Yesterday, I ran 19 miles in 85 degree heat on a training run for the NYC ING Marathon on November 4. Half way through the run, when the ache and fatigue started to set in, and I was soaked to the skin with sweat, I thought to myself “Why am I doing this?” Then, as always, I smiled to myself and thought, “Because it is for Jack.”
Jack is my 22 year old son and he is severely affected with autism. As a young child, he had no eye contact and no receptive or expressive language. He flapped his hands, screeched, ran in circles and had tantrums. He had no interest in his siblings. A simple trip to the grocery store was a nightmare. As he grew, he began to have self- injurious behaviors and other behavior challenges. He hit himself in the head and hit his head on objects. There was no school or program which could help Jack at the time. No doctors had any answers. No local educators had any answers.
At the age of 7, Jack broke a window in our kitchen with his head. His behavior challenges and needs became so overwhelming, that we had to find a residential program where he could safely learn and thrive. Fortunately, we found The New England Center for Children (NECC) in Massachusetts. There he has learned to use a voice box to communicate, he is now happy and social, his eyes light up when he sees his family, he has learned independent living skills, enjoys leisure activities, and over his many years there his rates of challenging behavior have come down significantly. NECC probably saved his life.
Then last year, at 21 years of age, Jack aged out of his placement at NECC.
And Jack was not the only adult in New York State who was aging out of a student residential program and needed adult residential placement. When Jack was diagnosed at three, the incidence of autism was 5 in 10,000. Now it is 1 in 88.
It is funny how God provides opportunities for you and it is your job to take those opportunities. So at a neighborhood dinner party we were telling our story about our need to create a group home for Jack to our good friends, Mary Ann and Ken Dempsey. Ken Dempsey, CFO of Catholic Charities of NY, said to us, “I think Catholic Charities would be interested in doing that, Michele. Let me get you in touch with the right people.”
I will never forget that first meeting with Catholic Charities of NY. My husband and I met with Monsignor Kevin Sullivan, CEO, and some of his staff. We explained our situation and explained that Jack would soon have nowhere to live because the state had little funding for residential placements in general, and Jack needed a specialized residential placement that offered the program, Applied Behavioral Analysis (ABA)– a key to Jack’s learning success. No such program existed in New York State at that time.
I will never forget what Monsignor Sullivan said to me that day – “You need help. We will help you.” I had never heard those words in 21 years. And I soon learned that that is what Catholic Charities does every day for all people who need their help in all different capacities. They help without condition, without qualification, and without exception.
So again why am I running the NYC ING Marathon this year? Because I am on the Catholic Charities of NY inaugural team and Catholic Charities of NY has taken over for my son Jack where the New England Center for Children has left off. After 2 years of hard work, Cardinal McCloskey Community Services (CMCS) in Valhalla, NY, an umbrella agency under Catholic Charities of NY, has created, with the partnership of the four families of the residents, a residential program in Ossining, NY for Jack and 3 other autistic adults. They have worked diligently and tirelessly to create a program both at Day Habilitation and in their residential setting, which uses ABA as the teaching method for these adults. Now these adults have the opportunity to continue their journey in life to be the best that they can be.
I have run 3 marathons in my life to date. I will run another marathon on Sunday, November 4, 2012, for Catholic Charities and for Jack and for all autistic individuals everywhere. No matter how hard a training run is or how grueling a marathon experience, it will never be as hard a struggle as it is for my son Jack as he strives every day to perform his life tasks as independently as he can in our world. I will always run for Jack. Every day is a marathon for him.
I will never forget what Monsignor Sullivan said to me that day – “You need help. We will help you.”