A new year of hope for families with autism

by Beth Finke

As moderator of the Easter Seals and Autism blog, I like to recruit different members of the Easter Seals family to post here from time to time. Our blog is more interesting — and fun — when readers get to hear voices from all over the country… and all over the world!

One of the most powerful posts we published this year came from Scottie Gaither’s mother Barbara. Scottie was diagnosed with autism at age 2 and is the Easter Seals 2008 National Child Representative. Barbara Gaither’s post tells how Easter Seals helped the Gaither family after their son Scottie was diagnosed with autism. It opens like this:

This time of year, I find myself reflecting on what I am most thankful for. I have so many things in my life that have truly blessed me, but one of the most amazing blessings is having an autistic son.

Later in the same post, Barbara wrote:

… We can give back to Easter Seals as an organization because they have given us more than words could ever express. It also gives us a chance to offer hope to other families facing the darkness of autism.

I hope that somehow, by seeing and hearing our story, there will again be light.

By making a 2007 tax deductible donation to Easter Seals, you can give help and hope to more families like the Gaithers. Cross one resolution off your list early and help another family start the New Year with hope.

Best wishes for a happy and healthy 2008!

Last minute shopping for people with autism

by Beth Finke

Our son Gus doesn’t talk. He shows a keen interest in very few things, but he sure knows what he likes — handheld tape recorders, for example. He takes the recorder in one hand, places it near his ear, transfers it to the other hand, places it near that ear, transfers it to the other hand, places it near that ear… you get the picture.

Gus is 21 now, living in a group home with roommates. While he was growing up, we tried our best to find new toys for him to explore — we knew it was good for him to be stimulated by different things. We gave him mobiles, wind chimes, tambourines — anything we could find that was colorful and made noise. He’d usually touch his new gift, cast it aside, and search for… you guessed it — his handheld tape recorder. 

I used to think maybe, just maybe, if there was somewhere I could go for a list of toys especially good for kids with autism and other disabilities, I’d find the magic item, the one thing Gus might like as much as he likes his tape recorder.

Those of you who read my “Celebrating bubble wrap” post know I’m still searching for that magic list. Turns out I’m not alone. A holiday post on about.com’s autism blog covers the same topic.

I’ve been trying to put together some good resources for holiday gift giving this year — and for some reason, I’ve been stuck…truth is, though, that I don’t want autism jewelry… and my son doesn’t really need a weighted blanket. Though he’s autistic, and I’m an “autism parent,” those facts don’t really seem to matter when it comes to giving and receiving holiday gifts.

Comments to that holiday gift blog mention kids with autism who like hats, kids with autism who like The Rescuers books, and kids with autism who like Harry Potter Playstation games.

In the end, that blogger came up with a conclusion similar to mine…

It might be downright silly to think there is a good resource to go to for gifts that are especially suited for kids who have autism or other disabilities. Because, guess what? Kids with autism and other disabilities differ from one another as much as anyone else does!

And so — sorry! I thought I might be able to narrow things down, make things a little easier for those of you reading the Easter Seals and Autism blog, but looks like you might have to get out there and slug it out with all the “average” shoppers. And… yikes! Only six days left before Christmas!

Good luck!

P.S. Gus suggests your loved one might like a handheld tape recorder…!

Tyra and Twiggy and… autism?

by Matt McAlear

Never in a million years did I think I would ever read the names Tyra Banks, Twiggy, Enrique Iglesias and autism in the same article. But then I read a recent New York Times piece that focused on a 21-year-old art student from Valparaiso, Indiana named Heather Kuzmich.

Kuzmich has been diagnosed with Asperger’s Syndrome. Like so many others who share her diagnosis, she had difficulty throughout her life navigating the social world. Sounds like a pretty standard story so far, but here’s the catch…

Kuzmich was a recent contestant on the reality show America’s Next Top Model. On the show, 13 women compete for management and representation by a major talent agency, a $100,000 cosmetics contract, and a cover and spread in a fashion magazine. When asked what motivated her to audition for the show, Kuzmich responded “I was at a point in my life where I was thinking either Asperger’s was going to define me, or I was going to be able to work around it.”

Work around it she has. Not only was Kuzmich a finalist in the competition — viewers voted her “Cover Girl of the Week” for a record nine consecutive weeks. The competitive nature of the show inevitably led to challenging moments — living in a house with 12 roommates would be challenging for many of us! The struggles and triumphs of being a young woman living with a disorder were played out in front of a national television audience on a weekly basis — Kuzmich handled herself with grace and style throughout.   

“The Future of Fashion” is the catch phrase from this season of America’s Next Top Model. We can only hope that the future of all individuals with autism, and similar disabilities, has as bright a future as what lies ahead for Heather Kuzmich.

Read Matt McAlear’s biography.

Scottie shines a spotlight on autism

by Barbara Gaither

A little bit of celebrity spotlight has been shining down on the Gaither household this month. Scottie has been interviewed by not one, not two but THREE local TV stations. and the Columbus Ledger-Enquirer, our local newspaper did a story on Scottie, too.

