The Greatest Gift

Mike Barbour is an Assistant Professor of Nursing at Florida State University. He loves to travel, has a love for theatre and is the father of two. I met Mike in his role as Dad — I’m friends and colleagues with his daughter Amy. I had the pleasure of sharing time and space with Mike when he and Amy’s brother Ian came to visit her home in Hawaii. What a pleasure it was to see this family in action during their visit. Ian is celebrated by this family for the man that he is — funny, engaging, energetic and a person with autism. Mike shines in his role as Dad with both Ian and Amy.
— Patricia Wright

The Greatest Gift

My son Ian is 21 years old. With Father’s Day fast approaching, I reflect on how life with this wonderful boy has affected me. Ian lives with autism and Fragile X Syndrome. His IQ is extremely low, so his understanding of Father’s Day as a holiday is quite limited. In fact, excessive talk, planning, etc., about special days makes him extremely nervous. I choose to keep it “low key.”

When Ian came into my life, I was in denial about his condition. As a registered nurse, I was trying (pretending) to champion the way for meeting his needs. As a professional, I found myself to be totally inadequate in securing the resources he desperately needed. My wife proved her strength during this time as she opened doors for early intervention opportunities. In addition, Ian was blessed with a 7-year-old sister, Amy, who adored him just because he was her younger brother. Ian’s strong bond with Amy helped him to develop and achieve milestones as much as anything else we provided for him. The bond they had was truly amazing! Amy later chose to make special education her life’s work. She completed graduate school at Florida State University and now works in a school on the island of Oahu.

In the early years, I sought various sources to help me cope and learn. One of the best things I found was an essay written by Jim Sinclair. The essay, entitled, “Don’t Mourn for Us” was published in “Our Voice,” the newsletter of Autism Network International, in 1993. I just needed to accept Ian for who he was, and Jim’s poignant writing allowed me to view the world differently through Ian’s eyes. As Jim collectively described those living in the world of autism, “We are alive. We are real. And we’re here waiting for you.” Reading Jim’s essay, the works of Temple Grandin, and others, helped me rethink my life. This newly-discovered consciousness permitted me to really explore the world of such a remarkable, funny, loving, unique, and interesting young man who was a part of me. The journey has completely changed and enhanced my life.

Ian has given me the perspective to focus on what matters most — every day and every minute. Through him, I have been able to polish my relationships with other people, become quite a good cook, feel music with passion, raise beautiful plants, and relax. Through the years, we have done so many things together. During some of our excursions and travels, I discovered that in addition to his love for sports, he also enjoyed the opera. I remember watching a tear roll down his cheek when he heard a baritone sing his favorite piece, Nessun Dorma (the finale from the Puccini opera, Turandot). I’m sure he thought the piece was performed solely for him. Ian has shown me that, sometimes when the sky is gray, we can all feel better by eating a cheeseburger and just “chilling out.” He is filled with joy and it is highly contagious!

This year, Father’s Day is very special because Ian graduated from high school. He will still spend the upcoming year in the school system working on possible job placement. What will happen after that is uncertain, but he has developed and improved his skills tremendously in the past year, so I feel very positive about his potential. For the actual Father’s Day holiday, I will spend the weekend with him and just enjoy every minute. I’ve been able to achieve and exceed many goals in my life. But without question, being “Dadzo” to Ian is the greatest Father’s Day gift any man could ever receive.

 

The chronicles of Ben

At Easter Seals we talk a lot about success. We link to stories about our child and adult representatives and we tell stories meant to inspire. There’s good reason to – – our services and supports help thousands of people every year.

We’re also very aware of the challenges people with autism and their loved ones face on a daily basis. This Chicago Tribune article by David Royko is a candid, funny, heart-wrenching account of his family’s decision to send his 12-year-old son Ben to a residential treatment facility.

 

We’re about service

Autism is receiving a lot of attention –- here at Easter Seals, in the press, in the legislature –- it’s everywhere. And a lot of that attention is paid to “cause and cure.” Today a large court hearing begins in the area of vaccines and their link to autism.

Our society likes to have clear answers. When I meet people and share that I am an autism specialist one of the first questions they ask is “what causes it?” Unfortunately there isn’t a lot of clarity in the cause. It is a controversial and divisive issue. There is a lot of knowledge, however, in effective supports for people with autism. With effective treatment, individuals with autism can lead meaningful, productive and happy lives.

Watch Maurice Snell’s video for a great example of how Easter Seals’ services have directly benefited an individual. Maurice is an articulate young man with a great sense of humor. Whatever ’caused’ his autism, he would not be where he is today without the treatments and therapies he received from Easter Seals Therapeutic Day School. As Maurice himself says, “Easter Seals has brought me a long way.”

