INCLUDEnyc Voices

House on a hill: My 23-year journey with INCLUDEnyc

Helene and Jean at the 2018 INCLUDE AwardsThe first time I called Resources for Children with Special Needs (RCSN), I was looking for help for my 6 year old whom I suspected of having a disability. It was 1995 and computers were not an everyday thing, and looking for help meant talking to every teacher, social worker, doctor, and parent I could find. I finally gathered a list of about 10 names and numbers and was working through them, keeping track by noting the results of each call. Among numbers that I struck through or adorned with a question mark, RCSN earned a star! Helene Craner (pictured here with me) was my angel, whom I later learned was a founder. All I knew at the time was that the conversations we had gave me clear ways to frame my concerns, the language I needed to work with professionals, the ability to identify my goals, and understand which steps to take next.

I moved from a place of confusion and doubt to a path with markers to follow on my journey. The special education process is a long one, but knowing I had a place to call whenever I was unsure of my steps gave me the confidence to stay the course. Time passed as I made my way through the world of special education, and eventually found a good program for my daughter. At long last, things were going well and I was delighted to share the news with Helene when she made a final check-up call. To my surprise, she wasn't finished helping me yet. Hearing about the result of my advocacy efforts, she declared that I would make a good advocate and offered me a volunteer position with training! That was unexpected, to say the least. I was one parent out of many, and we had never met face to face.

But there was something in the stars that day. I wasn't looking for work, but I did have time as my daughter was doing well. I hesitated in fear for a minute, but like any parent of a child with a disability that has struggled through the system and come out on the other side, there was tremendous motivation to use the hard fought, hard won knowledge to help others. That personal experience was the first step to qualify me to be the person on the other end of the phone with parents.

I joined RSCN in 1998 as a volunteer and was warmly welcomed into a truly unique, one of a kind organization. Karen Schlesinger, founding Executive Director; Miguel Salazar, Director of Public Education; Roberto Romero, Senior Educator; Nina Lublin, Director of Early Childhood; and the unforgettable Gary Shulman, Community Resource Maven, were only too happy to train a newcomer. A year later, in 1999, I was invited to join RCSN as a member of the staff and have watched it grow and mature, with a combination of held breath, pride, and amusement that is familiar to any parent.

I always felt RCSN was like a "house on a hill,” an ideal where everything is exactly as it should be. Knowing it was and is here is reassuring. Several years ago, we embarked on a process to find our new name in response to changing times. We used surveys to research how our families felt about us, and read the words beacon, star, lifeboat, love, and hope.   

Parents’ hopes and dreams have not changed over the past 19 years. Even though there is now a computer in the palm of each hand, technology is no match for individual assistance. It's a great privilege to be a link between RCSN and present day INCLUDEnyc. Today, help continues to be available under the name INCLUDEnyc — from a person with lived experience loving and caring about someone with a disability, be it child, sibling, parent or spouse.

I can't end without sharing with you that my daughter is now an independent, self supporting adult. In a moment of insight at age 12, she said that if it wasn't for her disability, I wouldn't have been able to help all those other children. And that may very well be the secret sauce that, for 35 years, INCLUDEnyc keeps bringing to the table.

- Jean