It occurred to me recently that there was a time when April 2nd was just…April 2nd. 

I mean I knew about autism awareness day or whatever we’re calling it now or may have called it then, but it was just another day. It’s not even that it’s more than just a day now, but it’s the fact that the universe seems to stop for a second and focus on something that’s a part of our lives on the daily. Something about that makes it feel bigger, makes it feel like an occasion to be marked. I’ve been thinking for a few weeks about what to write, what to say about April 2 this year. I thought about all of the things that have changed for him over the last year, I thought about how it’s becoming increasingly hard to capture the magic that this kid is in words. I thought about how having the front row seat to watch him navigate life is one of my favorite things in this world. I thought about how being his person is an incredible honor. I thought about how he’s changed all of us for the better. I thought about how being his mom, more than anything else in my life, has taught me who I am as a person. I thought about myself in 2013 on April 2nd, before autism took a seat at our family table. I thought about who I was then, and what I would tell that version of me.

 I think it’d go something like this. 

Dear Emily, 

In eight months you’re going to have a giant meltdown at a Christmas party. What will transpire over the next two weeks following that meltdown will change the trajectory of your entire family’s lives for, well the rest of your lives. 

Your heart has been right all along. There’s nothing wrong with him, but he’s going to need some help and support and more love than you think you’re capable of giving him, but I promise you’re up to the challenge. The diagnosis itself won’t surprise you because the signs are all there and you probably have known this all along. You’re going to spend a lot of time filling out tons of different evaluations for him, learn lots of new words like proprioceptive and what the heck is a CVC word although to be honest that one will take you longer than you care to admit. Pretty soon there will be people in the house all the time, but they’re there because you’re doing the best for him. Therapy is going to become essentially a full time job and you’re going to question whether you’re doing the right thing for him but I can assure you that you are, without a doubt. You’ll spend time in and out of hospitals looking for a variety of medical things like staring spells and eosinophilic esophagitis. You’ll continue to approach all of this like you always have things in your life: with kindness and empathy, and looking for solutions. Love the people who are coming into your life- these therapists? They will love the shit out of him. It doesn’t matter how much he screams in their faces, tells them no or refuses to do the task they’re asking of him in the manner they’re asking of him. They will love your kid like he’s their own. And you’re going to get super attached and a little bit traumatized when they move away, but I promise he gets better at making these kinds of transitions as he continues to get older. (And you will still get to keep them in your life, too) Don’t be afraid to ask them questions, trust their judgment, and learn from their experiences. His sleep will never be good, but it gets better. You will learn to survive on a combination of caffeine and humor. I mean it’s hard to get mad at a little dude who loves his momma an extra amount, right? You will learn to follow your heart. School, friends, nutrition, doctors- eventually they’re going to start to understand him. And The school thing…it works out. Kinda beautifully. But it’s hard, and you’ll cry in IEP meetings and sometimes you’re not sure if it’s really the right thing but I promise you, it always is. 

Don’t get so caught up in the therapy and the questions of whether you’re doing the right thing that you start to lose sight of this beautiful kid. His sense of humor will make you laugh so hard you cry on a regular basis. He’s got plenty of thoughts and opinions and eventually he will not shy away from sharing them with, well everyone. 

He’s going to be okay- no, he’s going to be more thank okay. You will build this network of people around him who love him for who he is, and eventually he learns to trust and let them in. 

It’s hard right now- but some day, he’s going to insist on going to the classroom next door to say happy birthday to his friend, he’s going to drop an exceptionally well placed f bomb in the middle of the special ed classroom, he’s going to fall in love with the bar down the street from your house, you’re going to make it through and IEP meeting without tears, and the conversation is going to shift from teaching him how to fit into the world to how to make the world work for him. 

This is going to be hard, you’re going to struggle. There’s not a lot of services around here, and that problem doesn’t get fixed any time soon. But you’re strong, and you’ll keep going and this darling boy who feels like a huge puzzle to you right now is going to look at you with his giant brown eyes one day and tell you to PLEASE STOP TALKING I AM ONLY ASKING YOU ONE DAMN QUESTION and then you’ll laugh so hard it hurts but also wonder how the heck you got to this point? 

It’s a lot of work, but this family? We’re bulletproof, you’ll learn. We love bigger than anybody, actually we do everything big. 

He’s eleven now. Smart as hell. Complicated. A homebody, loves his routine. He’s got an emotional support water bottle. (Not kidding) The only two swear words he uses only a regular basis are damn and f- and we’re calling that an improvement. He loves football. Yesterday I walked into the room and he was watching Hard Knocks on NFL Network. Today we were watching pickle ball and he was not impressed. He’s really bad with names, but loves hanging with familiar friends. Last week he hung out with a seven month old baby and loved him- and the feeling was mutual. He eats about 20 cups of rice a week, I think. We finally got him to take ADHD meds and that has been one of the best things that has happened to him. Today we celebrated Fake Easter because Ken and Riley are going to be gone next week and all he wanted was an AppleTV and he’s been on cloud nine ever since. He eats more apples in a week than most people do in their entire lives, I think. Some time over the last year the conversation has changed from how to make him fit in to school or social situations and instead we’re meeting him where he’s at and making curriculum or situations work for him, and holy shit that’s the best thing ever. He still loves the Float and we still go every Friday. He’s the luckiest dude in the world because those big brown eyes have been drawing people in his entire life and to know Seton is to love him. 

So chin up, Emily. This is the beginning of an incredible adventure, and I promise you’re ready for it. 

Love, 

Emily 

So happy April 2nd. 

Here’s to a world that works to accommodate people with special needs, rather than making them feel less than. 

Here’s to a world where kids are supported and not segregated. 

Here’s to a world where people aren’t mad, they’re advocating. 

And here’s to this little boy who has changed our stars, and I’m thankful for that everyday, not just on April 2nd.