You've come a long way baby
Originally posted by amenquohi, here.
It was Saturday, 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 is $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 Friday morning: “BOUNCE FOR AUTISM 10-2 SAT”. Bouncing? For a cause I have a direct relationship to? I’m 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 Nazi. Do I think vaccinations play a part in autism? Maybe. For some kids. But not for all. Not for mine, I know. Tony 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. It didn’t. But I do know of autistic kids that did better on a gluten and dairy free diet. I also know kids, like Tony, 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’m not about to get into a militant discussion of stringent therapies and offer to protest vaccination clinics, but I am willing to talk to this woman, this woman who has a son trapped as mine is trapped, and offer her my support, my shoulder, and just plain let her know she’s not alone. I head over and introduce myself to her, and to the two other mothers she’s standing with. They all have newly diagnosed children, two boys and a girl, ages 2 ½ to 3, and they’re all, quite frankly, terrified.
What if their child never gets “better”? What if they can’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 should have gotten a different colored tee shirt, if it would have made a difference. It is what it is, and our job, rotten and hard as it is, is to work through what it is to what it will be. Whatever that is. The hard part is, you know this is a lifelong journey for us, and for our children. That lifetime can stretch before you endlessly some days.
Just then, Tony runs by and I grab him by the hand, pulling him over to me. His attention is a million miles away. He wants to bounce, not talk. I make him talk anyway.
“Tony? Tony, this is Miss Andrea. And this is her son, Dylan. Can you say ‘Hi’ to Dylan?”
Tony glances at Dylan for a nanosecond, raises his hand and says “Hi Dylan! Mommy! I bounce!”
“I know, I saw you bouncing! Are you having fun?”
“Fun Tony! I bounce!” He’s trying to pull away, so I let him go. He runs a few steps, then turns back to me. “C’mon Mommy! Mommy! Bounce!”
“In a minute, Bubby. Mommy’s talking.”
“Bounce, Mommy!”
“Five minutes. Okay, Tony? Five minutes.”
He holds up a hand, showing five fingers. “Five minutes,” he repeats. “Bye!” And he’s gone, chasing after his sister, screaming her name.
I turn back to the other women, and they’re staring at me. I wonder 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 breaks the ice.
“You just had a conversation.”
She says it like it’s hard for her to believe, and suddenly, I was spiraling back in time, to two years ago, when I wouldn’t have believed it either. Two years ago, that kind of back-and-forth was something I’d only hoped and dreamed we’d someday be doing. And now here it is, someday, and I take it for granted. I shake 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 smile. I smile big.
“He called you ‘Mommy’”, says another mother. The longing in her voice cuts into me. “Mine can’t even say ‘Mommy’.” Her voice catches and she looks up at the fluorescent lights, blinking hard. I step forward, wrap my arms around her and I say “Oh, honey, he will. He will, and it will be so worth waiting for. I promise.”
We chat 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’s time to go, and as I’m rounding up the kids, I see a very tired, very frustrated mother at the end of her rope, her child in front of her on the floor, locked in a tantrum of epic proportions because he spilled water on his pants and can’t bear the sensation of an inch-wide wet patch on his leg. She looks up apologetically and says “I’m sorry….he’s so loud, I know.” I smile gently and I say “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 thanks me for my understanding, and gathers him in her arms, crooning and rocking and trying to distract him. No one rushes forward to tell her how to parent her child or what she should do to fix this because we all know that our kids are all individuals, and that Mom knows what works and what doesn’t. It’s kind of refreshing being with a group of people who get that.
I manage to get Tony’s coat on him, which is no easy task because he and Bella are so busy tickling each other and running in circles around me. I can barely get him to stop long enough to do it. We head for the door and he turns to look over his shoulder at the boy he just met.
“Bye, Dylan! Bye! Bye, Dylan! See ya later!”
Dylan and his Mom and all the other Moms wave, and I wave back with the papers in my hand, papers with hastily scribbled email addresses and phone numbers. I look down at Tony - who just became a sign of hope and doesn’t even know it - and I smile and say: “You’ve come a long way, baby” as I tweak his nose.
