An electric experience in New Hampshire

Today my colleague at Easter Seals’ Office of Public Affairs, Jennifer Dexter, is guest-blogging from a presidential candidate’s forum on disability in New Hampshire. Jennifer is Assistant Vice President of Government Relations and works on housing, aging issues, assistive technology, telecommunications, transportation, and AgrAbility appropriations. It sounds like the forum is an exciting experience.Katy Beh Neas

An electric experience in New Hampshire
by Jennifer Dexter

I’m on lunch break at the first Presidential Candidate’s Forum on Equality, Opportunity and Access in Manchester, New Hampshire.

The forum is sponsored by over 20 national disability organizations, including Easter Seals. All major presidential candidates were invited to come and present their vision for the future of U.S. national disability policy. There are about 500 advocates in the room from New Hampshire and around the country. So far, Senators Hillary Clinton, Chris Dodd and Joe Biden have spoken and this afternoon Representative Dennis Kucinich, Senator John McCain and Senator Mike Gravel will address us.

I had to take a minute to share how electric this experience has been. To see people with disabilities treated as a significant voting block gives me hope for the future — that the needs of people with disabilities and their families will be prioritized by our leaders in a way they haven’t been before.

One of the most striking things about this experience has been how each candidate has clearly taken time to figure out what will set them apart in the area of disability. As a lobbyist, I know that there are a few “go to” issues that politicians usually identify as key for people with disabilities, things like the Americans with Disabilities Act and special education. The speakers here have certainly addressed those topics, but they’ve also each found something unique and important to them that will address an unmet need of people with disabilities.

It’s truly a testament to the importance of flexing our political muscle and making sure that candidates know that people with disabilities will have a significant say in who will be our next President. You can join us by signing up for our Legislative Action Network enewsletter.

 

Book review: Karen L. Simmons’ “Little Rainman”

Read more about Little Rainman at Amazon.Little Rainman: Autism — Through the Eyes of a Child takes what many children with Autism Spectrum Disorder (ASD) experience and puts it into words and pictures. It would be a wonderful book to share with children who have been diagnosed with autism. More importantly, I think this is a wonderful book to share with children in kindergarten and elementary school — it helps explain what life may be like for their peers who have autism.

As an Easter Seals Administrator and Speech and Language Pathologist, I spend a lot of time reading clinical textbooks, business books, and articles on the latest in best practices. It isn’t often I get to read a book written through the eyes of a child.

Little Rainman was a breath of fresh air. It was so revealing to hear a child explain the symptoms of a complex diagnosis that has baffled the most brilliant physicians, clinicians and researchers.

Simmons’ book describes symptoms and characteristics that we, as parents and clinicians, have observed in some children diagnosed with autism. The great thing is, she does it in language that’s easy for children with and without disabilities to understand.

This book helps readers understand that children with autism are not “strange” — they just process information differently. And just like all of us, people with autism have some skills that are strengths, other skills that are somewhat challenging.

Thanks to Karen and her son Jonathan for sharing this book with us.

 

Listening to families: early autism screening

By now you’ve all seen the wave of media coverage about the American Academy of Pediatrics’ (AAP) two most recent reports on autism.

A national AP article broke the story Monday. Truth is, though, that AAP has been encouraging its membership to conduct early screenings for some time. 

I was reminded, after hearing the stories from the AAP, about one of their own publications: “The Pediatrician’s Role in the Diagnosis and Management of Autistic Spectrum Disorder in Children.” This 2001 report suggests that “early diagnosis is dependent on listening to the parents’ concerns about their child’s development.”

Their studies showed that most parents were concerned by age 18 months — it took six months for them to seek help, and then when they did – 50% were reassured and told not to worry. The study found that the “usual interval between the parents’ first awareness of a concern and a definitive diagnosis of autism was almost four years.” 

The pediatrician has the greatest opportunity in the first two years of life to screen. But step one in the screening is to listen to families!

That’s where Easter Seals comes in – providing children and adults with autism critical services, treatment, and support.   

Read Scott Fogo’s biography.

 

Maurice Snell rocks on

I wonder what lies ahead of me as I spend my days being back to the normal Maurice Edward Snell, without the perks of being the Easter Seals 2007 National Adult Representative kicking in. All I can say is — I really enjoyed this time of my life when I visited several interesting places and met many people whom I consider “friends,” or “family” for that matter.

