Nothing About Us Without Us!

by Patricia Wright

The statement Nothing About us Without Us is something I strive to practice in all of my work as a disability services provider. So often decisions are made for people with disabilities by people like me — service providers — without even involving the person who has the disability. The disability advocacy community coined the phrase “Nothing About Us Without Us” decades ago to raise awareness that making decisions for others is disempowering and, really, just disrespectful.

Thankfully my career started in Berkeley, California, a Mecca for disability advocacy. I was schooled early on in my career about the disability rights movement. My area of expertise has always been individuals with autism who have significant challenges, including difficulty using spoken language to communicate.

As a teacher, I spent so much time with my students that it was easy to include them in their educational planning. We learned together about their strengths and preferences. Through daily activities they could show me, if not tell me, what they really wanted to be learning at school. Using alternative forms of communication, they could also direct many of their daily activities.

In my job now as a director of services, I have to work a little harder to ensure that my work includes people with autism. I am often attending meetings, giving lectures and writing documents without a person with autism in sight. I have to work a little harder to ensure that people with autism are represented.

Many people with autism are generous in sharing their stories with me and are happy to have me share their stories with others. These stories provide a direct connection to people with autism. Stay tuned to my next blog post, where I’ll share one of these wonderful stories — about Zhan Ge, a woman living with autism in China.

Food Lion celebrates 20 years supporting Easter Seals

by Beth Finke

Today, Food Lion launches its annual Shop&Care campaign to benefit children receiving Easter Seals services. Now in its twentieth year, the Food Lion Shop&Care program has raised over $25 million for Easter Seals.

Last year Food Lion raised $2.6 million in just four weeks through the campaign. This year they hope to raise the bar even higher — to help children with autism and other disabilities get a healthy start. From February 9th through March 8th, 2011, customers who donate $1 at check-out will save $3 on the purchase of participating products. Download this PDF for details.

The campaign also gives Food Lion, Bloom, Bottom Dollar Food and Reid’s customers several ways to support the program and realize money saving values:

• Food Lion will donate $0.25 for every 24-pack of Food Lion water purchased during the campaign (at participating Food Lion stores).
• General Mills will donate $0.10 for every participating product you buy, and look for specially marked packages of General Mills cereals (see stores for details).
• Look for specially marked packages of Breyer’s Vanilla Ice Cream.

Vote in the Shop&Care Challenge!
There is also a way for you to support your local Easter Seals affiliate. The new Shop&Care Challenge gives you the opportunity to vote for your affiliate to win a $10,000 Challenge Prize. You can vote for your affiliate once per day, from now through March 8th. Cast your vote today and spread the word about the Challenge!

We’re proud to partner again with Food Lion to support services that offer help, hope and answers to individuals with special needs and their families. Just think: by shopping at Food Lion this month you can feel good about helping people and save money at the same time!

The search for a Children Services Director

by Bob Glowacki

Greetings from Wisconsin, home of the 2011 Super Bowl Champion Green Bay Packers! We are on Cloud Nine here at Easter Seals Southeast Wisconsin, so happy about Sunday’s big game and so proud of our team.

I’m proud of our Easter Seals team, too: through our early intervention services, Easter Seals serves nearly 300 children in our area, providing the hope, help and answers they and their families need.

Now there’s a way to join our team here … we have an opening for a new Children Services Director. The individual we choose will guide our early intervention services, providing the best practices for service delivery, and play a pivotal role in guiding our fledgling autism services for young children and expanding their impact. Our Birth to Three Early Intervention program provides speech, physical and occupational therapies as well as early education for children and their families. For children with autism, we have an Applied Behavior Analysis (ABA) program, P.L.A.Y. Project, and we run SibShops. We are also looking at starting social skills training for school aged children.

The new director will work collaboratively and constructively with Easter Seals colleagues, local early intervention providers and the autism community. As a result of this, we are looking for someone with a strong background in autism with experience in managing people and budgets. Would you or someone you know be interested in being part of a growing, mission-driven organization? If so, go to our web site to learn more about — and apply for — the position. We’d love to have you join our winning team!

Airports … yikes!

by Beth Finke

Greetings from New Orleans! I arrived here Saturday, figured I’d have a couple days of fun before giving a disability awareness presentation at the New Orleans Public Library Tuesday. Five days later, and I’m still here.

The original plan was to head back to Chicago after my presentation on Tuesday, but hey,, you’ve been watching the news, right? It’s “Snowmageddon” up there! Our flight has been rescheduled for Thursday, and I’m bracing myself for crowds of delayed passengers at O’Hare. I know we’ll make it through, though. I’m telling you, once you’ve flown with a child who has a disability, you know you can survive anything an airport throws at you.

Our son Gus is 24 years old now, and He’s only flown with us twice. The first time, he was 2 years old. After the second time, when Gus was 10 years old, we vowed he’d never fly with us again. Maybe things would have felt different if people like pediatrician Wendy Ross had been around back when Gus was little. This is from a WALB-TV news story in Albany, Ga. about a program Ross developed to help make flying less traumatic for children with autism:

Pediatrician Dr. Wendy Ross helped developed the program at Albert Einstein Medical Center after hearing the trouble one of her patients was having on the airplane. Ross said the program empowers families to travel.

