The boys of summer
by Ellen
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!