When you have an epiphany, it’s a good idea to write it down. I’ve long since been of the opinion that if you don’t write it down, it didn’t happen. So on those rare moments when a clear thought does wind it’s way up my spine to enlighten my darken mind, I have to put it down. Otherwise that light will go out. And if there’s anything that we must rage against, as Dylan Thomas said, it’s the dying of the light.
And so I write to rage against meaninglessness.
My insight tonight happened as a series of things came together. Thanks to a friend for kicking it off with your post earlier today. You wrote:
[The LEA] only wants to help those who are severe and not the ones who might fall through the cracks that have a chance to make it if they were given just a little bit of help.
While this wasn’t our experience, it did make me stop and ask of myself: Is it possible that my son’s severity is a gift?
It’s important to pay attention to that tickle as it moves up your spine.
When we speak of autism, we speak of it as a spectrum. There is a vast range of gifts, talents, and abilities when it comes to the spectrum. There are those who are severely autistic. There are children and adults who’s autism is so severe that they will possibly never find a way to communicate with the world outside themselves. There are those who cannot speak, but learn other ways of communicating. There are people, who like our boy, don’t communicate clearly via speech at the beginning of their lives, but have the possibility of learning as they grow. And there are those who don’t seem to have a problem talking, but instead have difficulty recognizing non-verbal language or (well, this is the case with many who aren’t on the spectrum, too) nuance and sarcasm.
Frankly, I haven’t even begun to describe the range. Autism isn’t just a rainbow of visible light; it encompasses infrared and ultraviolet light as well. Sometimes you can see the disability. Sometimes you can’t.
And sometimes the disability that you can see is easier to deal with than the one you can’t.
We can see our boy’s disability and so can nearly everyone else who comes into contact with him. His disability is visible and audible; it isn’t hidden below the surface.
We don’t have to explain to those who interact with him that he isn’t being rude; he has an illness. We don’t have to defend his difficulty with making eye-contact, or his stimming, or his humming, or his bouncing. No one assumes that our boy is just misbehaving. And despite our struggles to understand him when he’s asking for things, or crying, or laughing, everyone knows that we’re telling the truth when we say that our child has a disability.
Sometimes severity drives a spike through my heart. When I know that my boy is screaming at me to get me to understand what he wants, what he needs, who he is, my life stops for a while.
But we find a way through. And the boy learns and talks, and life begins again.
But when I see my friends having to scream on behalf of their child, having to defend their child to others who think the kid is just bad, having to fight for just a little help with reading or writing or math; it’s then that I know, I see and I rage with them.
Sometimes severity is a gift.