Archive

Archive for June, 2010

Autism in the News – Wednesday, 06.30.10

June 30, 2010 3 comments

After a decade, Potomac autism race organizer will lace up (Potomac, Md.)
For nine years, Potomac resident Susan Pereles stood on the sidelines of the Autism Speaks race she organized. She waited patiently at the finish line as runners completed the 5K course. She congratulated participants and tracked the top runners’ times. Read more.

Missing autistic Hale Center man found safe (Hale Center, Texas)
Thirteen hours after he went missing, Shelton Martin from Hale Center has been found safe. Police tell KCBD NewsChannel 11 that he was found shortly after 1:00 p.m. in a friend’s vacant house one block from his home. Read more.

No vaccine-autism link: Get kids shots (CNN.com)
On a beautiful morning in my hometown of Walnut Creek, California, I sat watching my daughter playing in the park. There she was, along with many other kids, swinging, sliding, and running with the kind of pure joy you see only in children. Read more.

Run Anywhere this 4th of July to Support Autism Speaks

June 29, 2010 2 comments

This is a guest post by Autism Speaks’ staffer Shawnie Keenan.

The Autism Speaks 5K is only just days away!  This year is extra special in that we celebrate our 10th anniversary and are running in memory of the race’s first announcer, Chip Shooshan.  On Sunday, July 4, runners and walkers will come together and run/walk through the Potomac neighborhood looking to kick off their Independence Day weekend festivities with a real bang!  This year, we are introducing an entirely new way to run this event called “Run Anywhere.”  The concept was first introduced by Steve Kirstein who found out that there were a lot of people who were interested in participating but were, unfortunately, out of town!  So, what better way to get more people involved than by allowing them to essentially run this great event anywhere around the world and still receive the very stylish blue race tee shirt.  Without further adieu: if you are interested in running a 5k on July 4th and cannot join us in Potomac, please visit www.autismspeaks5k.org and click “Run Anywhere” to register!  Registration closes at 9 a.m. Eastern on Thursday, July 1, so register now.

Where will you be running this year?

In Their Own Words – Miracles Have Wings

June 29, 2010 27 comments

This “In Their Own Words” is by Elaine Hall, author of the memoir NOW I SEE THE MOON: A Mother, a Son, a Miracle and founder of The Miracle Project, a theatre and film arts program for children with special needs. She is also the mother of a fifteen-year-old son with autism. Discuss the book on Facebook and follow Elaine on Twitter @CoachE.

How do you know if you are doing the right therapy for your child? With so many “remedies,” “cures,” and paths to take, how do you know if you are on the “right” one? How do we know if it’s “working”?

Like most things in my life, my answers didn’t evolve gradually; they hit me over the head. There’s a story about a man so eager to “help” a butterfly into the world that he opens its chrysalis too soon. The result is tragic: the wings never develop properly, the butterfly cannot fly, and it dies. I tell this story to parents and educators who seek to force kids with autism to be something they are not, who pressure them into compliance or try to coerce them to be part of this world before they are ready. My experience with my son Neal – who I adopted from a Russian orphanage at age two and who was diagnosed with autism a year later – has taught me that we must yield to slow yet natural progress: caterpillar to chrysalis to beautiful creatures that can soar on their own. But it took me a while to learn this for myself.

I had a significant “a-ha!” moment when Neal was seven years old. I had been taking Neal out into the community quite a bit, trying desperately hard to have a normal life and fit in. Anything that Neal was interested in, I pursued. Because Neal loved butterflies, I was overjoyed to hear about a butterfly exhibit that was coming to the Los Angeles Natural History Museum. It sounded extraordinary, a “Pavilion of Wings.” The brochure read, “Stroll through a beautifully landscaped exhibit, see Monarch butterflies, giant swallow tail butterflies, and more.” I couldn’t wait.

I prepared Neal with butterfly books and manuals. We acted out the life-cycle of a butterfly. We crawled like caterpillars, munched on leaves, and rolled ourselves into a cocoon and wait, wait, waited, until we developed wings. Then we flew around our house in a rainbow of laughter. I had often used this kind of creative play in my career as an acting coach for children. Being able to use these techniques with my own boy was even more rewarding. We had so much fun together.

Finally, the exhibit opens, and on that day I get Neal into the car effortlessly and we head downtown to the museum. Neal is a little reluctant to walk across the large parking lot, but once he nears the exhibit, his eyes widen with excitement.

We enter the Pavilion. Neal is in awe: hundreds of butterflies in all shapes and colors flick and flutter around us. Neal loves the butterflies. He loves them too much. When he sees these familiar, angel-like creatures, he wants to get close to them, to smell them, to touch them. He starts reaching out ecstatically to touch each butterfly. Like King Kong snatching airplanes from atop the Empire State Building, Neal grabs for butterflies.

