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Posts Tagged ‘Walk Now for Autism Speaks’

Raising Autism Awareness on the Fourth of July

July 11, 2011 4 comments

This post is by Sarah Hamilton

After the Chicago Walk Now for Autism Speaks, our family and friends were so revved up to do something more that we came up with the idea to raise autism awareness in our local community – South Elgin, Ill. – and decided to walk in the 4th of July parade.  As we brainstormed, with the help of Autism Speaks, we came up with the idea for the float.  We liked the big puzzle pieces that were at the walk and thought that would be perfect for a float.  We all wore our “Cole’s Crew” shirts to the parade because this year, our t-shirts just happened to feature red and blue (very patriotic!).

The night before the parade we started working on the float and put the finishing touches on it as we were lined up to start the parade.  Everyone was so excited!  My son Cole, who is autistic and who I thought wouldn’t like this kind of thing, was really into it!  He liked riding in the back of the truck and though he didn’t say anything during the parade, later that day he told me he had fun!

During the parade, we heard many people commenting, “Thank you for doing this” or “my cousin/sister/brother, etc. is autistic” or “it is so good to see something like this”.  When our float was being announced during the parade, many people stood up for us and clapped or cheered (although many were waving and cheering along the route as well).  Some people looked like they were wondering what our float was about, and I hope those are the people who went home and looked up Autism Speaks!

We ran out of goodies to give out to the crowds lining the street and we were all tired, but it was such a great day and such a great way to raise awareness!  After the parade we got many compliments on the float – some people even said it was the best in the whole parade.  All the family and friends that walked with us have already posed the question of doing this again next year…………

Definitely a success!

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The Boston Teamsters BELIEVE

June 30, 2011 2 comments

Can you BELIEVE it?

We Bostonians love our sports and our beloved Bruins. Everywhere you look you can see the B’s team logo and very often it is accompanied by one word:  BELIEVE

On June 15, the Boston Bruins won the Stanley Cup for the first time in 39 years.  Can a night get any better than that?

Why yes, yes I BELIEVE, and now know firsthand, that it can!

The night of June 15 was an incredible night for the boys in black and gold and for all the Bruins hockey fans who BELIEVED… but it was even better for this mom from Braintree.

I attended a very special event hosted by Teamsters Local 25 at Raso’s Grille. The Teamsters Local 25 Union has worked tirelessly over the past four years to fundraise for autism research and awareness.  That night the Teamsters presented a check for $170,000 to the Greater Boston Walk Now for Autism Speaks!  Allow me to repeat that…$170,000!! I still don’t think the enormity of their generosity has truly sunk in yet. Here comes that lump in my throat again!

If that wasn’t enough to blow my mind, the Teamsters also wrote checks AGAIN to support Melmark New England, a school serving children with autism and a wide range of developmental disabilities, as well as to the Braintree American Little League: Challenger Baseball division.

The Teamsters generous gifts are so important to me on so many levels – as a long time volunteer for a cause that is near and dear to my heart, serving my 4th year as co-chair for The Greater Boston Walk Now for Autism Speaks, but most importantly as a mom of a wondrous, talented, courageous, beautiful, funny, loving little boy with autism.  And it just so happens this miraculous son of mine plays on the very same Braintree Challenger League that was also the fortunate beneficiary of The Teamsters generosity!

WHAT A NIGHT! I’m a BELIEVER…are you?

Have you hugged a Teamster lately? Go on, they won’t mind, I swear.

So as the Bruins players raised the Stanley Cup proudly above their heads and made Boston fans’ dreams come true, I raise my cup to Sean O’Brien, Trish DiSilva and all members of The Teamsters Local 25 who BELIEVE in the beauty of giving back … it’s just what they do…it’s just how they roll…their commitment and drive to make a difference is so inspirational. THANK YOU doesn’t seem adequate to convey my deepest gratitude.

I BELIEVE strongly that the Teamsters Local 25 support is paramount and critically important to our local autism community…and just like the Bruins, they make dreams come true for so many families in Greater Boston.

Do you BELIEVE in miracles?  This mom from Braintree sure does.

