The Day We Met Temple Grandin

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See that grainy picture right there? That’s my oldest son speaking with Eustacia Cutler, better known as Temple Grandin’s mother. Yes, that Temple Grandin. We were at a conference on autism on Friday, where Cutler and Grandin were both featured speakers.

I wasn’t thinking of attending this conference—I had only heard remotely that it might be going on. But my son found out about it and practically begged me to take him. I was a little reticent. I thought it would be one of those highly scripted events, where the speakers on stage to rousing applause, give their spiels, and then are whisked off to some undisclosed location. So I suspected that my boy’s dream of meeting Temple Grandin would probably not come true, and that he might end up disappointed.

I was wrong. No sooner had we entered the lecture hall than we found Eustacia Cutler milling about, unrecognized by many of the attendees. So I took my boy up to meet her. She was as charming as could be, introducing herself to him and asking about him and his family. Very classy in the way that only New England matriarchs of a certain socioeconomic status can be. Then the moment was gone, and we had to find our seats.

Michael was thrilled to have met her, if only so briefly. He also felt emboldened by it—and dramatically so. This kid, who is usually very shy and unnecessarily aware of his “otherness,” found the courage during the Q&A part of her talk to go up on stage and ask Cutler a question. Seriously. He walked right up in front of nearly three hundred people, spoke into the microphone, and his story. He talked about how he’s scared to make the transition from his very small private, Aspergers-only middle school (with a student body of 25) to the big, noisy, public high school where he is enrolled (population: 1,500). Cutler was impressed by his courage, and she told him to just be himself, remember his poise, and not to let anyone tell him he’s anything less than an amazing, goodhearted kid. Then everyone in the room gave him a big round of applause. I was floored.

A Minor Celebrity.

It was an awesome moment for me as a dad to see my son take this step. I spend so much time thinking about his social anxieties, his cognitive glitches, and his emotional ups and downs. I fret over his prickly relationships with his siblings. I worry about his struggle to handle sensory overload. But here he was, holding a conversation with Temple Grandin’s mother in a full-to-capacity conference hall!

Of course, all of my pride pales when compared to my son’s own response. He was shaking in his shoes, he told me, but he felt so good that he could talk to someone who understood his challenges—in front of so many fellow travelers. What’s more, he became a minor celebrity for the day. At every break during the conference, people came up to him to congratulate him, to tell him how they could relate to what he was saying, and to encourage him. Over and over again, they told him, “If you could get on that stage and talk in front of so many people, you’re going to do great.” One young man with Asperger syndrome, who just graduated high school, told him, “That was awesome! I couldn’t have done what you just did.” He and my son spoke for a good while, comparing experiences of having been bullied in middle school. He told my boy that high school is a different, and easier, challenge altogether, and he encouraged him to push through any anxiety he might feel. “There are a lot of kids like you out there. You just have to find them, and you’ll fit in.”

It got better from there. Temple Grandin herself came wandering through the hall during the second break, and I took Michael to meet her. Then, after lunch, he found her himself and spoke with her. Then again after her talk. Three different encounters with someone he admires so much. Three different topics of conversation. Not a fear in the world!

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My son did so well that I gave in and let him buy a (small) can of Red Bull, a drink he has long wanted to taste. I also bought him a copy of Grandin’s latest book. I didn’t really have a choice in that one. He had picked up a copy of the book to bring it to me and ask if we could buy it. On his way to find me, he bumped into Grandin one last time. She saw the book in his hand, assumed he had already bought it, and autographed it for him. What else could I do?

A Glimpse of the Future.

Anyway, we drove home at the end of the day, my son asleep next to me, as I excitedly filled Katie in on the day’s events.

This is what I love about my kids. Every now and then, they throw me for a completely beautiful loop. Here I was worried about whether he would be able to make it through one talk, let alone four—and he goes and does this!

We got home just in time for dinner, which was just as chaotic as it always is. For us, this meant a couple of tantrums and a minor melt down. Even my oldest, who acted so much like a young man during the day, collapsed halfway through. But that’s okay. I got a glimpse of the future, and it looked very bright indeed.

Different, Not Less

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Danes 1So we saw the HBO movie Temple Grandin this weekend. For those who don’t know, that is the name of a professor of animal science at Colorado State University. Her designs for slaughterhouses have revolutionized the beef industry, and she is an outspoken advocate for the humane treatment of cattle. She has become a household name among ranchers and cattle handlers, and her book, Thinking in Pictures, is a best seller.

Temple Grandin has autism. She didn’t speak until she was four. She was expelled from elementary school, and bullied in high school. She hates being touched by anyone, even her mother. She eats only yogurt and Jello. She insists on wearing cowboy shirts and jeans everywhere she goes. She can’t stand loud noises. And she developed a special “squeeze machine” that she used for decades when she would feel overwhelmed or close to melting down.

Katie and I had seen the movie before, but we wanted our older kids to see it this time. We wanted to expose them to someone on the autism spectrum who has made a successful life for herself, someone we consider a true hero in the world of ASD.

The kids enjoyed the movie, and our two oldest were able to see some of their own lives in this woman’s story. But honestly, I think Katie and I learned more than they did. We have been working so hard lately on getting the kids through school assignments, helping them work on their social skills, and managing melt downs that it was good to be able to step back and get a big-picture perspective. Watching the movie’s portrayal of some of the emotional toll that ASD takes on a family was difficult at times, but the tough stuff was overshadowed by the portrait of a young woman who pushed through numerous deficits to find her way in the world and make a real contribution. It also portrayed a mother who simply would not give up. “Different, not less.” That’s how she constantly described her daughter to skeptics and scoffers. She held on to the vision of her girl making it through college and living independently, pursuing a career, and she imparted that kind of determination to her daughter.

This may sound like a feel-good, moral-of-the-story type of movie. And to a certain degree it is. But what it did for me was remind me that all the work we’re doing for our kids has a purpose. It can be so hard just getting through a day sometimes that I can forget how much potential these kids have. The tunnel vision that results from daily battles can make me lose sight of the future that is available to them—a future that is just a bright and promising as any neurotypical child.

You see, psycho-educational testing has shown that our kids are all very bright. There’s not a dim bulb among them. Some are absolute geniuses, in fact. But their ASD can make it hard for them to want to test their limits. It can keep them locked up in themselves. And it puts them at a disadvantage in a school system that, despite its high ratings, still relies far too much on a cookie-cutter approach to education. But watching this movie again helped me see that my kids really do have a lot to offer. It’s bottled up inside, and it’s up to Katie and me to find ways to get it out in the open. It’s also up to us to convince teachers and administrators that they’re worth the effort. (Believe me, we’ve had to deal with more than our fair share of naysayers. And something tells me we’re not done with them yet.)

But the other thing the movie did was to help me see that it’s not all up to Katie and me. Yes, we have a ton of work to do to help them face a world that won’t readily understand or accept them. But our kids are also capable of discovering their own passions and chasing them down, if we can just set them on the right footing. I am a worrier by nature; I’ve always known that. Sometimes in my worrying and trying to get everything just right, I can forget that my kids are making their own plans and developing their own visions quite independent of me. And that’s okay, as long as Katie and I can give them the foundation they need to pursue these visions—and the skills they will need to live in a world that can seem so alien to some of them.

Anyway, here’s a link to the final scene from the movie, where Temple and her mother attend a conference on autism, and Temple gives an excellent summary not only of some of the major challenges that people with ASD face but also of her mother’s hard work on her behalf. It’s really quite touching to see the different emotions that play across her mother’s face as Temple unwittingly gives a huge, long shout-out to everything her mother did for her. Watch it, and you’ll see why this is the scene never fails to put a lump in my throat.

Yes, our kids are different. At times, very different. Quirky with a capital Q different. But they are not in any way less. That’s something I have to keep telling myself. But it’s also something that they’re beginning to tell me.

A Different Kind of Card Game

A couple of days ago, I wrote about my 12-year-old girl’s hour-long search for her purse—a quest that made her late for school and me late for work. Well, I want to follow up with something that happened as I drove her to school that morning.

As we backed out of the driveway , she picked up my wallet and began rifling through my cards: driver’s license, insurance ID, business cards, credit cards, etc.

