Autism Acceptance Month

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Reza (age 6) loves being pushed on the swing

I originally posted this on Facebook and have been meaning to add it here on my blog. Happy April!

It’s Autism Acceptance month and I want to tell you about autism at our house. I’ve had the hardest time writing this because I don’t want to sugarcoat it and ignore the struggles, but I also want you to understand how amazing it is at the same time.

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headphones!

Autism at our house is getting to witness pure joy, the kind of untainted undiluted joy the rest of us can never quite reach. But my son experiences it daily. Autism is dimples and squeals and chanted echolalic songs. Autism is music and vibration all over our house and everywhere we go. Tapping it, tasting it. It’s his language, the one that comes naturally to him unlike ours. Autism is movement. It’s running free, climbing high, it’s bare feet and unashamed nudity as the world rushes by and he cants his head to capture the dizzying beauty in his peripheral vision. Autism is being hand-led to whatever he needs all over the house. Autism is him taking my hand to run it over his skin, his way of asking me to lightly scratch his back and arms. Autism is the way he sometimes looks into my eyes, and it’s so rare that it feels like a jolt to my heart, like I can’t even breathe because it’s so intense. Autism is feeling over the moon with pride and joy every time he conquers something new, no matter how small or odd it may seem to an outsider.

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Rain dance

 

But autism is also anxiety and sensory overload. It’s him not understanding or feeling in control of what’s happening to him. It’s melting down with no control over the spiral, lashing out with teeth and flailing limbs, it’s banging his head. It’s being awake for days. It’s an inability to trust unfamiliar foods or tolerate triggering textures. It’s working ten times as hard as other children but still falling years behind them in developmental and academic skills.

 

 

 

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singing to the mountains

Autism isn’t easy. But it is worth it. My son is the brightest light in any room. His eyes are full of stars and I just wish I could see what he sees. He is a six year old who has never performed a deliberately malicious act in his entire life. Neurotypical kids do mean things deliberately just to be mean from the moment they figure it out as little toddlers. It’s heady, a rush. But Reza never has. It doesn’t even occur to him. He’s the purest most beautiful soul I’ve ever met. Even when he’s lashing out in a meltdown, kicking and biting, it’s never malicious. He’s never trying to hurt anyone. He’s panicking and terrified and trying to rescue himself.

He’s so strong and so much fun to be around, even when he’s driving us nuts he still makes me smile.

 

 

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Reza on his 6th birthday

A world without autism would be such a loss. Like sucking the light and color out of our human diversity.

Autism is hard. I wish my son didn’t have to go through its hardships. But autism is who he is, he is Autistic. It’s what makes him shine so bright, no matter the difficulties along the way.

At our house, autism is celebrated, and autism is home.

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A Realm of Music

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My boy exists at once in overlapping realms.  He is here, but also in another place, a place where I cannot follow.  His realm is a realm of music.  As it overlays my own, I can sometimes glimpse its edges, sometimes make out a silhouette.  I catch something in the corner of my eye; I reach out and feel it like a mist against my hand before it slips away.

This is not about hearing and listening, this is not about sound or song.  This musical realm is so much greater than that.  It is, at its core, a place of vibration.  The vibrations are a music that my boy can feel, taste, touch, hear, and see.  It is a multisensory language in which he is perfectly fluent.  He can create it with his hands, his mouth, his feet.  He can chew it; he can pound it into vibrant existence; he can shout it, howl it, screech it; he can blow it, click it, whisper it.  He can measure it, map it, and sometimes he can use these calculations to approximate the verbal speech of my world.  Sometimes.  When the music moves him to do so.  Sometimes.

You hear him making strange and senseless noises, but I know different.  I hear him singing joyously the song of the microwave’s hum, of the vacuum’s roar, of the truck’s engine, of the chirp of someone’s cellphone, the shriek of the kitchen timer.

I see him chewing gravel and feeling, listening to the crackle and grind in his inner ear.  I see him dumping coffee beans on the floor to orchestrate a wildly raucous staccato, like heavy rain on a tin roof.  I see him slapping tiles and bricks and walls and windows, licking them too, in a symphony of feeling, hearing, tasting, seeing.

My boy is master of his realm.  He is its conductor, its composer, its musician, and often, its instrument.  He firmly rejects what does not belong in his song.  “Come sit,” we say, but his song is a song of movement.  “Eat this,” we say, but it doesn’t taste of his song, it does not crunch in his mouth like the percussion of his orchestra.  “Do this,” we say, but it is often irrelevant to his music at best, a painfully discordant note at worst.

Sometimes our world combines magically with his, playing a delightful harmony to his melody.  He joins joyously, laughingly, exuberantly with us.  He learns what we offer him, and uses it in his song.  His song grows with him and he is growing, growing.  He is blossoming.  We see him and he is rhapsodic, glorious, ebullient.

Never change, I think, never change, I pray.  You are perfect.  You are indomitable.  You are my own sweet swan song.  

