Developmental disability

Clearly Some Don’t Get The Awareness Thing…And Never Will

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It had been a very good week off; a time to recharge, spend time together as a family and appreciate what that means: being together, re-connecting, and appreciate that times can change quickly and drastically.  The new pup has changed our sleep/wake patterns and we’re still getting used to that.  In a matter of months, Nick will be in college; hopefully he’ll have some kind of part-time job before then (LOL!), so our day-to-day family dynamic will definitely change.  Birthdays, concerts and baseball games are coming now that Spring has finally arrived.

I guess I tend to take for granted the support each of us has provided to each other; understanding what it’s like to be part of a family affected by Autism is one thing; it is quite another to walk in our shoes.  Just simple acts of empathy, and understanding the stress levels that Autism tends to put families under are tremendously helpful.  Actually learning about Autism (and other related developmental disabilities) and offering help when it seems to be needed are true gifts; to that end I am extremely proud of my older sons, who so often ‘step up’ for their little brother, and each other.  Imagine someone offering you a brief respite, a moment to sit and have a quick, undisturbed cup of coffee or offering to watch your special needs child for a few minutes is like manna from heaven.

Our vacation, as usual, came to an abrupt and jarring end after an Easter get-together.  The setting is a family gathering in the home of a young child who is (at least) developmentally delayed and likely a nonverbal autistic.  He is a whirlwind of activity and impulsivity.  My kids played with his siblings and other cousins, allowing his parents to tag-team without the distraction of worrying about their other kids.  While he does have quiet moments (he let me stroke his hair while he lay next to me on the sofa), these are usually short-lived, especially when it’s late in the day and he’s tired.  Then he jets off to another room, or activity, or just needs to get up and keep moving.

I was appalled to hear a relative say, “I know this sounds mean but can’t we strap him down to a chair?”  Let’s be clear here: this is not the first visit she’s had to her nephew’s home.  He wasn’t particularly agitated, certainly not violent.  Actually quite redirectable.  So after cocking my head askew and imperceptibly shaking my head, I (and others in the room) answered 1. how inappropriate that is, and 2. how futile it would be, reiterating how this boy had earned his nickname ‘Houdini’.

Then comes,  “couldn’t they put him in a room with nothing in it?” I bit my lip before answering, “this is his home, this is where he should feel at home.” 

I did not bother to go into awareness issues.  I did not bother to explain just how wrong those two questions were, on so many levels.  Autism and developmental disabilities have been part of our extended family landscape for over a decade.  Everyone was witness to how difficult family gatherings in homes and restaurants, were.  How much of a toll in terms of stress and anger and lack of support there was after we found out our son Mike was autistic.   After learning that our nephew was also developmentally delayed, I remember my sister-in-law telling my wife ‘now I know what you were going through’ (or something similarly empathetic).   Vindication? No.  Understanding, yes.

I can’t pummel people about the head repeatedly to change how they view Autism, and its alarming rise in the United States.  I can’t change people who don’t want to change.  I can’t change how people interact with their own family members.  I can’t make people advocate for a cause they don’t want to understand.  I don’t wish they knew what it would be like to raise a Autistic child, because that would be one more child who needs to be championed.  I can’t ever describe how it feels to see how my Autistic child makes small progressions, and how that has helped me appreciate his two older brothers that much more for their successes.  I can’t teach them how to be ‘other-centric’.

I can feel sorry for them, for they lack basic human kindness.  They can’t help it; they were born that way.

 

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The Healing Power Of Fun

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by Tom Fields-Meyer, via latimes.com

One morning 13 years ago, I brought my young son to a storefront children’s gym in Culver City. Ezra had recently been diagnosed with autism, and someone — a doctor or a therapist — had suggested that Dave Rabb could help.

I don’t remember what I expected, but not the man I met: Dave was short and sturdy, in his 60s, with a Brooklyn accent and an attitude to match. I told him I wasn’t sure Ezra would be able to follow directions — at 4, our son was remote and distracted and rarely made eye contact — but that I could help.

Dave didn’t need my help. He told Ezra to leave his shoes in a bin near the door, then led him onto the carpeted gym floor. Over the next hour, I watched from a bench as this man with his gravelly voice directed my son through an obstacle course of ramps, ladders and slides. To my astonishment, Ezra listened. Following Dave’s directions — firm, direct, precise — my son made his way around the perimeter of the room with quiet intent.

