April is Autism Awareness Month. There was a flurry of articles right around April 2 (Autism Awareness Day): what is is, isn’t, what causes it, why it’s on the rise. But for me and for so many thousands of other parents and siblings, every single day is autism awareness day.
Every outing and interaction, explanation of some unusual family dynamics or ways of communicating make it autism awareness day.
The truth is, I didn’t “come out” as an autism parent till April 2 of this year. Sure, my family and some friends knew. But for the most part I didn’t tell anyone else. If J did something eyebrow raising, I’d just say J has some “delays” and leave it at that. J was a preemie and people give a lot of leeway for that.
I don’t say that he has autism right away because I want to give him a chance. It has nothing to do with shame or embarrassment. It does have to do with not wanting the huge stereotypes that go with autism to land squarely on my three-year-old’s shoulders. And when I do tell someone I’m very careful about how I say it. J has autism. J also has brown eyes, a beautiful smile and a caring spirit. Autism does not define him. There is so much more to him than that and I want others to see it, too.
I also got really tired of hearing, “but he doesn’t look like he’s autistic.” That one gets my panties in a bunch.
It’s been almost a year and a half since J was diagnosed. While the actual diagnosis was not a complete surprise, I did feel like I slipped down a rabbit hole the second I heard the word. In a way I did. Our new world included seven therapists and 24 hours of therapy each week for J. I learned a new vocabulary. I began to be familiar with our advocates in the system and what we would need to do to get J in the right school setting to set him up for success.
It can be all consuming, especially at first. The schedule was grueling. We had about two unscheduled hours a day with J, and that included dinner and bath time, so it was really more like 45 minutes. The therapists would give us “homework,” telling me that if we do X, then Y will improve. And soon my to-do list grew too long to fathom. And J was really just tired and wanted to be a kid . . . . because he is a kid, a kid with autism.
That’s the thing; kids come in all shapes and sizes and with all kinds of abilities. Some are really good at jumping, and others can throw straight as an arrow, still more love to draw and paint, and sing, others dream of being a dancer, or a bus driver, or the president. Whether or not these kids have autism, an extra chromosome, seizures or a leg that doesn’t work quite like the other one, they’re all just kids being kids living life the way they were created to be.