I couldn’t have anticipated the significance April 2nd would hold to us.
But at the same time- I struggle with the need to have a day dedicated to “world autism awareness and acceptance.”
Because for a lot of us- (1 in 52 remember) the awareness and acceptance of autism happens every day, sometimes every hour of every day.
On Friday nights when he’s hanging out with us.
Not a birthday party, not a sleepover, or a weekend trip with a friend’s family.
Our Saturdays are usually wide open. There’s not an out of town baseball tournament or early morning soccer games.
He doesn’t get invited on play dates.
And that’s okay- truth be told, I think the time we get to spend with him is an incredible gift. To have the front row seat to the intricate workings of his mind and heart? That’s something incredible.
But today, on this April 2nd- the thing that’s burning in my soul isn’t the need for awareness or acceptance of autism.
It’s about the inclusion. More specifically the lack of inclusion.
The dictionary defines inclusion as “the practice or policy of providing equal access to opportunities or resources for people who might otherwise be excluded or marginalized, such as those who have physical or mental disabilities and members of other minority groups.”
Inclusion isn’t hard, and it shouldn’t be complicated.
Inclusion is NOT being told by a recreation department when you email and ask about enrolling your autistic kid in their soccer program that maybe you should contact Special Olympics because their program won’t be a good fit.
Inclusion is NOT being told that your kid can’t attend the new school in town because the special education program that he needs to support doesn’t exist at that school, despite the fact that the school was touted as being meant for out of the box learners and has a different learning approach that you feel like he would thrive in.
Inclusion is when his kindergarten teacher sent me a photo every day of what he chose to participate in at center time so that we could have the conversation about what happened at school every day after school, just like his peers would have with their parents.
Inclusion is when we signed him up for t-ball at six and ended up with the most incredible coaches who met him with grace and patience, despite the challenges that come with trying to get a kid with less than stellar joint attention skills to pay attention to a ball being hit.
Inclusion is when his teacher chooses to involve him daily in writing his homework in the planner, and writes his specific homework on a post it note and has him copy it from there rather than the board because his homework can look a little different, but she wants to ensure that when he’s in her classroom, he has access to the same activities and routines that his peers do.
Inclusion is when a huge corporation like Disney provides a pass for people with disabilities allowing many families (including ours) the chance to take our family on a Disney trip that we couldn’t do successfully without it.
Inclusion is Nike making tennis shoes that don’t requiring ties in sizes larger than preschool.
Inclusion is meeting these kids where they’re at sometimes, and not always looking for the easiest way to do it. Sometimes inclusion takes more work, more patience, and a little more time, but damn these kids deserve it. And the typical kids that are in these scenarios with them deserve it too. They deserve the chance to learn that not everybody thinks the same, looks the same, acts the same- but no matter what, they all the deserve the chance to be a part of something.
I’m glad to be here, in a place where inclusion is a discussion. But what I want- what most parents of kids with disabilities want? We want action. Stop talking about it. Do things to make it happen. I promise, it’s worth it.
He’s 10 now. Almost 10.5, I guess. He’s getting taller, more opinionated. I think he’s getting funnier, but my guess is that the wit has always been there and is just flowing out more freely now than before. He’s a video game expert. He can order for himself at a restaurant. (Okay, maybe he can only order for himself at The Float.) He can do math mostly in his head, like 2 and 3 digit multiplication. He doesn’t get your jokes usually because he’s the most literal kid I’ve ever known. (he told me yesterday that April fools day is the dumbest day ever) He still eats half moons for breakfast and jumps at the chance to have French fries. He’s still got the art of a well placed f-Bomb down, and hasn’t done it at school in awhile. (#littlevictories) He’s become the biggest hype man ever, often saying COME ON YOU CAN DO IT! I BELIEVE IN YOU. YOU JUST HAVE TO TRY HARDER. He’s learning to advocate for himself. He now prefers slides over Crocs, which I guess has been a long time coming. The other day he invited our friend to come to The Float with us and when she said she couldn’t, he said COME ON JULIE JUST GET YOUR SHIT TOGETHER AND COME TO THE FLOAT, which I’m pretty sure should be their new marketing slogan. He’s got the best sense of humor, and occasionally still the most erratic sleep schedule. He’s incredibly hard to say no to. Being his mom is one of the best things that’s ever happened to me. I’m grateful for the shining examples of inclusion that have happened to us throughout this journey, and for everyone who has been a part of showing us what that can be and what it can look like. And I’m grateful for that, and remain hopeful that we can be a part of moving that forward, whether it’s April 2nd or not.
#ahoybluesailor


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