Trish DiSilva, Teamsters Local 25; Erica Giunta Executive Dir. of the New England Chapter of Autism Speaks; Larry Cancro, Senior VP of Fenway Affairs for the Red Sox and Chairman of the New England Chapter Board; Sean O’Brien President of Teamsters Local 25 and Director on New England Chapter Board.

Ido Kedar Speech at Los Angeles Walk Now for Autism Speaks

April 26, 2011 20 comments

Ido Kedar is a fourteen year old 8th grader in all general education at his local middle school, which he attends with the with the support of an aide. Ido is also non-verbal and communicates via letterboard (unassisted) or dynawrite. He was not able to demonstrate that he understood language fluently until he was age seven. It took several years after that to convince the school district to remove him from his remedial autism class and since, he has taken off running.

“I am here to represent the point of view of people with autism who don’t speak. Some of you might be parents of non-verbal people like me and stopped believing it was possible that your child could ever learn communication or even to understand.

I don’t doubt that experts probably told you that it was false hope to imagine that your child could talk. Well, I don’t talk but I still go to regular middle school in regular classes and do regular schoolwork, and I get good grades. I tell you this, not to brag, but to give you hope.

I don’t need to talk with my mouth. It’s too hard. But I’m able to communicate thanks to my letter board and dynawrite. It was a long journey to get to here from where I started. I had years of silence and rotten frustration. I was totally not able to show people I understood, so I suffered inside while my specialists chose wrong for me.

It was the worst, and I know it’s equally challenging for parents too.

I want people to know that not speaking is not the same as not thinking; that poor fine motor is not the same as not thinking; that impulsive actions are different than not understanding right from wrong; that poor facial affect is not the same as not having feelings; that boring people to death is denying them life, liberty, and the pursuit of happiness.

But here’s my hope. I went from so bored in school in remedial education when I couldn’t communicate to a diploma path in high school next year. How, is the story of the potential in your kids.

Teach them interesting things. Read them age appropriate books. Talk normally to them. Not, “go car,” “say hi,” “good job.” I believe many autistic people are understanding inside and can’t show it. To be talked to like a baby is so frustrating.

The letter board was my freedom. This is it.

It takes a while to learn how to use it, but it’s worth it.

Communication is the most important thing.

I used to dream of talking, of course. But I am not free because I talk. I don’t talk. I am free because I can express my ideas in pointing to letters, in typing, in my blog and in my speeches. I am not lonely now.

Autism is a deep pit. Don’t give up.”

Spotlight on Kyle Cousins

April 13, 2011 9 comments

We are thrilled to announce that Kyle Cousins will be hosting  a LIVE Facebook Chat on April 20 at 1pm EST!

Kyle is a 20 year-old singer-songwriter who also happens to have autism. He began his journey with autism at two years old by losing all his language. Through years of intensive interventions and family support he has made continual progress; so much so that now he loves nothing better than to express himself onstage through his music. Cousins champions the autism awareness movement in his anthem “Everybody Wants to Be Heard,” now the theme song for Autism Speaks and it’s campaign Walk Now for Autism Speaks. He is proud to be a source of hope and inspiration for the autism community.

Kyle will be teaming up with Autism Speaks U and SHARETHEMIC to debut his band in New York City, April 21 at the UC Lounge. Doors open at 7pm ET, bands start at 8pm. All proceeds from this concert goes to Autism Speaks U. We’d love for you to come out and show your support! See poster below for details. This is a 21 and over event.

“Lighting” the White House Blue

April 2, 2011 28 comments

The autism community came together to urge President Obama and his staff to light the White House blue as a symbol and statement to the world about autism. While we still have hope that it will happen one day, we took matters into our own hands this Saturday, April 2, 2011.

Over one hundred Autism Speaks supporters gathered on Pennsylvania Avenue in front of the White House to commemorate the fourth annual World Autism Awareness Day and to light it blue with their presence, hope  and love for the community.

“We are gathered here today to help shine a light on autism,” said Jayne Tobin, whose sister and brother-in-law, Suzanne and Bob Wright, founded Autism Speaks in 2005.  “The children gathered here with their families, just like my grandnephew, represent the fastest growing developmental disability in the world.  It is imperative that our government and the world take action against autism.”

