How I Cured the Autism Problem in Our House

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When my son, Dominic, who has autism, was 4 years old, he ate nearly every piece of a foam puzzle while I was in the shower. He seemed fine enough when I came out, looked at me with his round, cornflower eyes blinking. He wasn’t the least bit distressed.

But I was pretty flipping upset.

“Why did you do that?” I asked him, the fear in my voice palpable.
He looked unconcerned but turned his little head up to me.
“What do you think you are, a goat?” I asked him, the frustration in my voice palpable.
He looked at me, still no expression.
Here’s what he was probably thinking: Her face is much prettier from far away. 
Here’s what he said: Nothing.
Then again, he did have autism and couldn’t speak.
I shook my head at him firmly. “NO!” I said, pointing to the pieces of chewed up foam that remained. “NO EAT!”
He shook his head in imitation. Then again and again.
He was still shaking his head when I wrapped him and his brother in their snowsuits and drove to the Children’s Emergency Room.

Doctors there determined the foam wasn’t going to cause him much harm, but they admitted him to the hospital for a day of observation. Maybe they just felt sorry for me and thought I could use a break. Pregnant mom shows up with two toddlers in her arms, one with severe autism who has a penchant for eating plastic — you throw her a freaking bone, right? I didn’t have the heart to mention I had a 6-year-old daughter waiting to be picked up from school or perhaps wandering the streets of our neighborhood by that time. Sometimes people can only take so much.

While Dominic was in the hospital, I asked nicely for a psychiatric consultation. Well, I kicked my feet and pounded my fists on the ground and threw a major temper tantrum, but then, after people began to stare, I decided to use my words. The resident said the Child Psychiatrist probably wouldn’t be willing to come.

Luckily, the resident was wrong.

Since Dominic was diagnosed at age 2, we’d seen therapists at school and community mental health. We’d seen psychologists and social workers and speech professionals. I was desperate and afraid I wasn’t doing enough, giving enough. I spent some days huddled up in the corner of the kitchen, so paralyzed by the daunting task of fixing Dominic’s behaviors that I, too, was flapping and jumping and rocking. Other days I was developing complicated systems of therapy, aimed at resolving the finger waving, the moaning, the rituals that slowed him down and kept him from my vision of living. But we’d never seen a child psychiatrist, and I had so many questions.

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The doctor was brisk without being bristly, matter-of-fact in the most consolatory ways. He said lots of things that day that left Dominic’s father and me with a mixture of understanding and fear. It was the first time someone spoke harshly, honestly to us about our son’s condition, a condition that was just starting to infiltrate ever corridor of the media and overwhelm our functioning.

“Your son has classic autism,” the child psychologist said. “There’s no cure. Anyone who tells you they cured their child of autism didn’t have a child with autism. It’s that plain.”

And instead of sadness, I felt relief.

It seemed OK to me suddenly, to stop fighting the demon then. I couldn’t see the demon after all; how could I tell how big and sharp his teeth were? I was sick of my invisible enemy. It was running my life.

It was going to be a battle that would only defeat us in the end if I didn’t find a way out; I’d known this but didn’t want to admit it.

And something worse had been nagging me for months, something I didn’t like saying then and I know makes people uncomfortable to hear me say now. But the truth is, Dominic didn’t seem to really mind being autistic. In fact, he kind of seemed sort of… really… happy.

So from that day forward, I stopped trying to cure my son of who he is.

This doesn’t mean I didn’t send him to occupational or speech therapy. It doesn’t mean I didn’t find him the best school or tell him “No” when he’d jump up and down in the middle of the family room, while the other kids were trying to watch “The Goonies.” I still believed in therapy and supports. I still believed in giving him the best.

It just meant that I began to expect from him only as much as it was possible for him to give me.
Frankly, I just tried to — still try to — help Dominic be the best Dominic he could be.

What it meant most of all is that I stopped trying to banish the autism from Dominic’s life (or my life) and just started letting my son live with it.

It was a part of him, just like his blue eyes and love of eating all things foam.

And that’s the story of how, instead of shadowboxing the unseen enemy, I invited autism in for tea — but only if he agreed to be on his best behavior.  

And it feels nicer this way for me. I understand it can’t work for everyone. Maybe letting go of fighting the diagnosis for some parents would leave them with a powerlessness. Maybe some people would see this as giving up, as being weak.

I just see it as getting on with things.

