“Courageous Guy”: A Superhero on the Spectrum

Before connecting with INCLUDEnyc, Theo, age 7, and his parents were feeling alone, but for different reasons. 

Theo, who currently prefers to go by “Courageous Guy,” is autistic and has ADHD.  He feels different from most kids. He is very aware that his experience of the world is different from many of his peers and perceived this as something negative. He was often angry and upset, trying to fit into a world that ignores his needs. Courageous Guy enjoys learning and making friends and especially wanted to find some enrichment activities or summer programs. Everywhere his parents looked, the only available options required a lot of adaptation to make a fit.

Then, Courageous Guy went to the INCLUDEnyc Fair, the largest disability resource fair in NYC. Everywhere he looked at the INCLUDEnyc Fair, Courageous Guy saw “AUTISM.” He shouted “look, look!” and pointed out each sign to his mom. “He was so excited to be surrounded by other kids with visible and invisible disabilities,” his mom Sarah explained. “He was proud to see himself represented and be a part of a community that accepted him,” she said. Courageous Guy was also connected to an after-school program that he’s extremely excited about. He even made a map at home of some of the summer camps he learned about at the fair. 

Sarah and her husband Steve proved their superhero strength navigating their own journey. Sitting with Theo’s Individualized Education Plan (IEP), they felt alone. The IEP language was difficult and what Sarah calls a “wall of text.” Sarah decided to stop by one of INCLUDEnyc’s “Understanding Your Child’s IEP” workshops. “Your educator Ruth DiRoma was so helpful. After the workshop, I had a better understanding of what the document meant and felt confident advocating for more support. I also thought of the document more positively. It’s not just a repetitive chart full of jargon; it’s a tool to set shared expectations with the IEP team,” she explained. 

Then, Sarah and Steve were having trouble navigating the application process for Office for People with Developmental Disabilities (OPWDD). Sarah called the INCLUDEnyc Help Line and spoke to another educator. With Kpana Kpoto’s help, Courageous Guy’s superhero parents are far in the application process. Sarah attended a Front Door orientation session, connected with a care coordinator, and has identified a broker and an FI (after first learning what that acronym means).  “Kpana walked me through this process. No one at the agency level tells you how to put all the pieces together. Figuring all of this out is like another full-time job. It’s such a huge relief and a massive help to talk to someone who has worked through this many times before,” she said.