Vincent Randazzo’s son Michael was diagnosed with Down syndrome early in life, leading Vincent to become actively involved with the National Down Syndrome Society (NDSS). Autism Speaks and NDSS are now partnering in their support before Congress for the Achieving a Better Life Experience (ABLE) Act which would allow families raising children with disabilities, such as autism or Down syndrome, to save tax-free for their future needs.
Vincent Randazzo explains how his family’s connection with autism runs even deeper.
When my son Michael was born with Down syndrome 13 years ago, my wife Dorothy and I were upset and sad for Michael that he would not experience a normal life. Because of our circumstances, however, we did not experience the sense of terror that so many parents face when they get the news that their newborn has a developmental disability.
Michael has a brother and a sister who would love him and care for him like any other sibling. At the time, my wife was a public health nurse in the public school system and an advocate for students with special needs. We quickly became aware that medical research had advanced to the point where people with Down syndrome were living much longer and more fulfilling lives, and the future held exponentially greater promise.
I immediately engaged in Down syndrome advocacy, supporting the priorities of the National Down Syndrome Society and serving on the boards of a local parent support group and a national research foundation. But within a few years, everything we thought we knew about Michael’s condition, and how to give him the best chance at living an independent life, was turned upside down.
Around age four, we started to notice that Michael’s developmental progress had stopped and, in many ways, he was regressing. He became less talkative, developed verbal tics, and made eye contact less often. He would obsess about movie videos, ceiling fans, and where we placed his food on the plate. We would attend social gatherings hosted by the local Down syndrome support organization, and notice that he was socially different than most of the other children. He didn’t play or interact with his peers the way a typical child with Down syndrome did.
During family vacations or visits with friends and relatives, Michael would be irritable and disruptive. He would be violent toward other children, grabbing their necks, hitting them in the face or pushing them to the ground. We were always being told that people with Down syndrome were so lovable and good-natured. Why wasn’t that the case with our son?
Around age 5, we started raising concerns about Michael’s developmental issues with his pediatrician and pediatric neurologist, and told that people with Down syndrome have varying degrees of the disability. During one medical visit, we were told “so what if he had autism, what difference would it make?” One neurologist actually treated him for Attention Deficit Hyperactivity Disorder.
At about age 8, we brought up our suspicions about autism withMichael’s teachers and, to our surprise, they acknowledged the possibility. We were referred to TEACCH, a group at the University of North Carolina Medical School in Chapel Hill which works with individuals with autism spectrum disorders and their families by providing clinical services, training teachers and care providers, and conducting psychological, educational, and biomedical research.
The initial screening determined that Michael met the criteria to be tested, and we were put on an 18-month wait list to be evaluated for autism. He was finally tested around age 10. The conclusion was that Michael had moderate autism, and that autism – not Down syndrome – was his primary disability.
We were advised to change the way we think about Michael’s disability and how to plan for him medically, socially and educationally. After having been encouraged to put Michael in inclusive educational, social and family situations where he was continuously failing, we now know that a self-contained environment was best. The medicines he took and the way his medical providers approached his care significantly changed. With the dual diagnosis, he became eligible for supportive services from the State, and his school IEP was revised to emphasize more life skills and social goals.
The dual diagnosis and subsequent changes in the way we approach Michael’s disability have not alleviated his life challenges. In fact, as he has grown older, those challenges have only increased. But the diagnosis has provided relief to our family because we now understand him better. We know that transitions are hard and social situations are so difficult for him, so we know how to plan for them. And I am no longer constantly frustrated and angry with his inability to do simple tasks.
Having more realistic expectations about his progress and goals in life has actually led me to dream about someday starting a business together when Michael finishes school and I retire.