Contributor and MotherBrooklyn founder Leslie Winston shares her family’s story about their journey into the world of early intervention and supportive services for her son.
A few months after our son JP’s second birthday we had him evaluated by the NYC Early Intervention program.
There were a few signs that things were not right, but there were also many people assuring us that things were. Starting at the very first doctor’s visit when JP was a newborn, my husband brought up the fact that JP had poor eye contact. This was written off by the doctor; she said boys’ were slow with making eye contact, and that we should wait and see if it continued to be a problem. When we were concerned that JP didn’t have as many words as he should at 18 months, we were again told to wait and see if he would catch up.
Now, I am a professional social worker and have worked in the child welfare field for nearly two decades, so I decided to refer our son for an evaluation myself. Aside from the verbal delay, we were concerned about JP’s screaming. He screamed when people sang the “Happy Birthday” song; he screamed when people clapped at the end of a sing-a-long, and he was no longer mellow sitting in a stroller in crowded places. Still, he was also a sweet boy who giggled when his sister played with him, loved to be tickled and cuddled and an excellent sleeper.
So, when the first early intervention report came back stating JP was fine, I was relieved. He scored on the low end of average for his verbal delay, but not low enough to qualify for any services. I was fine with that. I didn’t want anything to be wrong with our son. In the back of my mind I was still wondering, though I wanted to believe what everyone kept telling us. But, my husband thought they were missing something.
Almost a year later during the summer that JP was turning three, I realized that he was not just verbally delayed; something else really was going on. By then, JP had started a part time program for two year olds at a local Montessori school. The school did not report any problems. He liked story time best, sitting on the carpet, and listening to books. He enjoyed playing outside and he was a quiet kid. At home, it was a different story. As soon as I picked him up from school and put him in his car seat, he would scream. He screamed the whole way home. Everyday. He could talk, but he couldn’t tell me why he was screaming or what was bothering him.
One weekend that same summer, I took JP to Philadelphia to stay with my sister who was in town for a professional psychology conference. When JP screamed for no apparent reason inside a restaurant, she asked me if I was going to have him evaluated. At first I was defensive; I told her that I didn’t believe his behaviors were a problem since they didn’t affect our daily lives; we simply never took JP out to eat. That entire summer, he was home with me and screamed every time I took him on an outing. At that point, I knew we needed to consider having him evaluated again. This was the point that I realized there was a big problem, and I was just barely coping. When I told me husband that I wanted to have JP evaluated again, he was in total agreement.
JP had just turned three when took him to a private psychologist. The psychologist didn’t have good news. She said that JP was delayed in many areas and that we should get him speech and occupational therapy as soon as possible. She said to refer ourselves to CPSE (New York City’s program for special education services for children ages 3-5) and that she was sure JP would qualify this time. Knowing the process would be slow, she recommended that we start services immediately and pay out-of-pocket until JP was approved. Of course we would get him services right away! It wasn’t even a question.
But this was only the beginning of our understanding of our son’s needs and we were still a few more evaluations away from a full diagnosis.
Leslie’s story will continue in another installment in April, so stay tuned.
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.