1 in 54.
More likely in boys.
Celebrated once a year for an entire month dedicated to raising awareness and acceptance.
Autism.
When your son is diagnosed at 2.5, the gap seems small. There’s a few things here and there that you start to notice- it’s why you even had the appointment where he was diagnosed. Nobody tells you that eventually the gap begins to widen, that for awhile you might not sleep really at all, that even though you created this small human it feels like you have no idea how to relate to him, how to communicate with him, or how to help him. That at 3.5 for the first time he’ll tell you goodnight and you’ll be reduced to a puddle of tears. That when you introduce legos into his life, it’ll be the beginning of learning how he sees the world.
Autism.
Nobody warns you that you’ll spend nearly an entire year of kindergarten waiting for the day he’ll come off the bus and actually tell you what he did at centers. That you’ll go through a 25 pound bag of rice in 2 weeks- because it’s one of the only foods he’ll eat, and he eats it in large quantities. That when he loses his first tooth, you’ll have no idea because- well he has no idea what happened to it. Nobody tells you that a good therapist (speech, OT, or ABA) can change everything- for both of you. Nobody will tell you to trust your gut- or if they do, they’ll encourage you to trust the experts- who are experts on autism, not your kid with autism. Nobody wants you to be the one who rocks the boat.
Autism.
The cliche goes that families of children on the spectrum celebrate and observe autism awareness and acceptance all year long- not just in April. And to be honest, I roll my eyes a little bit when I read the statement, although I suppose its true. Autism is so deeply woven into the fabric of our family at this point, it’s hard to remember a point in our lives before. We’ve managed to surround him and ourselves with others who don’t see a diagnosis and a kid- they just see a kid.
What does autism acceptance look like?
For us- it’s a best friend who invites him to her birthday party, even if he’s the only boy. It’s her going out of his way to make sure he’s included, and going to bat for him. It’s spending money on a red bird cake, even though you know he’ll never in a million years touch it, because that’s all he wanted for his birthday. It’s buying the day old bread from Jimmy John’s- because he loves it. It’s buying all the red hoodies, because we all know red is the ultimate color. Its friends who throw a lifejacket on him and coax him into the water on a blazing hot August day, patiently and intentionally talking him through swimming. It’s iPads and xboxes, and recognizing that somehow this kid might have more world knowledge than I do when he teaches me things like the meaning of yeet. It’s buying playground balls knowing they’ll never be used outside because bouncing a ball around the entire house is way more fun. It’s having friends who ask what they can do to help make him more comfortable when he’s at their house. It’s declaring a Turtle Day- and going all in, wearing the onesie, visiting the turtles, and coming home with a new plush turtle. It’s french friends and half moons (pot stickers), and bananas and Bob’s Burgers because “IT’S THE FUNNIEST SHOW EVER!” It’s him nailing the “Work” in Hamilton’s “The Schuyler Sisters” because he’s heard it ten thousand times thanks to a slight obsessed sister. It’s declaring Daddy to be “THE WORST DRIVER EVER” when he takes a roundabout too hot and French fries spill everywhere.
Autism.
It’s some nights with no sleep…okay, it’s a lot of nights with little or no sleep. It’s trying to stifle laughter when he yells that the drop off line at school is TAKING TOO DAMN LONG, or when he pokes a classmate and tells her he is BEING ANNOYING when she asks why he did it. It’s pizza Fridays, and pajamas and the willingness to just be who he is….all the time.
I still remember sitting in the room at Mary Bridge when Dr. Tripp told us “your son meets the criteria for an autism spectrum disorder diagnosis.”
I said okay.
It didn’t change anything that day.
It’s changed a lot of things since.
I used to wonder where we lost him…to try to find the moment. I felt like if I could pinpoint it, it would change something. I never found it, and it wouldn’t have changed a damn thing if I had. Just like his brown eyes and scrunch nose smile, it’s a part of him. It’s a part of us.
Today, April 2nd is World Autism Awareness Day. This day has shifted for me personally since the first year we were officially a part of this community- the 1 in 54. I wanted people to learn what it was like for us, to be raising a small child on the spectrum. I wanted to stop the stares at playgrounds, and in grocery stores. I wanted him to fit in the box. I realize now that the box that he lives in is so much bigger and more vibrant than I ever imagined it could be.
So today, we celebrate- a little dude who came along and challenged the status quo, loves bigger than most adults I know, and has the best sense of humor in the entire world. We celebrate the challenges, because they’ve pushed us to grow. We celebrate the victories, because we’ve built a network of people who are right here with us cheering us on. We celebrate the opportunity to bring people along on this journey with us- because he’s ours, but in sharing him with all of you- I hope you can see him and hear him for yourself.
So maybe it is all about autism awareness after all.
ahoybluesailor.com 