Rebecca Grazel, a student at George Washington University, took dozens of pictures of the blue-clad volunteers.  “By telling those who were in the dark about this empowering day and the disorder itself, we are ensuring that others will spread the word.    What is a bigger sign of awareness and support than showing up in the hub of our nation’s capital, wearing blue, and documenting this momentous occasion of countless others doing the same?  I am so happy to be a part of it.”

Read the passionate and moving posts on the “Light the White House blue for autism awareness” blog that features incredible posts from Jess, Mrs. Sergeant Major, Suzanne, Kerry, Wills, Laura and Amy.

 

Team Ewing Wins Arizona Marathon Corporate Team Challenge

March 22, 2011 4 comments

On Jan. 16, nearly 330 Team Ewing runners participated in the 2011 P.F. Chang’s Rock ‘n’ Roll Arizona Marathon and Half Marathon in Tempe, Ariz., the largest group the team has had in its seven years in the race.

Team Ewing won first place in the GET FIT Challenge Corporate Large Division in this year’s race—a friendly competition designed to get companies to train together. Close to 200 Ewing employees ran the race, joined by family members, friends, and Ewing customers and vendor representatives.

On the eve of the race, Team Ewing runners received some encouraging words from Matt Long, a 17-year veteran of the New York City Fire Department, a Sept. 11 first responder and a marathoner and Ironman triathlete. In December of 2005, Long was run over by a charter bus and given a five percent chance of survival.

“If you don’t challenge yourself in life, you exist the way I did (after the accident). I was about 130 pounds, I was depressed and I wasn’t setting goals for life. I wasn’t trying to move forward,” he said.

After a difficult recovery, Long has since completed the New York City marathon, an Ironman triathlon, and founded the I Will Foundation, which coaches, trains and financially supports athletes overcoming the challenges of illness and traumatic injury.

He reminded runners to trust in their training efforts and of the importance of a supportive team.

Once again, Team Ewing runners collected donations for Autism Speaks, and with a generous Ewing contribution, a total of $25,000 was raised for the organization. During the past three years, Team Ewing has raised a total of $100,000 for Autism Speaks.

Amy Hummell, Arizona director of Autism Speaks, thanked the team for their dedication and encouraged them to share the resources that Autism Speaks has with others; including the 100 Day Kit, which offers tips to assist families during the first 100 days following their child’s diagnosis of autism.

Ewing’s annual participation in the race is based on the company’s belief that health is the first wealth.“We’re very excited to have a room full of people that are committed to that,” said Doug York, Ewing’s president and half marathon participant, to the runners. “We’re excited to sponsor all of you, to commit our resources to get you here, and hopefully help you make your lives better in the long run.”

Cliff Woodbury, vice president of marketing and communications for Ewing, said the event brings employees and families together from across the country to have fun, increase their fitness, build company camaraderie and support Autism Speaks.

“It’s a real win-win-win, all around,” Woodbury said.He issued a challenge to encourage more employees to train for the 2012 marathon. This year 17 Team Ewing runners completed the 26.2-mile marathon.“I had my personal best today,” said Warren Gorowitz, vice president of sustainability and conservation for Ewing, who finished the marathon in 4:12:44. “It was amazing weather in an amazing city, and I work for an amazing company.”

10th Annual Autism Walk in West Palm Beach Led by Autism Speaks’ Co-Founders

March 7, 2011 5 comments

Congratulations to the amazing walkers who came out for the 10th annual Palm Beach County Walk Now for Autism Speaks on Sunday.   The event was a huge success with over 5,000 people joining Autism Speaks’ Co-Founders  Bob and Suzanne Wright to raise awareness and funds for autism research.   Thanks to the dedication and support of the walkers an estimated $300,000 was raised.  For more on this year’s Palm Beach Walk, check out the great media coverage from the day.

In Their Own Words – It’s For Me

February 3, 2011 21 comments

This ‘In Their Own Words’ author is Jess, who can be found at Diary of a Mom. There she writes about life with her husband Luau* and their beautiful daughters – nine and-a-half year-old Katie*, an utterly fabulous typically a-typical fourth grader, and seven and-a-half year-old, Brooke*, a loving, talented, hilarious second grader who has autism.

