Monday, January 4, 2010

Hidden Treasures

Most of my posts lately have been a little too focused on books. I realize this. Occasionally, I do write about other things here on this blog ... so, for the benefit of some of my new subscribers (and perhaps some who have had enough of all things literary), here's a post that's been lingering in Drafts for ... oh, quite awhile.

I was going through a pile of papers on the kitchen island the other day when I unearthed an invitation to a fundraising event sponsored by a local autism organization. It's a very well-done invitation (I appreciate such things), our names are spelled correctly, and it's obviously a cause that our family connects with. The theme, however, is ... well, kind of surprising.

It's a pirate-themed event ("Swashbuckling Attire Optional!") called "The Hidden Treasures of Autism."

The Dean is outraged by this - and this may not seem politically-correct to some, but in some ways, I happen to agree.

It's been almost six years now since Boo's diagnosis. In many ways, we're six light years away from that day. But in other ways, it seems like we left that doctor's office fivesix minutes ago.

I get what this organization is trying to convey with this event - and they're absolutely right in using this as an opportunity to celebrate the positive aspects about people with autism spectrum disorders.

But I can only imagine if we'd received - or saw - something like this within those first dark days post diagnosis. Would I have looked to this organization as one that could provide me with the resources needed to get us through what I refer to as "our black hole years"? Probably not. At that time, I needed folks who could commiserate with me as I said, "Jeez, this really sucks ... six years of infertility hell and for what? To deal with autism?"

I spent a lot of time online with such folks in those black hole years. A more passionate, strong, knowledgeable, and funny-as-hell group of people you will never meet. They got it; they understood what it was like to be unable to stop your kid from literally banging his head against the wall or why family gatherings were excruciatingly painful or how much of a vigilante you needed to be against a morsel of wheat or dairy that crossed your child's lips. I needed those online friends then more than I realized I did.

And I still do.

Parents of other kids who know exactly what you're going through. Those are the real hidden treasures of autism.


Niksmom said...

Yikes! But, yes, the treasures...the other parents I've met along the way.

tokemise said...

I have a four year old daughter who was diagnosed with Autism about a year ago; boy do I wish I had found the people you wrote about that helped you through your dark days. We pretty much plowed through on our own. She has made great progress in the past year but I to still feel like it was just yesterday that we were leaving the Doc's office and having all those feelings and not knowing what to do with them. Thanks for your post.

Book Dragon said...

That was beautiful, I'm so glad you dragged it out of drafts.

I would feel offended until someone talked me down. It sounds too much like they aren't taking it serious. Thanks for explaining it.

Understanding friends are wonderful and a lifeline.

Melissa (Betty and Boo's Mommy) said...

tokemise ~ you can feel free to email me privately ANYTIME if you need/want to talk - my email is peanutboo AT gmail DOT com. The listserv I was on was a Yahoo group called Parenting-Autism (or Parenting_Autism ... I forget if it was a - or a _)

Niksmom and Book Dragon ~ thank you both!

K a b l o o e y said...

Someone is going to send this link to someone who desperately needs to see it. Lots of people write funny, true, smart things about books, but there are fewer bloggers who can provide the insight and perspective you provide when you tell us about Boo. Thanks for delving into drafts and for writing what doesn't come as readily. (from someone who can skim along when life gets in the way)
((oh lovely: my word verification is "flute"))

Creations by Laurel-Rain Snow said...

You've nailed it when you say that the support of others going through the same thing is an invaluable treasure.

There is never anything more necessary when going through dark days—whether the issue is autism or something else—than the commiseration with others in the same dark tunnel.