The smart aleck in me always wants to reply, “Who?” but I try to keep the inner child in check and answer something to the effect of, “Yes, she’s your sister.”
“Yea, well, I love Ashley.”
“Good. I’m glad. And I’m sure you love Carissa as well.”
Sean usually then throws himself into some kind of monologue expressing his frustration over how Ashley doesn’t do such-and-such or understand things like he does.
“Sean, she’s 5.”
It used to be “She’s 4”…. Even “She’s 3.”
Both of the kids have grown tired of me explaining their little sister’s childish behaviour by simply pointing out how young she is.
I remember doing something similar with Sean. Only then, I would say, “He’s autistic.”
It almost – no, it in fact – became a habit. Something I would do without even thinking and, in time, something I would do before any excuse needed to be made.
It was like my safety net.
I’d get it out there before he would start kicking and screaming in public.
I’d announce it to the other parents before he became frustrated and tackled your kid out on the soccer field.
I’d say it in the beginning so you wouldn’t look at me like you do when something happens….
And you know you do…
The look could be with compassion but usually it’s more like, “Can’t you control your kid?”
The kids would come right out and ask, “What’s wrong with Sean?”
And I’d always answer, “His brain is wired differently. Sometimes it takes awhile to understand things.”
The kids would be satisfied and nothing more from them would be said. Sean would be accepted and life would go on.
But the parents… oh, the parents…and how they love to judge. The glances, the looks, the whispers, and then the comments would come.
“Why do you insist on him being here?”
“He’s a monster.”
“He’s a disruption and is causing problems in the classroom.”
“My child isn’t learning because of him.”
“He needs to leave before he hurts someone.”
How can you call my child “a monster”? What gives you the right? Frankly, who the hell do you think you are?
But after hearing that, the ugliness never changed to compassion. It never changed to understanding.
That word is more than a diagnosis. It’s a lifestyle…not only for Sean, but for the entire family.
Can I go out and get a “real” job like everybody says I should? No. Between therapies and meetings and doctors…not to mention being available for all those phone calls from school… how can I hold down a normal 9 to 5 gig?
Are dinners simple? Are any trips outside of the house, simple?
Can I send him in the backyard? Let him take his bike out? Can I let him cross the street?
Can I send him to his room with instructions to clean it? Can I tell him to take a shower without adding something like “Don’t forget to use soap”?
No, no, and no.
Autistic does not mean simple.
But getting back on track, “autistic” is not everything about my son.
And it certainly does not bear enough importance in our lives to take the place of his name but, sadly, that’s what was happening.
I would say, “That’s my son. He’s autistic.”
An excuse, my safety net, some kind of explanation… a plea for understanding…. That’s all that it was.
But it’s not who he is.
It’s not his name.
When I realized what I was doing, I knew I had to stop.
I named my blog as a reminder to myself…as a reminder to everyone.
We have amazing, wonderful children.
Autism is a trait that they have – just like being blue-eyed or right-handed.
We would never think to say, “That’s my son. He’s got brown eyes.”
So when Ashley is doing something that is so Ashley-like, instead of explaining to the kids that she’s 5… I can say, “Oh, that’s Ashley being Ashley,” because that’s who she is.
And when Sean is doing something, I’ll proudly say, “Oh, that’s Sean being Sean,” because Sean is being exactly who he is… left-handed, gray eyes, autism and all.