My autistic child: Putting Ezra first

For another child that might have been a simple feat. For Ezra, it seemed nearly miraculous.

I thought of that morning when I learned recently that Dave Rabb had died at 78 after a battle with pulmonary illness. People often ask me which doctors or therapists have been the most helpful in raising Ezra, who’s now 17. My answer: What matters isn’t the degree or title but the person’s ability to make a genuine, caring human connection.

I learned that from Dave, who had no advanced degrees and learned his people skills on the streets of Brooklyn’s Sea Gate neighborhood. He was rough around the edges, a onetime drill instructor who playfully shouted commands at kids and routinely cracked off-color jokes for the entertainment of the parents on the sidelines.

Dave Rabb’s Children’s Fitness Center wasn’t fancy. The pads and ladders looked like they dated to the Ford administration, and they did: The gym opened in 1976, long before kids’ gyms seemed as common in L.A. as yogurt shops.

Dave had not a whit of pretense. What he had was heart — and a child’s appetite for fun. Ezra’s occupational therapists would talk about proprioceptive input and sensory integration. Dave? He’d direct a class of kids to lie on the floor, roll a giant, inflatable hot dog over their bodies, and watch them giggle. He would have Ezra scurry up a wooden ladder, ring a bell with his toes and announce “Ta-dah!” He piped in circus music while children practiced on trapeze.

Ezra learned motor skills and gymnastics techniques — how to vault, how to execute a seat-drop on a trampoline. But mostly he learned something the therapists and educators left by the wayside: carefree, silly fun.

One summer Dave invited Ezra to a day camp he ran for a few children with special needs. There were no releases to sign, no medical insurance forms. He just loaded a bunch of kids into his car and drove them to the beach, where they played in the sand and roasted marshmallows.

Dave had spent a dozen years as athletic director of the Los Feliz JCC before he opened the gym, on a block he shared at the time with a gun swap shop, an Army recruiter and a credit dentist. Almost immediately it attracted a following. For a time, his clientele included the kids of celebrities like Michael Landon, Susan Dey and Matt Groening, “The Simpsons” creator. “I didn’t know who half of them were,” he once told me.

More recently, his focus was on children like Ezra, kids with autism and other developmental disabilities. Dave wasn’t much for labels. To him they were just kids, and like all kids they needed to have fun. He taught them, and though he was well into his 70s, Dave seemed to draw energy from playing with toddlers.

It was only in recent months that his illness slowed him down. When I heard in December that he planned to close the gym, I paid a visit just days before he retired. The place hadn’t changed much, nor had Dave. We sat on that same bench where I’d sat that morning years earlier, and I listened to him reflect on his life and work.

He told me that too many parents were afraid of their children, intimidated by the task of raising them. “What I’ve tried to do,” he said, “is give parents the tools to appreciate their kids, to notice the same things that knock me out every day, watching them.”

His retirement plan was to move to Hawaii with his wife, Marilyn, to be near one of his two adult daughters. And he was going to write a book. The working title: “How to Be a Fun Parent.”

I told him he’d already taught that, to me and to countless others.

http://www.latimes.com/news/opinion/commentary/la-oe-fields-meyer-autism-gym-rabb-20130207,0,748274.story

A Looming Tsunami: Adulthood On The Horizon

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WHEN AUTISTIC CHILDREN ARE CHILDREN NO MORE

Three local families confront the looming social crisis -by Cassie Walker Burke via Chicagomag.com


Lunchtime at Our Place

The peas must be sorted. On a recent Friday morning, several 20-something volunteers buzz around a North Shore basement that houses a food pantry for the needy. Pouya Bagherian, an outgoing young man who is prone to mistakenly throwing valuables into the trash, goes through bags of donations. Jason Kaplan, a quiet type who is most comfortable plugged into his iPod, checks each can of peas to make sure it has no puncture marks. And Frank Craven, who is slight and wears thick-rimmed glasses, organizes the cans on a shelf so that the earliest expiration dates are in front.

