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.
President Franklin D. Roosevelt’s powerful and iconic speech following the Pearl Harbor Attacks.
As we honor our military on this special day in our nation’s history, the Caring for Military Kids with Autism Act (HR.2288) continues to languish in Congress. Did you know that our service members lose all autism benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat?
The Caring for Military Kids with Autism Act would end that injustice against those who do so much for our country. HR.2288 would make clear that all military members, whether on active duty or retired, qualify for autism insurance benefits for their dependents. Take time today to help our military families.
Write your Member of Congress below and ask them to co-sponsor HR.2288! If they have already signed on, send them your thanks!
Here is How YOU Can Help:
|1) PLEASE ASK YOUR MEMBER OF CONGRESS TO CO-SPONSOR THE CARING FOR MILITARY KIDS WITH AUTISM ACT BY SENDING THEM AN EMAIL HERE. NOTE: We have it preloaded in the system so if your Member of Congress has already sponsored this legislation they will receive a thank you note; if not, they will receive a request to sign on as a co-sponsor. You can take action here.2) SPREAD THE WORD ON FACEBOOK. Post the following suggested message on your Facebook page:“SUPPORT OUR MILITARY FAMILIES! Email your Member of Congress to ask them to co-sponsor the Caring for Military Kids with Autism Act. Military members now lose their autism insurance benefits for their dependents once they leave active duty, even if medically retired after being wounded in combat. Help end this injustice against those who matter most to our country by taking action with your Member of Congress on the link below. Repost. Then write DONE so I can thank you!”LINK TO: www.autismvotes.org/Military Kids|
To learn more about the Caring for Military Kids with Autism Act, please visit our Military Families page.
Please stay alert as we guide the autism community in ways that can help make this a reality for our military families. Let’s serve those who serve us! They have put their lives on the line to preserve our freedom, right to vote and opportunity to approach our political leaders every single day. Their children deserve appropriate coverage.
See how many people YOU can activate to help!
This is a guest post by Sharon Rosenbloom. Sharon is a speech and language Pathologist, autism consultant, and author of the award winning book: Souls: Beneath and Beyond Autism. She is the mother of Joey Rosenbloom, a 22 year old with autism. Sharon and Joey, along with their family members Raia and Bob, are passionate advocates for individuals living with autism – especially those with limited access to communication.
On July 15, my son Joey climbed the steps of the Russell Senate Office Building on Capitol Hill, Washington, D.C. Watching him, it struck me that for a person with autism; this was not so much “The Hill” as yet another mountain to be climbed. To the casual observer, those steps looked deceptively easy. But for Joey, a 22-year-old man with autism, the journey that brought him to Washington, D.C. with the honor of testifying as part of the Advancing Futures for Adults with Autism Congressional Briefing had been a long and arduous one. This was never more evident than as he ascended those steps. Only those of us who live in the world of autism can imagine the amount of effort it took for Joey to simply wear a suit, let alone develop the skills to access a voice, manage crippling anxiety and transcend the abyss from autism to the steps of this historical government building.
As both Joey’s anchor and rudder, I begged my eyes to stay dry and my heart to stop racing, in order to be the calm presence he needed as he viewed this audience of influence seated before him in The Kennedy Caucus Room. On every level of our senses, each of us at that table knew the importance of this unprecedented event: here sat the faces of adults with autism, each one representing a story of relentless effort and unwavering hope. Finally, beyond the statistics and symptoms, those given the label of autism were truly going to speak. I knew all too well that each panelist with autism had spent their entire life being judged for what the textbooks called “idiosyncratic” behaviors. Yet on this day, these remarkable individuals were being given an opportunity to represent the truth about what adults living with autism have the potential to be, and how the ceaseless love and energy poured onto them yielded extraordinary returns on that investment. As Joey fidgeted with the microphone, I was filled with profound respect for him that dropped a blanket of calm over the sharp edges of my apprehension. Overwhelmed by emotion, I took Joey’s hand, and he let me hold it. I found myself replacing that familiar anticipation of stinging public scrutiny with a prayer that those watching might see each panelist with the eyes of their hearts, listen with their minds wide open and ready themselves for paradigms to shift.
As the last thought was shared and the audience rose to their feet, filling the room with applause, I caught a glimpse of something I had never seen: pride, spreading like a smile across my son’s face. It was then I knew I had witnessed a milestone event which had lit a small candle of hope for Joey, and for all those labeled with autism: that by the miracle of human connection they might now be viewed, if for only those brief moments, through a truer lens.