Wednesday, April 07, 2010

What I WOULD Have Said At Autism Awareness Day in Hartford

Well, I schlepped up to Hartford, 53+ miles away, this morning to participate in Autism Awareness Day at the Capitol. Shannon K. from Autism Speaks was kind enough to help facilitate my participation with a woman named such and such who runs some big autism something or other here in the state. I have been in CT for 5 years with 3 kids on the spectrum and she's never crossed my radar screen in any meaningful way, so I don't know what she actually does. I'm down in the "NY" part of the state though, and we're kind of segregated.

So, there I was, in Hartford ready to go. Poor Shannon had to tell me I was not on the list of speakers. It was entirely NOT her fault. Now mind you, I knew I had a mere 60 seconds to speak. I had no intention of rambling on about mercury and vaccines and the audacious, some would say uppity, concept of recovery or cure. No, no, I was willing to play along like a good girl as I heard the words uttered by one speaker, "A lifelong condition..." blah blah and then something about, "And we'll have a Medicaid waiver in a few years!" and welcome to our sixth (strike up the brass band and pass me a firecracker!) Autism Awareness day! YAY! In that time the numbers continue to skyrocket and hot diggety damn we're aware! The room should have been draped in black crepe with a dirge playing in the background. But I digress, as it my wont.

I asked Mrs. Such and Such why I wasn't on the list any longer. Insert ruffling feathers sound here. I marched up to the Senator in charge and asked why I wasn't on the list. " Well I didn't know you until three days ago and..." Ah ha....... Someone Googled KimmyKat and didn't like what she saw, perhaps? So rather than give me the courtesy of an email saying, "The list is full and we're so sorry," I showed up for naught. Don't make me put on pantyhose for nothing, people. It's not nice.

Shannon was the only speaker to convey the urgency of the autism situation. Her son was there, and is a doll. She also spoke to some good things going on with hiring people on the spectrum. I have a saying, "Don't punish progress." Walgreens and now Lowe's are working toward hiring people on the spectrum and I'm not complaining. CT has a bill to offer a tax incentive to companies who hire people on the spectrum, and I hope that will include Asperger's.

So, here's my presentation. I was going to hold each photo up individually, but I'll just write the script under the photos I snapped for the blog. OK?

Hi, I'm Kim Stagliano and I live in Trumbull. I am Mom to a beautiful 15 year old girl with autism named Mia. (Hold up photo.) Hi, I'm Kim Stagliano. I am Mom to a beautiful 13 year old girl with autism named Gianna. (Hold up photo.) Hi. I'm Kim Stagliano. I am Mom to a beautiful 9 year old girl with autism named Bella. (Hold up photo.)

In ten seconds I'm going to talk to you about the needs facing the autism community for care, treatment, recovery (yeah, I was gonna let that fly) special education, living assistance, employment and elder care as the population ages. How could I do that in the now 5 seconds I have left. (Flip over each child's photo to reveal.)

14 comments:

Angela said...

Love it Kim!!!! Absolutely love it!

Anonymous said...

Awesome!

Jan said...

Brilliant!

Jules said...

WONDERFUL !!!
YOU ROCK =)

Lori said...

consider the nail's head appropriately hit! btw? your girls are just beautiful!

Rachel Lu said...

Kim, I LOVE your articles! As a mom with 4 kids, 2 on the spectrum, I can SO relate!

nhokkanen said...

Kim, apparently you're dangerous to the public. Your weapons are words -- which can penetrate the hardest of hearts. Mustn't let that happen. Must maintain the autism illusion.

I'm so weary of the government image managers who push away the honesty and emotion of autism, and replace reality with glossy do-nothing facades.

writtenwyrdd said...

That was incredibly rude of them. High-handed and rude.

jpozda said...

I LOVE your gift for words! You're the best.

Laura said...

That's awesome, Kim! Sorry you didn't get to present it! Love the new blog look!

angie mercier said...

MOG That would have been great! Well now, maybe they will google you again and see this and feel like the jerk they are!

K Fuller said...

Don't you understand? They can't possible put a face of hope on all of this. Lets hope that this post goes viral on fb. I intend to help it along right now.

fullsoulahead.com said...

I'm sorry you didn't get to speak Kim. Your presentation was brilliant.

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I agree with you, because to many parents usually notice signs in the first two years of their child's life. The signs usually develop gradually, but some autistic children first develop more normally and then regress.
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