Easter Seals is proud to be part of Advancing Futures for Adults with Autism (AFAA), a national consortium seeking to create meaningful futures for adults with autism. At the town hall meeting this Friday, over 1,000 people in 15 cities will join the discussion to make recommendations on these important issues. Caregivers, advocates, elected officials, family members, and adults with autism will participate, and we hope you will, too!

The event will be orchestrated from a central hub in Chicago, and a webcast will allow us to hear ideas from participants at satellite sites all over the country. The unprecedented scale and diversity of the AFAA Town Meeting will attract national attention and build momentum around addressing the needs of adults with autism. Easter Seals is hosting the satellite sites in Long Beach and in Fort Worth.

There are a few slots left in these sites — register now!

Over 1,000 people (caregivers, advocates, elected officials, family members, and adults with autism) will join the discussion to make recommendations on these important issues. The event will be orchestrated from a central hub in Chicago, and a webcast will allow us to hear ideas from participants at satellite sites all over the country.

The unprecedented scale and diversity of the AFAA Town Meeting will attract national attention and build momentum around addressing the needs of adults with autism.

Easter Seals is hosting the satellite sites in Long Beach and in Fort Worth.

Sign up now to be part of Advancing the Future of Adults with Autism. Be part of the solution. Ensure adults with autism have the quality of life that all citizens deserve!

The National Autism Center has released a great resource to help parents and service providers. It’s called the National Standards Project, and it provides critical information about which treatments have been shown to be effective for individuals with ASD.

The project looked at the core characteristics of ASD in children, adolescents, and young adults (those below 22 years of age) and examined and quantified the level of research supporting interventions. Eleven treatments were found to have significant evidence.

The National Autism Center launched the National Standards Project in 2005. The project benefited from the support and guidance of an expert panel composed of nationally recognized scholars, researchers, and other leaders. The culmination of this rigorous multi-year project is the National Standards Report, the most comprehensive analysis available to date about treatments for children and adolescents with ASD.

The National Standards Project will provide guidance, encourage families and service providers to make informed decisions, and promote the use of evidence-based treatments. And with the implementation of these standards, our outcome will be citizens with autism who move into adulthood with increased skills and the ability to contribute their talents to our diverse communities.

Visit the National Autism Center Web site to access a copy of the report.

Google had a booth at the Autism Society of America conference last month so they could show off their free software program SketchUp. SketchUp was originally developed for users to create, modify and share 3D models. Turns out SketchUp helps folks with autism develop some skills, too. Check out this youtube video to see some of the autism SketchUp success stories.

On Tuesday I visited the Google Chicago office to brainstorm possibilities of how to reach out to people with autism and let more of them know about SketchUp. Google has heard the success stories from people with autism and is interested in spreading the word so others may benefit.

The Google office was exactly what I expected: incredibly hip surroundings, staff in flip-flops, even lava lamps in the reception area! What came shining through all this grooviness while speaking with the staff at Google during my visit is their desire to contribute back to their community. What a bonus to have such a well-known company take an interest in the world of autism.

So I am on the bandwagon, reaching out about SketchUp. Download the SketchUp program for free and let us know what you think.

Easter Seals and Autism — For families living with autism, this site provides “help, hope, and answers.” Topics include what happens when children with autism become adults with autism, the link between disabilities and homelessness, book reviews and autism support.

This news about our Top 50 status comes at a time when a nurse practitioner friend of mine is visiting. Through this friend, and from the care our son Gus has received from nurse practitioners over the years, we have come to trust, value and respect the work of nurse practitioners. It is an honor for our Easter Seals and Autism blog to be recognized in this way. It is flattering to think that when students who want to become nurse practitioners have questions about autism, they might just turn to the Easter Seals and Autism blog for “help, hope and answers.”

She lived long enough to see her hopes fulfilled — it’s impossible to count the number of our own Easter Seals clients who benefit from the sports training and competition they receive by participating in Special Olympics. Two perfect examples? Team USA member Jamie Smith, and our blogger Maurice Snell.

Jamie Smith, a graduate of Easter Seals’ Autism Therapeutic School in Chicago, traveled with the Special Olympics to Shanghai, China in September, 2007 and brought home two bronze and two silver medals for powerlifting.

