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Parent to
Parent of New York State
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This page last updated on
June 4, 2008
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Regional Coordinator Our daughter, Sarah was born in 1985 with Cri-du-chat Syndrome also known as 5p-. Once we had the diagnosis, I knew I needed to get information. The library had no information so connecting with other parents was my only hope. I got the name and phone number of another parent who had a 5 year old daughter with Cri-du-chat syndrome. I was terrified to talk to her but gathered my courage and made the call. We talked on the phone and later met at her house for tea. We still connect albeit on an infrequent basis. Since Cri-du-chat is rare, I found my best support came from other parents whose children were close in age to Sarah. It didn’t seem to matter that their children had Cerebral Palsy, Down Syndrome, Autism, seizure disorders, etc.; we all had the need to connect about “special mom” stuff: therapy schedules, educational advocacy issues, dealing with extended family members and handling the looks and comments from strangers at the grocery store. Today, I am still in touch with parents I met 20 years ago, our need to connect remains even though the issues have changed from toilet training and educational advocacy to dealing with adult service providers and helping our young adults build meaningful lives for the future. I started working for Parent to Parent in 1995 because I believed in the power of connecting parents to each other. Connecting parents remains the primary focus of Parent to Parent. I especially enjoy connecting parents of very young children. As I talk to them their voices change when they learn I am a parent of a child with disabilities. It is nice to give them a strong start down their path of special parenting with the connections and resources they need for the journey. As a parent of a child with disabilities, you never outgrow your need to connect with other parents. The bonds that unite parents of children with special needs cross the lines of age, diagnosis and location. The ability to share tears of joy, concern, relief or fear becomes a powerful force that helps change the world for our children. Susie, Jack and Sarah Nettleton live in Fairport, New York.
Susie & Sarah Nettleton
Sarah Nettleton skiing solo at
Powder Mill Park
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