Even though my reign as National Adult Representative is over on paper, I’m still not through. I will still be around my Easter Seals Metropolitan Chicago’s Autism Therapeutic School job and partake on some traveling opportunities even after my 12 months of stardom is in the rear view mirror.

The reality is — I’m not going anywhere!

For the most part, I enjoyed being a part of yet another Easter Seals National Convention in Washington, D.C. I consider my trip “entertaining.” There was a special guest appearance by Bon Jovi… sort of, along with a spectacular evening with my own band, the Naturals, who courageously came out from my hometown of Chicago to perform for the wonderful people of Easter Seals.

Those people were in for a bigger treat that evening with Beth Finke making a special appearance to sign her newly published book about her and her lovely dog, as they travel to many places together. Even though it may be the Naturals night, it was still Beth’s night to celebrate too.

Sadly, I spent my last day in Washington, D.C. saying farewell to many of my colleagues whom I’ve had the pleasure of knowing for so long. That includes the people I’ve visited previously, and of course, my friends from Easter Seals.

Evidently, this is not the last of me with Easter Seals, Inc. I will be around for moral support, especially to David Owens and Scottie Gaither and their families. A great year lies ahead of them.

Here’s a toast to a new year for the 2008 Child and Adult Representatives — Scottie and David — I wish them the very best of luck and encourage them to ROCK ON!

 

Thumbs up for Music Within

Donna Smith is a colleague of mine from Easter Seals Project ACTION in Washington, D.C. She wrote with details about a movie that sounds very interesting, I thought I’d share this with our readers. 
– Beth Finke

Thumbs up for Music Within

by Donna Smith

A limited release of a movie titled Music Within starts this weekend. It is based on the life of Richard Pimentel and his experience with the disability movement as well as the training he developed to help employers become more comfortable with their reactions to people with disabilities.

There’s a great interview with Pimentel speaking about the movie, plus a listing of all its openings, at Diversity World.

Larry King calls Music Within “the sleeper of the year” and everything I’ve read thus far indicates that it’s really good. I hope a lot of people go out to see this movie so that it will be released in a bigger way later.

 

SOS: Save our SCHIP

In the “My day on Capitol Hill” post last week, I blogged about traveling with hundreds of Easter Seals advocates to talk to our legislators in Washington, D.C. Our goal was to encourage Congress to override President Bush’s veto of the State Children’s Health Insurance Plan (SCHIP) legislation.

By now you’ve heard — the House did not have the votes to override the President’s veto last week.

The failure to override the SCHIP veto was disappointing, of course. But still, I feel our day on Capitol Hill was NOT wasted. We feel really great about our effort and remain hopeful that a final SCHIP bill will become law.

Our visit to Capitol Hill put Easter Seals on the minds of our legislators. Speaker Nancy Pelosi mentioned Easter Seals several times in her statement to close the debate last week.

This morning, breaking news came in: the House of Representatives will vote TODAY on revised SCHIP legislation. Contact your representative now and ask them to vote in favor of this legislation today. The reauthorization of SCHIP is a priority for many human service and health organizations. Easter Seals, along with other advocacy organizations, encourages you to contact your legislators.

 

Maurice and the Houston Texans — playing together

I had to travel to Houston to take part in the Houston Tackles Autism campaign, which featured Houston Texans players Matt Schaub and Ahman Green, and the team at Reliant Energy. The event took place in front of an assembly of children at Thompson Elementary School.

It was the debut of their coloring book titled Playing Together: Tips from the Pros, which features Matt, Ahman, and some other characters from the Houston Texans organization. In this book, some of Houston’s favorite sport stars share tips to help kids look past disabilities and understand that kids with disabilities are just kids.

People in Houston can visit Papa John’s locations to obtain a book, or make a donation at www.houstontacklesautism.com to receive a downloadable version of some of the pages  (coming in the next week or so!).

Afterwards, Matt and Ahman were featured on ESPNEWS The Hot List where they discussed the campaign.

I enjoyed meeting these football players the first time I was in Houston but I enjoyed it even more meeting them the second time around, along with a group of school children, because what they do for many children is inspire hope.

