Over the weekend, the great state of Florida kicked off our Walk season in Palm Beach and Miami. Both walks were a success drawing big crowds and raising funds for Autism Speaks’ work funding innovative autism research and family services, to increase awareness about the growing autism health crisis, and advocate for the needs of individuals with autism.
In Miami an estimated 25,000 plus walkers participating and are expected to raise over $700,000! Under the leadership of our Walk Chair Manny Gaunaurd, as well as Board Chair Al Lopez, Miami once again set records for its Walk! Corporate sponsors Toys “R” Us, IMUSA (who had especially designed an Autism Speaks frying pan), Sardanos Supermarket, Johnny Rockets, FedEx, DHL, BDO, South Florida Ford, and many, many more were on hand to lead the celebration. Particular thanks are also in order to several other top corporations including Total Bank, and our good friends from Buffalo Wild Wings.The day was highlighted by a young woman with autism who serenading the crowd with songs of hope and joy. We were also delighted to be presented with the first ever key to the city of Doral by Mayor Carlos Gimenez.
Palm Beach welcomed more than 7,000 people took part in the Walk fun raising over $344,000! Walk Corporate Chair Denise Negron, Chair Laura Pincus and Co-chairs Amy Schwartz and Debra Rosenfeld along with their amazing Walk Committee and 200+ volunteers made sure that the morning went off without a hitch. Unfortunately, the one thing out of their control was the weather. In the interest of public safety, the actual walking portion of the day was canceled due to severe storms and high winds, but the activities surrounding the Walk, though, were enjoyed by the thousands of walkers who came out for the event! The event was emceed by NBC News Channel 5’s West Palm Beach Anchor, Michael Williams. Honorary Chairs Suzanne and Bob Wright, co-founders of Autism Speaks, addressed the crowd with moving speeches, motivating everyone to Light It Up Blue on April 2 and demanding action for the passage of the Achieving Better Life Experience Act (A.B.L.E – legislation allowing families raising children with disabilities to save tax-free for their future needs) in Congress.
Here’s some fun tweets!
Check out some of these awesome photos from both events!
Watch an interview with Autism Speaks Co-founders Suzanne and Bob Wright about the upcoming Palm Beach Walk Now for Autism Speaks. The Wrights discussed Autism Speaks and its mission with Michael Williams of WPTV. Plus, read coverage of the event from the Palm Beach Daily News.
The Palm Beach Walk takes place on Sunday, March 4. Visit www.walknowforautismspeaks.org to find a Walk in your area.
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Last night I stumbled across a blog post that struck a chord by Leigh Merryday who writes a blog called ‘Flappiness Is….’ The post was titled ‘Silencing Ourselves- A Plea for Civility in the ASD Community,’ and I was moved and could relate entirely with the lens in which she viewed the autism community.
I am not always politically correct. I say autistic. For years I would have to correct people when they would say, “Oh yes, artistic, he is good at art.” I make the conscious effort to say, “My brother Jeff has autism,” but sometimes I forget. Guilty.
Of course autism doesn’t define my brother. If anything, Jeffery can be defined by his big heart, beautiful soul, and giving spirit. Saying he is autistic could never take that away from him, I mean no disrespect, to him, or anyone else on the spectrum.
Leigh says, “Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.” Guess what? Siblings also can feel a great sadness and worry. Am I at times sad that Jeff has autism? Yes, but not for my own sake, for his. Jeff has challenges that are unfair and it makes me sad that his life has to be more difficult than most. It is sad to me that he can’t go out without being stared at; or that he can’t carry on a typical conversation, struggling to have his voice heard.
Do I worry about him? Hell yes. When Jeff moved into his group home, a wonderful and difficult experience for our family, I was overcome with such anxiety because I was so unsure of how it would turn out. I worry what will happen when my parents are no longer around. Can my oldest brother Tommy and I be there for him in the way that he needs? I can’t be sure, but I know that we’ll try our best.
When I was young and a believer in Santa Claus, I asked for Jeff to speak. To this day, I would give anything to have Jeff ‘cured.’ Should I, and others that feel the same be attacked for that? I would never judge anyone for their stance on the topic.What do we accomplish by going at each other on this issue? As Leigh points out, “by jumping on people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.”
I am thankful and inspired by the neurodiversity movement. I think that self-advocates have made incredible strides to raise awareness and speak for those who can’t. I have made connections and friendships with many of these folks who work hard for the greater good of the autism community.
