Autistic Child or Child with Autism?

Early in my career, I would use the term ‘autistic child’ when describing a case while writing papers. My wife, the speech pathologist ever so connected with her families, would always correct me that it’s a ‘child with autism’… the child has autism…. autism doesn’t define the child. I would change the wording to appease her but thought it was kind of silly, surely there’s no real difference in semantics. Well, I am realizing that I was wrong.

Not so much about the phrasing as I still maintain these are interchangeable; however, the sentiments behind the perception of children with autism are very real. I have long expected Caleb to be seen as autism incarnate by strangers when out in public. They don’t know Caleb and will not get to know him so it’s whatever, no skin off my back. What’s becoming more apparent is how close friends and family perceive him. To some, he’s Caleb this cool kid who also has autism much like other kids might have asthma or diabetes. Others see Caleb as autism, full stop, and all conversation must revolve around this. The fixation is not something I had anticipated.

Caleb’s godfather is a great example of not defining Caleb by his autism. Heck, I don’t think I’ve ever even heard him say the word autism over the past several years. This isn’t because he doesn’t know or doesn’t care, but rather that he’s just interested in Caleb being Caleb. Sharing a new word that Caleb just said doesn’t evoke the all too common response of “how many words should he be saying” or “that’s great but when will he talk normally?”. I really appreciate this and I know Caleb will too. He deserves to stand on his own without every action being constantly put under the autism microscope (not microscope with autism, Erin!).

The truth is that we don’t know what’s going to happen, and you probably won’t either with your child. The best we can do is to try our utmost to provide Caleb with all of the tools he needs and take one day at a time. Sometimes when Caleb does something awesome, Erin and I will say “Yeah! Take That, Autism!”. But sometimes, Caleb just needs to hear “Awesome, buddy!” and that’s it. He can be awesome on his own without needing his awesomeness to always be defined in relation to autism.

I don’t want to this sound critical, or even forbid, whiny. I really appreciate having friends and family who love Caleb and have his best interests at heart. I just don’t want them to miss out on Caleb himself though with the autism filter removed. The Caleb who enjoys sitting still while bird watching, figured out how to make his own roller skates out of toy cars, and has already taken a strong interest in helping me build with tools.

….He’s a pretty cool kid once you get know him.

 

Brian

It’s Hard Because You’re Doing It Right

Maybe you need to hear this today. Or yesterday, perhaps. Me? I need to hear it everyday.

I have a major pet peeve when I hear people say “I LOVE Autism!” “Autism is my PASSION!”. I’m a speech pathologist- I have a Master’s Degree based on my ability to utilize the English Language to convey specific meaning to my communication partners so yes- I get hung up on semantics. You do not love Autism. Maybe you love helping kids with Autism. Maybe helping families who just received a diagnosis is your passion. But you do not LOVE Autism. If you do, then you and Autism have never met. Cause Autism sucks.

My kid? Nah- he’s perfection on a silver platter. But my kid is not Autism. It’s just something he happens to have.

Back to the “Autism sucks” stuff. It does. And all the feelings we feel as parents of children with Autism? Those suck too. But let me let you in on a secret- having those feelings means you’re doing it right.

The punch to your gut that makes your stomach flip five ways to Sunday when you realize you can’t stop pretending “nothing’s wrong” or “he’ll come around”? That’s ok. It means you care about your child and the challenges he or she will face and the future that awaits them. You wouldn’t feel literally nauseous to your stomach, barely able to get dressed to go to your Developmental Pediatrics evaluation if you didn’t care what the future holds. I describe that so vividly because I lived it. Twice.

The exhaustion you feel that makes you feed your children tortilla chips for dinner and watch an extra episode of Clifford the Big Red Dog so you get an extra 23 minutes to “just be?” It’s because you have made a commitment to your child and took them to back to back speech and OT appointments, met the ABA therapist right after, and stopped every two hours to keep your child on their sensory diet. You’re exhausted because you’re putting every ounce of energy you have into making your child as successful as they can be. I tell people all the time that going to work is the easy part of my day. When I get home is when the real work begins. Parenting a child with Autism and making the right moves at the right time is the most challenging thing I’ve ever done.

