Creating a Future for My Son with Special Needs

When people ask what it’s like to have a child with special needs, my response is: It’s like dark chocolate, bittersweet. My beautiful, healthy 9-pound baby boy, Nicholas, was diagnosed with autism at age 3, and from that day forward a revolving door of therapists came to our home every day until 6pm. To make matters worse, Nicholas never developed speech and started having seizures at age 17. When Nicholas was young, we wanted to believe he would “outgrow” autism, or science would find a “cure” for the diagnosis. But, as the years passed and reality set in, we started dealing better with the “what is” and “what needs to happen.” His options–day-hab, residential, supported employment–were not right for him. I visited many programs but started crying when I returned to my car after the tour. Then, after our lives took an unexpected turn, I decided to do something about this in Port Washington.

A tsunami of young adults on the autism spectrum would be transitioning in three years, with more going forward every year and New York state was most definitely not prepared. To discuss Nicholas’ future with my husband was painful. He could not accept that we had to carve out a different future for our son; one without a driver’s license, college, marriage, children, and grandchildren, but one that needed much thought and financial planning. Autism broke my husband’s heart, and then my heart was broken for a second time on June 7, 2010 when my husband boarded a business flight to Vegas, suffered a massive heart attack, and died at the age of 55.

Kobi Yamada wrote a book called What Do You Do with a Chance? The moral of the story is, when given a chance, you always take it “because it just might be the start of something incredible.” And that’s precisely what I did.

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