Jeff was diagnosed in 1987. My parents were scared and overwhelmed. Autism? What’s that? When we found other families who had sons with autism, we clung, and held on for dear life. These friends soon became family.
We didn’t have the internet back then, and sometimes we think it may have been a good thing. We had to stick together and hope for the best, working towards the goal of giving my brother the most productive and enriched life we could. Today, there are ‘support’ forums and communities all over the internet. Often times, these are breeding grounds for knock down, drag out fights. People can hide behind these online personas and say whatever they want, while others are able to make connections and that become lifelines. Amazing friendships and bonds exist – I wish there was more of that. It is a blessing and a curse.
Until coming to work at Autism Speaks, I had no clue of the different segments in the autism community. I was absolutely shocked by it. Clearly we were just living in our own ‘autism bubble,’ but I don’t think it was the worst thing. Why can’t we just support and respect each other?
In fact, I never in a million years thought that I would be working at Autism Speaks. I thought that the only way to work in the field of autism was to be a teacher, therapist, or scientist. I wasn’t anti-Autism Speaks, but at the time of inception, the mission was geared to diagnosis and early interventions. We had been there and done that!
But joining Autism Speaks has been an incredible blessing. I am thrilled by the way the organization has evolved and where it is looking to go. The development of the Transition Tool Kit and Housing and Residential Supports Tool Kit are wonderful and that is only the beginning! I am also incredibly lucky to work side by side with people that really want to make life better for ALL people affected by autism. My coworkers have supported me, and in turn my family in ways I never could have imagined.
This past Fall my family along with the other families in Jeff’s group home, participated in a local Walk Now for Autism Speaks. It was with Jeff’s lead that we signed up and I have never been so proud to walk next to someone in all my life.
So there it is. Laid out for all to see. I hope that the autism community can come together for good and respect each other as time goes forth.
In the meantime, I will continue to walk side-by-side with Jeff never losing sight of the past and all that we’ve been through. But I will look optimistically to the future, because Jeff makes all of those who know him better people. He will surely leave this world a much brighter place, for the truth is, he already has.
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about 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 email@example.com. 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.
Max Braverman is an autistic character in the show. The creator, Jason Katims, has a son with Asperger’s/autism. Alex talks with the cast about autism, acting, and NBC’s hit show Parenthood!
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This post is by Phillip Hain, the West Region Director for Autism Speaks.
Ever since my 19 year old son, Andrew, was diagnosed with Asperger Syndrome at the age of 3½, I’ve learned—and shared this sentiment with other parents—that we measure success and milestones on a different chart. I had recently one at the Love Ride, an annual motorcycle event that for 28 years has raised money for various children’s causes. Autism Speaks was fortunate to be the beneficiary for the 2nd consecutive year.
A traffic accident on the freeway caused a major delay getting to the ride’s endpoint and the young man scheduled to sing the national anthem was stuck in traffic. It quickly became apparent he wouldn’t make it in time, even while we were already stretching the program as much as we could. I had this idea that made me feel like the stage manager in an old Hollywood musical movie: Andrew could go on in his place! He loves to sing, has done the national anthem before at one of our Walk Now for Autism Speaks events, has no fear of performing before a crowd, and definitely enjoys being the center of attention.
When I presented him with the idea there was a big surprising response: he didn’t want to do it.
I was really shocked and asked him why and his response had all the indications of being a teenager rather than anything borne out of genuine fear or stage fright. He said, “I’m more into singing pop music now. That doesn’t interest me.” I was simultaneously amused and annoyed so I just tried to reason with him, explaining that he would be doing a big favor because they really needed someone. The next few minutes were a series of him partially agreeing, then changing his mind, my continued pleading mixed with patience, until he finally said, “Ok, I’ll do it.” I wanted to make sure he was comfortable and he said yes.
When he strode onto the stage, you would have thought he was a pro. He started singing and two lines into the song, he broke for a moment to say, “Everybody join me.” Talk about working the crowd for maximum effect! He finished the song to the sound of rousing applause and cheers. (I later read on a blog post about the event that his performance was the highlight of the afternoon.) He was justifiably proud and said, “I’m glad I did it. I made the right decision.”
Many kids—and adults— with autism have an affinity for music and other arts. It calms them and provides the opportunity to express themselves in creative ways, and breaks the stereotype of children completely locked in their own world and unable to emerge. That was certainly confirmed in the Emmy-winning documentary “Autism: The Musical.”
