Tuesday, December 11, 2018

If you care about kids including ones with disabilities, show them this short film

I drove by one of our town's baseball fields the other day, and Ben said "New park!" Sure enough, they'd put up a new swing set nearby, complete with a blue adaptive swing. It was a happy sight—inclusive play starts with equipment that enables all children to participate. That can open doors to the kind of inclusion that's even harder: Getting children to welcome and actively include children with disabilities. Any one of us who's dealt with stares and whispers at the playground, let alone bullying, knows that story.

Yesterday, my friend Bronte shared an award-winning short animated film, Ian, that's about inclusion. It's based on the story of a fourth grader named Ian who has cerebral palsy, and the film happened thanks to his mom, Sheila Graschinsky. The family is based in Argentina but the film has no dialogue, to make its message universal. Sheila originally wrote a book about the everyday life of families of children with disabilities, to hand out to kids who snickered at her son. Ultimately, that lead to this beautiful film.

For me, Ian was a bit painful to watch. It hit close to home in small ways (like the part where Ian struggles to maintain control holding a cup as his peers watch) and large ways, too; Max has never had that (spoiler alert) happy ending. Although Max also hasn't experienced the sadness Ian feels in the movie—he is content with his life, it is me who has ached for more social opps for him—there are many children out there who long to belong. The truth is that inclusion doesn't always come naturally or easily to children without disabilities, who may be wary of ones who don't look or act like they do.

It's always helpful to have a springboard for conversations about inclusion. So take a few minutes—Ian is just seven minutes long, followed by clips of the real-life Ian—to watch this with your child and talk about it. You could also suggest that your child's teacher show it at school to get a discussion going. If you are a teacher or education, show kids this film. You and you and you and you have the power to help make the world a more welcoming place for children of all abilities.

Image: Screenshot/Ian

Monday, December 10, 2018

Super-sweet sixteen

It's been sixteen years since you were born, beautiful boy—sixteen years filled with progress, accomplishments, achievements and wins. You have succeeded, against all odds, and you keep right on doing so. I'll say it once more: If only those grim NICU doctors could see you now. I wish that I could have known all the greatness that lay in store for you. These are the wonders Daddy and I couldn't have imagined back then—and that we are grateful for every, single day.

16. We couldn't have imagined how strong you'd get. As you lay there in the NICU incubator, hooked up to all those wires and tubes, I'd stare down at you and will you to wake up. One day, I read "Oh, The Places You'll Go" to you with such feeling that a nurse asked me to quiet down. When I finally got to hold you, I whispered again and again, "You are going to get through this."

15. We couldn't have imagined just how much your brain would blossom. Once, we saw the MRI film of the stroke. And we've never looked at it again. We learned to just look at you.

14. We couldn't have imagined all the joy you'd bring us. You chuckled for the first time when you were close to three months old, filling my heart with hope. You have the sunniest disposition, one that has charmed your peers, therapists, doctors, teachers, counselors and basically anyone who's part of your life. Your smile actually can light up an entire room, just one of your many gifts.

13. We couldn't have imagined all the pride you'd bring us, either. We weren't close with any people who have disabilities before you were born. We didn't know any families who had children with disabilities. We didn't realize that having a disability doesn't affect a person's determination or spirit. We didn't know all the abilities you would have. And wow, have you shown us.

12. We couldn't have imagined you'd crawl, walk, ride a bike, go up and down stairs on your own, feed yourself, drink by yourself, hang out in the house by yourself, step into the car by yourself or generally get so independent. Daddy and I will never forget when you were five years old and the car showed up to take us to the airport to Disney World and before we knew it you'd bolted down the front steps, the first time we'd seen you do that.

11. We couldn't have imagined you'd speak words or communicate like you do, let alone that you'd turn into a teen who regularly tells us, "I KNOW!" So. Typical.

