This is probably going to be more of a diary post than a blog post. As to what the difference is between the two, well, that’s probably negligible. I guess when I write longer blog posts, they’re meant for everyone to read; a larger audience. In this case, I don’t know, it might be just for me. Either way, I just feel a bit compelled to write about an experience.
I was just at McDonalds for lunch and there was a large group in the dining area – a couple of adults and about seven kids. Yet even before glancing over at them or giving them any sort of attention or acknowledgement, I knew that at least one of them was special needs and more than likely autistic.
It was the stimming.
Stimming – short for self-stimulatory behavior or self-stimulation – might be easy to define but it’s not always easy to understand. For me it’s become a “you know it when you see it” situation. One definition is “…the repetition of physical movements, sounds, or repetitive movement of objects common in individuals with developmental disabilities, but most prevalent in people with autistic spectrum disorders”.
Not easily digestible, huh?
With my autistic son, it’s mostly about the sounds. It’s about the repetitiveness of saying “eeeeeeee” over and over again. With this girl at McDonalds, and I’m guessing she was about eight or nine years old, the sounds were similar but certainly different – the tone, the pitch and more of an “ahhhhh” sound – yet at the same time they were unmistakable.
And despite knowing all too well the uncomfortable feeling of what it’s like to be on the receiving end, I simply couldn’t stop staring. I watched as the adult tried to calm this little girl down. As they were leaving, I noticed that the adult was constantly redirecting the girl towards the exit. And although it wasn’t non-stop, the stimming was pretty constant. (I even began formulating responses in my head on what I would say if approached about why I was staring so much.)
Yet at no point did I see any sort of added communication from this girl. There didn’t seem to be any acknowledgment of the adult’s attention nor any sort of verbal responses. I’m not even sure I saw any eye contact. It was either an “ahhhhh” sound or a blank stare. And trust me, I’m all too familiar with those near-expressionless looks.
I felt like crying. Almost did, actually. I just wanted to know all about this girl: her mannerisms, her quirks, how she acts in public, etc.
Of course the questions then came to mind – Why does this happen? Why can’t more be done to help? Where’s the cure?
Better yet: Where’s the frickin’ outrage?
Then I sort of sat back and thought about Matt’s situation. I just thanked God/Allah/Buddha/Elvis that my son isn’t “as bad” as this girl (and trust me, I absolutely hate saying that.) Matt has come such a long way and I couldn’t be more proud of him.
Yet so many others aren’t as fortunate and that saddens (and angers) me.
Years ago none of this wouldn’t have bothered me. I either wouldn’t have cared or in a passing thought might’ve wondered what was wrong with that girl and that would be it. I’d have eaten my lunch and thought nothing more of it. I can’t do that anymore.
Now I just want to know more about this girl: her life, her background, her potential. What therapies is she doing? Does she have any friends? Is she happy?
Or, conversely, there’s a part of me that wishes I could simply un-see what I saw and not have to worry about things that are out of my control.