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It Gets Better: Raising a Special Needs Child, Part III

May 19, 2017

 

Leslie Winston of Mother Brooklyn shares the latest installment of her story of raising a special needs child. 


It took a while, but life did get better.

After a lot of research and insurance nightmares, we found an excellent behavioral therapist, Ryan. Ryan worked with JP in our home and bridged the gap between home and school, where he saw JP behave in two different ways. In the first month, Ryan made a plan to get JP to talk at school. He came over in the morning before school started and engaged JP. We all got in the car and I drove to school. Ryan sat in the back with JP engrossing him in conversation the whole ride. When we arrived at the school, Ryan literally walked from the car into the classroom backwards so he could maintain the conversation with JP while walking. JP never noticed that he was inside the school and he continued to converse with Ryan. I’ll never forgot the moment as the three of us walked down the hall to JP’s classroom and the school staff stood off to the side, giving us space and smiling in disbelief. “See, we told you, JP can talk!”

JP’s teacher naturally sat at the classroom table next to JP and took over the conversation while Ryan backed off. It still took a few more weeks for JP to talk at full volume. But all of a sudden the teachers realized JP had a lot of knowledge and could answer questions. And they decided he was in the right class after all.

JP stayed at his preschool through the summer he turned five. With the help of the entire school community, he thrived for the nearly 18 months he was there. All of the staff were excellent, but JP’s speech therapist made a special connection with him. She got to know him well enough to understand that he could talk and had things to say. She was tough on him in a caring way, slowly getting JP to come out of his shell. We were so thankful that JP had consistency at that time. His teachers and support therapists stayed with him from day one until he graduated preschool.

But our work wasn’t done. As any NYC public school parent knows, it takes a lot of time and research to find a school that is a good fit for your child. Throw in an ASD diagnosis and our hunt for a school became a full time job for me.  I spent the fall of 2015 touring public schools, DOE funded and special ed private schools. We met with lawyers in case we had to sue the city for private school funding. We met with special ed consultants. JP underwent a costly neuropsychological exam. I attended numerous meetings per week, making sure I had information on every single school JP could possibly attend. In February 2016 we learned that JP earned a coveted seat in the Nest program. Finally we could breathe. JP would attend a public school program in Brooklyn.

After spending nearly two years in fast forward to help understand JP’s needs, get services, find the right schools and racing to appointments, we finally felt that we could slow down.

JP has excelled this first year in elementary school. He is very proudly reading at level E. He can sometimes report to me things he did at school, and he can hang up his coat and backpack when he gets home with minimal prompts. We still have many struggles at home, from having to repeat simple commands multiple times, to hearing him yell in frustration instead of using words.

And, just this week I realized that I’m not nervous anymore bringing JP out to dinner. I’m pretty confident he will act like a typical 5-year-old at a restaurant. He might whine while waiting for his food, and so will many other kids his age. I’m fine with that. We’ve come a long way and things only look brighter from here.


Leslie Winston, LMSW, was born in NYC, raised in the midwest. She’s been living in brownstone Brooklyn for over a decade. Leslie is a Licensed Master of Social Work (LMSW) and has worked with children and families for the past 15 years. Most recently she’s been working in local food, is a supporter of Community Supported Agriculture (CSA) and local farms. She’s a step-mom to Inez (born in 2001) and mom to Judah Pax (born in 2011) and lives with her husband Ray and children in Clinton Hill.