Brotherly Bonds

Though I only knew my younger brother for a very short time, I feel his presence in my life even now, nearly four decades later.

I was reflecting on this tonight as I was bathing C and M. While it sometimes seems as though autism has put a wall up between these boys, I know they share a bond unlike any other. They will have each other always.

Accepted

After months of searching, C has finally been accepted into a school for children with autism. This comes after being turned down by other schools that couldn't or wouldn't deal with his oxygen. (Yes, this is probably discrimination, especially since these schools collect taxpayer money, but we have neither the energy nor the appetite for a legal battle.)

The school is not far from our home; it has a great reputation; the staff seem terrific and caring; and, most of all, they weren't one bit hesitant about his being on oxygen.

While this should be cause for celebration, it comes with one reservation on our part: they want to put C into a class with children who seem to have even more significant challenges than he does. This made us question ourselves:

Is C's autism even more severe than we thought, or is the school simply erring on the side of caution by getting him into a more fundamental setting to see if he can progress from there?

Whatever the case, we're grateful to at last have some resolution with regard to where he might attend school next year. And, while I believe parents usually know best, there are times when you just have to put your trust in the expertise of others.

It's Not a Phase

Google "autism denial" and you'll see there are a lot of parents of ASD kids being told by well-meaning if ill-informed friends and family that their children are just "going through a phase." To those people I'd just like to say, autism is not a phase. Sure, it's possible with help and time the ASD child may improve. Or they may get worse. I guess in that sense autism has its phases.

But autism is a lifelong condition, not a fleeting trait. It is how the brain is wired, and it informs the very nature of the autistic individual.

It's not just being shy or awkward or unique. Autism doesn't just refer to children incapable of communication. And it doesn't mean the ASD child can't be bright or happy or even funny, nor does it mean they will be a Rainman-like savant.

In fact, it is often said there are as many forms of autism as there are people with autism. I suppose this is true, but across the spectrum there are common, detectable traits that define the condition, regardless of any individual's unique personality.

I think it's worth noting that friends and family who suggest "it's not autism" mostly do so from a place of love; they have good intentions. They don't want to believe it to be true. What they may not realize is that by denying the diagnosis, they are undermining the very people they love.

Imagine if you had cancer, but everyone you loved told you it was probably something else...indigestion or stress or poor sleep habits. How would that make you feel? It would be downright maddening.

No one wants to accept the autism diagnosis, least of all the parents whose child has been so diagnosed. But once that truth has been accepted by the parents, friends and family would do best to get on board, or keep their opinions to themselves.

Outside Looking In

C on the outside looking in.

Here is a photo that breaks a tiny bit of my heart.

It was taken yesterday at a third birthday party for one of the girls in C's preschool. The children—including C's twin—were engaged in dancing, singing, pretend play, and other group activities. Meanwhile, C was mostly on the outside, the periphery, looking in, standing to the side, his little hand curled in something I think of as a manual question mark.

But maybe I'm painting an unfair picture of the situation: C wasn't hiding, and he wasn't in a corner. He wasn't frightened and he wasn't resistant. He was watching the children, observing, taking it all in. In fact, several times he did participate, in his own unique way. And he was clearly enjoying himself.

Still, it's painful to realize that this isn't the picture of typical childhood shyness or fear; this is autism...and I'm just going to have to learn to be okay with that.