10. We couldn't have imagined you'd have such an awesome sense of humor, or that one day you'd be teasing us. This weekend, I got off the phone with a friend as I was buckling you into the car and I a few seconds later I asked, "Where's my phone?!" Because as you know, I misplace it every ten minutes. And you pointed to it right there in my hand and said, "HA HA HA HA HA, MOMMY!"

9. We couldn't have imagined you'd learn to do math, spell or read, or that when we are out driving you read the road and street signs to us. Or that you'd have a visual memory that comes in as handy as Waze does.

8. We couldn't have imagined you'd develop such passions—purple! Spaghetti! Car washes! Mac 'n cheese! Lightning McQueen! Stuffed shells! Chicago! Jamaica! Orlando! All the pasta! You know what you want. Oh, boy, do you ever.

7. We couldn't have imagined you'd have career goals, Fireman Max. And we will help you achieve them.

6. We couldn't have imagined what a pain in the ass you'd be at times—or that we could ever feel that way about you. Way back when, we felt only pity. As the years passed, we came to view you in the same ways parents generally view their children. Which is to say: You're often awesome and at times you are a pain in the ass. (Yes, we know, we are too.)

5. We couldn't have imagined how handsome you'd be. You were born chubalicious and you aced cuteness but now, you are one good-looking dude. Watch out, ladies!

4. We really couldn't have imagined all the places you'd go. The boy who once refused to eat anywhere else other than at the greasy spoon near our house (seated only in the booth by the bathroom) and who feared movies and shows is now the boy who never wants to stay home, who goes to movies alone and who attends sleepaway camp.

3. We couldn't have imagined just how emotionally astute you'd be. You can always tell when one of us is upset, and you always try to make things better. You are the United Nations of our family.

2.  We couldn't have imagined what a great brother you'd be, to your younger sis or to your little bro.

1. Sixteen years ago, as Daddy and I sat in the NICU, devastated, listening to the pediatric neurologist tell us that you'd have a stroke, we couldn't have imagined how lucky we'd feel someday. And we do.

We love you, Max. May sixteen be your sweetest year yet.

Friday, December 7, 2018

The Disability Blogger Weekend Link-up: Take a shopping break and post!

What to do if you're new  

This is a place to share a recent favorite post you've written, or read. Scroll all the way down to the bottom of this post. Where it says "Your name" put the name of the blog followed by the title of the post you want to share (or just the name of the post, if there's no room—you get 80 characters).

Like this: If only this commercial were more of reality for kids with disabilities

Where it says "Your URL" put the direct link to the post.

Click "Enter." Leave a comment if you want to say more. Go check out some great posts.

Thursday, December 6, 2018

A great big brother

Max wanted to see Ralph Breaks the Internet again. That's his thing with movies—once he enjoys one, he wants to see it again and again. So far, he's seen Incredibles 2 nine times. Also: He now prefers to go without me or Dave. After he did that this summer for the first time, at his request, he's gone to the theater several times on his own now. Last week, he decided he'd like to go with Sabrina.

She was dubious. "I'm not old enough to go to the movies by myself!" she said. I pointed out that Max would be with her and she'd be at our local theater, which is literally a two-minute drive from our house.

"Come on, Sabrina!" Max said. He finally convinced her. And so, on Friday night Dave drove them to the movie theater. He bought tickets, got Sabrina popcorn and Sprite and left.

Max has come a long way from his first-ever trip to the movies five years ago (Monsters University). He used to be terrified of them. Now he was the one encouraging his sister to take the plunge and try something she'd never done: go to the movies without her parents. She didn't quite love it as much as he did, which mystified Max. Because he, of course, is planning on seeing it a bunch more times.

Whenever Max takes another step toward independence, I breathe a deep sigh of relief. But this was something more—he was being the mature big brother. Win win win win win.

Wednesday, December 5, 2018

The people who just want to make your child happy, continued

I got an email the other week from the principal at Max's school. One of the local firefighters—they have a station right around the corner and they visit from time to time—had outgrown a gear jacket and wanted to give it to Max. Would he like it? 

