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Connecting with My Community

Published
July 7, 2020
By
José Manuel Simián
Type
Community Voices
A father carries his young daughter in his arms at a parade. Both are wearing bright orange shirts.

My daughter Levi is 6 years old, has global developmental delays, epilepsy and is on the spectrum. Over time, her progress hasn’t been linear and as a parent, this is discouraging. It’s a struggle to see Levi take two steps forward, then two steps backwards. All kids are different, but this seems to be a common experience for parents of kids with disabilities.

As a family, we are able to cope and get through this with our community. My community is a combination of people, like the professionals who work with Levi, teachers at her school—and the INCLUDEnyc family. 

Like many parents who have called the Help Line, I’ve consulted INCLUDEnyc educators on various issues. I’ve spoken to Jean Mizutani when I was looking for the right school for Levi. I’ve spoken to Kpana Kpoto on how to apply for OPWDD services. These educators, many of whom are parents of children with disabilities themselves, help me feel informed, assured, and understood as I go through this process. 

I can say the same for my fellow board members. Many of their children are grown and they have the wisdom of their experiences. When I am frustrated, I’m able to talk to them and know that, in time, things will improve. I’ll resolve an issue with a school or secure services that Levi needs. I have confidence that I’ll see my daughter take steps forward.

I truly believe that the moment you become the parent of a kid with disabilities, you become an activist. INCLUDEnyc is the place where I’ve been able to articulate that activism and work towards making the world a more accessible, inclusive place. Last year, it meant so much to me to participate in the Disability Pride Parade with my daughter and the feeling that there’s many of us in this fight has made me not only feel supported, but part of something much larger than Levi and myself.