03/26/2023
My son went for a walk today, by himself. Out in the world. By himself.
This is rare. It is rare for him to express wanting to go out by himself, even more rare for him to actually do so; in no small part because of issues with social skills and emotion control paired with an in-head-out-mouth existence that is often seen by others as… to put it politely, strange, or even threatening. Folks are always quick to judge the unexpected, and usually for the worst. This means he usually has a small entourage when he ventures out, there to translate, relate, and intervene to keep him safe. His own living bubble-wrap.
He went. We tracked his phone, saw his path, his regular progress, but we didn’t follow. It reminded me of the first few times he jumped off a diving board. Most parents have been through these moments countless times by the time their kids are 21. We still are at the beginning, with our hearts in our throats.
He stopped by a house where his best friend lived. They still live there, but we haven’t seen them in years. Like so many autistic teens, we had a rough puberty, followed by the crashing in of pandemic. Anxiety, confusion, stress, and hormones are not a good combo, then toss in the frustration of navigating the neurotypical world- even in a special school. We haven’t been much of anywhere in a while. (We finally got to go visit some relatives before Christmas, for the first time in five years. It was amazing.) Going to visit anyone has been off the activity menu, to keep everyone safe.
Friend wasn’t home. The note from friend’s patent that followed doesn’t look like they are very pleased with my son’s reappearance, either. Friend ”doesn’t need any added stress.”
The isolation of being in a disability family can be strange and overwhelming. Adding issues of anxiety and puberty make it worse. The building frustration from childhood-to-adulthood transitions can swamp even the most neurotypical of people; for those who are navigating a downright hostile world, one that sends the clear message that they are less valued (hey, only the elderly and disabled folks will die of COVID, right? Why wear a mask or get a vaccine?) and expected to disappear, the result can be anything from shutdown to explosion. For those who get dealt explosion- and I assure you, the teen doesn’t get to choose- the judgment and isolation can be catastrophic, for the whole family.
Consequently, it is also hushed up. You stay home, stay out of public, don’t talk about it… because it can haunt you all for the rest of your lives. Long after puberty is in the rear view mirror, it can affect opportunities, services, friendships, and even freedom. Some don’t survive it in the first place, while trying to get help. Calling emergency when you have one is a huge gamble, and your child’s life is on the line.
Talk about not needing “added stress.”
I hope Friend is doing well and has lots of other friends. My son has some, in his very specific programs, but nothing in the freestyle way most young people have friends. We are lucky; we know families in serious struggles to connect and get social bonds going, far more having trouble sustaining them. This is why adult programs can be crucial to quality of life: they give us all points of contact, with bonds of common experience and interest. They help us create and sustain bonds, especially when we find ourselves isolated. We can find a place we aren’t alone.