Earlier this year Maurice applauded Jamie Smith’s efforts in a blog post about Special Olympics:

It has helped change the lives of many different people — including my colleague, Jamie Smith. Jamie went to Shanghai, China and did extraordinarily well -– he won four Olympic medals!

Maurice benefited from his own participation in the Special Olympics. He was diagnosed with autism when he was six years old. At age seven, he and his family visited what today is the Easter Seals Therapeutic Day School, a place where students with autism ages 3 to 21 receive not only an education and therapy, but recreational services, too. During Maurice’s 10 years at the school, a team of professionals helped him develop his speech, language and communication skills. They helped with his social skills, too: he learned to swim and play baseball, and competed in the Special Olympics. Today, Maurice works as a classroom aide and mentor at his former school.

I was an active participant in the Special Olympics during my days at the Therapeutic School and Center for Autism Research. I enjoyed the opportunities to participate in various events and meet many different people. To me, Special Olympics kept me going throughout my life. It motivated me to achieve higher standards and make me grow as a man. I’m grateful for Special Olympics and Easter Seals’ involvement in Special Olympics.

I don’t think I can say it any better than Maurice did. So many lives have been changed for the better thanks to Eunice Kennedy Shriver’s work. Thank you, Eunice. You will be missed.

The Autism Society of America, along with dozens of other disability groups, signed a letter supporting Sotomayor’s confirmation. The letter was sent to Senators Patrick Leahy (D-VT) and Jeff Sessions (R-AL).

I’m sure ASA members enjoyed seeing Judge Sotomayor sworn in as Associate Justice of the Supreme Court on Saturday! A story in the Los Angeles Times acknowledged that Sotomayor’s experience as a Latina seemed to overshadow discussions about her qualifications during the debate and confirmation hearings. The reporter wrote that other aspects of her background that might influence her decisions were hardly mentioned in the Senate fight.

After she is sworn into office Saturday, she will be the only justice whose first language is not English. She has had diabetes since childhood — a medical condition classified as a disability under federal law.

A story in the New York Times compared Sotomayor’s attitude about her disability to the no-nonsense way she handles herself in court.

Judge Sonia Sotomayor carries a small black travel pouch, not much larger than a wallet. It contains the implements she needs — a blood sugar testing kit, a needle and insulin — to manage diabetes, a disease she has had for 46 years. Friends say she is not shy about using it.

“She’ll be eating Chinese dumplings,” said Xavier Romeu Matta, a former law clerk to the judge, “and she’ll say, ‘Excuse me sweetie,’ and pull out the kit and inject her insulin.”

That no-nonsense attitude, combined with the attention to detail that characterizes her legal opinions, has been a hallmark of Judge Sotomayor’s approach to Type 1 diabetes, according to friends, colleagues and her longtime doctor, Andrew Jay Drexler.

The Los Angeles times story reported that some lawyers are saying Sotomayor’s experience with a chronic illness is bound to influence her views.

“She may be a strong voice for access to healthcare,” said Sylvia Lazos, a law professor at the University of Nevada, Las Vegas. “She will be a real player in the debates over what is a disability.”

The Los Angeles Times article said that advocates for people with disabilities have suffered some major defeats in the Supreme Court the last decade, and they are very hopeful about Sotomayor’s appointment.

“We’re very excited. We don’t feel we have had a champion on the current court,” said Andrew Imparato, president of the American Association of People with Disabilities.

Lose the training wheels, and gain your independence
By Candy Porter

Last month I had the privilege of observing the opening and closing ceremonies of the Lose The Training Wheels camp here at Easter Seals Crossroads. An article about our Lose the Training Wheels camp appeared at About Special Kids (ASK), a parent-to-parent Web site and resource for Indiana families with children who have special needs. The article described our program like this:

Children ages 8 to 18 with disabilities (such as autism, developmental delays, Down syndrome and cerebral palsy) are taught how to ride and transition to a conventional bike within a five-day period. The program utilizes adapted bikes and techniques developed by Dr. Richard Klein, a retired professor of mechanical engineering from the University of Illinois.

