Life With A Side Of Autism

LIFE WITH A SIDE OF AUTISM

Friday, November 18, 2011

Bounce

It was a Saturday, David was five, and we were bouncing.

Yes, bouncing. A local place down the road opened up with giant inflatable moon bounces, slides and obstacle courses – an indoor playground full of cushioned fun and energy-burning action. In short, it was a kid’s paradise and it only cost us $10 a head. Normal entry was $8 for a bounce-all-day pass, but we paid an extra $2 as part of the fundraiser. I caught the sign as I drove by on my way to work one morning: “BOUNCE FOR AUTISM 10-2 SAT”. Bouncing? For a cause I had a direct relationship to? You better believe we were there.



So there we were, me, my kids, and a bunch of other people’s kids, some autistic, some not. At the center of the room was a woman in a black T-shirt, standing near a table with source materials on it. Lots of posters and pamphlets and papers – many of which were vehement in their branding of vaccinations as evil and full of information on hundreds of different vitamin supplements and alternative therapies like acupuncture and chiropractic work that can all help overcome autism.

*Sigh*

Maybe it’s because I’m just not a person who sees things in black and white, but I’m just not what you’d call an Autism Fanatic. Do I think vaccinations play a part in autism? Maybe. For some kids. But not for all. Not for mine, I know. David showed signs of his disability almost from birth, though I didn’t recognize them at the time. Do I think cutting off his dairy or wheat intake will change him radically? No, because we tried it for months and it didn’t. I do know of autistic kids that did better on a gluten and dairy free diet. I also know kids, like David, who didn’t benefit at all. Would I try alternative therapies on my son? Maybe. I’d have to evaluate them for myself and find out what they might have to offer. I’d certainly consider it. Who wouldn’t? I’m not going to delude myself that any of this will “cure” him, but if I can find things that make a difference for the better, however minor, I’ll go with it. 

I wasn't about to get into a militant discussion of stringent therapies and offer to protest vaccination clinics, but I was willing to talk to this woman, this woman who had a son like mine, and offer her my support, my shoulder, and just plain let her know she’s not alone. I headed over and introduced myself to her, and to the two other mothers she was standing with. They all had newly diagnosed children, two boys and a girl, ages 2 ½ to 3, and they were all, quite frankly, terrified.

What if their child never got “better”? What if they couldn’t go to school? Or play soccer or football or join the band? What if it was something I did that made him this way? Or something I didn’t do? What if, what if, what if. I could spend a lifetime on 'what if'. I’ve been there, done that, and wondered if I had gotten a different colored tee shirt, if it would have made a difference. It is what it is, and our job is to work through what it is to what it will be. Whatever that is. The hard part is, we know this is a lifelong journey for us, and for our children. That lifetime can stretch before you endlessly some days. 

Just then, David ran by and I grabbed him by the hand, pulling him over to me. His attention was a million miles away. He wanted to bounce, not talk. I made him talk anyway.

"David? David, this is Miss Andrea. And this is her son, Dylan. Can you say ‘Hi’ to Dylan?”

David glanced at Dylan for a nanosecond, raised his hand and said “Hi Dylan! Mommy! I bounce!”

“I know, I saw you bouncing! Are you having fun?”

“Fun David! I bounce!” He tried to pull away, so I let him go. He ran a few steps, then turned back to me. “C’mon Mommy! Mommy! Bounce!”

“In a minute, Bubby. Mommy’s talking.”

“Bounce, Mommy!”

“Five minutes. Okay, David? Five minutes.”

He held up a hand, showing five fingers. “Five minutes,” he repeated. “Bye!” And he was gone, chasing after his sister, screaming her name.

I turned back to the other women, and they were staring at me. I wondered what I did – was I not attentive enough? Did I not use the proper applied behavioral therapy listening techniques? Funny how you get so used to people judging you with your child that it becomes second nature. Finally, one of the other Moms broke the ice.

“You just had a conversation.” 

She said it like it was hard for her to believe, and suddenly, I was spiraling back in time, to two years before, when I wouldn’t have believed it either. Two years before, that kind of back-and-forth was something I’d only hoped and dreamed we’d someday be doing. And now there it was, someday, and I took it for granted. I shook my head at myself.

“I know. It’s normal for me now, but two years ago it wasn’t. Two years ago, he didn’t talk. Not more than a word or two, anyway. Two years ago, he screamed and pointed and screamed some more. Or he shut down and ignored us all.” I look over to where he bounced, chasing his sister around, laughing and shouting and enjoying himself immensely, and I smiled. I smiled big.

“He called you ‘Mommy’”, said another mother. The longing in her voice cut into me. “Mine can’t even say ‘Mommy’.” Her voice caught and she looked up at the fluorescent lights, blinking hard. I stepped forward, wrapping my arms around her and I said “Oh, honey, he will. He will, and it will be so worth waiting for. I promise.”

We chatted some more, about therapies and food and tantrums and other kids and what works and what doesn’t and why it’s all so damn hard. Pretty soon it was time to go, and as I was rounding up the kids, I saw a very tired, very frustrated mother at the end of her rope. Her child was in front of her on the floor, locked in a tantrum of epic proportions because he spilled water on his pants and couldn’t bear the sensation of an inch-wide wet patch on his leg. She looked up apologetically and said “I’m sorry….he’s so loud, I know.” I smiled and I said “Not as loud as mine. And don’t apologize. You have to know we’ve all been there. Do what you need to do.” She thanked me for my understanding, and gathered him in her arms, crooning and rocking and trying to distract him. 


No one rushed forward to tell her how to parent her child or what she should do to fix this because we all knew that our kids are all individuals, and we knew that Mom knew what works and what doesn't work for her kid. It was kind of refreshing being with a group of people who get that.

I managed to get David’s coat on him, which was no easy task because he and Anna were so busy tickling each other and running in circles around me. I could barely get him to stop long enough to do it. We headed for the door and he turned to look over his shoulder at the boy he'd just met.

“Bye, Dylan! Bye! Bye, Dylan! See ya later!”

Dylan and his Mom and all the other Moms waved, and I wavde back with the papers in my hand, papers with hastily scribbled email addresses and phone numbers. I looked down at David – who had just became a sign of hope and didn’t even know it - and I smiled and said: “You’ve come a long way, baby” as I tweaked his nose.

And I realized – it wasn’t just him I was talking to.

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