Friday, January 25, 2008

A word on image

On Thursday, I posted a series of pictures from the stills and film I took of Joey during a school visit. I have been really happy about Joey's teachers this year, and his so-far steady progress, especially his academic progress. Joey is happy to be in school. He's learning. It's fabulous.

But as the shadow of summer service begins to rear its ugly head, and some comments swim to mind that were made by familiar folks and strangers alike, it strikes me how much I construct a positive image of Joey and Andy here. I chose the picture where Joey is happily playing with the sequence cards, not the one where he is slamming his fists in frustration, trying to put together the words to narrate the story displayed upon them. I have him happily playing a computer game, not the ten minutes later when he progressed up two levels, and tore the phones off his head in frustration because there were now "too many" choices for the memory game.

I am often told, usually in off-hand ways, that Joey's "just can't be" autistic. He's too sweet. He's too sociable. He's too smart. He makes too much eye contact. He has too many words. He is too interactive. I often wonder if people know how really offensive such remarks, even (especially?) off-hand ones, are?

Yes, I know how very fortunate we are with Joey- that there are children who are far more effected, far less "functional", far more "disabled"- what words to use? Because it seems like anything I pick would make it sound like other people's children are not as precious or beautiful as my Joey. Every person is a miracle, folks. Life itself is a miracle. Having a life entrusted to your care is a fortune beyond reckoning. But back to the point: just because my Joey doesn't look or act the way you think an autistic person should look or act doesn't make his autism any less a part of who he is, any less real and here and now. When I see him trying to interact with other kids, and finding himself unable to do it, and seeing the frustration, the yearning, the interest... what? You didn't think autistic people were interested in interacting with their peers? Think again.

There is so much negative written and posted on the web about autism. Joey is such a bright, sparkling light of joy for us, and that is the part we most want to share. I don't hide Joey's weaknesses. I have written before about meltdowns and whinefests and echolallic perserveration. However, I do try to keep these kinds of incidents from dominating this blog, because they do not dominate Joey. And that is just the way he is.


Casdok said...

Yes life itself is a miracle.
And thank you for sharing your sparkling light of joy!

Stimey said...

Well said.

Niksmom said...

I think any of us with kids on the spectrum just *assume* that Joey has the same kind of "moments" that most of our kids do; you know, the not so pretty or flattering moments. I get so frustrated when people make assumptions about whether a person is/isn't "autistic enough" to mee their images and expectations. No one would ever tell someone that their child wasn't "blind enough" or "deaf enough" or that their kid's heart condition/cerebral palsy/whatever wasn't "enough." Shame on them!

We know that Joey is a great kid who faces daily challenges; but inthe end, what matters most is that HE IS A GREAT KID!

I for one really appreciate the glimpses you share with us; it's such a wonderful reminder for me to continue to celebrat all that is good and wonderful in my son —even when I've totally lost it with him!