Scottie was not sure about all the hoopla. I can tell you, he definitely did NOT like putting on his “fancy” clothes for all these interviews. But as soon as he saw himself on the big screen — well, not exactly the BIG screen — but big enough for him, he was totally intrigued.

The night of the first broadcast we had to be at a PTA meeting for his sister Carly. That didn’t give us enough time to get home to watch TV, then back across town to her school. Answer: we went to a local favorite restaurant of ours. It just happens to have a TV in the back dining room!

Scottie could hardly eat for being so excited to see himself on TV. As is typical for stories like this one, they saved it for the end of the broadcast. In my mind they were saving the best for last. Others may say it was not as big of a news story as the latest local arrest or the weather trends in our state! By the time it was finally on, I thought Scottie was going to explode with excitement. The piece was great and he felt like quite the star. All the people dining in the backroom were aware that they were in the midst of a “celebrity” by the time the newscast was over.

Needless to say, it was a proud and happy moment for us all.

A couple days later the article and beautiful pictures came out in the paper. Scottie can hardly believe he is getting so much attention — he just sees himself as such an ordinary kid. But thanks to Easter Seals and all the wonderful people that have impacted his life, his accomplishments are far from ordinary.

See a video about our family and how Easter Seals has made a difference in our lives.

Read Barbara Gaither’s biography.

Jamie Smith, our very Special Olympian

by Jim Williams

How exciting it was to pick up Sunday’s Chicago Tribune and see the terrific front page article on Jamie Smith! Jamie is a 24-year-old Special Olympian medal winner. He’s a man with autism, strong in more ways than one.

On Tuesday, December 11, Jamie’s mother Alice — along with Wendy Murphy from Easter Seals Metropolitan Chicago and Tribune reporters Rex Huppke and Nancy Stone — took questions from the public in a live interactive chat that can be viewed here.

We at Easter Seals have had the pleasure of knowing Jamie and his family since he was 7 years old — it’s so rewarding to see the Chicago Tribune acknowledge Jamie’s accomplishments:

In October, he was going to China. He would compete as a powerlifter at the Special Olympics World Games.

The importance of Easter Seals in Jamie’s life is woven throughout the article, starting with Jamie’s enrollment at Easter Seals Metropolitan Chicago:

Margaret Creedon founded the Easter Seals Therapeutic Day School. When she met Jamie, he was a skinny, kinetic boy, barely verbal, with a permanent scar from banging the back of his head against the bedroom wall. He had chewed his fingernails so far down they bled.

Still, she saw a capable person wrapped in an autistic cocoon … not long after he arrived at Easter Seals, Jamie joined many of his fellow students competing in local Special Olympics events. Autism provided him boundless energy and a desire for rules and structure. Competition became a central part of his life, as did a need to win.

Jamie is not only an Olympic winner, but a winner in life. When you have autism, finding a job can be, well, an Olympian task. Jamie found not one job, but two:

When he reached adulthood, Easter Seals counselors helped him get a job at a South Side produce store. After he graduated, they gave him a second job as an assistant in the school’s adult vocational program.

Thanks to Jamie, Tribune readers in Chicago — and throughout the nation — know what a tremendous difference Easter Seals can make for people who have autism. Jamie is an inspiration to other people with disabilities working toward their goals, and his successes are an inspiration to all of us.

Everyone at Easter Seals Headquarters will have the opportunity to meet Jamie and his mother, Alice Smith, when they join us for our next all staff meeting on December 18. It will be an honor to be in the presence of this Olympian — a very special man with a very special family.

Inclusion, or segregation?

by Patricia Wright

A Wall Street Journal article reports on parents choosing to enroll their children with autism in segregated programs at school instead of including them in classes with their peers.

Last fall, groups who favor placing disabled students in regular classrooms faced opposition from an unlikely quarter: parents like Norette Travis, whose daughter Valerie has autism.

Valerie had already tried the mainstreaming approach that the disability advocacy groups were supporting. After attending a preschool program for special-needs students, she was assigned to a regular kindergarten class …

“She did not learn anything that year,” Ms. Travis recalls. “She regressed.”

Segregation is a hot topic in our society — class action lawsuits have made it to the Supreme Court. The issue of segregation and students with disabilities has many sides.

Quotes from parents like Ms. Travis make me think the debate isn’t so much about placement, but about outcomes. Parents — and I mean parents of kids with disabilities and parents of kids who are typically developing — send their children to school to learn.

When learning doesn’t occur, parents start to look elsewhere. Restrictive placements — often featuring a lot of instructional support — begin to look more attractive.

As a high school teacher, I have seen the benefits of students with disabilities participating in classrooms with their peers. Here’s how it worked:

• For part of the day, students with disabilities attended classes with 28 or so general education students. All of the students received systematic instruction. Students with disabilities had proper supports when necessary.
• Para-educators provided support while students with disabilities developed vocational skills working in the school office.
• For one period a day, students with disabilities rode public transportation into the local area for community-based instruction.

All of these activities had measurable outcomes — the students were learning.

