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NYSID News Blog

April 7, 2014

A Family’s Story of Autism, Optimism and Outstanding Achievement

Category: General — NYSID @ 3:35 pm

Vincent Femia is a 29-year-old autistic who resides with his parents, Patricia and David, in New Hartford. He is currently employed by Progress Industries, where he assembles and packages products as part of a vocational program offered by the Oneida-Lewis Chapter of the ARC. April is National Autism Awareness Month, and David Femia was delighted to share Vincent’s story.

Vincent David Femia was born on October 20, 1984. Typical of classic autism, his progress during the first year of life was normal in regard to early milestone development, including smiling in the first few weeks, rolling over at six months, sitting alone at seven months and walking by one year. At that time, he had a working vocabulary of around 20 words, as well as appropriate names for familiar faces. At 18 months, however, it was noticed he stopped acquiring new words and had begun a vocabulary regression resulting in the loss of all language.

He remains entirely non-verbal to this day.

These circumstances prompted an exam with a local pediatric neurologist who concluded Vincent was “developmentally delayed with autistic tendencies.” With little regard to the concept of sensitivity, he tactlessly added Vincent would be a “cross to bear.”

Seeking a second opinion, I arranged for a comprehensive work-up to be conducted by an international group of neurologists at the Eunice Kennedy Shriver Center at the University of Massachusetts Medical School. A battery of tests and observations over a three-day period confirmed Vincent’s pathology with a diagnosis stating “autism of unknown etiology.”

After the numbing shock from learning I had become a parent of a disabled child, I found myself thrust into a world of uncertainty and confusion. In 1985, autism was a relatively arcane brain disorder. Today, nearly 30 years later, it remains a mystery in many ways.

My initial feelings were a toxic concoction of negativity. I was convinced I would miss out on all the things fathers typically dream about doing with their sons. This sentiment was compounded by the painful notion my loving wife would be forever cheated from hearing the simple words all mothers live for: “Mommy, I love you.”

It was difficult, if not impossible, to imagine playing catch, swimming or riding a bike with a child who spent the greater part of every day sitting on the floor incessantly rocking back and forth. Vincent abruptly stopped showing any affection and showed little emotion. He became “tactile defensive,” frantically resisting being touched or held. This dramatic change was punctuated with another graphically disturbing behavior. He ceased making eye contact during any interaction with people.

I now recall the rare times he would allow me to embrace him and the irony of thinking, I am holding my son, but he is not here. He is lost somewhere and not coming back.

These feelings decimated the very concept of hope.

My faith was brought into question and summarily unanswered.

Conflicting emotions of anger and fear combined with uncertainty proved to be severly debilitating for me. Externally, I attempted to hide these feelings by containing them in a shell, foolishly thinking it would mitigate these dire circumstances.

It proved to be a bad choice.

The construct of that strategy blinded me.

In time, however, I came to see a proverbial “silver lining” on the dark cloud that had descended upon me.

It was of a blessing.

A divine blessing.

A blessing manifested in the form of Vincent’s mother and my wife, Patty.

While she, too, was deeply saddened by Vincent’s prognosis, her faith never wavered. Her choice was to believe Vincent was part of God’s plan regardless of outcome.

A better advocate my son could not have.

Patty quickly recognized the importance of early intervention and networking. She worked tirelessly to educate and avail herself of all the various services that might help Vincent. She quickly developed a relationship with the Family Advocacy Center and became a member of the board for our local ARC. She was vigilant in regard to Vincent’s early and continuing education programs, routinely monitoring them to ensure there were inclusive and a good fit. Overtime this became a valuable skill set, one she freely used to help other parents of children with disabilities.

I, too, became part of her mission. She solicited me to get Vincent involved with Special Olympics New York (SONY). This in itself was transformational. Not only did it help Vincent hone excellent social skills, it also became a major component of our collective social life. We both have served as volunteer coaches for 15 years and consider our athletes as extended family. More often than not, when our phone rings, it is one of our athletes wanting to talk to Patty, who will drop whatever she is doing to give them the time they need. She is as kind and gentle of a spirit that you will find. After 30 years of marriage, she remains most “selfless” person I have ever encountered.

And while there is no question the aforementioned positively and significantly contributed to the success of Vincent’s development the “straw that stirred the drink” was what all good mothers do best: nurture.

She was and continues to be an example of what may be the gold standard for maternal love. A love that is organic, compassionate, objective, tough when necessary, and always in her child’s best interest.

You may be familiar with the label “high functioning Autistic.”

Does Vincent qualify?

I don’t know, but he certainly chose his mother wisely.

The result of Patty navigating Vincent’s journey has been remarkable. He has an impressive list of accomplishments, many of which came from his involvement with Special Olympics New York. He is a three-sport, all season athlete competing in swimming, cycling and Nordic skiing. His crowning moment occurred when he was selected to represent Team USA at the 2009 Winter World Games in Boise, ID, where he performed beyond expectations. He medaled in all three of his events; bronze in the 5K, silver in the 7.5K and gold in the 4 x 1K relay. Upon arriving home, then-Congressman Michael Arcuri hosted a ceremony paying tribute to Vincent and his World Game achievements.

His deeds, however, are not limited to athletics.

In 2006, he graduated from Sauquoit Valley High School with an Individualized Education Program Diploma, along with a Certificate of Completion for a Career Options Program from BOCES. Subsequently, he began employment at Progress Industries packing and assembling products as part of a vocational program offered by the Oneida-Lewis Chapter of the ARC. His transition to the world of work was seamless. From the beginning, we received continuous positive feedback regarding his productivity. Last year, he was acknowledged for what has become a legendary work ethic by receiving a William B. Joslin Outstanding Performance Award from NYSID, along with a $500 check!

Recently, he has taken advantage of an opportunity to become an equestrian. To observe the joy he experiences both riding and grooming horses would make your heart light.

Now we have yet another reason to celebrate our son.

Each year our local Friends of the ARC participate in the Utica Boilermaker Charity Bib Program. The Boilermaker is a 15K Road Race and the largest of this distance in the country. This year, registration for the event sold out in a matter of hours and capped out at 14,000 runners. Friends of the ARC run the race representing clients of the ARC and solicit pledges in their name. This year for the first time, one of those clients will be running for himself.

Guess who?

Hint: He was once characterized as a “cross to bear.”

If you, like me, are a sucker for stories with happy endings, you have got to love my guy!

Despite my obvious prejudice, it is truly fitting Vincent be part of National Autism Awareness Month. Education laced with love is a powerful force, one that has given my son a meaningful, productive and purpose driven life. We hope his story may be a source of hope and inspiration to all in the autistic community.


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