling of fear). Just think Rainman or that kid in Mercury Rising. Brilliant, yes, but neither ever smiled. Even representations of high-functioning Aspies are narrow and stereotypical. There's Jerry on Boston Legal--you know, the guy who barks and does weird things with his hands but never smiles. Then there was Grey's Anatomy's attempt at bringing Asperger's to the small screen. As Dr. Virginia Dixon, Mary McDonnell embodied just about every autism stereotype for three episodes. And, of course, she never smiled.

I remember going to see The Black Balloon a few months ago with some friends and being in awe as I watched it. There was someone with autism. And there was someone who laughed and smiled and enjoyed life (and yes, he had his share of "autistic" behaviors too). It was the first time I'd ever seen a representation of autism on the screen and saw even the slightest traces of Nick.

Our culture seems to enjoy focusing on the dark, "freakish" aspects of autism, highlighting the car accident so that Americans will slow down to stare. Lord, you only need to take a look at that Autism Everyday film that Rochelle pointed out (and that I got so flippin' angry about). Trantrums and freakish behavior--yep, that's how autism is rhetorically constructed.

Granted, yes, people on the spectrum may have tantrums and may do things that are not socially acceptable. But, along with that, there is the beauty and awe . . . the awetism.

Yesterday we celebrated the 4th with a little backyard barbeque. As the burgers were grilling, Nick climbed up on this little ladder we have in the yard . . . it was once a pool ladder, and Noah was so taken by it that I spent $5 on it at a neighbor's yard sale. Nick stood on the top and looked up at the sky. He laughed and laughed and laughed at the clouds and the trees. His joy is the purest, truest joy I've ever seen . . . so beautiful. How often do the rest of us stop to look at the beauty of the sky? How often do we drink in that joy so deeply that we bubble with laugher for several minutes? Not enough . . . not even close to enough.

When darkness came we went to watch the fireworks with friends. Nick watched the light show, reaching for the sky and saying "oh-fie-y, oh-fie-y." And then we braved the traffic, joining the host of others trying to cram their cars onto the freeway. Most of us respond to traffic jams less than positively . . . but Nick's beautiful laughter returned as we sat in the line of cars. He was looking at the trees on the side of the road. "Twee, twee," he'd say between giggles.

So beautiful that my eyes fill with tears thinking about it now. That's awetism.