Today is World Autism Awareness Day. Places are lighting themselves blue, blogs are shouting, and for this day we are asking for your attention.
“But it’s only ONE day.”
Sure, I get that. It sucks, because this is our everyday and why can’t it always get this amount of attention. Christmas is only one day, so is my birthday and I’m guessing yours. Everyone’s got battles and wars and if only there was constant attention on the sidelines of our battlefields, witnessing our struggles, needs and victories, but unfortunately we can only keep their attention for so long, and only ever for the biggest things. Only for the days and months given to us. So for this day Autism gets it’s blue light and people will talk. They will discuss numbers and philosophies and fears and victories. Autism is woven into the human experience for so many of us, but for others it’s just an idea without a face. Today give them that face.
“It is easy to forget how full the world is of people, full to bursting, and each of them imaginable and consistently misimagined.”- John Green, Paper Towns
This is Phoenix. He was born in May, which makes him a Taurus, which is actually quite fitting cause the kid is a bull. Stubborn as all get out, but oh, how affectionate he can be. I melt over those smiles and the way he just sidles up to me with sweet words for mama. Ever since he was about six months old all anyone could talk about was how big he was for his age. And he is. Giant-like. His father credits his Viking genes, which if you knew his father is just par for the course.
But here is this four year-old and he towers over the other kids in his class. It’s a little ridiculous, but it just adds to the Bear with the Golden Heart quality of him.
His stature also added to a lot of the questions when it came to his delayed development. Why wasn’t he talking? Did he understand others? Why wasn’t he paying attention or focusing on anyone? And his meltdowns felt ten folds when the three year-old I was trying to control in the middle of Target was so much bigger than the kids his age. What is wrong with that child?
There was always something to separate my child from others. Milestones, talking, attention, emotions, understanding. First there was a lot of excuses like, “He’s just shy!” when he responded so strongly to others or when he didn’t respond at all or play along as expected. There was the, “He’s from a a dual language household!” when he wasn’t saying words, or when he finally begin to say a few and they came out in his own Phoenix way.
Then I put on my big girl pants and I stopped pretending. I was doing this boy of mine a disservice by just waiting. I was in the Waiting Place not even knowing what I was waiting for, but I was just sitting there, shaking my foot, watching and waiting for milestones and things to catch up, until my son looked over at me with that smile that’s just for me and I said, “Okay, kid. Let’s get the hell out of here.”
So we’re in this new place. We’re not waiting, we’re just being and doing and chasing and laughing and yelling. We’re also having meltdowns, we’re covering our ears when it gets too loud, especially those really deep bass noises trucks and beat up mufflers always make. We’re running in circles, we’re banging drum sticks, we’re making dinosaurs roar, we’re repeating and repeating without much conversation, but we’re learning new ways to ask for things, and we’re singing Wonder Pets and pretending to be Power Rangers and we’re tickling Sissy and running into the lake where we kick up the water and grab the squishy sand because it feels cool. We’re celebrating good days and learning from bad ones, we’re going to A.skate clinics because they embrace the unruly bits about Autism with skateboards and acceptance, we’re cutting the tags out of our shirts because they itch, we’re climbing into Mama and Daddy’s bed cause its too dark at night, and I’m asking questions that don’t get answered, but we’re going to school with teachers who get us and we’re having evaluations and finding our best way to learn and teach and get through this world of wolves. We’re wrestling and we’re crying when things don’t go the way we expected and we’re yelling out No! a hundred times, and we’re pulling to go this way at the store because we remember that that’s where the chips are, and we’re out of breath but we’re laughing and celebrating because he’s just so damn charming, healthy and happy and these magic children are my greatest blessing.
So yeah, his name is Phoenix and you can find him on the Autism spectrum, but you can also find him running from one corner of this house to the other laughing and shouting, but you gotta be fast or you just might miss him.
But don’t worry. You’ll hear him from a mile away.