“Erin, why are you doing this?”
That question would be better rephrased as: “How could I NOT do this?”
It’s been exactly one year since “Take That, Autism!” was an idea in my head. 12 months since I bought the domain. 6 months since I put the first idea on paper and 2 months since I was brave enough to make the first post. That 1 year mark of “Take That, Autism’s!” existence is significant not because it’s the night I asked my husband to buy me the things one buys when they want a website, but because the night I thought of “Take That, Autism!” and the night I got my husband to get out his credit card on a whim, is also the night I proclaimed to the world about my son having Autism.
Close friends and family had had a year to process and accept Caleb’s diagnosis but I never eluded to it on Facebook because….boundaries (if you can believe I have any). I had thought about making a post about it before but never quite found the way to say it how I wanted to say it. I wasn’t sure if my husband wanted it declared….I didn’t know if I wanted the questions- both the ones of genuine interest AND the ones driven purely by curiosity. But what happened was I reached a point where it wasn’t a matter of what I did or didn’t want to post, but instead, what I needed to post. This is how it came out on Facebook:
“I’m Caleb. I like Potato Head, Little People, puzzles, books, and coloring. My FAVORITE thing is to play piano. I enjoy eating french fries, shrimp, yogurt, pizza, and granola bars. Summer is my favorite because I get to go swimming and I’m pretty much a mer-man. I have a daddy I’m obsessed with, a mommy who’s obsessed with me, and a sister who mom and dad say we need but no one asked for my vote. I have an endless backyard, my own room, and lots of dogs too.
I also have Autism. I like the same toys as other kids but sometimes I play with them a little differently at first. I try to use my words but it takes me more time to get them. I could play all day long but I may not always want to play with someone else.
You can feel lots of different ways about that if you want. It’s cool- mom and dad have. Me too. Sometimes I’m sad when daddy leaves for the day cause he’s part of my routine and I LIKE my routine. Sometimes I’m mad when mom puts on the wrong episode of Backyardigans. (Why hasn’t she learned “Samurai Pie” IS functional vocabulary?!). Most times though, I’m happy. I’m the happiest, most confident, affectionate little boy you may ever meet.
One thing you should never feel is “sorry” for me. Or my daddy. Or my mommy. Maybe sissy when she takes my goldfish crackers though. I’m here, happy, and healthy and that’s more than a lot of other people. Plus my mom is a pediatric speech pathologist with unlimited connections to resources and professionals- we’ve kind of got this on lock.
So, if I pop into your head later, think of me as the sweet, silly kid who likes nachos, basketball, and Christmas carols. (Who also HAPPENS to have Autism). And if you ever feel like you need to talk to my mom, send her a message. She literally spends all day with someone with Autism whether it’s a patient or her son. She doesn’t have business hours- you can talk to her anytime. It’s not all the time that you can speak to a professional in the field who is 100% honest when they say “I understand.” My mom might throw a “sista’ friend” to the end of that cause she thinks she’s cool but don’t let that take away from her credibility.
Thanks for taking the time to read all the way through and I’ll be sure to check back in with you soon.”
Check out that last paragraph you guys- that’s my why. I remember this time last March I told my husband that I thought I could help people. That I found myself in this unique position of being a professional who works with children with Autism and in my personal life I was the parent of a child with Autism. The only difference between me and you is that I haphazardly picked a major in grad school while browsing through the course catalog that gave me a set of tools that happened to specifically match up with the specialized care my child was going to need. I could have just as easily decided to major in accounting or graphic design. No one runs around with a z-vibe and articulation worksheet when they’re 6 saying “I want to be a speech pathologist when I grow up!”. I chose it because it seemed practical, it was in demand, and the classes seemed interesting enough. How fateful did that turn out to be? And I just felt like maybe I was supposed to take this unique position I found myself in and go out and do something with it. Plus, if you’ve read my Intro Post then you know a few months before we realized Caleb had Autism I had overcome a brain hemorrhage, hemorrhagic stroke, high risk C-section, and brain surgery so yeah- I was feeling a little carpe diem.
That whole bit may have sounded self promoting but I don’t mean it that way. I’m the first to tell you I’m not a parenting expert and I’m not an Autism expert. But I do have a knowledge base that is valuable and I also have the ability to understand. I understand the hard days. I understand the uncomfortable feelings you sometimes have in public. I understand the worry about maybe never being invited to a birthday party. I understand that it’s not just sometimes the little things….it’s always the little things. They’re all we’ve got, really. And so when someone tells me that something they read here helped them cope, gave them something to relate to, gave them words to a feeling they couldn’t describe- that is unequivocally, absolutely my why. Because how in the world can anyone ever do this alone?
No, I don’t feel like I’m exploiting my son. I don’t worry one day he’ll be upset that his entire life- including the struggles- has been documented online for anyone to know about. I don’t have concerns that someone will read it one day and hold it against him. Because I hope that when the day comes when he understands what it means to be an individual living with Autism that we will already have instilled the confidence in him to be proud of everything about himself. That he will have the luxury of perspective because he will have had his story told, chapter by chapter- so when he ends up where he’s going to end up, he will appreciate the journey it took to get there. Also, he’s becoming more verbal by the day, and I’ll teach him the EXACT things to say to anyone who has anything unsavory to say about anything.
So, here I am- one year later. I know on paper I’ve just gotten going but in my head, we’re doing big things together one day, you guys. That’s right, all of us. Because maybe “it takes a village” to raise a typically developing child, but for a child with Autism, it takes the whole dang continent. So, let’s unite. Let’s do it up right. I know sometimes it feels like “the struggle is real”….but if we’re in it together, it really doesn’t have to be.
Love and Autism,