Thursday, July 23, 2009

Autism Spectrum Disorders: Calling all storytellers!

Phase two of the marketing test for Same Child, Different Day elicits your help once again. As many of you are aware, this family autism support resource is full of our own anecdotes and stories of how Nolan's autism has affected our family directly. But I've realized with the latest promotion that our experiences are only one small part of the story that is autism. Time and again people commented, "When I read your booklet, it was refreshing to see we aren't alone," or "I'm guilty of feeling justified that you experience the same meltdowns we do," and "Thank you for making me realize it's OK to laugh about this condition every once in a while."

You, too have experienced so much in dealing with ASD's, that I would love to hear from you, as well. And I'd love for you to share your thoughts and experiences with all of us, with the ultimate goal of telling the world what we have to say.

If you are comfortable with it, and in your "spare" time, please feel free to comment below or email me with your own "Spectrum" stories. Not as an invasion of privacy or morbid voyeurism; rather this is a chance to celebrate your loved ones and show them off in front of the world! Parents love to brag about their kids and now's your chance.

Share something funny, something frustrating, something prideful or something quirky. Did you have an awkward but amusing run-in in public? Maybe we did, too! Does your loved one living with autism have a funny trait? No need to be embarrassed or devastated by it; brag about it now! Here's your chance to tell everyone how frustrating that stim is, while at the same time admitting that you have laughed about it behind closed doors. I am not asking any of us to make fun of our loved ones --- oh goodness, no! Instead this is an opportunity to include them in mainstream life --- a chance to show off the fact that, just as they are as different as chocolate and vanilla, they are equally just like everyone else.

And if sharing your name is an awkward proposition, no worries! If you ask me to, I'll honor your request for confidentiality and anonymity. Just keep in mind that the final intent is to present your snippets in print.

I have a saying: "Doctors keep people alive, but storytellers keep CIVILIZATIONS alive." I think there's a message there somewhere. Anyhow...

...thanks a lot and Happy Storytelling.



CorrieHowe said...

Thanks for your blog. Thanks for asking for stories. I'm new to blogging, but nine years into raising a child with Asperger's Syndrome. For a long time I'd be intimidated by "the experts" especially those in school systems. However, over the years I realize that I know more than they do. As someone told me along the way, "You have a PhD in your son."

This comment really rang true when it came to my three and a half years of complaining to the pediatrician only to be ignored.

Don't be me wrong. I LOVED this doctor. In fact both he and his nurse practitioner were named "Best" of all the military doctors of all the military branches for all the military installations over the world. That's quite an endorsement. And he was GREAT for my "typical child." Not so much for my second son. To give him the benefit of the doubt, he might have been sleep deprived. When I complained about my son, his response was either, "You had the perfect child first." Or "My wife has twins the same age, if you want to talk about..."

Three and a half years later, I complained to my own military primary doctor about the things I'd noticed. She immediately asked more questions, and administered developmental tests to my son. Then she gave me a referral to the closest military specialty hospital...two hours away.

Years later, as I was collecting medical records, I read her referral. She wrote, "Please confirm or rule out Asperger's Syndrome." Wow! She nailed it. And she wasn't even my son's doctor!

My son had a lot of the signs of autism. Even now as I go back and read my Christmas letters, my emails, journal entries, etc., I was right to be concerned from the time of his birth.

Jon G said...

Thanks for visiting. I'm happy you like my little blog world. I love sharing these stories and am so glad you did, too. We have a lot of nice visitors and I've made some wonderful friends. Please stop by often and poke around some of the links...that's what they are there for. And if you know of anyone that would benefit from the booklet "Same Child, Different Day", please send them this way, too!

Thanks again, and I'll be adding your blog link to mine!