POWIP Piece of Work In Progress

28Feb/118

Spotlight on Special Olympics

Let me win,
but if I cannot win
let me be brave
in the attempt.

 
 
 
 
 
That is the motto of the Special Olympics.

The Special Olympics was started by Eunice Kennedy Shriver. She explains her motivation in an article she wrote for Parade Magazine in February, 1964

"My sister, Rosemary, is retarded. But I cannot help her with pity-or serve with sorrow the 5 million others like her.

Only by facing the facts and resolving to meet the challenge head-on can something be done. Only if we broaden our understanding can we help the mentally retarded to escape into the sunlight of useful living. Even more important, we can prevent millions yet unborn from ever becoming mentally retarded.

First, I want to shatter the notion that the birth of a retarded child implies some kind of social stigma, something to be hidden and ashamed of. Retarded children are born to the healthiest and wealthiest, to the brilliant as well as the meek. They have been born to actors, generals, tycoons, statesmen and Nobel Prize Winners."

She wanted people to understand that retarded or mentally challenged people were persons.....like everyone else. They were not shameful or burdensome, just persons.

My grandmother used to say that people who were intellectually challenged were whispers from God; reminding us to be kind and decent to each other. I agree.

Special Olympics began in Chicago in 1968 and Eunice Kennedy Shriver was there, even though it was just a few short weeks since her brother Robert Kennedy had been assassinated in Los Angeles. There were less than 100 people in the crowd and about 1000 athletes from 26 states and Canada and that was the beginning of what would become a worldwide organization with thousands of volunteers, millions of athletes in training. From that small turn out in Chicago in 1968 we have come to the World Summer Games which this year, will be held in Athens, Greece.

People with special needs touch everyone's life, here are a couple from mine:

I used to work for a man who has a son with Downs Syndrome. He is a sweet, smart, creative, and imaginative boy. He smiles all the time and can make a game out of nearly anything. I've gone with him to school and seen the looks of pity on the faces of the people who watch him, but he is oblivious to that. Robbie absolutely loves life and enjoys every second. He doesn't feel as if he's living a pitiful life and Special Olympics is one of his favorite things ever. He takes the competition very seriously and loves to win. He also loves to cheer for his friends when they win. It's a place for him to just be kid...not a kid with Downs.

My friend Jenny has son named Jack who has Autism. Jack is another sweet, smart, creative, imaginative boy.

Photo Courtesy of Jack's Mom

I'm going to let Jack's mom tell you a little about what life is like being Jack's mom:.

Dede: How old was Jack when he was diagnosed with Autism?

Jenny: He was 5 which is pretty late. He developed "normally" until the time he should have started talking, and that was his only issue for a really long time. Our family doctor didn't think autism was the issue. We relocated when he was 4, that's when other symptoms surfaced. I knew something was up then, beyond speech, and actually remember wishing it was autism because then I would know what to do. I still laugh when I see those lists of warning signs because he didn't really show any of those.

Dede: What is the most frustrating thing about being the mom of a child with Autism?

Jenny: Housekeeping. He's just really hard on our shit. Not on purpose, but he's always rearranging the furniture to build a spaceship or something. I'm sure all little boys do that to some point, but he is really hard core about it. He also compensates for his speech by drawing, so when he runs out of paper he draws on the walls, and I've let him get away with it too much. Probably because I'm tired, and he's AWESOME. One night I went to check on him in the middle of the night, and he had smuggled a pen into his room. He'd muraled his whole room. I was half pissed and half WOW. Luckily we don't rent.

Dede: What is the most amazing thing about being the mom of a child with Autism?

Jenny: Their talents, the media focuses on all the things they can't or don't do, but it really is like their brains have tunnel vision. They're so focused on whatever their "thing" is that they can do things they'd never be able to do if they weren't autistic. I really don't think Jack could draw like he does if he wasn't autistic.

Dede: Has Jack ever participated in Special Olympics? If yes...what was that experience like for him and for your family.

Jenny: They had an event at his school last year, but Mr. Waite went. He's only 7, so I'm not sure we'd even have him in regular sports yet.

Dede: If no...are you planning for him to participate?

Jenny: If it's something he would enjoy. Me being an anti-social mess will probably be the biggest obstacle to that. But I've always adored Special Olympics and everything it represents.

Dede: How important do you think it is to integrate Jack into the "normal" world? Or do you think it is more important for your family and us to figure out how to fit into Jack's world?

Jenny: This is stupid because it's from a tv show, but I remember the doctor on Parenthood saying something like, "Meet him where he is, and when he's ready walk him into the world." I thought that was brilliant. I think our family's charged with doing everything we can to give help him adapt to the world. It's ok if he doesn't, but my dream for him would be to have and provide for his own family. I think the world should be understanding, but I don't expect people to bend over backwards for him. For example, I don't want him mainstreamed at school if it's gonna significantly disrupt the other kids in his class. The main thing we need from the world (and for it) is to find out what the hell is causing the epidemic. It's gone from 1:1000 to 1:100 to 1:86 boys. Someday they're gonna be men, and we're gonna have a problem.

Dede: What do you want the world to know about what life is like with a special needs child? What do you think is THE most important thing for us to know?

Jenny: I think it's the most important thing that I've learned from this. Short of suspected abuse, trust people to make decisions about what's best for their families. Like to medicate or not medicate, public or private school, 1 income family or 2, Most the time people have good reasons for the decisions they make, and they shouldn't have to justify it to anyone. I think that applies to life in general.

Dede: Given that Eunice Kennedy Shriver started SO out of love for her sister....what do you see coming from your experience being Jack's mom?

