The other day, my 9-year-old son Andrew, who is severely impacted by autism, did something amazing.
For the first time in his life, he read. It wasn’t a book, or a chapter, or even a sentence.
It was ONE word: Harold. The name of his favorite character from his favorite show, Thomas the Train.
Before the thick tears were finished rolling down my face, I took to my Facebook and Twitter accounts to announce the good news, because what good is social media if you can’t use it to spread this kind of joy, this kind of hope, this kind of HOLY CRAP moment? I took a snapshot of the giant flashcard I had made, and included the following caption:
“To you, a piece of paper with a random name on it. To me, the very first word I’ve ever heard my almost 10-year-old son read. DO YOU HEAR THAT AUTISM? I’m going to teach my son to read, so SUCK IT.”
The congratulations began to pour in immediately because I have an awesome village filled with amazing friends and family who knew that this was something worth celebrating. I rejoiced in the promise of what this miraculous turn of events could mean for my non-verbal child and the idea that he could someday be literate and able to READ just blew my mind in the best of ways.
My cell phone interrupted my runaway thoughts, alerting me that I had received a new twitter message and I smiled as I reached for it, anticipating yet another sweet outpouring of support.
Instead, I was met with a tweet from a gal who had a bone to pick with me:
“Did you just tell autism to SUCK it?”
I informed her that yes, in fact, I had and that I had meant every word of it. She proceeded to tell me how terrible and hurtful and insensitive I was being, that she had autism and that my statement was an insult to her and everyone on the spectrum and that I really needed to rephrase my sentence.
I’m sorry. WHAT?
Now, I don’t need to tell those of you that are parenting a child with autism that ours is a polarized community. We often disagree on the causes of and treatments for autism, and much like our children, no two families dealing with the ramifications of this disorder are truly alike. But what I think most of us CAN relate to is a feeling that even though we “accept” our child’s diagnosis, we spend our days and nights dedicated to trying to GET RID OF IT because – now bear with me for a moment here – autism, the kind that sneaks up on our kids and steals their voices and stifles their creativity and assaults their tender and sensitive sensory systems and holds their bodies and minds and emotions hostage, SUCKS.
I have spent eight years now watching my little boy fight against the current of this very fast-paced world. His life is filled with CAN’Ts and WON’Ts and PROBABLY NOT’s. From the moment Andrew wakes up until he lays his head down at night, he is in the fight of his life to learn how to pee on the toilet, brush his teeth, put on his pants, climb the stairs, participate in school, connect with his peers, communicate his needs with means other than the speech he lacks, and do all the things that so many of us take for granted each day. I watched the light go out from his eyes at 12 months of age and I have fought tooth and nail since then to turn it back on, even when others told me there was little hope, even when I spent the first few years drinking myself numb, even when he didn’t even know I was in the room with him.
So forgive me if, when he does something EXTRAORDINARY like read a name on a giant homemade flashcard, the first thing I think after the initial euphoria wears off is SUCK IT AUTISM. I have EARNED the right to say that. I have endured enough helplessness and heartbreak and hurt to be able to not only give autism the finger, but tell it to sit and spin while it’s at it.
This is NOT THE SAME as saying that people with autism suck. My son has autism. My son most definitely does not suck. In fact, he’s amazing, funny, loving, beautiful, inspiring. But he’s also being held hostage by a disorder that comes in many shapes and sizes, a disorder that in our house, is not a welcome guest but rather a selfish and thoughtless intruder. The fact that I do not embrace autism as something to be romanticized or adored does not mean I do not love the bejezus out of my son. I also realize that autism is a part of who he is, has shaped a portion of the person he has become and continues to be. But if someone handed me a guaranteed cure tomorrow, I wouldn’t hesitate one nanosecond before shoving it down his throat. I would risk losing a portion of the little boy I love so fiercely and unequivocally if it meant that he would have a chance at navigating this life without the bondage of autism.
Because that’s my job as his mom; to put his needs before my own and what he NEEDS is someone who sees his autism for what it is: a thief of dreams and potential, a ruthless foe that does not deserve a peace treaty.
There is an entire community of folks on the spectrum who denounce those of us who seek funding for research and attempt to implement the newest medical and behavioral interventions in an effort to help our children. They criticize our efforts and accuse us of ableism and twist the love and hope and promise we hold for our children into something ugly and misleading. They wonder why we won’t just embrace our babies for who they are and celebrate the uniqueness that comes with their autism.They make our plight to salvage what is left of our children’s future look as if we are questioning the worth of everyone with an autism diagnosis and they point fingers and sling insults without having walked a day in our shoes.
Honestly? It’s a bunch of BULLSHIT.
I invite those of you who consider me an ableist for telling autism to SUCK IT to come into my home and spend a day with me and Andrew. I invite you to see the reality that my child lives with as he struggles against the silence that blankets him, falls apart when those around him don’t understand his needs, and begs for mercy when the sights and sounds of life come bearing down upon his ears and nervous system. I want you to see the drooling, hear the teeth grinding and the desperate wails, watch as he wills his body to keep up with his younger brother even though he doesn’t stand a chance.
This is what our version of autism looks like.
Then I want you to watch as I scoop him up into my arms, bury my face in his neck, and whisper my unending love for him into his ears. I want you to look into my eyes as I am forced to implement therapeutic strategies that were taught to me by strangers — even though all I want to do is crumble beneath the strain of our reality — and witness the determination I have for making my son better. And then, after a particularly difficult day, I want you to watch as I hold up a giant flashcard with what appears to be a random name on it and urge my little boy to tell me what it says. I want you to wait with me for what seems like an excruciating amount of time, and then hear as he fills the air with the most perfect combination of vowels and consonants while he READS for the first time in his life.
I will cry and dance and laugh and hug and then I will point two middle fingers towards the sky and tell autism to SUCK IT.
This is not about acceptance and respect and it most certainly is not about YOU. No matter what you think of me and how I choose to fight this fight, I am not the one you need to worry about when it comes to knowing that you are worthy and that you matter and that you are fabulous just the way you are; just because I want something more for my son, doesn’t mean I think any less of you. This spectrum is wide and diverse and your experiences are probably vastly different then mine and so if you want, we can continue this stupid song-and-dance of who’s right and who’s wrong, or we can just peacefully agree to disagree.
But make no mistake. When my child defies the odds, shows autism who’s boss, meets previously unimaginable milestones, performs even the tiniest of miracles, and courageously defies his limitations, I’m not just going to tell autism to SUCK IT, I’m going to do what a good friend of mine suggested and kick it right in the balls.
Recent special needs columns by Jo Ashline for The OC Register: