Another parent recently gave me advice that I want to talk about today. She said that your entire life cannot become consumed by autism or [insert other special need here], that you need to maintain your own identity outside of this world. That means leaving the A-word at the door when you socialize. This means doing things as an adult and even leaving your child home and checking out of the A-hotel completely, or at least pretending to.
I try not to live a secret second life but I am realizing it might be essential to surviving. Before now, I did not fully understand why some people keep their child’s diagnoses a dirty little secret. Why they lie and say everything is fine. No big deal. I always thought it was shame. But it could just be wisdom.
I’ve always been the type of person who is honest and I don’t pretend to be happy when I’m not. I have posted photos of bad days on Facebook and Instagram just to prove that point and not exemplify some false perfect life. I have tried to just keep it real. But in order to maintain a life outside of this isolated world, I’ve learned that I can’t do that. This is how I need to change this year and it’s not an easy change to make.
Another parent also warned me that the moment you start talking about autism with parents whose children don’t have it, they avoid you, so don’t do it. Other parents whose children have special needs or disabilities are the only people you can lose it around. You can cry and talk for three hours about how much life sucks. They will listen, and they will get it, and just be there with you. But friends and family? You need to turn it off if you want a life outside of caregiving. Don’t even talk about it, unless you’re being positive and brief. Keep it brief.
This made me think about the TV show Atypical on Netflix recently, specifically, Season 2, Episode 6. While my husband and I watched it, I think he understood our social situation better. But if there were ever a single episode of a television show that captures this secluded world we live in, it’s this one. If you want a 28-minute insight into our world without the sob story attached, just watch this one episode. It touches on the most intimate struggles this community faces. From a child striving towards independence, bullying, police not being able to identify or deescalate a sensory meltdown, true friendship and acceptance, and even judgment. It goes into the whole notion on how you make plans and dreams while your children are babies and then your life veers down the dark road less traveled. This is not a choice. There is nothing special about us that puts us on this path. In the beginning, we think that help and understanding will come pouring in, but the opposite happens. It runs the other way. It shows the true survival of a family.
One small part of this episode (S2, E6) captured friendship perfectly when Sam’s parents Elsa and Doug awkwardly visited a former friend’s house regarding an incident that occurred between their sons.
During this visit, it felt like the two couples would make amends, especially when the other boy’s mother admitted that it was shitty of them to stop inviting the Gardener family on the camping trip tradition they had started together before the boys were born. The husband’s awkwardly agreed on how the wives seemed to get along. But then it happened, the other boy’s father said to Doug:
“It makes sense that [my wife] and the kids didn’t want to hang around Sam…he was a little off back then. He was always yelling and making a scene. It was hard to deal with but never mind—it’s all good now.”
Doug intervened that Sam’s autism is a real thing and that they shouldn’t be punished for it, he hoped his “friend” could understand that. But he didn’t. He replied,
“Am I supposed to force my kids to hang out with someone who yells and hits them? That would be punishing us!”
His honesty rocked their world and they left; Doug finally understood Elsa’s isolation. On the car ride home, he said to her, “I never realized how hard that must have been for you…losing her as a friend.” I mentioned this because nowhere in the episode does it show these parents talking too much to their friends about their son’s autism.
Men handle things differently and talk about it less. Also in this episode, Sam was picked up by the police for wandering home from his friend’s house in the middle of the night. The police officer was one of Doug’s friends who didn’t even realize that Sam was his son because he never talked about it. But when he confronted his police officer friend, things got awkward between them as well.
People who are going to bail are going to do so regardless of whether or not you talk about it. Talking about it less might just give you a life as an adult outside of your house, not friends for your kid as I originally hoped.
When anyone asks: Everything is wonderful, the kids are great. If they still bail, then I’m going to assume they are the problem and not us.