Jenny: It's opened my eyes and my heart to people with special needs and mental illnesses in general. I never thought about how our brains really work before. That anyone's brain develops normally blows my mind, so to speak. And you know how my mom had me at 45 and believed I had a 1 in 3 chance of having Downs, so I definitely have a protective instinct for people that can't protect or speak for themselves.

You can follow Jack's awesome mom on twitter @kill_truck Go do it, cuz she's the reason Twitter was created in the first place.

From my friendship with Jenny and Robbie, I have learned that people who are mentally challenged have the same kind of life the rest of us do. There are things they excel at, things they don't, people they like and people they don't. They are part of the fabric of the Human Experience and if you are the family of, or friend of someone with special needs, you know that sometimes they can be the BEST part of the Human Experience. That was Mrs. Shriver's message I believe, we are all here for a reason, an no one's reason is any more or less important than anyone else's.

So, support Special Olympics and support the Human Experience and all of us who make it what it is.

You can get involved in several ways:

Make a Donation

Be a Coach

Find SO near you, and find out what they need.

Get involved. Stand at the end of a finish line and give a hug. Donate some coinage. Give a little time. Be a part of making the Human Experience the best it can be, because that is........

B A N G E R A N G

Cross posted at Balfour's Yard

Dede

Sometimes stuff rumbles around in my brain that's longer than 140 characters and, well......twitlonger just seems like cheating. :)

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7Jan/1119

A post about a post about autism (which I’m sure you’re sick of hearing about)

The last couple days have been hard for me, at least on the internet.  Another story about the notorious Wakefield study broke yesterday, and I tried to bite my tongue through tweets, posts and links that I knew weren't true.  Or at least accurate or fair.  A lot of it was coming from friends on the right, friends that have been so supportive of Lord of the Flies.

The vaccine debate just makes me really sad.  It's not debated fairly by either side, and it's such a distraction.  There is so much more to helping people with autism than talking in circles about vaccinations they've already gotten, and the eventual impact this will have on society as a whole if we don't find the source is all but ignored, especially on the right.

So I wrote a carefully worded post about it here as this week's contribution at Pundit League.  As I went to click "publish" first thing this morning I saw my twitter timeline full of Red Eye tweets from last night.  I like Gutfeld, but he's, at the very least, not telling the whole story on this.  I don't know if he had measles as a kid or what, but he spreads misinformation... often in joke form and it really pisses me off.

I don't know if there is a link between vaccines and autism, but I do know that Jenny McCarthy and co. are not telling anyone to not vaccinate their children.   I also know the vaccine link theories were never based solely on the controversial Wakefield study. It seems these things are hard to fit in 140 characters, so this is lost on twitter.  So I've spent the morning trying to correct the record as much as I can.  I've been pleasantly surprised with the response to my Pundit League post, and I've seen some friends try to correct their tweets.  A few have paid me lip service, but haven't issued any corrections.

This is Generation Rescue's recommendations on vaccinating children. It's actually very sensible and exactly what I would do if I could turn back the clock.  I would still vaccinate Jack, but I would delay some of the vaccinations a few months, and I would insist he get them one at a time.  Especially the MMR vaccine.  I would ask to have that divided into 3 shots.  I also would make my own baby food and not put sippy cups in the microwave, among other things.

I wonder if the right is lumping the vaccine issue in with climate change and throwing the whole baby out with the hypodermic needle.

I've been asked what I think causes autism.  I don't know.  I'm not a science person.  I have no choice but to defer to those who are.  If I had to place a bet, I suspect this is what's happening:

I think some people have a congenital predisposition to whatever this is.  I also think there is something in our environment, maybe something new that is acting as a trigger.  Most likely their bodies can't filter the toxins in the vaccines as fast as other bodies can.  It's probably the same reason Jack's system can't filter gluten or casein, a protein My hope is that in the near future we will be able to isolate the genetic component, be able to test for it, then the parents of children at risk more informed decisions from there.

Then the debate will probably change from vaccinations to aborting the problem way, but that's for another day.

crossposted at KillTruck

UPDATE: Melissa Clouthier (aka MelissaTweets) has weighed in. I wanted to ask her what she thought about this when it broke, but I knew she was on the road.  She's much more knowledgeable about the science and explains it so much better than I did, and agrees that the persecution of parents has to stop.

Kill Truck

KillTruck is a wife, mother, blogger and native midwesterner now living in Eastern Washington state. She writes about politics, pop culture, parenting, wifing and a few other subjects she has no authority to write about. She has macabre fascinations with prostitution and/or cannibalism. In her free time she enjoys eating and/or drinking her feelings, liveblogging Lifetime movies, thinking about Scott Brown and mocking things she doesn’t understand.

Website - More Posts

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5Feb/100

YOU DON’T KNOW JACK

Get it?  Jack's my autistic son's name, and this post is about autism.  Oh, I should have called it "Autistic kids aren't retarded, but their caregivers are".  Anywho, if Greg Gutfeld gets to have an opinion so do I.  I promise something for everyone to disagree with.

Also, this isn't on KillTruck.  It's on my other blog Audacity to Cope.

Kill Truck

KillTruck is a wife, mother, blogger and native midwesterner now living in Eastern Washington state. She writes about politics, pop culture, parenting, wifing and a few other subjects she has no authority to write about. She has macabre fascinations with prostitution and/or cannibalism. In her free time she enjoys eating and/or drinking her feelings, liveblogging Lifetime movies, thinking about Scott Brown and mocking things she doesn’t understand.

Website - More Posts

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