The almost paralyzing frustration you sometimes feel that suffocates you and literally makes it hard to breathe when someone says the wrong thing or gives the wrong look at the wrong time in the grocery store? It’s because you love your child unconditionally and would walk through fire to never have to have them know how ignorant some people can be. Loving someone this much is exhausting. But incredibly rewarding.

This isn’t a negative post. It’s actually the opposite. It’s intent is to put a positive spin on all the feelings I described above. You feel those feelings because you’re doing this right. If you weren’t worried about your child, didn’t care if he reached his maximum potential, and didn’t want everyone to recognize how AMAZING of an individual your child is, then you’d never feel sick to your stomach, you’d always get a full night’s sleep, and you’d be oblivious to jerks in the cereal aisle at Costco.

Keep on keeping on, mamas. (And daddies, aunties, grannies, mammies, pappies, big bros, little sis’s- whoever you are, keep on trucking). I won’t tell you to “Keep Calm” because that’s impossible. Just keep on. If you need to cry or yell or curse along the way- that’s fine. Just. Keep. On. You’ve got this. Because you know there’s too much at stake if you don’t.

You’re doing a great job. I’m here for you. I believe in you.

Love,

Erin

 

I Notice That You’ve Noticed

These days, when I’m out and about , I notice that you notice. You notice that there’s something different about my son. Because he’s 4. He’s not a little kid anymore. Plus he’s also the height of a 1st grader so that makes it extra confusing. Regardless, you notice that he’s quiet or that he needs a lot of redirection or that we step out for a few minutes sometimes to have a sensory break. Because when he was younger it was easy to blame him not looking at you or saying “hi” from the shopping cart on him being tired. But now, he’s too big to sit there. So we take two carts. And daddy and Ari shop from one and Caleb and I use the other to play. Nothing in particular. But we stay in one spot and just simply practice being in stores and doing things typical families do and I understand how we have to go about that looks a little different.

Did you see us at Fenderz and notice that Daddy had to take Caleb outside two times to walk around in the grass while we waited for our food? Thanks for not prying or judging but simply offering him a pack of crackers and extra crayons. But did you also see us this past Saturday at El Parral and notice how we sat nicely from start to finish and didn’t mind waiting or sharing our food with sissy? We have successful days and we have challenging days. But we never stop going places. Because we won’t learn and grow if we’re home bound. And I have developed a strong ability to have blinders to people around us when we’re out so don’t bother shooting your judgy eyes my direction because I won’t see them. I’m too busy helping my kid.

We’ve taken up residence at the skating rink recently. Caleb and his sister like it there. I like it there. Maybe it’s because it doesn’t feel like we stick out like a sore thumb when we’re there. The music from the DJ booth is loud and you can’t talk over it so no one notices that he’s quiet. He laughs and plays games in the arcade like other typical kids. But mostly, I love that he’s the youngest one out there skating without help because it’s hard to find things when we’re around typically developing kids that he’s the best one at. And it’s not a contest. It’s never a contest. It’s a marathon, not a sprint- I know and believe all of those cliches. But I’ve gone 4 years watching everyone else’s kid lap mine developmentally and it’s nice to see mine rocking it. That’s fair. Yesterday we skated for an hour and a half and for that time we were out on the rink, it felt like Autism was locked up in the rental locker with our tennis shoes. Sometimes, it’s nice to just have a minute to breathe.

So, ironically, the skating rink, with it’s loud music and flashing disco lights, is where we find our peace. I don’t notice people noticing anything because there’s not much to notice. And it’s ok that eventually we turn in our skates and walk to the car and sometimes have a tantrum because all of a sudden we stop and realize that we’re tired and thirsty and that’s a lot to have to process and communicate for a kiddo like mine. And we go back to being noticed (especially by the cashier in the Wendy’s drive thru as we try to order Frosties while Caleb screams from the back seat). But it’s easier to turn everything back “on” when we got 90 minutes to skate away our worries while Katy Perry serenaded us at the roller rink.

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I hope your family has its own happy place too 🙂

Love, Autism, and roller skates,

Erin