And I don’t mind if other parents don’t think this is something they can do. I just don’t want to have an argument over the whole thing. The autistic community is fractured over so much already.

Me, as a mom, accepting Dominic’s diagnosis isn’t a cause for debate. There’s already too much cause for debate. Aren’t we really are all the same?

We are, collectively, the moms of the flappers, the jumpers, the wanderers, the pickers, the groaners, the moaners, the kids that makes people stare and laugh and feel sorry for us.

Divisiveness over vaccines and diets and acceptance — those are just ways to get sidetracked, red herrings meant to divide us. Let’s just agree to disagree sometimes.

Doesn’t that feel better?

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This post originally appeared on Don’t Hate the Player, Hate the Game.

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When I Started Eating Lunch With My Classmate With Down Syndrome

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Differences surround us. They can define us. They can hurt and separate, shape us and inspire us.

In fifth grade, the last thing most people want to be is different.

That’s when I met Caleb, as we were waiting for the bus to take us home. Caleb was obviously ready for the school day to be over; he kept saying, “Bus, bus, bus.” I was unsure what to think at first, but I knew, much like me, Caleb wanted the day to be done. But that seemed to be where our similarities stopped. He was unlike most of the other fifth graders I knew.  

Caleb has Down syndrome.

He spent most of his time in a different classroom than the rest of the other students. He often sat in a different section of the cafeteria. He spoke differently; he acted differently.  

But our differences didn’t scare me. In fact, our differences brought us together.

Around this time, I became involved in the Adaptive P.E. program at school. The program was voluntary and allowed me to work with my peers with special needs. I definitely wanted to be a part of it. Not only did I enjoy the program, but I learned more about Caleb.

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Every day at lunch, I would sit with him. I thought this would be tough at first, because I was unsure how to interact because of our differences. But it was actually fun. After lunch, I would walk Caleb to P.E., and we would play together. We would bowl. We would dance. We would laugh.

And I began to look forward to spending time with him.

Others didn’t understand what was on Caleb’s plate, like I did. Others judged him. They looked at him with strange faces. They excluded him from activities.

One day, at recess, this all changed.

Caleb and I ventured outside to play soccer together. I assumed the game would only be the two of us. But much to my surprise, all of the other kids joined us. And this time, no one judged Caleb. No one made fun of him. No one left him out. It was Caleb’s soccer game, and I stood in amazement and happiness when I noticed the other kids give Caleb the ball and let him score. 

Caleb has taught me that it’s OK to be different. He’s reminded me to treat others the way I want to be treated. I know, without a doubt, he is out in the world somewhere, teaching others this same lesson.

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My Son Did Something Naughty… and My Heart Swelled With Joy

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IMG_6746 I’ve been to many parent/teacher conferences. I have three typically-developing children — well-behaved, high achievers. In these later years of their schooling, I’ve received a lot of forms with “No conference necessary at this time” checked off. In the early years I went in to confer with teachers, who, to my surprise, never wanted to talk about the sheer wonderfulness of my darlings. There was always a problem. Most of the time the problem was talking in class.

“I’ve tried him in every seat in the room,” my oldest’s first grade teacher complained in her beautiful Irish brogue. “Finally I put him in the back and he talked to himself!”

It was the same with my two daughters. All I could do was say how sorry I was that they were disrupting the class, promise to talk to them, and do so. Then I waited for maturity and the passage of time to do the real work. I myself was often written up as the chatterbox, my name chalked on Mrs. Turtur’s blackboard circa 1976.

Now I have a son in kindergarten who doesn’t talk — or walk or see. When I go in for a conference (and it’s always necessary) I already know we won’t be discussing his sheer wonderfulness. The life and education of a special needs child is a continual problem-solving process, and I’ve become a de facto member of the Child Study Team.

Last year I went in to meet with T’s TVI (Teacher of the Visually Impaired). They’d been working on nesting and stacking cups. T uses an adaptive activity chair with a tray in these sessions, and Miss R. told me when he grows frustrated with the activity, T pushes the cups off of his tray with a sweeping arm motion.

“But Mrs. V. [my son’s aide] has gotten very good at catching the cups in mid-air and putting them right back,” Miss R. assured me. “So… lately he’s started throwing them backwards over his shoulder, instead.”

We looked at each other for a moment, and then I burst out laughing. Miss R. did too.

“I know… it’s wonderful, isn’t it?” she said. “So typical for his age, so creative…”

“So naughty,” I filled in.

