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Jonathan Stoklosa – A Super Hero with a Soft Touch

(CBS News) WILMINGTON, Del. — Jonathan Stoklosa is a young man who has incredible power — the power to lift your spirits and just about anything else. We met him “on the road.”

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American Airlines determined that a 16 year-old boy with Down Syndrome was a “Flight Risk” because he was “too excitable” and might be a “distraction to the pilot”.

The family has flown numerous times together and have not had any issues.  The only difference on this flight was that the family paid to upgrade their seats to First Class.  Apparently, even though American Airlines took their money (and didn’t refund it after refusing to allow them to board) they changed their minds and didn’t want Bede sitting in First Class.

The full story can be found here:

http://www.ktla.com/news/landing/ktla-family-kicked-off-flight-downs-syndrome,0,1076711.story

It is attitudes like this that concern me about the future of my son and the world in which he’s growing up.

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Down Syndrome, Off The Clock – by Dave Hingsburger

I am reposting this here, with permission.  The original by Dave Hingsburger is found on his Blog, “Rolling Around In My Head”,  here.

Down Syndrome, Off The Clock

They make, if not the best, a very serviceable eggplant parmigiana. We don’t go there often, but when we do, we each always get lunch from the same vendors. As they are at the start of the food court, we grab a table right at the entrance. It’s perfect for people watching, eavesdropping and is almost always the source for amusement. The parmigiana comes from the vendor right at the start of the court, Joe gets soup from the vendor next door but one. I grabbed a table just two in, with a chair removed, there is enough room for me to pull in and be out of the way.We’d just sat down for lunch when we both heard that pronunciation of the word, ‘Mother’ that communicates so much. ‘Muhhhhh-therrrrrr’. I glanced up and saw a frustrated and harried woman, carrying packages from the Bay and her son, a young man with Down Syndrome who was in his pre-teens.Of course, I listened.

(Realize that I would have listened irregardless of the boy’s Down Syndrome. I would have listened if it was a couple having a spat, if it was a businessman mumbling to himself, if it was someone having an animated conversation on a cell phone. That’s what I do.)

So, aside, aside, I listened.

It seems that the mother wanted to go with him to get his food and then have him go with her to get her food, then they would eat together. Son, thought this was silly. Why doesn’t she get hers, he get his, then they meet for lunch. She did an admirable job of keeping herself calm. I did an admirable job of just listening, not judging. Who knew what kind of experiences she’d had that led to this arrangement? They had been standing arguing and just before she moved again towards the court he said something that had a profound impact on me as a listener and she as a mother.

‘Trouble is you think I have Down Syndrome all the time and I don’t,’ he said with real frustration.

She stopped again, ‘What?’

‘I only have Down Syndrome sometimes, when I’m learning something new or if the words are real hard. I don’t have Down Syndrome the rest of the time when I’m doing what I know how to do.’

‘And you don’t have Down Syndrome now?’ she asked.

‘No, I know how to get my lunch, I buy my lunch at school all the time. I don’t have someone with me all the time you know.’ he was frustrated, he didn’t even realize he’d said something of real importance, to me and to his mother.

‘So,’ she continued looking at him hard, ‘you don’t feel like you have Down Syndrome all the time.’

‘No, most times I don’t even think about it,’ he said.

She said, her tiredness seemed to be gone, ‘Go ahead, we’ll find a table after we’ve got our food.’

They disappeared from view.

Joe and I looked at each other. I said to him, ‘That kid should teach classes to parents of kids with Down Syndrome.’

On our way home, chatting about just stuff, I realized that at that moment I didn’t feel disabled, it wasn’t part of my consciousness. I knew that everyone saw me in my wheelchair but what they saw, what they thought, didn’t impact what I felt. I’m only disabled sometimes, when things are out of my reach, when aisles are too narrow, when a curb blocks my way. The rest of the time I’m just – me.

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Trip was featured in the local paper in Butler County. We took him to see the Easter Bunny and participate in an Egg Hunt with the DSAGC.

Trip Pickering of Hyde Park takes a ride on a swing at ABC Pediatric Therapy Network in West Chester while waiting for the Easter Bunny to arrive during the Down Syndrome Association of Greater Cincinnati's Bunny Hop event

The original picture and caption can be found here.

His first 15 minutes of fame. More to come!

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A New Drug for Down Syndrome?

An interesting article in the New York Times on the possibilities around treating the symptoms and effects of Down Syndrome.

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