“He’s killing the butterflies!” shouts a little boy.

“Butterfly killer,” screams a tiny girl.

Now all the kids and adults are yelling, “Stop him! Get him! He’s killing the butterflies!!!

”Murderer!”

This terrifies Neal. He grabs a plant and pulls it out of its pot. He knocks over other pots. The butterflies are flapping wildly. A security guard swoops in.

“I am so sorry,” I keep saying. “I am so sorry. He has autism. He loves butterflies. He didn’t mean to harm them.”

“Get that kid out of here!” someone shouts, loudly enough to be heard over the others who are still screaming at Neal.

But Neal doesn’t want to leave. He is actually quite amused by the commotion he’s causing, and I can’t get him out of the exhibit. Finally, I see some plastic, made-to-look-real butterflies on the gift shop counter. I rush to the front of the line. People glare at me for cutting in. I beg to buy one of the pretend Monarchs. I can’t wait for change, so I place a $10.00 bill on the counter, grab a fake butterfly, and race back to Neal. I use this insect amulet to coax Neal out of the Pavilion, through the long parking lot, and back to the car.

Sitting in the car, Neal and I stare blankly out the front window. I look at Neal. I see the puzzled look in his eyes give way to sadness. I start to cry. Neal stares back at me. He gets teary-eyed. He’s ashamed of what happened. We look long at each other. The tears give way to smiles. The smiles become laughter. It’s one of those situations in which everything is so terrible, that it’s ultimately absurd.

But that night I pray. “Dear God, I need help. We need help. It’s just not working.”

I fell apart that day. I surrendered to the fact that our lives are just going to be a bit different from the norm. “Abbynormal,” I like to say. From that day on I became 100% committed to keeping Neal at home and bringing in creative folks – actors, musicians, writers – to join his world, until he was ready to be in ours. Gradually, inch by inch, Neal did, indeed, emerge from his cocoon as a glorious butterfly – but on his own schedule, not mine. Among many other things, now Neal can sit patiently and watch a butterfly float by without any need to “possess it.”

Through writing my memoir, Now I See the Moon, I was able realize that some things in life, as in nature, cannot be rushed. Luckily, the right teachers, the right programs, the right books, and the right methodologies always appeared just when I needed them most. Neal will always be my guide as to what he is ready for and when he’s ready for it. A caterpillar knows best when he is ready to break out of the cocoon and emerge as the graceful butterfly he was always capable of becoming.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Autism in the News – Tuesday, 06.29.10

Combo shot boosts kids’ fever-related seizure risk (CNN.com)
Children who get a combination of measles, mumps, rubella and chickenpox vaccines in one shot are at a slightly increased risk of getting a fever-related seizure, compared with children getting two separate shots – one containing measles, mumps and rubella and the another containing the chickenpox (varicella) vaccine, according to a new study published in the journal Pediatrics. Read more.

Annapolis agency helps autistic children speak (Annapolis, Md.)
Two years ago, Stephen Hartman planned to shoot a video showing different stages of autism, but he got sidetracked at Syracuse University. Read more.

Swimmer’s confidence bubbles to surface (Ind.)
Without saying a word, Ryan Brogan climbed atop a starting block in lane 3 and slipped a pair of black goggles over his eyes. Three teammates had picked him to lead their 200-meter medley relay practice session. He crossed his arms and gazed into the rippling water. Read more.

Autistic boy (10) appeals education funding ruling (Ireland)
The family of an autistic boy has appealed a High Court refusal to compel the State to provide funding for his specific educational needs, writes Tim Healy. Read more.

A Day in the Life: Volunteering at Autism Speaks’ Celebrity Golf Challenge

June 29, 2010 2 comments

This guest post is by Autism Speaks staffer Kerry Magro.  Kerry, an adult who has autism, is a rising senior at Seton Hall University, majoring in Sports Management.

One may ask what someone does after volunteering from about six in the morning to 10 at night. Does one take a shower, go to sleep, get some food, OR in some rare cases, write a blog about the day’s events? If you chose the latter, you were correct and win the glorious prize of knowing there are completely loopy people like me in this world. (Don’t believe me; I just used the word loopy in a sentence.)

On Monday, June 28, Winged Foot Golf Club in Mamaroneck, New York hosted the 12th Annual Autism Speaks Celebrity Golf Challenge. I had the opportunity to volunteer to help run the event with Autism Speaks, and as a true golf enthusiast, I felt very privileged and excited, to say the least!

The day’s events were simply astonishing, whether it was the swarms of celebrities (some with inflated handicaps and some without) or the continuing use of huge advancements in the world of technology, such as Bid Pal (a device similar to an iPhone that helps auctioneers place bids on numbered items during auctions) and eGolfScore devices (handheld wireless scoring devices updating golf scores up to the second for standings and updates). All celebrities in attendance were teamed up with groups of golfers to play in the events. The event also featured a live and silent auction in the evening with quite a few great items up for grabs.