It’s so hard for T to make himself known as a person in the world. At home we know him well, but it’s hard sometimes for us to understand what he wants and needs. He has only a few signs and sounds he uses to communicate. He relies on others to move him around and bring him things. We make so many decisions for T, and many of them are guesses.

I never expected that my heart would swell with joy when I heard my little boy was doing something naughty. I went around bragging about it for days. He’d given me the gift not just of rebelling against something, but finding a new and better way to rebel when thwarted. Sometimes, when I worry, I take that memory out and picture Miss R.’s impression of T tossing a cup over his shoulder with determination and aplomb.

Naughty — but also very nice.

The Mighty is celebrating the moments we gave or received a gift that touched our lives in a special way. If you’d like to participate, please send a blog post describing this moment for you. Include a photo and 1-2 sentence bio to [email protected].
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The Holiday E-mail All Parents of Children With Special Needs Should Read

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Ah, the holidays…

They always end up being so hectic and stressful. Add a child with autism in the mix and things become even more chaotic. I wrote to our therapist about my daughter, Lila, and Christmas. The truth is, the gifts mean nothing to Lila. She couldn’t care less. Know what she wants for Christmas? Her balloons and ping pong balls and for Mommy and Daddy to be at home playing with her.

We all have these preconceived ideas about the holidays and what they should look like. Baking cookies with our children, watching their eyes light up while we explain Santa and the reindeer to them, listening to Christmas music, decorating the tree together, having a picture taken with Santa, looking at Christmas lights, visiting family, all while our perfectly wrapped presents sit under the tree. And we don’t stress – we just enjoy the holiday season, right?

Is that really how it is for anyone? I have my doubts. You know… we’ve already re-arranged our entire lives for Lila and her autism, but for whatever reason, it never occurred to me we could flip the script on the holidays as well. Our SoonerStart therapist, Janet, sent me the following in an e-mail. I genuinely believe it’s something all parents of children with special needs should hear, so I wanted to share it with you:

There are so many social norms and expectations surrounding the holidays. It’s like there’s a big book of items that are stereotypical and everyone feels if they aren’t ticking off a certain number of them, they aren’t doing it right. So many holiday things are hard for people with ASD. Different foods/cooking smells, longer travel times to infrequently visited homes with unfamiliar people and a different schedule, things you can’t touch, sitting on Santa’s lap, opening gifts, more shopping trips, all the forced social interactions, I could go on and on…

This is a great opportunity to ditch all the “normal” expectations and start to develop BETTER, new, fun ways for you all to do the holiday thing. Free yourself from all that garbage and follow her lead. You can celebrate in an AUTHENTIC and true way to your family. Your special twist on things will mean so much more to her than ANY gift. It’s kind of exciting and freeing isn’t it – to get to rewrite the book and tick your own things off? You are going to have a much better time than a lot of “normal” families. Makes you almost feel sorry for them… 🙂

So, please take that advice and do as you wish with it. I hope it helps you and your families like it has helped me. Our holidays won’t ever be what typical families would consider normal, but maybe – just maybe — they will be even better. Happy Holidays and much love to all of you and your beautiful, different little families!

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This post originally appeared on Dancing With Autism.

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I Would Have Made an Awesome Soccer Mom

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I had a few hours of free time on Sunday, and because I lead a very sexy life, I used the time to clean out my pantry. It’s a little room off my kitchen that has, over the last six years since my son came home, transitioned from a cute, chandeliered office/pantry to an enter-at-your-own-risk-I-can’t-be-responsible-for-what-falls-on-your-head room. It was time.

Photos, party supplies, glue guns, three coffee makers, expired cupcake mix – I sorted and filed and moved and tossed. I was on the last shelf when I yanked down a big, big box marked “ice cream social.” Huh? Two things: one, why do I have a huge box marked “ice cream social”? And two, I don’t even remember being the person who had time to appropriately label stuff in my pantry.

I opened the box, and inside was everything you need for the coolest kid party ever. There was a shake maker, snow-cone machine, cotton candy spinner and a cake pop baker. Long-handled spoons, ice cream bowls and a bright table cloth with ice cream cones printed on it. At the bottom of this box — the cherry on this surprise sundae — was a lime green pedestal that held six small bowls for ice cream toppings. Sitting in the middle of the spinning pedestal was a ceramic cupcake with a removable lid for hot fudge or caramel or strawberry sauce. It was summer and Pinterest and laughing children in one clever serving piece. It was darling.