These tasks require an enthusiasm for repetition that many people would find mind numbing. Not these three. Bagherian and Kaplan, both 26, are autistic; Craven, also 26, has a rare autism-like condition called Lowe syndrome. Coming here lets them build real-world skills such as organization and teamwork, plus earn the satisfaction of a job well done. Equally important, it gives them a reason to get up in the morning.


Jane Gallery and son Frank Craven at Wilmette’s Our Place program, which she founded

Many autistic adults have a hard time finding their place in the world. Less than half enroll in higher education or find work. (According to the Social Security Administration, only about 6 percent of adults with autism work full-time.) Many lack the skills to live alone. Those who cannot work generally qualify for monthly Social Security disability payments, which are too low to cover vocational coaches, therapeutic day programs, or other interventions that may help an autistic person reach a modicum of self-sufficiency. Meanwhile, the federal government does not require school systems to provide special education for students older than 18 (most states, including Illinois, have extended the requirement through age 21). “If you have a developmental disability like Frank, when you turn 22, you disappear,” says Craven’s mother, Jane Gallery, a 61-year-old Winnetka resident. “You fall off a cliff.”

The editor of Chicagomag.com has asked that you read the rest of this terrific article online.  Please click the link:

http://www.chicagomag.com/Chicago-Magazine/March-2013/When-Autistic-Children-Are-Children-No-More/index.php?cparticle=1&siarticle=0#artanc

Bull Riding And Ice Cream Cake. Really??

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You’d think they’d get it by now.  We went to a family get-together and sometimes I just have to shake my head and wonder why we bother.  At these sort of things, Mike tends to want to watch certain shows, usually Animal Planet.  Otherwise he’s happy occupying an iPad or computer.  While not ideal, it does keep him in proximity to interact with everyone there.  When we arrived, Mike wanted to change the channel.  No.  Not happening. Instead he is made to sit and watch Professional Bull Riding.  Nothing against PBR, or its multitude of fans, but really, really, who watches this dreck?  As Mike asks, and then asks again repeatedly, to watch Animal Planet, I can see him get more upset; it’s under the surface but it’s there.  But no; let’s keep watching a freakin’ bull riding competition, and let’s talk about it too, why don’t we?  Mike shouldn’t expect to get ‘his way’ every time, but c’mon now, bull riding?  And oh, by the way, why not skip over that whole explaining/talking/interacting thing so that he might possibly understand you a little better.

So Mike’s upset.  He knows not to go on the computer because he’s been told not to do that on a previous visit.  He wants to be left alone now; luckily there’s another TV upstairs, so he retreats there.  He doesn’t want any food, doesn’t want to see his cousins, and basically feels isolated.  Oh, by the way, feel free to change that channel over to the football game now that he’s shuttered himself upstairs, away from everyone.  We wouldn’t want you to get bored watching bull riding.

He eventually agrees to come down to sing ‘Happy Birthday’ and eat some ice cream cake.  While I didn’t see it, my wife says he politely asked for a particular piece (the corner) and was told “no”, for what amounted to be a feeble reason: ‘because I said so’.

Why the hell are we here?? If you don’t want your family in your house, stop inviting us.  You have known Mike all his life, you know how he behaves and interacts, you know that he loves and respects you, and in that time, and despite all that, he continues to get teased unnecessarily, and now he’s rebuffed at each turn.  It’s not like he’s tearing up the house, or is out of control; in fact he behaves better than some of his neurotypical cousins, in my opinion.  Why bother opening the door if you’re going to make any member of my family feel isolated and unwanted?

My wife, understandably, was incensed and saddened by these events.  The sad truth is that a stranger’s family; one that has been touched by autism, or another developmental disability gets it.  Families on the Spectrum understand these feelings of anger, frustration, loneliness and dejection better than our own families do.  And that’s an outright shame.  It doesn’t surprise me at all why Mike would rather stay home than go out, and talk with his parents and brothers more than anyone else; we value his interactions and abilities as much as our own.  I’m glad he knows we’re always going to be there for him.

We went to a family get-together.  Mike was made to feel isolated.  Mike ate his dinner (take-out) in the car on the drive home.  Thanks for having us over.  Happy freaking birthday–see you next year.  (Sorry folks, they don’t make a font for ‘sarcasm’ -Ed)

iPods Help To Keep Austistic People Working

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Tablet Devices Keep Austistic People Working

Click here to listen to this podcast

English: An iPod touch display unit at my loca...