Finding a cause and perhaps a cure for autism are important issues that many organizations like Autism Speaks and the Centers for Disease Control have taken on as their mission. Easter Seals’ mission is to develop and provide direct service to ensure that individuals with autism can live, work, learn and play in their community. Today.

I do my work at Easter Seals to promote the most effective service delivery — to make living, working, learning and playing possible.

 

Reading about Autism at Book Expo America

Ellen Harrington-Kane’s blog on June 4th is the first of many book reviews we plan on posting on the Easter Seals autism blog. After all, there are plenty of books about autism to review!

Last weekend I was at Book Expo America at the Jacob K. Javits Convention Center in New York. Nearly 35,000 publishers, booksellers, authors, agents and librarians attended the four-day convention — it was wonderful to be around so many people who love books!

Although I was there for personal reasons — I have a new book coming out in October, I couldn’t help but think of Easter Seals and autism while I was perusing the booths.

Labosh Publishing was there — they offer tip booklets for families with Autism. Jessica Kingsley Publishers publishes books on the autism spectrum and also in the areas of parenting, special needs education and arts therapies. National Professional Resources, Inc. publishes staff development and teacher training resources in all sorts of topical areas such as special education, autism and gifted education. And lastly, Gryphon House, Inc. publishes activity books for teachers and parents, including one called Teaching Young Children With Autism Spectrum Disorder.

I’m sure there were many, many more books about autism at Book Expo America, but yeesh, that Javits Center can be hard on your feet — and paws! My Seeing Eye dog and I had a ball at the convention, but it’s good to be home, where I can return to finding out about books on autism the easy way: reading this blog!

 

Senator Clinton joins Easter Seals in honoring advocates

Recently the Easter Seals Advocacy Awards Benefit was held in Washington, D.C. with an all star cast.

We were thrilled that Sen. Hillary Clinton was able to drop by and give special recognition to Rep. John D. Dingell. Rep. Dingell was honored for his half-century of advocacy on behalf of the health of all Americans, including those with disabilities. In March, Sen. Clinton introduced the Expanding the Promise for Individuals with Autism Act.

Rep. Dingell joins a distinguished list of legislators who have received the Advocacy Award in years past, including U.S. Sens. Charles Grassley, Paul Sarbanes, Barbara Mikulski and John Warner; Reps. Steny Hoyer and Eleanor Holmes-Norton; and Secretary of Transportation Norman Mineta.

The Eastern Division of Safeway, Inc. was also honored for their efforts on behalf of those who need Easter Seals services the most. During the month of April, they raised $443,000 for Easter Seals.

Judy Woodruff of the NewsHour with Jim Lehrer was the Mistress of Ceremonies. Ms. Woodruff is no stranger to disabilities — her twenty-something son who has Spina Bifida worked in the Easter Seals Office of Public Affairs as an intern last summer.

Who knows what next year will bring?

 

Book Review: Stephen Shore’s “Beyond The Wall”

Cover of "Beyond The Wall"

You may be familiar with Stephen Shore. He’s an author, public speaker and member of the Autism Society of America’s Board of Directors. He’s also an adult on the spectrum. He gave the closing speech at the recent Easter Seals Training Conference. It was very engaging, with a modest humor.

Shore is good at explaining what autism is like to a “neurotypical” like me. I could start to imagine what his world might be like. Maybe autism is one extreme of a continuum of human experience. Perhaps it is, as Shore says, simply “a different way of being.”

Shore’s autobiography, Beyond the Wall, should be required reading by anyone involved with people with autism, including young adults with ASD. It’s sprinkled with comments from Shore, his mother, his wife and others, allowing the reader to see the story from different perspectives. Written with a touch of humor and ample doses of reality, it puts autism in an understandable framework. Through his life’s journey, Shore shows the importance of interdependence … as you see that the ability to communicate and engage with others is what ultimately results in his many accomplishments.

Stephen Shore speaks at the 2007 Easter Seals Training Conference

Shore’s stories about making friends, dating, and employment can be very helpful to others as they approach important milestones. His open sharing of growing up with some of the “pitfalls” of autism — and successfully navigating them — is one of his book’s most important features.

 

Nancy Pelosi’s National Summit on Children

Last Tuesday I was asked to speak on Capitol Hill at House Speaker Nancy Pelosi’s National Summit on Children. I was honored to appear at the summit along with 20 other national experts and academics. The focus of the summit was on recent scientific findings and how they relate to early childhood education. The audience included 300 national leaders in research and services to children.

House Speaker Nancy Pelosi and Easter Seals
Donna Davidson with U.S. House Speaker Nancy Pelosi

I had the opportunity to share my experiences as a speech and language pathologist, an administrator of Easter Seals North Georgia and as the parent of a child with a disability.