It had been a long, full, long day. Yeah, I know I said long twice.

We had walked (or in Mama’s case, more accurately hobbled) around the track at the Autism Walk. We – or at least the smaller half of the we - had jumped in the bouncy house until Mama finally had to send Miss N in on a retrieval mission. We’d played in the ball pit. We’d eaten pizza at ten a.m. We’d visited with Grammy and Grandpa DD. We’d gone out to lunch. We’d had a grand old time with Miss N and Yo, B! Hell, we’d even lost a tooth for good measure.

We – or the bigger of us at least - were ready for sleep.

We were lying on Brooke’s bed, snuggling together in the dark.

After a day spent immersed in capital ‘A’ Autism – as opposed to a day immersed in little ‘a’ autism which would simply be, well, ya know .. a day – I wondered what she’d taken in.

Did she hear the speaker at the Walk that called autism a ‘disease’? Though it causes much dis-ease in our world, it is actually a disorder.

Did she hear the young adult standing in front of us repeating over and over – and over – again, “Were at the Autism Walk. That’s for me. We’re at the Autism Walk. That’s for me.”?

Did she hear the mom explaining to her grumbling son that he needed to suck it up ‘because we are walking to help the sick kids’?

Did she see the bracelet that her big sister insisted on buying that said, “I love someone with autism”?

Does she remember me talking to her about it before? On other nights, snuggled in the dark, just like this.

Did the word sink in?

Did she connect it to herself? To us? To our family? To who we are?

Does it have any meaning for her at all?

Did she notice it that day? Over and over and over again?

“Hey, Brooke,” I asked into the darkness, trying to sound casual.

“Yes, Mom?” God, how I love that clipped little version of ‘Mom’ – somewhere between Mum and Mom – the word so wonderfully hers.

“Do you know that we go to the Autism Walk because you have autism?”

I was trying hard to sound cheerful – to keep the words light.

It is so desperately important to me that she not grow up internalizing our demonization of autism. Someday she will understand these words. She will know that it is a part of her. Then what? I can’t let her hate such a huge part of her life.

She didn’t answer. She was too busy fiddling with my hair.

I know better than to think that because she isn’t ‘paying attention’ she doesn’t hear me. She may process it three days, three months or three years from now, but I’ll be damned if she’s not taking it all in.

“Baby, do you know that you have autism?”

I’ve asked this question before. I’ll ask it again.

It’s so important to me that she hears it from us and doesn’t take her understanding of autism from a man at a podium shouting for its eradication. It’s far too easy for the lines to get muddled, for the leap to take her where I dread that she might go. Where does my autism end and I begin? If I have autism does that mean that I AM autism? If autism is evil then I must be too.

Add that internal monologue to the list of my greatest fears.

“Do you know what that means, Brooke – when Mama says that you have autism?”

“Nope.”

She answered. On some level, I was getting through.

I measured my words carefully. I knew I didn’t have the luxury of paragraphs. Our world demands that a sentence – maybe two – suffice.

“Well, autism is what makes some things hard for you, baby. But it’s also part of what makes you special and wonderful and well, Brooke.”

“Yup.”

“A lot of kids at the Walk today had autism too. There are LOTS of other children just like you who have it too.”

She has the right to a community. If I can help it, my girl will know she is not alone.

“So when I wake up, the tooth fairy will bring me Blue from Blue’s Clues just like my Periwinkle. And then I will have Blue. Blue will be just like my Periwinkle.”

I smiled at her, though she couldn’t see me.

“Right baby girl, I’m sure she will.”

She’ll be ready someday. In the meantime, we lay the foundation. We demystify the words. We own them. It’s a place to start.

I stole a kiss before her head disappeared under the covers. She popped back out with a giggle and threw her little arms around my neck as we went through the charade of choosing a number for the nightly countdown. In Prairie Dawn voice, we counted to thirteen. By odds. As always.