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I wanted to throw the darling cupcake as hard as I could against the wall.

Instead, I sat down next to the box called “ice cream social” and cried.

I remember this stuff. I bid on it at a silent auction years ago, back when ice cream socials and impromptu play dates and birthday parties had starring roles in my parenting plan. Back before I knew that my son’s meltdowns were not a phase and back when I thought he played by himself because he was shy. Back before I had any idea that I would not be a soccer mom but a special needs mom.

What I have here is a box full of plans for a kid I don’t have. Some days, like today, it makes me sad.

I was crying for my son, but I’ll admit I was also crying for me. Instead of six different ice cream toppings always on hand for my son’s friends, I have an endless supply of pens for his therapists. Instead of being the house that everyone comes to, we are the people that are never home. Instead of bike rides, we have speech therapy; instead of swim parties, we go to OT.

Do I begrudge this? Not ever. But is this what I planned? No. Every once in a while, not very often, but every once in a while, I give myself permission to grieve for the life I don’t have, to think about the mom I don’t get to be.

I wrapped up the cupcake and put it back in the box. One day. Maybe. In the meantime, the sweetest boy in the world was on his way home. As moms go, I think I’m doing OK. Ice cream socials are fun, but my son needs a mom with a backbone, some fight and a strong voice. I’ve got that.

But just so you know, I would have made an awesome soccer mom.

Sincerely,
Becca

This post originally appeared on Sincerely, Becca.

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When My Daughter Graduates High School, This Is (Part of) the Speech I’ll Make

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unnamed (22) When I was much younger, I used to practice my Oscar speech. You know the one: “I’d like to thank the Academy…” 

These days I dream about a much different speech.

My husband and I often talk about how cool it would be to throw a party when our daughter graduates from high school. We’d invite every single therapist, teacher, aide, doctor, friend, relative and anyone else who has helped her (and us) along the way. Annabel has Dup15q syndrome, which often comes with a variety of developmental disabilities and challenges including autism, seizures, hypotonia as well as anxiety and sensory disorders.

She’s only in second grade, mind you, so we’re going to have to rent out a stadium. I’ve already started preparing my speech.

Here’s what I have so far:

Thank you to Annabel’s first therapist, who set the tone for all her future therapies. You had incredible energy and a no BS attitude that proved to us Annabel could be pushed through her stubborn streak.

Thank you to Annabel’s preschool teachers who greeted her with open arms and made school a far less scary place for Mom and Dad.

Thank you to my best friend who called me every single day for at least two weeks after we got Annabel’s diagnosis, just to check in and let me vent or cry or not talk about it at all.

Thank you to my brother for teaching Annabel the history of rock and roll.

Thank you to the girl from Annabel’s school I ran into last summer. You asked how Annabel was doing, and it melted my heart because Annabel just isn’t on most of her peers’ radars.

Thank you to Annabel’s principal who wears the best ties and lets Annabel carefully study them every day.

Thank you to our neurologist who confirmed what we knew — that Annabel is smart and more than capable of learning how to change her own behavior.

Thank you to every occupational, physical and speech therapist, who despite being kicked and slapped and bitten, sat in meetings and told us how much they adore our girl, how they love working with her and how much they’ve learned from her.

unnamed (23) Thank you to every parent who has ever seen me struggling with Annabel when she’s having a hard day and given me a smile or a nod or an “I get it” look.

Thank you to our family for supporting us wholeheartedly and unconditionally.

Thank you to Annabel’s soccer buddy who told me in her sweet teenager way that she admired how much I love my girl. It made my night.

Thank you to Annabel’s one-on-one aide who, for the last four years, has guided Annabel through the ins-and-outs and ups-and-downs of school, who’s guided me through classroom dynamics and school politics, who’s loved Annabel like her own. We will be forever grateful to you.

Thank you to my husband, who kept his promise to me the night of Annabel’s diagnosis — that we were going to do something good with it.

Thank you to Annabel’s brothers, who have shown patience, compassion and understanding beyond their years.

Thank you to Annabel for teaching us how to be the strongest, most patient, most badass parents we can be.

There are and will be countless others, but this is a good start.

It will be an enormous party.

The Mighty is celebrating the people we don’t thank enough. If you’d like to participate, please submit a thank you note along with a photo and 1-2 sentence bio to [email protected].

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