And I realize - it isn’t just him I’m talking to.
It was Saturday, 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 is $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 Friday morning: “BOUNCE FOR AUTISM 10-2 SAT”. Bouncing? For a cause I have a direct relationship to? I’m 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 Nazi. Do I think vaccinations play a part in autism? Maybe. For some kids. But not for all. Not for mine, I know. Tony 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. It didn’t. But I do know of autistic kids that did better on a gluten and dairy free diet. I also know kids, like Tony, 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’m not about to get into a militant discussion of stringent therapies and offer to protest vaccination clinics, but I am willing to talk to this woman, this woman who has a son trapped as mine is trapped, and offer her my support, my shoulder, and just plain let her know she’s not alone. I head over and introduce myself to her, and to the two other mothers she’s standing with. They all have newly diagnosed children, two boys and a girl, ages 2 ½ to 3, and they’re all, quite frankly, terrified.
What if their child never gets “better”? What if they can’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 should have gotten a different colored tee shirt, if it would have made a difference. It is what it is, and our job, rotten and hard as it is, is to work through what it is to what it will be. Whatever that is. The hard part is, you know this is a lifelong journey for us, and for our children. That lifetime can stretch before you endlessly some days.
Just then, Tony runs by and I grab him by the hand, pulling him over to me. His attention is a million miles away. He wants to bounce, not talk. I make him talk anyway.
“Tony? Tony, this is Miss Andrea. And this is her son, Dylan. Can you say ‘Hi’ to Dylan?”
Tony glances at Dylan for a nanosecond, raises his hand and says “Hi Dylan! Mommy! I bounce!”
“I know, I saw you bouncing! Are you having fun?”
“Fun Tony! I bounce!” He’s trying to pull away, so I let him go. He runs a few steps, then turns back to me. “C’mon Mommy! Mommy! Bounce!”
“In a minute, Bubby. Mommy’s talking.”
“Bounce, Mommy!”
“Five minutes. Okay, Tony? Five minutes.”
He holds up a hand, showing five fingers. “Five minutes,” he repeats. “Bye!” And he’s gone, chasing after his sister, screaming her name.
I turn back to the other women, and they’re staring at me. I wonder 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 breaks the ice.
“You just had a conversation.”
She says it like it’s hard for her to believe, and suddenly, I was spiraling back in time, to two years ago, when I wouldn’t have believed it either. Two years ago, that kind of back-and-forth was something I’d only hoped and dreamed we’d someday be doing. And now here it is, someday, and I take it for granted. I shake 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 smile. I smile big.
“He called you ‘Mommy’”, says another mother. The longing in her voice cuts into me. “Mine can’t even say ‘Mommy’.” Her voice catches and she looks up at the fluorescent lights, blinking hard. I step forward, wrap my arms around her and I say “Oh, honey, he will. He will, and it will be so worth waiting for. I promise.”
We chat 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’s time to go, and as I’m rounding up the kids, I see a very tired, very frustrated mother at the end of her rope, her child in front of her on the floor, locked in a tantrum of epic proportions because he spilled water on his pants and can’t bear the sensation of an inch-wide wet patch on his leg. She looks up apologetically and says “I’m sorry….he’s so loud, I know.” I smile gently and I say “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 thanks me for my understanding, and gathers him in her arms, crooning and rocking and trying to distract him. No one rushes forward to tell her how to parent her child or what she should do to fix this because we all know that our kids are all individuals, and that Mom knows what works and what doesn’t. It’s kind of refreshing being with a group of people who get that.
I manage to get Tony’s coat on him, which is no easy task because he and Bella are so busy tickling each other and running in circles around me. I can barely get him to stop long enough to do it. We head for the door and he turns to look over his shoulder at the boy he just met.
“Bye, Dylan! Bye! Bye, Dylan! See ya later!”
Dylan and his Mom and all the other Moms wave, and I wave back with the papers in my hand, papers with hastily scribbled email addresses and phone numbers. I look down at Tony - who just became a sign of hope and doesn’t even know it - and I smile and say: “You’ve come a long way, baby” as I tweak his nose.
And I realize - it isn’t just him I’m talking to.