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One Day is Here

This guest post is by Edward J. Nitkewicz a Senior Counsel to Sanders, Sanders, Block, Woycik, Viener & Grossman, where he concentrates in the representation of personal injury plaintiffs. Edward attended our Long Island Town Hall on Adult Services focused on housing and community living Wednesday. You can read the entire recap of this event here

“Let’s save tomorrow’s troubles for tomorrow.” I don’t know if I have ever read a more profound invitation than those simple words from author Patricia Briggs. As a parent of a child with autism, I know that it is simply impossible to get too comfortable enjoying that peaceful moment I currently reside in called the “the present.” My family’s next “tomorrow” draws closer with each passing day.

When I was a “baby parent” navigating the world of autism, I was almost immediately thrust into the complicated world of special education.  Early Intervention programs started promptly after my son Edward was diagnosed with autism. The new world we were navigating was essentially hoisted upon us and neither my wife nor I had much time to prepare or ponder the special education “chapter” of our lives.  We learned on the job and on the fly the new language of Special Education. Abbreviated terms flew at us faster than we could research them. “IEP”, “CSE”, “BIP”, and “FAPE” were intimidating concepts because we had no idea what they stood for yet we knew they were important to the success of our son’s special education programs. We attended seminars and workshops, we “Googled”, we called friends who preceded us down this complicated maze, and, ultimately, we figured out how to best advocate for our son Edward.

As I became more comfortable, I began representing fellow parents as a special education advocate and attorney. A few years later, I was invited to lecture on the subject of special education and I have been doing so frequently since then. I was feeling pretty good about my family’s navigation of this whole disability arena.

“ONE DAY, we will need to start planning for my son’s life as an adult with autism.” “ONE DAY, we will need to learn a whole new set of abbreviations.”  “ONE DAY, we will need to learn about Medicare, Medicaid Service Coordination, Waivers, and Individualized Service Plans.”

ONE DAY arrived on Wednesday at the Little Theatre at Farmingdale State College where the Long Island Chapter of Autism Speaks hosted a Town Hall on Adult Services for parents of children with autism and other disabilities.  I was privileged to listen to a series of amazing presentations which formally introduced me to the next chapter of my family’s journey through the world of autism advocacy.

John Lessard, the Executive Director of Developmental Disabilities Institute detailed some of the community living opportunities for people with autism and other developmental disabilities over the age of 21 throughout Nassau and Suffolk Counties. He shared the work that DDI does in helping families like mine secure community living opportunities. Neil Schweifel, the Assistant Executive Director of Life’s WORC, detailed the history of his remarkable organization and its role in providing residential services and support services to families of special needs adults. Michele Lawton, the President of Just Adult Care, Inc. (JAC), detailed her company’s incredible work as advocacy and funding consultants to families like mine. She detailed the steps necessary to construct, implement and fiscally sustain services and programs which are required to meet the needs of adults with autism and other disabilities. I am grateful to John, Neil and Michele for their insight, their expertise and their important work.

Marian Boehm is a Parent-Advocate who detailed her journey to locate and secure appropriate residential placements for her son. It was apparent that Marian’s experiences and the path she created for those like me who will follow her will never be fully appreciated. Listening to Marian speak, I was reminded of the strength, the dignity and the grace of another trailblazing woman I deeply admire, Rachel Robinson, the wife of Jackie Robinson. Marian gave me hope that if I follow a similar path and exhibit the same strength and determination as she did, my son would be well served as an adult with disabilities. Thanks to Marian for inspiring me and other parents who were in the room Wednesday.

Jodie Fox is a remarkable young woman who shared that she is on the autism spectrum. She is an incredible self-advocate who described her journey to secure meaningful residential, employment and social opportunities. I was privileged to personally meet her boyfriend who was present to witness her touching presentation. Jodie was passionate, confident and self-aware. I was impressed with her ability to share her challenges along with her successes. Thanks to Jodie for giving hope to so many parents and individuals on the Autism Spectrum who were present Wednesday.

As I listened to the incredible speakers on the program and to the “Q and A” that followed, I realized that I am, once again, a “baby parent.” I understand that I have much to learn and even more to do in this next phase of this journey of disability. A whole new set of abbreviations await my family’s attention. I will need to develop a full understanding of yet another language. And I must find the strength and drive that the initial diagnoses that my son suffered from autism once instilled in me.

I often cite dialogue from the movie “Parenthood.” My favorite scene depicts Jason Robards explaining that when you’re a parent, you always worry about your children, even after they become adults. You never get to cross the finish line. You never get to spike the ball. You simply always worry about your child. I believe those sentiments apply on an even deeper level to children with disabilities. But, because of the wonderful program sponsored by Autism Speaks Long Island, because of the important work of organizations like DDI, Life’s WORC and Just Adult Care, and because of the inspiring journeys of people like Marian Boehm and Jodie Fox, I know ONE DAY my son will live a fulfilling life as an adult with disabilities.    

The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.