Adults and autism: Our kids might outlive us

When my husband and I visited our son in his group home recently, I couldn’t get over how much he had grown. He’s a healthy boy! Well, really –- a healthy young man. And though many of us who have children with disabilities don’t like to think about it, it’s likely our children will outlive us.

While most people know about wills, few are well-versed in special legal and estate-planning matters when it comes to benefactors who have disabilities. My husband and I set up a special needs trust when our son was still in grade school. Our son will turn 21 this year –- taking a look at that document again is on our “to-do” list … we need to make sure nothing changes now that he’ll be an adult.

With your hands full trying to raise and advocate for your child, it’s hard to find time to prepare for one very likely possibility: a child with autism might outlive both parents.

The National Information Center for Children and Youth with Disabilities, a federally funded clearinghouse in Washington, D.C., offers estate planning advice when a child has a disability.

I found two pieces of advice from their list especially helpful:

  • Find a lawyer who specializes in legal and estate-planning matters for people with disabilities. For referrals, contact a local disabilities group or your local bar association.
  • Ask your lawyer about a “special needs trust” or similar arrangement that enables parents to leave assets for a child’s long-term needs and still preserve the child’s eligibility for valuable government benefits such as Social Security payments, health care, subsidized housing and personal attendant care.

It’s hard to add yet another thing to a “to-do” list, especially when it concerns something as morbid as death! But knowing our son has a special needs trust set up for him gives my husband and me some peace of mind.

Mass Mutual, one of Easter Seals’ national corporate partners, offers additional resources for people with disabilities and their families.

 

Reflections of a Grandfather on Father’s Day

Marguerite Colston is the Director of Communication for the Autism Society of America and the mother of Camden, a 7-year old boy with autism. Margi is one of our new friends from the Autism Society of America and has been generous with her time, advice and wonderful stories of Camden. When talking of Father’s Day, she immediately offered that her father, Camden’s grandfather, would love to share his thoughts about being a grandfather.
— Ellen Harrington-Kane

Reflections of a Grandfather on Father’s Day

By Bill Kirst

My grandson, Camden, is 7 years old and has Autism. But you know, he doesn’t even know it. I call him affectionately the “little guy.” My wife and I live in a condo on the 5th floor, and when he visits us, he always sees the trip up and down the elevator as an adventure. When he arrives on our floor and I open the door, he accelerates past us and goes into his routine — bouncing on the sofa, turning over the toy box and running back and forth down the long hall to the bedroom. He smiles at me like the cartoon character Stitch as if to say, “Grandpa, see if you can catch me.”

On special occasions such as Father’s Day, my daughter always dresses him in a classy outfit — such as corduroy pants, a button down shirt and a white sweater vest. Wow, does he look like Prince Charming — and he is!

On each and every day, but especially on special occasions like Father’s Day, I reflect on our family situation and pray for him and his mother — my daughter. While he will not grow up to play little league or later serve his country — as a soldier, sailor, airman or Marine, I am blessed to have him as my grandson. He is and will always remain my hero and my “little guy”.

And some day I hope he will have his own condo — so when the family visits him, they will enjoy the ride up and down HIS elevator!

 

The boys of summer

Jeff Sell is the Director of Chapters and Membership of the Autism Society of America, as well as a former board member — and the father of twin boys with autism. I first met Jeff at a conference on services for adults with autism where he was a speaker. Since then, he has been another great friend of Easter Seals as we help Easter Seals affiliates connect with their local Autism Society chapters. Jeff’s stories of his experiences with his boys have been educational and eye-opening — and always shared with an optimism and, often, a little humor.
— Ellen Harrington-Kane

The Boys of Summer

by Jeff Sell

When Ben and Joe were born it was one of the happiest days of my life. I’d always dreamed of having a son, but on that day my wife, Paula, and I were blessed with two precious sons.

I stopped by a sporting goods store that day and bought two small baseball gloves for my new little shortstop and second baseman. Perhaps my behavior was a bit premature, but I had already planned out their future. They’d play for the Yankees and turn a double play in under 2.4 seconds.

Little did we know how significantly our lives would change just two and a half years later when the boys were diagnosed with autism.

Diagnosis
When Ben was around nine months old, Paula noticed him acting differently and that he’d stopped responding to her voice. Over the next year, we came to realize the severity of Ben’s problems. Ben is a “profoundly” autistic young boy and possesses some of the classic characteristics that accompany autism: to date, he has never spoken a word, we have experienced gut-wrenching moments of him displaying self-injurious behaviors, and we are still trying to toilet train him at age 13. However, I have no doubt that he is smarter than me!

Joe continued to develop at a normal pace and was meeting all of the expected milestones. Then, around the age of 24 months, he too began slipping away. Today, Joe is able to speak but has significant language deficits and is considered to be on the “higher end” of the autism spectrum.

Coping
Paula and I handled the autism diagnoses differently. She was much more accepting. She pushed ahead and dealt with the news head-on. I felt sorry for myself and for what I perceived to be the loss of so many dreams that I’d concocted for my sons. I couldn’t understand what had happened to my twin boys. Why was this happening? How could I “fix” my sons? Would they ever play baseball or engage in the “normal” activities young boys enjoy? Typical Dad thoughts, I suppose.

I soon learned, however, to focus on the positive, rather than the negative. Ben and Joe have two sisters, Natalie and Gracie. There are plenty of stressful times involved with raising four children, two of whom have autism, but the glass is always half-full, not half-empty.

A Mother’s Care
Paula’s job is certainly the toughest job by far. She’s a teacher, cook, scheduler, chauffeur, nurse, doctor and an advocate — and she excels in each role. She’s also actively involved in the boys’ individualized school programs, working closely with their teachers. There’s never a dull moment in her day.

The boys’ needs vary because they are on opposite ends of the spectrum. Because of this, Paula and I share a unique insight into the issues that often divide our autism community (i.e. the most effective interventions). We notice that what may work for Joe may not work for Ben, be it a biomedical treatment or behavioral intervention. Their school programs are very different as well. With confidence, we can say we’ve seen firsthand the array of issues families of children with autism face.

A Father’s Voice
I am on a never-ending quest to find solutions to some of the global problems facing our autism community and will speak out on nearly every important issue. The boys were the reason I became involved with the Autism Society of America, where I served on the board for nearly 5 years, was elected as the 1st Vice President for the Society and was also the Government Relations Committee Chairman. Now, I’m a “staffer” for ASA and am one of the lucky ones that can say, “I love my job.”

My wife and I are indeed blessed. Our oldest daughter Natalie is a healthy 14-year-old. Ben and Joe are now 13 and Gracie is a 9-year-old fireball. We can’t think of a greater joy than the love we see flowing though the roots of our family. Also, we have been gifted with friendships from so many talented and dedicated giants in the autism world.

The boys continue to add to the dynamics of our family and make it “extra-special” with their unique personalities and needs. They impact our individual character and remind us to appreciate family and friends most of all, rather than money or material possessions.

They may not be headed for the Big Leagues as I had once planned, but the joy I experience from coaching Ben and Joe’s “special” little league team far exceeds anything that I could have ever imagined.

I am one lucky Dad.

Happy Father’s Day!

 

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.