A couple of months ago, I had the pleasure of meeting Assemblyman Angelo Santabarbara at his home in Rotterdam, New York. I was eager to sit down with the man who authored and sponsored the Autism Action NY bill, a plan that will centralize New York’s provision of continued and improved supports to members of the community who are on the autism spectrum.
This encounter with Santabarbara filled me with a sense of hope and increased expectation for my own son’s (5 years old, diagnosed with autism) future. While the Assemblyman and I talked about his vision for Autism Action NY, his son, Michael (15 years old, diagnosed with autism), returned home from his school day at Wildwood. Michael has limited language, and I was unable to understand his communication as he gestured and grunted to his father. I watched as the Assemblyman effortlessly responded to each form of communication with verbal responses that Michael understood. There is a beautiful bond between the two of them that is only made through time and a commitment to being the voice your child doesn’t have. Angelo Santabarbara is that voice in New York, not only for his son, but for all our children with autism. The Assemblyman continued to talk with me about how Michael’s capacity to learn is not slowing down, and they continue to see strides and progress. He told me that this is Michael’s community as much as it is mine or his, and that he wants Michael to be provided with the support to exercise as much independence as possible living in his community, yet also with the supports necessary to ensure his safety and success.
The Assemblyman explained that a critical component in the Autism Action NY Plan was recently enacted, creating the first Autism Spectrum Disorder Advisory Board. This board of 19 members, including 9 state agency commissioners, as well as 10 appointed self-advocates and family members, is the first step in a five-point plan to create more jobs, independence, increased communication, and supports throughout New York State. It will vet existing supports to make sure they are as up-to-date and useful as possible, while reviewing evidence-based efforts all over the country, ensuring that New York is on the cutting edge of opening doors and removing limitations for those on the spectrum.
While we were talking, the Assemblyman helped Michael to an afternoon snack of popcorn and juice, which Michael brought into the giant tent taking up the Santabarbaras’ entire living room floor. Here Michael happily enjoyed his peace and snack, and I acknowledged that the Assemblyman was on the other side of a step I’m about to take for my own son. My son will be going into kindergarten next year, and I will be trying to navigate the school system to provide my son with all the therapies, resources and advantages he may need to be successful. Angelo Santabarbara and his wife, Jen, will soon be seeing their son graduate and face yet a new step on the journey for parents of children on the spectrum. While I consume myself with figuring out how to make sure my son will thrive in school, they are preparing theirs to thrive outside of school.
I talked to the Assemblyman about some of my own frustrations in getting my son’s needs met, and we acknowledge the importance of timeliness for services and supports. “This is about receiving the right services at the right time” Santabarbara says, and he adds “I remember how alone we felt when Michael first received his diagnosis, but I want you to know that you are not alone.”
There may have been a time where I had seen Santabarbara and his son and felt sadness for the challenges that face Michael, or the heartache of a parent who must constantly break barriers for their child’s future, but instead I was completely uplifted. I saw that they had their flow. They had a rhythm and an understanding. I still struggle to understand my son, to wrap my head around autism. I can barely do what needs to be done in one day, so I can’t even begin to think of what we’ll do 10 years from now. I found relief in knowing that this family is out there, paving the way for my son. I saw a beautiful friendship between a father and his son, and I knew that it might not get easier but it does get better.
The Autism Spectrum Disorder Advisory Board meeting will be open to the public. In addition, all are welcome to attend the second annual Autism Action Day, located in the Well of the Legislative Office Building at the Capitol on April 5th, 2017 beginning at 9am.
If you want to learn more about these events, or other programs Assemblyman Santabarbara has been instrumental in bringing to his district, like Lifesaver or the Take Me Home Program, you can call his office at 518-382-2941 or visit his website at http://nyassembly.gov/mem/Angelo-Santabarbara/
I’d like to give a shout out to the Santabarbara family. First and foremost, to Michael for welcoming me into his tent and for giving me every reason to keep striving every day, continuing to believe in my son, and knowing that we cannot put a cap on the future of our children. Secondly to the entire Santabarbara family. I appreciate the Assemblyman taking the time to encourage me on my own path, and speak light into our future, as well as feeling very grateful for the kindness and understanding I’ve received from his wife, Jen, in the past. They have walked far more than a mile in my shoes, and are laced up for a marathon. I’m proud to be represented by Angelo Santabarbara and to continue to see the doors is Autism Action NY Plan opens for my son and all of New York’s children on the autism spectrum.
Janaiah von Hassel