 

Book review: Temple Grandin’s “Thinking in Pictures”

Read more about Thinking in Pictures at Amazon.Temple Grandin’s memoir, Thinking in Pictures: and Other Reports from My Life with Autism, recounts the journey of an isolated child struggling with a disorder that was fairly unknown at the time. The book celebrates Grandin’s self-discovery and eventual professional success as a professor of animal science.

The author’s insight on behavior, human and animal relationships, sensory issues and emotional development provides the reader with a greater understanding of the internal struggles that are “autism.”

I found this book particularly enlightening and inspirational. Grandin’s thorough portrayal of how she understands words — spoken or written – in visual pictures provides the reader with critical insight into the individual with autisms’ mind.

This is particularly important for educators, like me, so that we are able to maximize the potential of our learners. It is our job to redesign our teaching strategies and
educate our students in a fashion that reaches their individual learning modalities.

If you want a better understanding of the inner-workings of an
individual with autism, read Thinking in Pictures.

Read Heather Pint’s biography.

 

Book review: Pat Thomas’ “Don’t Call Me Special”

Read more about Don't Call Me Special at Amazon.Don’t Call Me Special: A First Look at Disability explains the importance of inclusion using language that children can understand — giving children a nice introduction to the importance of acceptance and tolerance.

I read this book to my 5-year-old daughter Cassidy’s class.

The book asks questions about what it means to have a disability, which generated a lively conversation with Cassidy’s classmates. The children were very willing to share their experiences and interactions.

The book also suggests activities to help children understand what life might be like with a disability — trying to navigate a room while blindfolded, or opening a sealed package while wearing heavy socks on their hands were two of the favorites.

Overall, Don’t Call Me Special was informative and a nice introduction into the subject of disability. Take it from my daughter — this is what Cassidy had to say about the book, “I like this book because it teaches me that people with disabilities want to be treated like everyone else.”

Read Paula Pompa-Craven’s biography.

 

My day on Capitol Hill

Yesterday, I was among hundreds of Easter Seals advocates who climbed into buses and rode to Capitol Hill. We descended on our senators and representatives to talk about the State Children’s Health Insurance Plan (SCHIP). Our goal was to encourage Congress to override President Bush’s veto of SCHIP legislation.

I traveled with volunteers and staff from our four Easter Seals affiliates in Florida. It was inspiring to see Easter Seals folks walking through the halls and engaging our representatives. I dropped off an information packet for Rep. Lincoln Diaz-Balart (R. – Fla.) and told his staff about our new Autism Center of Excellence in Daytona Beach. 

Then I trekked to Rep. C.W. Bill Young’s (R. – Fla.) office — they were very supportive of the SCHIP reauthorization and had already signed on as a sponsor for the Americans with Disabilities Restoration Act — yea! They received a brochure about our Center, too! 

Next, I visited Rep. Tom Feeney’s (R. – Fla.) office. Feeney had toured our Easter Seals facilities last month and actually saw firsthand the Autism Center of Excellence.

I also met with Rep. John Mica (R. – Fla.), who has been a good friend of Easter Seals in the past. Mica has helped us with several bills supporting people with disabilities, and was very interested in signing on as a sponsor for the ADA Restoration Act. Yea! At Mica’s office, I ran into Mike Matousek, who works for Mica and is the son of Diane Matousek. I know Diane from my work in Daytona Beach. Small world!

Those meetings were all in the afternoon — we had already met with our senators that morning!

One meeting went especially well. Sen. Bill Nelson (D. – Fla.) was on board and supported our efforts! The other visit with Sen. Mel Martinez (R. – Fla.) didn’t go quite as well, but we did a good job explaining our perspective and the need for the override.

At lunch I had a chance to sit down and talk with other Easter Seals folks — I heard very encouraging feedback about their visits.

One bit of advice though: if you ever have a chance to visit Capitol Hill, wear comfortable shoes.

I did, and I was very glad! After seven hours on the Hill, I was very tired! And my feet still do hurt a bit, I must admit. But I’m ecstatic about what we accomplished, and now I think everyone should pay a visit to Capitol Hill and their representatives — it’s a great experience!

Read Lynn Sinnott’s biography.