The golf events from the day were joyous for the most part; however, an interesting sight to see was in the late afternoon when it started raining and several golf groups kept playing. Whether it was based on the fact that it was Autism Speaks’ event or not didn’t matter; people were enjoying their day and it was great to see.

The most heartfelt event of the day for me occurred during the evening dinner program where Kevin J. Murray, The event and committee co-chair spoke about autism and how it had impacted not only his son, but his family’s lives around him. This was during a very funny transitional period where Autism Speaks and Winged Foot debuted a video that was shot throughout the golf events of the day. The video included a spoof of the movie “Caddyshack” (I chuckled more than once and am laughing while typing this out as well in memory). Kevin probably said it best when he said, “This video we are about to see truly captures the feeling of today” and it did:  fun, eventful and timeless.

Suzanne and Bob Wright, The honorary co-chairs who were also in attendance, spoke during the evening dinner program and showed once again how effective and powerful they are when it comes to public speaking. Suzanne Wright, who quoted Michelangelo, said, “I saw the angel in the marble and carved until I set him free.” This was symbolic to Autism Speaks’ dedication to help with autism put together the puzzle, piece-by-piece.

Special thanks go out to all the celebrities who attended, the golfers who played and made donations to Autism Speaks, and also the to the staff members and volunteers whose fabulous work made the day run smoothly for everyone.

Read more about the event and view photos here.

12th Annual New York Celebrity Golf Challenge Raises $886,000

June 29, 2010 5 comments

Event Co-Chairs Kevin and Susan Murray thank the many supporters in attendance.

Autism Speaks’ New York Celebrity Golf Challenge celebrated its 12th anniversary with an exciting day of golf at the esteemed Winged Foot Golf Club in Mamaroneck, N.Y. on Monday, June 28, 2010. The event raised over $886,000 for Autism Speaks with celebrities from the worlds of sports, entertainment and media participating. The day included an afternoon shotgun start at Winged Foot’s challenging East and West courses.

This year’s celebrity players and attendees included former quarterback and current studio analyst for CBS’s “The NFL Today” Boomer Esiason, NFL Hall of Famer Lynn Swann, “Gossip Girl” star Matthew Settle, New York Giants’ Michael Boley , “Rescue Me” star James McCaffrey, and “Late Show with David Letterman” announcer Alan Kalter.  Also on hand were actors Gregg Bello and Chris Jackson, former NFL players Howard Cross, Phillippi Sparks, Jeremy Lincoln, Corey Louchiey and William Ard, former New York Islander Pat Flatley and comedian Gary Cannon. The tournament included several course contests, as well as a celebrity putting contest with football great Boomer Esiason and “Rescue Me” star James McCaffrey, and a million dollar shootout.

The evening dinner reception included a silent and a live auction that offered opportunity to help fund autism research and family services initiatives.  Honorary Co-chairs and Autism Speaks Co-founders Suzanne and Bob Wright rolled highlights from the first annual and highly successful “Light It Up Blue” initiative on World Autism Awareness Day.  Autism Speaks Board Member Kevin Murray shared a personal video about why he and his wife Susan have co-chaired this event every year since 1999.  The Murrays have helped raise nearly $10 million since 1999.

Read a blog post by Autism Speaks’ staffer Kerry Magro, who participated in the day’s events.

In Their Own Words – Will’s Angel

June 29, 2010 18 comments

We recently received the following e-mail and poem submission:
Two years ago my son had a very trying school year. It was riddled with setbacks and aggressive behaviors. This year was the opposite. He and his classmates were introduced to another new teacher but his year was quite different. She inspired my words below, as I imagine the feelings through my son’s eyes. I wanted to share it with you.

Before we met, I walked a world,
Couldn’t see quite eye to eye,
My mind held back ten thousand words,
Like wind against the tide.

You found a way to speak to me,
You found your way inside,
You called me out to play with you,
You found me where I hide.

I like to do the things you ask,
I try so hard each day,
I like it when you smile at me,
It tells me I’m okay.

You teach me not to be afraid,
I watch you every day,
Your face says you are brave and kind,
And fear won’t win today.

You gave a gift I can’t repay,
You wrapped it gracefully,
My mom says you reached in your heart,
And gave me dignity.

I think that there are angels now,
But the right time it must be,
And I thank God for knowing this,
And for sending mine to me.

This “In Their Own Words” poem was written by Julie Jones, a mother who has a son with autism.

“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to editors@autismspeaks.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.

Categories: In Their Own Words Tags: , , ,
Follow

Get every new post delivered to your Inbox.

Join 1,058 other followers

%d bloggers like this: