Hey, Look! We’re on the Internet!

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No, seriously. Christopher Ulmer, a young special-ed teacher from Florida, came and interviewed us for a project he’s working on called Special Books by Special Kids. He’s been traveling the East Coast recording  his encounters with special-needs families along the way.

Here’s a link to the video. Just about all of the kids show up—all except our youngest, who was too wrapped up in video games to be bothered with an interview. Enjoy!

It’s All About Us

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I’m so proud of my oldest daughter. All by herself, without telling us, she produced this video for a project in her Aspergers-only school. She doesn’t often tell us what she’s thinking—not uncommon for any 13-year-old girl and even more prevalent with girls on the spectrum—so I was blown away when I saw this.

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 Welcome Dose of Reality

Here’s another installment of “Celebrities and ASD,” this time from the world of sports. It seems that former Red Sox pitcher Curt Schilling has a son with Asperger syndrome. He and his wife, Shonda (gotta love that name), wrote a 2010 book about their journey entitled The Best Kind of Different.

“Well, that’s special,” you might say. “Another Jenny McCarthy-like figure talking about how wonderful her child is and how her life has been transformed by this beautiful but different, otherworldly being entrusted to her care.” But you’d be wrong. At least from the Schillings’ interview on the Today show and a more extensive interview they gave to an online sports journalist named Maury Brown.

Here’s what I liked about the Schillings’ story. They’re willing to be real. Shonda (ooh, that name again) is very up-front about the seven years she spent not knowing that their son, Grant, was different. How she didn’t get his lack of responsiveness to her parenting. How she would yell and scream at this kid who seemed to disregard her every command. How she would get really angry at her on-the-road husband for not being around to help her with this “difficult child.”

And then there’s Curt’s admission that he really had a hard time relating to his son—and that he still has a lot of work to do on their relationship. The kid is so intense emotionally—both positive and negative—that he didn’t know what to do with him. He talks about trying to discipline Grant over the phone: shouting at him via long distance, threatening him with loss of privileges, trying to knock some sense into him verbally, all to no avail. Mind you, Schilling is known for speaking his mind pretty bluntly, and his unguarded comments in MLB circles have gotten him in trouble a few times. So it kind of fits that he would be just as direct with his children.

But oh, the reality that this couple brings to the conversation! I love that, because it isn’t easy, and parents are only human. Even after having learned that Grant is on the autism spectrum, they still have tough days—a very important insight. Knowing doesn’t change everything. It takes time and effort to change your expectations. It takes time, and trial and error, to learn how to roll with the punches. As Curt said, every day is like a jack-in-the-box. You don’t know what kind of kid is going to wake up each morning: Mr. Flame-Throwing Grumpy Gus or Lil’ SweetPea the Emotionally Needy Klingon. But they’re learning. They’re adjusting. They’re trying their best to figure the whole thing out and to do right by their son. And this a full three years after Grant’s diagnosis!

I can’t tell you how refreshing it was to see the video and read their interview. It’s so refreshing to know I’m not the only one who can lose it with my kids. Or that I’m not the only one who still doesn’t get them all the time—after all these years. Or that I’m not the only one who has to take a break every now and then lest I get wound so tightly that I snap. Or that I’m not the only one who forgets that all they’re doing is being themselves, being autistic in their own unique ways.

Because really, sometimes it just plain sucks. Every emotion is writ large. Every variation from routine is a potential explosion. Unless of course it’s the kid wanting to change the routine. Then it absolutely has to happen according to the newly announced plan. Every teacher needs a lesson in ASD. Every excursion, even to the flippin’ grocery store, is fraught with peril. Sometimes it just gets to be too much. And that’s why I’m so glad to know that folks like the Schillings are around: real people who don’t mind being honest about how hard it can be.

Congrats, Ernie!

While the golfing world is filled with news of Ernie Els winning the British Open this weekend, I thought I’d repost a video he produced for Autism Speaks. In 2005, Els’ son, Ben, was diagnosed as being on the autism spectrum, and after he and his wife went through the shock and grief of the diagnosis–which he himself speaks of–he realized he was in a unique position to help. And so began the plans for the Els Center of Excellence in South Florida. “Autism hits families hard,” Els wrote, “and I’ll be fighting for the rest of my life to try and help others in the same situation.”

I find it comforting to know that people like Ernie Els are giving so much to the cause of autism research and therapy. Of course, he’s got skin in the game! But he doesn’t have to go to such lengths to found a $30-million state-of-the-art facility. He could just as easily write a huge check to Autism Speaks every year, and get on with his golf. And neither is he trying to use this project as a way to burnish his image or market himself, as others have done. He’s just trying to make a difference for people like Ben.

So join me in congratulating Ernie Els on winning the British Open–something he wasn’t expected to do. But let’s congratulate him also for his generosity and dedication to something bigger than his life, his career, and his image. And if you have a mind to help out, remember that my family is going to be walking for autism research in September. We’d really appreciate any donations you could make to help us hit our goal. We can’t give $6 million, like Ernie and Liezl Els did, but we can do something that still makes a difference!

An Autistic Onion-ite in Afghanistan

Get a load of this video, from The Onion. I’ve never heard of Michael Falk before. I don’t even know if he is genuinely autistic or if he’s an actor. If the latter, then hes’s very good. He’s got all the ASD stuff down:

• No eye contact

• Quirky mannerisms

• Oddly inflected voice

• Literal interpretation of figurative language

• Irrational reliance on logic

Not only does the video show many aspects of the autism spectrum; it’s a hoot! Enjoy!