This being the last SI edition of the month, I’m coming in just under the wire with a quick Autism Awareness and Acceptance Month note.
I’d love to have an uplifting message for you about how autism is just a different ability, not less, or one of the other platitudes people love to spew from their unaffected homes, but that’s just not where I’m at this week. My beautiful, brilliant boy turns 9 this week and I love him with every fiber of my being. I would burn the world down for him. I wish I could change it entirely for him, but Lord knows I don’t have those powers. But tonight, I’m just tired. Deep down, in my chest exhausted, and I know so many autism moms and dads out there are feeling the same way.
Excluded. Ostracized. Alone. People can’t understand that we’d actually love to live out there in the world, again, but we have to keep their environment safe and not overstimulating as much as we can. We’d love to be watching him play T-ball, as much as we hate sports, just to see him interact with the other kids and feel a sense of accomplishment on his own. This week we’re working on independence in self-dressing. It’s not going the best.
We’d love to be planning summer vacations, but we have PTSD from all the eloping he did the last time we tried. We’ve undoubtedly lost years of our lives from that panic.
We want to see him succeed, whatever that may look like, but then we have to watch as the teachers and other powers that be lower that bar for him each year.
Not pushing for more, but settling for less. Not seeing our child for who we know he is and making us second guess what we do know. But unless an autistic child can master the art of masking, which is just pretending to be “normal” for everyone else’s sake, society doesn’t want him. And it’s absolutely heartbreaking.
Because I see a terribly sweet and dangerously smart boy with a photographic mind and a fierce stubborn streak. If he wants to figure something out, he can and will. Whatever is inside of him is yet to be determined, but it is vast and more complex than any teacher, therapist, specialist or doctor he has seen. He can teach himself Chinese, but teachers see him as unteachable.
I’m just so tired.
Just because I think it may help to understand what autism families go through, I’ll share this story about my scariest moment in this journey so far.
About a year and a half ago my mom had a stroke. While I always handle bed times and bath times, I had to stay in the hospital with her for several days while it was touch-and-go. After finally coming home to rest some, I was dozing off in my recliner while my husband was trying to catch up on laundry.
At the time, we lived in an upstairs apartment with the washer and dryer downstairs. We had a doorbell on the door that would go off every time the door opened and cameras with motion sensors at the door to alert us anytime anyone was at the door. My son had an AirTag on his shoes that he ALWAYS wore when he went outside. We had taken every precaution we thought we could.
As my husband when out to tend to the laundry, I heard the door open. It opened directly after that and I thought my son was following his dad, as he had done many times before. It couldn’t have been but just a few seconds since my husband went outside, so he must have been right with him. I dozed off, again, from days of very little sleep and so much stress.
A few minutes later I wake up to my landlord’s wife calling me. It made no sense at all. My child was running down the road, barefoot and wearing only ball shorts and a t-shirt (in November). He was maybe half a mile down the road, and thank God for small towns, but my landlord had stopped and was trying to stop my boy from running down the road any further. He ran from him. A crowd of five or six other cars, all men, also stopped, but he ran from them, too. A cop was called. He ran from him, too. A woman who lived up the road from us stopped and he finally took her hand.
I’m running down the road, yelling his name and still not understanding how he got not only away from us, but so far out of sight. Another neighbor stopped and told me he had seen him and gave me a ride down there.
Thank God for so many people watching out for my son when I couldn’t, but the thoughts of everything else that could have happened still makes me nauseous. I know I can do everything in my power to prevent it, but there will be times I’m stressed and tired and he will feel that energy coming off of me. He will notice the inevitable change in our schedules and it will affect him deeply. And I know when I’m not looking for half a second, he will hit flight mode so fast, running from a feeling like his life depends on it. Prevention is key, and getting out of my house now is a multi-step process that even I struggle with at times, but I know there’s no 100% fool-proof way to keep it from happening, again, and anyone who tells you otherwise just has been lucky enough to never have to find out how much control they don’t have.
Autism very much can be a disability, requiring so much more interventions and therapies to help them learn to live in a world not built for them. They often don’t see the danger in the world and elopement (running off) is very common.
And, speaking of common, so is autism. One in 31 8-year-old children in the U.S. are diagnosed with autism. It’s not caused by Tylenol or vaccines – those two have been heavily disproven – but we really don’t know what causes it. Most likely it’s a multitude of factors all lining up just so for autism to happen, but we don’t know why it happens for some and not others. Genetics seem to have a pretty big play in it, but with my boy, those tests all came back “normal,” so Lord only knows. Regardless of why, we do know there are many people with autism in this community and we all need to help make the world better for them.
Here’s the best way I’ve ever heard it explained: say you go outside and hear a bird chirping. At a one-out- of-10, it’s maybe hitting a two for you. You can tune it out. Same for a car driving by – maybe a four. The AC unit in the building next to you kicks on – a three. The wind is blowing, but you barely notice it, so you’d give it just a one. You’re still able to have a conversation with someone. If someone drives by with their music absolutely blaring at a 10, maybe until they passed you would have to stop talking. For someone with a sensory processing disorder, very common with autism, all those levels can be cranked up to 10. They often can be even hear electricity. They are so overwhelmed by everything they hear and feel that normal conversation and actions may be impossible. The rest of society just needs to accept who they are as they are, look out for them when they need a hand, and lift them up to achieve bigger goals than just existing. Because they can do great things, but the deck is sure stacked against them in today’s world.
To the other autism moms and dads, tomorrow will hopefully be better, but it’s okay to just be exhausted today. We’re not okay right now, but we’ll fight for advocacy more tomorrow.
