Far from her once-normal life, her world became IEPs, therapies, meltdowns, sleep deprivation, poop, door locks and barricades—and stress, loneliness and isolation.
“I will always love him desperately, but nothing can stop the pain and loss and fear for the future, both his and mine.”
By Claire Swainson
Yesterday, August 6th, my son Daniel turned 18 years old. Every year around Daniel's birthday I feel the same heartache. What should be an exciting day for my child means nothing more to him than any other. He doesn't care about presents or a party. He doesn't have friends. He likes the same things he liked when he was in preschool. Instead of giving him money—or whatever typical teens would want at that age—I’m shopping in the little tot section of the toy store or on a special needs website for "oral motor" stimulation toys.
I am about to say some things that many in my position wouldn't dare. If I am judged harshly for that, so be it. After all, it is only fair to tell the other side of the story. The one that doesn't appear to belong on the autism community websites and never makes headlines. The side that isn't about breakthroughs or savant talents. So here goes.
It is lonely and isolating to have a child like Daniel. This same routine, like a choreographed dance.
When Daniel’s bus pulls up, it starts. He wants a "forest"... a stick. But only one off the tree in front of the house, and only the ones that are "just right" will do. And oh, that's right, the tree no longer has any that can be reached without a ladder. But you can't tell Daniel that because he doesn't "get it." So instead, he follows us around the house repeating "WANT FOREST!" for hours. Literally.
Then he wants to "go for a ride." That is "Daniel-speak" for going to get fries at McDonald's. Again, he repeats "Want to go for a ride!" while following us around until we have either given in or mentally snapped from exasperation. We have had to nail the windows shut because he turned to climbing out the window and roaming naked when he couldn't get out of the locked doors. Now we are dealing with his newest and grossest fascination to date: smearing and playing with feces. He turned 18 years old yesterday, and I'm cleaning more poop than I did when my kids were babies. It is never-ending. Mind-numbing. Heart-breaking.
In this madhouse isolation, I don't recognize the person I've become. Sure, I have made a couple of failed attempts at returning to employment and a semblance of that life. But they are just that. Failed attempts.
I can't relate to those with typical kids anymore, and most of my friends seemed to disappear within a few years of Daniel's autism diagnosis. My world became IEPs and therapies. Obsessions and meltdowns. Sleep deprivation and toileting accidents. Door locks and barricades to keep my nonverbal child from "eloping." Puberty with a child who still functions as a toddler. Doesn't converse or answer questions. Still watches Nick Jr. and PBS Kids.
As autism parents, we are charged with responsibilities that far exceed any others. While I will continue this dance with Daniel for as long as I walk this earth, and I will love him desperately while doing it, nothing can stop the pain and loss and fear for the future, both his and mine. I miss my life, my friends, and honestly, I miss me.
Claire Swainson is a reluctant stay-at-home mom. She lives in Hendersonville, Tennessee with her husband and youngest son Daniel.