So I agree with Ms. Travis … if a child is regressing, it’s time for change. But perhaps the change is not to a segregated placement, but to an integrated environment with the proper support for learning.

Celebrating bubble wrap

by Beth Finke

My plan today was to post some tips on buying holiday gifts for kids who have autism. As I often do, I checked a blog called Autism Vox for ideas. In a November 20 post, Kristina Chew pretty much says to forget the gift — concentrate on the wrapping!

Chew writes that her son Charlie, who has autism, “took a liking to bubble wrap a few years ago. He had long showed more interest in the ribbons and wrapping paper than in the actual presents themselves, no matter how elaborate a Playmobil set was concealed inside. Popping the plastic bubbles seemed to provide a sensory experience in several ways: Charlie could fell the thin plastic flattening beneath his fingers, and he could hear the effects: Pop, pop!”

Further research revealed that Bubble Wrap Appreciation Day is January 28 — of course, you probably already knew that! But did you know that is also the day Sealed Air Corporation — creator of bubble wrap — announces the grand prize winner of their annual Bubble Wrap Competition for Young Inventors?!

Among this year’s 15 semi-finalists: Hannah Haas – a 13-year-old from Charlotte, N.C. — designed bubble wrap wallpaper to engage and stimulate children with autism.

Watch this blog for results on January 28. In the meantime, happy popping!

Land of Lincoln, Obama and Clinton

by Patricia Wright

I moved to Illinois – and to my position as National Director of Autism Services for Easter Seals – a year ago. I value my right to vote, so of course I registered immediately.

And now with the presidential election looming in the not-too-distant future, I find myself voting in a state that two major Democratic candidates can call home. Sen. Barack Obama (D.-Ill.) represents the people of Illinois in the Senate, and although Sen. Hillary Clinton (D.-N.Y.) lives in New York now, she grew up in Park Ridge, Illinois.

Both of my “fellow Illinoisans” will be onstage at the Democratic presidential debate today at 2 – 4 p.m. EST. It’s an audio-only debate, sponsored by National Public Radio  and Iowa Public Radio. I never bought a TV after I moved to Chicago, so trust me – I’ll be listening to my radio.

I know a vote should not be based on geography, and even if it was, I’d be conflicted: more than one candidate can lay claim to my home state.

Issues – issues is where votes are decided. My Easter Seals colleague, Katy Beh Neas, blogged last week about how autism is turning out to be an issue in the upcoming presidential campaign.

Messages about the care and treatment of people living with autism can be found side-by-side with messages about foreign policy, our economy and global warming. With the rates of people diagnosed with autism soaring — and the needs of individuals with autism and their families climbing ever higher — attention to autism has been elevated to the status it deserves.

Dr. Shore understands autism

by Patricia Wright

Last week, the Department of Health and Human Services (HHS) announced the appointees for a new Interagency Autism Coordinating Committee. 

In a press release, HHS Secretary Mike Leavitt said:

“This important committee will play a key role in coordinating autism research, services, and education related to Autism Spectrum Disorder. I’m pleased that its members bring to the committee a wide range and great depth of expertise, including research and program administration, advocacy and personal experience with the condition.”

I was absolutely delighted to hear that Dr. Stephen Shore, a person with autism, has been tapped for membership. Shore is executive director of Autism Spectrum Disorder Consulting and serves on the board of the Autism Society of America (ASA). His books about autism are available at the Easter Seals and Autism bookstore, and you can read a review of his book, Beyond the Wall, on our blog.

I had the pleasure of meeting Shore at our 2007 Easter Seals Training Conference in April. Shore is a well-known public speaker, and at the conference he provided a personal perspective on the experience of living with autism. His presentation was truly one of the highlights of the conference. There were over 400 people in attendance that day and they walked away with a much better understanding of autism.

Individuals with autism have the greatest understanding of the nature of their disorder. Through advocacy efforts, people with autism can convey their unique needs to the community and support providers.

Shore’s appointment gives the Interagency Autism Coordinating Committee the “personal touch” it needs. 

Autism an issue in presidential campaign

by Katy Beh Neas

Autism is turning out to be an issue in the upcoming presidential campaign. Last weekend, presidential hopeful Hillary Clinton announced an autism plan that calls for significant resources in both research and services for people living with autism. Easter Seals helped shape some of the legislation that Clinton incorporated in her plan, and her policy experts came to Easter Seals for guidance.

Here’s what Easter Seals President and CEO Jim Williams said about Clinton’s plan:

“Senator Clinton’s proposal is a comprehensive plan that will help children and adults living with autism and their families today and in the future. It’s not enough to support research aimed at finding the cause and cure for Autism Spectrum Disorders. We must also increase the availability of services to help meet the needs of people with autism today.”

The autism plan proposed by John Edwards reflects Easter Seals’ priorities of access to services people need now. The same is true of the autism plan proposed by Barack Obama.

I searched the Web sites of four of the top Republican candidates — McCain, Giuliani, Thompson and Romney — and couldn’t find a mention of an autism plan. Hopefully, all of the presidential candidates will have a plan in the near future.

If your candidate of choice doesn’t have an autism plan yet, ask them to develop one.