I spoke of the importance of early intervention and treatment for children with disabilities. We need to improve the overall quality of services through the funding of research on best practices, as well as the development and implementation of a set of standards for early intervention practice. I cited the treatment of autism in young children as an example. We need research on best practices to support the effectiveness of these treatments so that both public programs and private insurance will cover these types of interventions.

I also spoke about the importance of strengthening linkages between Medicare Part C, Medicaid, private insurance, Temporary Assistance for Needy Families (TANF), and early care and education systems to ensure that decisions are being made in the best interest of children with disabilities.

The room was filled with energy and excitement and I left feeling hopeful. As Rep. Fattah of Pennsylvania stated in his closing remarks, the summit gives members a “baseline of knowledge that will help Congress come to grips with its responsibilities to children and families.”

Read Donna Davidson’s bio.

 

Autism’s best friend

Recently, my Easter Seals colleague Ellen Harrington-Kane emailed me an article from the Star Tribune about a school in Canada that trains dogs to help people who have autism.

I am blind and use a Seeing Eye dog to guide me safely to work each day. Ellen knew I’d be interested in this story because I know how valuable a service dog can be. I’m delighted to hear stories of people with other disabilities benefiting from dogs trained to do work or perform tasks for their benefit. To qualify as a service animal under the Americans with Disabilities Act (ADA), a dog must be partnered with a person with a disability and individually trained to do work or perform tasks for the benefit of that person.

I lost my sight when I was 26 years old. In 1991, after four weeks of training in Morristown, New Jersey, I flew back to Chicago on my own, guided by my first Seeing Eye dog, a Black Lab named Dora. It was the first time I’d traveled alone since losing my sight. Now I work with Hanni, a Golden Retriever/Lab mix.

The Seeing Eye is 77 years old this year. Along with other training centers, they fought long and hard for the right of people with disabilities to bring service dogs to public places. There’s still work to be done. For example, we’re still working to bring our guide dogs with us on some international flights.

I hear about people bringing pets into places and claiming they are service animals. This makes me sad. Dogs who aren’t truly trained for this kind of work don’t qualify as service dogs under the Americans with Disabilities Act. Their presence could ruin the good name we’ve built over all these years. I know that any regulatory line can look arbitrary. And I know pets provide comfort and stress relief by their mere presence. But I worry that a backlash could result from unqualified dogs showing up in public places.

I’m glad to hear that National Service Dogs (NSD) of Kitchener, Ontario is serious about training dogs to do work or perform tasks for the benefit of people with autism.

 

Notes from the Hill

I’ve been doing public policy for more than 20 years, and I’ve seen a lot of issues rise and fall. The issues surrounding the needs of children and adults with disabilities keep rising to the top. I’m hopeful that we as a society will do something meaningful to help these families.

As Director of Congressional Relations for Easter Seals, I see a lot of similarities between how people with mental retardation were treated 30 years ago and how people with autism are treated today. Back then, people with developmental disabilities were considered too disruptive … incapable of holding down a job or living in their community. I’m hopeful that it won’t take us 30 years to change the way society feels about people with autism.

We have a good shot at getting funding for the Combating Autism Act. The CAA would fund activities that help people with autism live with equality, dignity, and independence. Congress is now beginning to decide on its funding and will make a final decision this summer. And the Expanding the Promise for Individuals with Autism Act is a bill that seeks to increase the supply of services for children and adults living with autism

I’ve been working to try to get groups that advocate for other types of people with disabilities to support autism-specific bills. So far, so good.

You can help too … ask your legislators to fund the Combating Autism Act and to support the Expanding the Promise for Individuals with Autism Act.

Read Katy Beh Neas’ bio

 

How do we define “appropriate” education?

Under the Individuals with Disabilities Education Act (IDEA), students with disabilities have a right to a free, appropriate, public education. But how do we define what’s appropriate for each child that enters a school system and is in need of services?

Ideally, an Individualized Educational Program team collaborates to define what that individualized education should entail for each child. But collaboration doesn’t always result in agreement. Parents and the school system may not be able to come to an agreement and litigation may result.

Yesterday’s Supreme Court ruling is a demonstration of how far parents are willing to go to secure what they perceive as an appropriate education for their child. Mr. and Ms. Winkelman felt that their son with autism needed to attend a specialized school for children with autism. The school district disagreed and litigation began.

The Winkelmans couldn’t afford an attorney, so Ms. Winkelman fought for the right to represent herself and her son in federal court –- how many of us would feel that passionate about a topic … to be willing to act as your own attorney in federal court! Ms. Winkelman was that passionate about securing what she felt was an appropriate education for her child.

For more information on special education law, and advocacy for children with disabilities, visit Wright’s Law.