He doesn't have autism

April 1, 2017 ~ This is about having a Mom Moment, and not navigating through it well. I tell you in hopes that it will help make you stronger the next time you have a similar challenge.

The story is this.

On Monday, my son made it to the point of being able to leave the hospital for a couple of hours at a time. If you've been here, you know that getting to this point is a big deal! But it's hard the first few times. Things we do every day with ease are hurdles for people with serious mental illness.

Keeping it simple, his dad took him out for lunch and a haircut. A real haircut - not one done by a psych tech. Also a big deal.

I need to say here that social skills are challenged by severe schizophrenia. This makes interactions - well, let's just describe them as interesting. So while they were out, I got a text that said this: "I don't think the girl cutting his hair knows how to talk to him. She seems nervous around him."

So I texted back and said, "Tell her he has autism." Except.....he doesn't have autism. He has schizophrenia. (This reminds me of another time when I told someone he had a "neurobiological disorder".)

On reflection, I guess I was thinking that people are more understanding of autism. Thankfully, people are more educated about autism these days. There's less stigma. There's even a Sesame Street character now with autism. These are wonderful things.

But "schizophrenia" is just so hard to say. Folks don't know what to do with that. When you say it to them, they get this sort of "I honestly don't know what to say to you right now" look. You can almost see them remembering the last news story they read about a mass shooting.

I suggested a lie. I'm not proud of it, and I'll choose a different course of action next time. But I wanted the hair stylist to not be afraid of him. I wanted her to see him - not this horrible thing we call schizophrenia. And deep down, I wanted to protect him from the way our society views people with mental illness.

Because they ARE people, after all. Just people, dealing with an illness. Maybe one of these days, if we all keep mustering the courage to tell our stories, folks won't be so afraid. They'll be able to see mental illness for what it really is. And they'll smile, and say they understand, and do what they can to make hard things like real haircuts just a little easier for people who have such tough things to deal with.

Maybe there'll even be a Sesame Street character with schizophrenia. Now that would be something