It is with that spirit which inspired our Los Angeles chapter to create an event rooted in music which we are calling the Blue Tie-Blue Jean Ball. It will be a fun, casual, anything-but-boring evening to celebrate music and lift our souls at the House of Blues Los Angeles on December 1. Guess? Jeans has signed on to be our presenting sponsor. We’re fortunate that the incredible Sarah McLachlan has agreed to perform as the headliner at our inaugural show. A few more special guests have strongly hinted that they will drop by for the festivities.
We’re also honoring a fantastic rock music photographer named Rob Shanahan, who has taken some absolutely stunning pictures of the biggest names in the industry. Some of his subjects include Sting, Dave Navarro, Sheila E. and Barry Manilow. And the foreword to Rob’s new book, Volume 1, was written by Ringo Starr. It doesn’t get more impressive than that. Rob’s work will be on display that night and he’ll also be signing books. You can get a sneak peek at his website www.robshanahan.com.
So, if you live in the Los Angeles area, or just made the snap decision to be here December 1, you will treat yourself to an amazing night. And if you have friends or relatives nearby, make sure they plan to attend. You don’t want to be the one who hears them complain, “Why didn’t you tell me?”
The event website is http://events.autismspeaks.org/bluetie.
Check out this great video by CelebrityWire here!
This guest blog post is by 17-year-old Autism Speaks St. Louis chapter volunteer Jake Bernstein. He is one of NASCAR’s 4 finalists for the Betty Jane France Humanitarian Award. If Jake wins, Autism Speaks will receive $100,000. To vote for him, visit: http://foundation.nascar.com/NetCommunity/Page.aspx?pid=1414
You cannot pick your neighbors. We got lucky. Max and Charlie are my adorable neighbors. They are seven-year old identical twin boys on the autism spectrum. Charlie and Max often stop over our house to visit. We all look forward to seeing them. Max likes to use our iPad. Charlie is more interested in helping us with household tasks. One day he decided to try to help clean up my bedroom. My bedroom is quite messy. Charlie entered my room and started picking up papers. I was touched.
Max and Charlie would see me carrying my tennis racket to school each morning during the high school tennis season. They would ask me questions about tennis. Since both boys were intrigued by my tennis racket, I asked their parents if I could provide them with tennis lessons. The boys’ parents welcomed the idea and shared that there were limited physical, social and recreational opportunities for autistic youth. Their interest in my racket was the motivation to create a social and recreational opportunity for my neighbors and other children on the autism spectrum who often lack extracurricular outlets.
Planning a weekly tennis clinic is similar to arranging a game of tennis just on a much grander scale. Tennis supplies and court space were graciously donated by our local Parks and Recreation Department. I contacted the local chapter of Autism Speaks for guidance and suggestions on promoting the free tennis clinic. Barbara Goode from the St Louis chapter of Autism Speaks graciously offered to promote the free clinic on Facebook, Twitter and with email blasts. I also posted the request for volunteers in our local newspaper, my volunteer Facebook page and Twitter postings @stlvolunteen. There was tremendous outpouring of interest from area high school students to volunteer which allowed us to provide individualized instruction for each child. Each week the children and volunteers returned eager and enthusiastic for another tennis lesson.
My grandmother spotted the information online about the Betty Jane France award for volunteer service. She nominated me for the award. I was truly surprised and honored to be selected as a finalist for the award. Each finalist is given the opportunity to donate $25,000 with the potential for an additional $75,000 to the organization of their choice: I chose Autism Speaks. I know that this monetary donation to Autism Speaks has the opportunity to better many kids’ lives. The time I spend with Max and Charlie has changed the way I see the world. The boys can find joy in the smallest object. They have taught me to do the same. It is wonderful to learn from these two little boys.
We would like to express our deepest gratitude to Jake for his support of the autism community, and we encourage everyone to vote for him to win the Betty Jane France Humanitarian Award by visiting:http://foundation.nascar.com/NetCommunity/Page.aspx?pid=1414
Walk Now for Autism Speaks draws amazing volunteers from all over the country to spread awareness and raise funds in support of research into the causes, prevention, treatments and a cure for autism; increasing awareness of autism spectrum disorders; and advocating for the needs of individuals with autism and their families.
These Walkers featured here are special… not only do they TALK the TALK, they WALK the WALK! Bring on any muck or mire, they are out there supporting the Autism Speaks mission!
Have you endured the wrath of Mother Nature at a Walk Now for Autism Speaks event? Send us your photos to firstname.lastname@example.org with ‘weather’ in the title and we will add you to the slideshow!