“The goal is not to fill the plane with tantrum kids,” Ross said. “We really want the families to be prepared and we want the airport to be a little more sensitive and understanding.”

In the story Ross said a number of airlines are providing airplane and crew for training, which includes going through security, real time check in, boarding and even waiting for luggage. I thought she was wise to point out the economic benefit to airlines that participate in this Airport Autism Access Program, too.

Ross says it’s important economically for these families to be able to travel with ease.

“If you think that one in 100 children is affected with autism, and it doesn’t just affect that child, it affects their typically developing siblings,” Ross said. “These families are not going out, which means the whole family is not going out. So for businesses, that’s a huge loss.”

It’s Bubble Wrap Appreciation Day!

by Beth Finke

What? You didn’t know? Where’ve you been? Got your head in a snow bank or something?!

Sound the trumpets: Today is Bubble Wrap Appreciation Day!

Here at the Easter Seals and Autism Blog, we just love Bubble Wrap. Three years ago our Celebrating Bubble Wrap post referred to an Autism Vox post by Kristina Chew. In her post, Chew wrote 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 feel the thin plastic flattening beneath his fingers, and he could hear the effects: Pop, pop!

Comments to that post told us that Charlie is not alone. Lots of kids — and adults — who have autism enjoy Bubble Wrap. Bubble Wrap Appreciation Day is the day Sealed Air Corporation (creator of Bubble Wrap) announces the grand prize winner of its annual “Bubble Wrap Competition for Young Inventors.” A few years back we reported that a 13-year-old girl who had designed bubble wrap wallpaper to engage and stimulate children with autism was Among the 15 semi-finalists. Hannah Haas described her sensory wallpaper like this:

Wallpaper designed to engage and stimulate children with autism through the combination of a textured bubble surface containing large and small bubbles, and a calming, blue wallpaper background.

When we found out that Hannah Haas was the grand prize winner, we published a post here encouraging everyone to Pop the cork … and the bubble wrap autism wallpaper wins!

Need I say more? There really is no question about it. Here at Easter Seals, we really do appreciate Bubble Wrap. I plan to spend the day pop, pop, popping. How about you?

Join Friendly’s 30th Cones for Kids campaign

by Beth Finke

Another snow day? Finished shoveling? Your street got plowed? Quick! Head over to Friendly’s before it starts snowing again!

Snowy weather isn’t the only winter tradition up and down the East Coast — so is Friendly’s Cones for Kids. This is Friendly’s 30th annual Cones for Kids and the campaign has raised more than 26 million for Easter Seals since 1981.

The “cover girls” for this year’s Cones for Kids campaign are Easter Seals campers Emma, Anna and Olivia. The girls visited Friendly’s headquarters in Wilbraham, Mass., earlier this month to kick off the campaign. Check out their interviews on NBC 22 News — they wowed the crowd and capped the day off with, you guessed it, Friendly’s ice cream!

Now through Valentine’s Day, you can support Easter Seals Camp Friendly’s programs for kids with autism and other disabilities every time you visit a Friendly’s Restaurant. Not only that, but you’ll be rewarded with a sheet of Valentine Cards! The Valentine Cards can be redeemed at Friendly’s for 5 free Kids Cones and $5 off any $25 purchase.

Funds raised in Friendly’s Cones for Kids program support Easter Seals Camp Friendly’s in 26 different locations. Camp Friendly’s provides an opportunity for kids with autism and other disabilities to be included in regular camp activities like boating, swimming, archery, ropes courses, horseback riding, hiking and fishing.

So put down the shovels, turn off the snow blower and go ahead and enjoy some ice cream at a Friendly’s restaurant near you. You’ll not only enjoy a tasty treat, but you’ll feel good about supporting essential disability camp programs in your community. Sweet!

Keeping health care coverage affordable for people with autism

by Katy Beh Neas

Last week the House of Representatives passed legislation (H.R. 2) that seeks to repeal the Affordable Care Act. Signed by President Obama last March, the Affordable Care Act provides protections for people with autism and other disabilities that have been noticeably absent in the insurance marketplace.

The Affordable Care Act has been in effect since September 23, 2010. Among other things, it includes provisions that require insurance companies to:

• cover children with disabilities and other pre-existing conditions
• allow young adult children to be covered by their parents’ policies until they reach age 26
• prohibit the use of lifetime limits

The bill to repeal now goes to the Senate, where it is highly unlikely that further action will be taken. Easter Seals will continue to monitor both the regulatory process and other legislative efforts to alter the Affordable Care Act.

It is vitally important to let our elected officials know the importance and impact of access to high quality and affordable health care coverage for people with autism and other disabilities.