Mobile gadgets provide numerous easy distractions from work. But what if these devices could actually help people with developmental disabilities stay on task in the workplace?

A team of occupational therapists recently published a four-year study of three people with autism spectrum disorders, or ASD. The subjects were all provided with a job and given a specially programmed iPod touch to help them keep that job. Each iPod featured several apps, including task reminder alarms, checklists and video prompts for self-managing behavior. The three people with an ASD used the iPods to help them work successfully as custodians or housekeepers. The study is in the Journal of Vocational Rehabilitation. [Tony Gentry et al., The Apple iPod Touch as a vocational support aid for adults with autism: Three case studies]

The CDC says that about one percent of all U.S. children are diagnosed with an autism spectrum disorder. Only about 15 percent of U.S. adults with an ASD have paying jobs.

As millions of us allow mobile devices to impair our communication and socialization, those with an ASD may find that the same devices can help them become better integrated into society.

—Larry Greenemeier

[The above text is a transcript of this podcast.]

via Tablet Devices Keep Austistic People Working – Yahoo! News.

Tommy Hilfiger: Another Parent On The Spectrum

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Designer appears in PSA for the philanthropy Autism Speaks

Public service advertisement (PSA) for Autism Speaks, featuring renowned fashion designer Tommy Hilfiger.

Tommy Hilfiger and his wife Dee have more in common than just design success — they both have children affected with autism.

Hilfiger said that one of the reasons he chose to appear in a public service announcement for the philanthropy Autism Speaks was to honor his16 year-old daughter, Kathleen.

He said that she when was five years old, she was given the diagnosis of being “developmentally delayed.”

Despite seeing doctors at Harvard and Yale, he couldn’t get a grasp on what the trouble was.

BOYZ II MEN STAR TALKS ABOUT HIS SON’S AUTISM

Finally they discovered she was “on the spectrum of autism” — but it still left more questions than answers.

He’s proud of his “really smart” daughter who now attends a special school.

“She’ll come and wake me up in the middle of the night and ask, ‘Am I intelligent?’ or ‘Someone in school told me I was a retard, is that true?’ It’s just heart-wrenching.”

While he’s happy his daughter is getting the care and help she needs, he wishes that more people cared about autism.

“The government is not involved in it. People aren’t donating enough money. There’s not enough research,” he said. “There’s no cure. It needs help, so we’ve become involved.”

He said that having a stepchild with similar problems has proved to be a comfort for his daughter.

“Dee has a son my daughter’s age who had the same issue,” he said. “That really brought us together.”

Recent findings from the Centers for Disease Control reveal that 1 in 88 children in the United States has some form of autism.

Read more: http://www.nydailynews.com/life-style/health/tommy-hilfiger-daughter-kathleen-wife-dee-son-autism-spectrum-article-1.1089738#ixzz1x1Vol22U

Lawmakers Want More Autism Training For Teachers

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A pair of congressman are pushing for legislation to dramatically enhance training for educators who teach students with autism.

bill introduced in Congress late last week would establish a five-year federal grant program to allow school districts to team with universities and nonprofits to train general education teachers and other school staff to best support students with autism.

“We’ve learned a lot about autism spectrum disorder over the last 10 years, and over that time period the number of children diagnosed with ASD has grown dramatically,” said U.S. Rep. Mike Doyle, D-Pa. who’s cosponsoring the bill along with U.S. Rep. Jim Moran, D-Va. “Consequently, it’s essential that educators are able to take advantage of our rapidly growing knowledge base — and that we increase the number of teachers trained to help autistic students.”

In addition to training educators, the pilot program established under the proposed legislation would also focus on parent involvement and the retention of skilled teachers to better the experience of students with the developmental disability, backers said.

Under the bill, the program would be available in school districts where at least 10 percent of special education students have an autism diagnosis. Participating schools would be required to partner with at least one university and one nonprofit with autism expertise to implement the program.

Known as the “Autism Understanding and Training In School Methodologies for Educators Act of 2012,” it’s unclear when the bill may progress in Congress.

http://www.disabilityscoop.com/2012/04/30/lawmakers-autism-training/15493/