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.

Dear NT psychologist: Look Me in the Eye

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Photo taken on a beautiful spring day in April.  My boy adores the swing!

We recently participated in a research study about how children with intellectual and developmental disabilities and their families experience feeding and mealtime issues.  To be eligible for participation in the study, the child must meet the criteria for ID (intellectual disability, formerly known as mental retardation).  Along with his ASD diagnosis, R carries a DSM-V diagnosis of GDD (Global Developmental Delay), which is the DSM equivalent of ID for children under the age of 5.  We signed up for the research study knowing he would qualify.

At the first meeting with the research team, they had their own clinical psychologist confirm his eligibility by conducting several cognitive tests (the same kinds of tests R has had administered countless times in the past, and through which his original GDD diagnosis was ascertained).

When the psychologist and her assistant finished, there was much whispering about the final scores and furtive glances my way.  I caught the occasional ominous sounding word and gathered that he had obviously met criteria by a large margin.  The psychologist and her assistant clearly did not want me to overhear how “bad” his scores were.  After finishing up the paperwork from the testing portion the psychologist gave me an apologetic face as she quickly confirmed “so yes he meets criteria,” then awkwardly excused herself and left our home, as her part was finished.  Her entire demeanor was strained, apologetic, and awkward.  She practically screamed non-verbally “Please don’t ask me for a copy of his scores!  I do not want to see your reaction to them!”  The assistant quickly squirreled away the cognitive testing packet and scores and hurriedly moved on to explaining how the study itself would be conducted.

This is not the first time we have seen this type of reaction from professionals in the field.  It angers and insults me every time.  Do they think we are unaware of our son’s delays?  Given his slew of diagnoses, doesn’t it occur to them that we’ve been looking at scores and reports for 2 years now and there is nothing new about it?  Yes, we know our son tests below the first percentile in every single developmental category.  Yes, we know his cognitive skills are estimated at about a 9 month old level. Yes we know that he has no measurable (key word measurable) receptive language, no consistent words, and few functional communication skills.  Yes we know that he still cannot use a utensil, or roll a ball, let alone throw, kick, or catch one.  We know all of this.  Much of it is burned into my brain, an utterly useless list of taunting “can’t”s, a litany ground into us every 6 months or so when yet another evaluation is proposed for one thing or another.

It is insulting that these people think to spare us.  Not only because of the implied ignorance on our part, but because it also implies that there is something very sad about our child, that surely we couldn’t handle these facts emotionally as his parents.  Sometimes it is sad.  Sometimes it does hurt.  But our son is just another kind of human.  As I tell my children, there are so many ways to be a human.  This is his way.  It does not make him less.  It does not make him a tragedy.  It does not make his future any less bright.  Like all children, and I will say again ALL CHILDREN, he has limitless potential.  Limitless.

I like a psychologist, doctor, teacher, or therapist that can look me straight in the eye and tell me matter-of-factly what the results of the evaluation are.  Then move on to what that means for how we are going to tweak our plan of care and educational goals for R.  These tests aren’t about defining R.  These tests are simply point-in-time macro-scale snapshots of his development.  That is it.  There is no reason to tip-toe around me when you evaluate my child and behave as if this silly piece of paper in your hand has doomed him for life.

You know what that piece of paper does not show?  All the things he will do in a more comfortable environment among familiar people.  All the functional things he does, in his own unique unorthodox way, that you would not be able to translate but those who know him closely could.  All the things he understands but cannot show his understanding of.  All the things he is learning slowly in a particular way, but which he cannot yet generalize to you and your slightly different testing materials.  All the things he does spectacularly well that the test-makers never thought to include as a skill– such as unscrewing light bulbs, scaling refrigerators, and carefully blowing extraordinarily long strings of spit bubbles that don’t fall apart.  I mean really, imagine if the test read “Can your child unscrew 3 light bulbs?” Instead of “Can your child stack 3 blocks?”  And really, the light bulb thing is a major feat, the product of almost 2 years of OT for fine motor.  There was a time, just 6 months ago, when our boy could not unscrew a simple child-friendly top on an infant/toddler toy, let alone a light bulb from a fixture!

That piece of paper also does not show the laughter.  The smiles.  The adorable dimples.  The joy; my God the joy!  This is a joyful child.  This child is going places.  We don’t know where, and it is sure to be somewhere unconventional, but we believe in him and we know when he gets there it’s going to be amazing.