Reading List

I wanted to learn about other children like my son.  I wanted to see a glimpse of the future in one of their stories.  I tried half a dozen books and was unable to finish any of them.  Either they described children years older than my then-18-month-old son, or were filled with content that made me furious at the parents (who were the authors) and sick with grief for their children.  I tried There’s a Boy in Here, in which the mother recounts spanking her toddler son over and over, harder and harder, because she couldn’t get a reaction from him.  I tried Carly’s Voice, in which the parents openly treat their daughter as less-than, refusing to believe in her no matter what.  I tried to get through that one, but when Carly’s parents remove her from their home and place her in an institution where she is subsequently sexually abused I just couldn’t anymore.  

I didn’t understand these books, these parents.  I didn’t understand all the 5-star amazon reviews full of people sympathizing with these apparently long suffering parents.  There was a rhetoric of broken, lost, or missing children surrounding the Autism literature I encountered.  I didn’t feel that way about my son.  I would look into his beautiful face, his unfocused, far-away gaze that seemed at once unfathomably wise and tenderly innocent, and to me he was nothing less than absolutely perfect.  

It was entirely by chance that I stumbled upon an Autism documentary called Loving Lampposts.  This film changed everything.  At last I found voices that echoed my thoughts- individuals who did not believe their children were lost or broken.  As I watched the film I googled the names of individuals interviewed whose comments resonated with me.  In this way I discovered what I had been looking for- books, articles, and stories from a place of love and acceptance.  I read Loud Hands, a book written by Autistic adults from all across the spectrum.  I read Not Even Wrong and Unstrange Minds, written by two of the individuals interviewed in Loving Lampposts.  I read Stanley Greenspan’s Engaging Autism, and I discovered the Autism Discussion Page.  I read Ido in Autismland, I found blogs like Diary of a Mom and Emma’s Hope Book.  And of course, I read several of Temple Grandin’s books, which led me to Tito Rajarshi Mukhopadhyay’s poetry and then his book, How Can I Talk If My Lips Don’t Move?.

I can’t express how valuable it was to find these books.  I was given incredible insight into how my son’s mind works and what might be good ways to support him.  I didn’t agree with every single thing I read, but I appreciated each perspective, and they all helped me find my own place in the confusing and often hostile intersection of Autism and parenting.  And when I say hostile, I am referring to the “Autism wars” you may find yourself inadvertently sucked into when you have an internet connection and an opinion on anything Autism.  

So if you’re out there, a confused, worried, hopeful mom or dad with a newly diagnosed Autistic kiddo, here’s MY reading list- web links and all- happy reading!

Oh, and before you start reading, check out Loving Lampposts:  http://amzn.com/B004UEQABK

Note: these are not in any particular order, so browse and choose any reading order that appeals to you.

Loud Hands: Autistic People, Speaking by Julia Bascom et al http://amzn.com/1938800028

The Autism Discussion Page by Bill Nason:

ADP Facebook page-

https://www.facebook.com/autismdiscussionpage

ADP Books-

http://amzn.com/B00MU028TE

http://amzn.com/B00MVR6B5I

Neurotribes by Steve Silberman http://amzn.com/B00L9AY254

Not Even Wrong by Paul Collins http://amzn.com/B002STNBYS

Unstrange Minds by Roy Richard Grinker http://amzn.com/B0097DHTIM

How Can I Talk If My Lips Don’t Move? by Tito Tito Rajarshi Mukhopadhyay http://amzn.com/B00CKXAAKK

Ido In Autismland by Ido Kedar http://amzn.com/B00AOUN01W

The Autistic Brain by Temple Grandin http://amzn.com/B009JWCR56

Diary of a Mom blog: http://adiaryofamom.com

Emma’s Hope Book blog: http://emmashopebook.com

Respectfully Connected blog: http://www.respectfullyconnected.com

I want him.

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After a tough outing the other day, I was thinking, as we drove home, how much I wish there was a magic pill to cure my son’s anxiety.  I was nearly salivating at the thought.  I would cure his anxiety in a heartbeat.  But I have always been in the camp of parents who don’t want a “cure” for his Autism.  And before you accuse me of saying so because I must have a “mild” kiddo I’ll disclose that R is very impacted by his Autism.  He carries a level 3 diagnosis.  He is not “mild” on the spectrum.  He is less abled than the large majority of his same age Autistic peers.

But here’s the thing:  Autism isn’t just the sum of his challenges.  Are there things I wish I could change for him?  Things I would “cure” for him?  Absolutely.  Would I be willing to re-write his entire neurology, personality and all, to achieve that end?  No f’ing way!  Autism is so much more than just the sum of his challenges.  I see Autism when he smiles and giggles, reaching out to touch something my eyes have missed.   I see it when he moves his body in joyful, wondrous rhythms.  It’s in the fact that he has, in his 3 short years, never tried to deceive anyone, never once acted with malicious intent, no matter how angry or frustrated he might be.  It’s how he is the happiest, most cheerful child I’ve ever met despite the hardships he faces.  I look at his beautiful smile, his whole body bursting with joie de vivre, and I think: this is Autism.  This is as much Autism as any of his challenges.  This is who he is.  I don’t want a different child.  I want him.