Think back to when you mastered a two-wheel bicycle — do you remember the time and place? I do — and that was over 55 years ago! What a life changing, growing experience it was. I have a feeling that it was even more so for our young riders.

I saw wobbly kids, scared kids and reluctant kids evolve overnight into successful kids, proud and confident. Better put: I saw earthbound caterpillars turn into soaring butterflies. What a joy — and privilege — to behold.

One of the best places to learn from the experts is at the Autism Society of America’s annual conference. This year’s conference had plenty of learning opportunities — people with autism shared their gifts and educated us neurotypicals about their challenges. Lars Perner, Judy Endow, and Sondra Williams (all individuals with autism spectrum disorders) delivered presentations and participated in a panel discussion regarding the Culture of Autism. The panel was masterfully facilitated by Brenda Smith-Myles. The panelists didn’t all agree about the current existence of a “culture” of autism, but all of them conveyed the unique nature of their autism and how it may contribute the emergence of a culture.

With years of experience as a professional in the field, I am regularly humbled by what I can still learn about autism. Sharing time and engaging in communication with people with autism will always be a contributor to my learning. Perhaps we can all learn from the experts a bit more at next years Autism Society conference in Dallas!

Along with other Easter Seals affiliate and national staff members who handle state government relations, I networked with state legislators, learned about the issues facing my state legislators, and educated legislators and their staff on issues facing Easter Seals.

I also wear the “autism spokesperson” hat for Easter Seals New Jersey, so I participated in a session for legislators called Autism Spectrum Disorders: State and Federal Policy Trends. The session was sponsored jointly by Easter Seals and the Association of University Centers on Disabilities (AUCD).

Our session began with George Jesien, executive director of AUCD, and Jennifer Bogin, project manager for AUCD, who discussed research, education and services for individuals with ASD. They were followed by Denise Rozell, assistant vice president for state government relations for Easter Seals. Denise detailed what’s new with state legislators and encouraged them to link to our 2009 State Autism Profiles. The profiles provide factual, objective descriptions of what the 50 states, D.C. and Puerto Rico are doing for people with autism.

After Denise, Pennsylvania Representative Dennis O’Brien and Maryland Representative Kirill Reznik captivated the audience with stories of how they advocate for people with autism. And then it was our turn: Charlie Briggs, assistant vice president of adult and community services for Easter Seals Goodwill Northern Rocky Mountain and I were prepared to discuss our state’s accomplishments and share some personal stories. The reason I say “were prepared” is that the session ran long. By the time Charlie and I were supposed to speak, attending legislators and their staff needed to get on their way to the next event. Bill Gates was presenting immediately following our session! And while fans of Charlie and me would agree that we are two of the most engaging and amazing speakers, we recognized that we are not the great Gates. We let our fans move on.

What I had wanted to share with the audience was my viewpoint as a parent of a child with ASD — to help them understand why all of this matters. Two of the speakers had discussed “the cliff,” the feeling that many families experience when their child with autism turns 21 and the scope of services changes dramatically (for the worse).

My son is only 12 so I haven’t seen that particular cliff yet. But trust me, I’ve had many hair-raising experiences already with other cliffs. I’ve been on the edge, frustrated by the lack of available services my son desperately needed. That feeling is something you never forget. You want to give up and jump off. And, sometimes, you want to push someone else off with you while you’re at it!

I’m a resourceful person with a graduate degree in special education. I have a lifetime worth of contacts and experiences with supporting people with disabilities. I’m a blessed person surrounded by friends, family and colleagues who would all do whatever was necessary to help my son and me. I have a roof, a job and health insurance. But I still couldn’t find the services that would meet my son’s needs. If I can stand on the edge of that cliff and consider how much easier it would be to give up, one can only imagine what it’s like to be in a more challenging situation.

Whether you are a legislator, a friend, a supporter, a fan, a family member, or someone with ASD, you can’t ever give up. You can’t let the cliff get the best of you. Resisting the urge to jump can make you stronger. Let the cliff make the best of you, use your strength to give it all you have — ensure that people with ASD all over this country get the services they need. If we work together, maybe fewer people will end up living on the edge.