Bridges to adulthood and employment

by Debbie Smith

Here at the Easter Seals Work Resource Center we are really looking forward to an upcoming visit by Peter Gerhardt. Dr. Gerhardt is coming to Cincinnati on February 11 and 12 to lead a couple of training sessions on transition and employment for adults with autism.

Peter Gerhardt is currently the Director of Education, Upper School, for the McCarton School in New York City. For many years he served as the President of the Organization of Autism Research (OAR).

Dr. Gerhardt has more than 30 years of experience utilizing the principles of Applied Behavior Analysis (ABA) in support of adolescents and adults with autism spectrum disorders in educational, employment, residential, and community-based settings. He is a recognized expert in this area and has testified before Congress on behalf of the needs of adults with autism. Information about the upcoming training sessions:

February 11-12
Great Oaks Career Center — Scarlet Oaks Campus
3254 East Kemper Road
Cincinnati, Ohio 45241-1582

Friday Workshop: “Successful Employment for Persons with Autism Spectrum Disorder”
February 11, 2011
1:00-4:00 p.m.

Individuals with autism spectrum disorder (ASD) have the ability and desire to work, but there are many challenges. This half-day workshop will focus on strategies to minimize or overcome many of these barriers in order to support successful employment for adults with ASD.
Cost: $40.00 for professionals, $20.00 for family members

Saturday Workshop: “Bridges to Adulthood for Learners with Autism Spectrum Disorder”
February 12, 2011
9:00 a.m.-4:00 p.m.

The transition from school services to adulthood can be particularly difficult for many adolescents with autism spectrum disorder (ASD). Transition planning for competent adulthood must look at the whole life of the person with ASD, including education, employment, community living, and meaningful integration into the community.
Cost: $75.00 for professionals, $30.00 for family members

Cost for both days: $100.00 for professionals, $50.00 for family members

Easter Seals Work Resource Center is generously supporting a large cost of this training. Autism Society Greater Cincinnati Chapter offers additional scholarship support for professionals and families, and information and applications can be accessed on the Autism Society Greater Cincinnati Chapter website. Peter is a very dynamic speaker, and his presentations are engaging, powerful and useful. To register, or if you want more information, contact Kay Brown at (513) 636-7616 or at kay.brown(at)cchmc(dot)org. We look forward to seeing you here in Cincinnati!

Learning fast: Autism in China

by Patricia Wright

The last blog post I wrote was published the day I left for China. I said then that I had a lot to learn from my counterparts in Anshan, and boy was I right!

I was In Anshan with the Five Project, a non-profit that has been promoting autism awareness and professional skill development in China since 1992. We spent two weeks providing professional development to an autism program providing service to children.

This trip gave me more opportunities to learn about autism intervention in China. The children typically enroll in a program for a relatively short period of time, often just three to six months. They go to sessions every day, and one of their parents or a care provider attends with them full-time. This means you are working with both the children and their attending parent.

Staff members at the Anshan program were eager to learn and were especially keen to know more about best practices and what they could do to ensure the best outcomes for the children. Together we made lots of changes to the learning environment and instructional practices.

We are only on site for a short period of time, so the consultation model is fast. When everyone works together the results are so rewarding. Changes are implemented within hours and the positive outcomes for the students are seen immediately.

The Anshan program had about 60 children enrolled while we were on site. The instructional team was amazing, working well into the night to develop materials we’d deemed necessary earlier that day.

Working internationally is always a privilege. Hard work and long days, but as you can see from this picture, we do have fun together, too!

Temple Grandin a real winner

by Beth Finke

You’ve probably already heard that Claire Danes won a Golden Globe Sunday night for best actress in a television movie. She won it for her portrayal of Temple Grandin in a bioflick of the same name.

While many people know that Temple Grandin has autism, what they didn’t recognize until seeing this movie is how much the Colorado State University professor has contributed to improving conditions at large livestock processing plants. Dr. Grandin truly is a remarkable woman, teacher, author, advocate and a revered academic.

Heather Pint published a book review here of Temple Grandin’s memoir, Thinking in Pictures: and Other Reports from My Life with Autism. In her review, Pint described Grandin’s early years as isolating, particularly since autism spectrum disorders were fairly unknown at the time. During an interview on Fresh Air, Terry Gross asked Grandin what it was that prevented her from being isolated like that her entire life. Grandin’s answer? Early intervention. “I started speech therapy when I was two-and-a-half years old.”

Patricia Wright, the National Director of Autism Services here at Easter Seals, wrote a blog post about the merits of early intervention.

Autism affects everyone differently and involves challenges in communication, social skills, and behaviors. If you’re worried your child may have autism — or feel something just isn’t right — follow your instincts. Don’t assume that your child will catch up. Share your concerns with your pediatrician. Look into your state’s early intervention program. Get a diagnosis. And seek support from community service and treatment providers like Easter Seals.

I’m sure Temple Grandin would agree with Patricia! If you missed the Fresh Air interview you can access it as a Fresh Air archived podcast or via iTunes. I congratulate Claire Danes for her Golden Globe, and I especially congratulate the real winner: Temple Grandin.