“What are you doing?” I asked her.

“I’m reorganizing your cards.”

“Why? They were perfectly fine the way they were.”

“I know. But this helps me work out my anger.”

Pressure Valves.

I didn’t pursue it right then and there. I was just glad we were heading in the right direction without any major incident. But later that evening, I asked her about it.

“I was angry that the purse was right there all along, and I passed by it about thirty times without ever seeing it,” she told me. “I figured that if I could mess up your cards and put them back in the right order, I would feel better.”

Evidently, it worked. She had a pretty good day at school—which is to say that Katie had to field only one anxiety-laden phone call from her. She did okay on her homework, and the evening went off without any major melt downs.

If that’s all it took for her to get right with the world, I was more than happy to oblige. Heck, I’d stack my wallet with a whole deck of playing cards!

While this kind of behavior is quirky, it’s not uncommon for my daughter. Actually, I’m glad to see her doing it. It’s a lot better than other habits she has had over the years. For instance, when she was a very little girl, she used to do what she called “belly exercises”—a rhythmic motion, akin to dry humping—for nearly 20 minutes at a time in the middle of the afternoon. We never knew what to make of it, especially when she would emerge from the exercises sweaty and out of breath. But our pediatrician dismissed it, so we never followed up. (We have since changed to a doctor who actually knows what ASD is and has experience working with kids on the spectrum.)

Then there was the phase when she had to take all of her Littlest Pet Shop dolls to school in a purse so that she could reach in and touch them when she was feeling stressed out or lonely. Or the habit, which persists, of taking a suitcase filled with her Webkinz plush animals whenever we go on a day trip or a vacation. Oh, and she still plays with water. She’ll dunk her face in the bathroom sink or fill up a small hole she dug in the back yard so that she can squish her feet in the mud.

Defusing by Diffusing.

Anyone who has a child on the autism spectrum will identify with these types of behavior. They’re all the unique ways ASD kids will diffuse tension. When they’re not melting down, that is.

What’s there to diffuse? Plenty. There’s the tension that comes from sensory processing glitches. Most of us don’t get bothered by things like fluorescent lights, the sound of traffic, or other sensory input that is part of our everyday, noisy existence. But many kids on the spectrum are highly attuned to these things. One of my kids, for instance, can’t stand the feel of denim. The only pants he will wear are sweats—and not the shiny kind. There’s also the tension that comes from having to deal with people. Social communication can be hard on ASD kids, because many of them have a hard time reading the subtleties of body language and vocal inflections. It’s like deciphering hieroglyphics, and it’s exhausting. And finally, there’s the tension that comes from just plain knowing how different you are. As I mentioned in an earlier post, the co-incidence of ASD and depression or anxiety is very high—mainly stemming from this sense of otherness.

So with all of these factors at work, it’s no wonder that folks on the spectrum try to find ways to relieve the pressure that builds up. Temple Grandin has her squeeze machine. Bill Gates rocks back and forth. A young man in Great Britain carries a well-worn plush lion around with him. And my little girl takes mud baths and reorganizes cards.

Here’s what I like about what I saw in the car Tuesday morning. My daughter found a pretty creative way of acting out without, well, acting out. This little episode also shows how intelligent and insightful she can be. She knows she has Aspergers. She knows she’s different. She knows she has challenges that other kids don’t have. And while it can make her sad and frustrated, it has also moved her to find ways to deal with it. I also like the fact that she is experimenting with strategies that don’t get her in trouble or that don’t mark her out for teasing or bullying from her peers. And finally, I like the fact that she’s doing this on her own, without any coaching from her parents or her psychologist. Mind you, this doesn’t happen all the time. There are many times when she will act out more dramatically and more emotionally. But the fact that she worked this one out all on her own makes me smile. It tells me that she will find her way.

Now, if I can just get her seven-year-old brother to stop staging mock battles with his little brother when he’s uptight. Or her nine-year-old brother to stop sucking his thumb. Or her four-year-old brother to stop throwing things all around the house. Or her big brother to stop chewing his finger nails down to the cuticles. Baby steps, Leo. Baby steps.