Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

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Sunday, May 9, 2010

What's A Mom & Her Boy To Do?

A Personal Story
Peanut Butter 'n Jelly

You have to understand that it would ordinarily take an Act of Congress and a College Football Team to wrestle my son into a suit and tie, but after twenty years of participation in Seattle Parks and Recreation's Specialized Programs, when someone handed him an invitation to a Public Hearing that involved possible budget cuts to his beloved Wednesday Night Starlight Socials, Monday cooking classes, Saturday Travels, and some pools might be closed (gasp! we've already lost the one at Fircrest), he was HOT on it. He brought me the flyer, waving it in the air, unable to speak, reverting to his sign language, and I had to remember back to the days before he learned to speak when these opportunities to be out and integrated were the few chances he had to be with his "Buds", his "Peeps". And the few hours I had to be either with other parents, or to have a few hours for myself.

But yesterday morning The Boy got up on his own, showered and shaved, like he would usually do only for church on Sunday, and suited up for this opportunity to tell the City of Seattle how important Parks Special Programs are to him. We had talked about it the night before, we had each written down our speeches on 3X5 index cards, we had made a sign with a big AX that said Don't Cut Parks Spec. Prog, so we could wave it from the audience.

Now, we have attended many Shoreline City Council Meetings, mind you, and signed up to speak, so we thought we were prepared. But this was Seattle, and we had been misinformed about the purpose of this meeting; it wasn't just about the Parks budget, it was about everything from Pea Patches to Seattle Center. There was a guy there with a sign that protested ticketing parked cars, saying, "My car is my home".

And the biggest problem was that this was the biggest crowd we had ever encountered! After driving around for twenty minutes following flourescent-yellow-vested parking attendants, we arrived at a cacophonous cafeteria filled with HUNDREDS of milling people, somewhat grouped by signs indicating their interest, but mostly making it abundantly clear that if you had a snowball's chance in hell of a spot at the podium it wouldn't happen before midnite in Hawaii...

My son was already shaking. It was almost 5:30 p.m. and he had dressed for this event at 5:50 a.m. He had written his speech the night before. He was pressed by a closely bumping crowd of people around him, all talking at once. Like having your radio station tuned just slightly off and nothing comes in clearly, everything was just a buzz, a cafeteria with venders cranking out lattes, and the smells, and there was no seating left and no-place-outside-and-it's-raining...and here comes the seizure, I just know it, I see it dancing in his eyes, I've lived with it since he was ten years old, so I take his arm, wipe the drool from his mouth with my sleeve, he can still walk, I know he can...

I take the speech notes from his hand and drop them in the "Written Comments" box as we pass by the sign up table...

This kind of seizure is called Partial/Complex, and he's only halfway here, but there is a lot of facial twitching and salivation and it looks way worse than it is. Anyway, what I believe is that he is somewhere else when that happens, so I'm in charge of his body, so I need to take it home, so that's what I did.

But the next day, my son got on his computer and looked up on King 5 News (because he saw them there at the hearing) to see what had happened. He said that mostly it was businesses saying don't raise our taxes, but that some of his friends said please don't close our pools.

So there it is then...
Peanut Butter & Jelly

PS: The Boy will be swimming laps at Movin' for Money, Sunday, May 16th - 1-4 p.m. at the Meadowbrook Pool (10515 35th Ave N.E.) to raise $$$ for Specialized Programs for Seattle Parks.

You may be swimming or walking a similar path, eh?

Note by Saskia: If not for this description, most of us, who do not have loved ones in the Parks programs, would have no idea how important they are as activity resources for people with DD! There may still be a small window of time to add your voice to those of this Mom and her boy. I encourage you not to hold back. For contact info to support continuance of the parks programs click on the title of this post or go to: www.seattle.gov/html/feedback.htm.