We’ve got a long time to wade through this stuff together. One sentence, one bedtime, one Walk at a time. We’ll get through it.

And wouldn’t you know it? In the morning, under her pillow, there was Blue.


“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.

In Memory of Jane Stewart

November 19, 2010 Leave a comment

This guest blog is by Nikhi Young, the Acting Walk Director for Central and East Texas.

Houston’s autism community mourns the loss of a dear friend, Jane Stewart, who passed away on November 11th.  In 1981, Jane changed the landscape of autism services in Houston by founding The Westview School, a private, not-for-profit school dedicated to providing a nurturing, structured, and stimulating environment for special needs students.  She was a pioneer in education and a champion for so many Houston families.

Jane and The Westview School have been long-time supporters of the Houston Walk Now for Autism, creating an annual team.  Two years ago, Music for Autism approached Autism Speaks about working together in Houston to share their interactive children’s concerts designed for individuals on the autism spectrum, but we needed a home for these concerts.  Jane opened her doors to us without hesitation and so began a quarterly concert series to bring families together.  Annually, one of the concerts serves as the Walk Now for Autism Speaks Kick-Off Party.

Jane Stewart will be missed by so many, among them Autism Speaks, the students whose lives she touched, and their grateful families.  In lieu of flowers, donations can be made to The Westview School at www.westviewschool.org.

In Their Own Words – Do You Have Autism, or Does It Have You?

August 19, 2010 67 comments

This “In Their Own Words” is by 23-year-old Dave Beukers, who was diagnosed with high-functioning autism in 1990. Dave serves on the committees of the Los Angeles and Orange County Walk Now for Autism Speaks events. He is a musician and a graduate of Chapman University in Orange, Calif.

I know it’s very much the standard terminology, and for all technical intents and purposes it’s probably correct. But I’ll admit I get a bit irked every time I hear that someone “has autism.” It’s a seemingly innocent phrase, and I know that no one thinks much of it, but I can’t help but dissect its connotations.

When one has something, one can “unhave” it just as easily, as it were. Say I have a ball, if I throw it away I no longer have a ball. It’s gone, outta here, sent to oblivion in my mind, and it no longer affects me or is my problem.

I find it interesting, a bit absurd even, that we use this same verb to talk about the autistic condition. It’s as if I were to say that I have “Caucasianism.” I could immerse myself as much as I like in any culture and become a functional member of that culture, but I haven’t really altered my DNA or my skin color. At the end of it all, despite the fact that I could be born in Japan, speak Japanese and celebrate the Emperor’s birthday every year, I’m still white. That is what I was given to work with, it’s a part of who I am.

“Having” autism, stretched to its extreme meanings, has kind of unfortunate implications. It implies the condition was put upon us solely by an external force. It presumes that taking the condition away, i.e. being typical, would make us unequivocally better, and it’s ever waiting for the “cure,” the magical panacea that will make everything hunky-dory.

Then again, it’s really all in how you look at it. For me, there was no real cure. It was simply work, time, and experiences that made me the person I am today. Sure, without autism, there are struggles I wouldn’t have had to endure. But I’m glad I did, and still occasionally continue to. Little by little, I learned to shove stimuli to the back of my mind, to make eye contact, to talk about something other than my favorite books, to read the nuances of conversation, to infer what someone is really thinking. I’m still not great at body language, among other things, to be honest. But some of my best qualities and personality traits are the direct result of my autism as well. I couldn’t imagine my life without autism. And I wouldn’t want to.

To me, it is not something I HAD and got rid of. It is something I AM and learned to channel.

It is this distinction in my mind between “having autism” and “being autistic,” this simple change in turn of phrase, where I personally determine my attitude towards it. As a possession, it seems simply thrust upon me as an  unnecessary burden, one which I would be better off without. As a state of being, it is a lifelong journey, a beautiful cycle of try, fail, and try again from which I learn as much as I can, wherever that ends up taking me. It is this thought that has turned me from a victim to a victor and given me hope for my future, because as long as I “had” autism, autism actually had me.

Now I don’t expect to shake up everyone’s personal lexicons here, but I hope you are as intrigued as I am by the difference a word can make.

“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.

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