Um: YEAH!!! I asked Max, just to be sure. He said: "YEAH!!!"

Several years ago, Max decided he was going to be a firefighter. These days, he no longer visits our local station every weekend, but they're still his people. Whenever Max stops by, he ends up hanging out with them at the big dining room table in their living area, where they catch up about Max's life and the most recent fires they've put out. Firefighters remain some of the biggest-hearted people I have ever met who go out of their way to encourage Max's dreams. Remember that time his favorite, Firefighter Angelo, showed up at our house on his birthday to give him a ride in a fire truck? (I still watch that video on occasion because it is so bliss-tastic). 

Max's principal put me in touch with Firefighter Matt, who told me that the town's deputy fire marshal and fire official/inspector were in on the gift—they both knew Max, too, and were fond of him and the enthusiasm he shares for their work. We arranged for Max and Dave to stop by after school last week. Max could not wait. 

Max got a jacket and pants, too. He definitely has to grow into the gear, but it'll be there for him. He looked pretty spiffy in it. What he can savor now and for the rest of his life: knowing that there are good guys out there who make him feel like one of their own.

Tuesday, December 4, 2018

If only this commercial were more of a reality for kids with disabilities

My friend Wendy texted me a commercial a couple of days ago. I made the mistake of watching it while I was out having coffee, and I choked up at Starbucks.

A group of kids in a suburban neighborhood excitedly race over to another kid's house because he's about to do something awesome. It turns out to be a milestone on a video game. Why is this ad-worthy? Because he is is pulling off this feat with the Xbox Adaptive Controller, released in September at the price of $99.99.  The boy's name is Owen Simmons. He's 9 years old and has Escobar syndrome, and the kids in the commercial are his real-life friends, including his bestie, Gunnar.

This commercial gave me the feels in all sorts of ways. I felt joy for this boy. I was excited to see the Adaptive Controller in action. Microsoft's ad illuminates what we, as parents of children with disabilities, want for them: to have access to the same childhood pleasures that other kids do, and to be included. But I felt a twinge of sadness, too, because that part isn't a reality for many children with disabilities I know, including my Max.

Max is a whiz at Xbox 360 bowling. He plays with his siblings, me or Dave; he doesn't have lots of friends. This doesn't at all faze Max, who is content with his life. He enjoys his school social life and after-school events. He has the best time at the camps he attends during summer. As his mom, though, at times I mourn the more limited social opps he has. I can make all sorts of things happen for Max, except I can't forge friendships for him.

Here's a plea to parents out there who don't have children with disabilities: Please don't just weep over the commercial and move on. Encourage your kid or teen to get to know kids with disabilities at school and in other settings. Talk about the differences we all have, the similarities we share and the abilities each and every one of us possesses. At the very least, encourage your children to say hello to our children at the playground, the park, parties or wherever. They won't be doing our children a favor—they'll be expanding their world, too.

Like the ad says: When everybody plays, we all win.

Photo: YouTube/Microsoft 2018 Holiday Ad

Monday, December 3, 2018

Its never too late to start teasing your mom

"Do you think Max will ever be able to tease me or Dave?" isn't a question I've ever asked our pediatric neurologist—I mean, what would he say? I have wondered about it, though. Max has a great sense of humor, and it seemed like a possibility.

I fully realize that it is whacked to want your teen to make fun of you. I already have my fair share from another certain member of our household. The thing is, teasing is an advanced level of cognition. You need to understand concepts to be able to provoke someone about them. And I want that for Max. I want everything for Max.

The other night, I was headed out to run an errand. Max stood by the back door and threw open his arms. He's not that much into hugging lately (typical teen) and I was excited. I gave him a big one.

"Wait, don't you don't hate me?" I teased him. He is quite fond of telling me how much he hates me. (Very typical teen.) He grinned.

"Just a little!" he said, and grinned even more.

Right. There.


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