INCLUDEnyc Voices

Navigating the system: How INCLUDEnyc pulled me through

My first experience with the disability world came about 2.5 years ago when my son Julian was diagnosed with autism spectrum disorder and sensory processing disorder. I felt a whirlwind of emotions when he was diagnosed: I was happy because finally I could start to learn how to help him and about his disability, but also fearful because I wondered how the non-disabled world would treat him.

Through early intervention, Julian was able to make an enormous amount of progress thanks to his Applied Behavior Analysis (ABA) and speech therapists. When it came time for preschool, we hit lots of bumps in the road, but I was able to speak to the educators at INCLUDEnyc (Kpana, Ruth, and Jean) in order to prep for my initial Individualized Education Program (IEP) meeting. The meeting went well and I thought we had picked out the best placement for him.

Well, it wasn’t the last of the bumps in the road that I would face when it came to Julian’s education. Fast forward to January of his first year in preschool, and I had to turn to the educators at INCLUDEnyc once again. I received my first progress report from his school and it showed regression in every aspect of his development. As it turns out, the placement I initially thought would be best was too restrictive for him and he was the highest functioning child in his class. It felt like all the progress we had worked so hard on was disappearing before my eyes.

I spoke to Jean, Kpana, and Ruth and explained what was happening, and they asked me something that I would never forget: “What do you want for Julian?”

Before this moment, I had never stopped to think about what I felt he needed; I realized that what I wanted was for him to have peers that he could learn and model from and I wanted him to be given opportunities to learn new ways to handle situations, but most importantly, I wanted him to have the opportunity to be in an inclusive environment.

With the help of the educators, I changed his school, and he was placed in an Integrated Co-Teaching classroom with the aid of a paraprofessional. Julian is now flourishing, and I don’t think I could have done it without the guidance and information the educators gave me. Not only did they give me knowledge, but also the confidence I needed to become Julian’s best advocate once again, and now I know this is a role I will have for most of his childhood until I can help him learn to advocate for his own needs.

I use all of my experiences and all of the things I have learned from the educators here to help other parents who, like me, are navigating the system.  I look forward to working with INCLUDEnyc to grow early childhood programming, and to empower parents from the very beginning of the early intervention process. I will continue to tell parents to trust their instincts because they know their child best. But, most importantly, for #futureINCLUDEnyc, I look forward to us growing as an organization and continuing to hire more people of color in all roles who can relate to the communities that we serve. The work that we do is crucial across the city, and it is important both empower them to be the best advocates for their children, and to show them we know who they are.

- Millie