Last month, Leslie Winston of MotherBrooklyn shared the first part of her family’ story. In part II of her journey, she shares the hard and fast details of finally getting a clinical diagnosis for her child with special needs.
After finding out we needed to get services for JP quickly, I took on the social worker role, but this time for my own son. I found a great Yahoo listserv of parents who have children with special needs and through them I learned the ropes. I found an excellent occupational therapist and a not-so-great speech therapist. The two days JP was not in preschool were packed with driving to and from appointments.
Aside from the speech delays, we were still wondering if something else was going on. JP talked a lot at home but hardly at all at school, so we wondered if he had selective mutism. The psychologist referred us to the NYU Child Study Center to have JP evaluated for selective mutism. In the meantime, I aggressively made phone calls to get the Committee on Preschool Special Education (CPSE) evaluation rolling along with numerous phone calls to our insurance company to find out the rules and paperwork for getting out of network reimbursements. We settled into our crazy routine. Still, even with the flurry of appointments and activity that had become our new normal, we didn’t really know what was going on with our son.
The results of the selective mutism evaluation were inconclusive because his selective speech could have been due to his general speech delay. However, the evaluators said JP did present with a few red flags for autism. Here’s the thing: I hadn’t even thought about autism. JP answered when his name was called and he never lost his speech after learning it, like many kids with autism I had read about. I was open to the possibility but didn’t think that was what was going on. My husband and I decided the next step forward would be to find out if JP did indeed have autism. We set up another appointment at NYU for an ADOS (Autism Diagnostic Observation Schedule).
In the meantime, after a four-month wait, JP finally received an Individualized Education Program (IEP ) from the CPSE. He was three and a half years old and was (finally) approved for services. We advocated strongly for as many services as possible. Even though JP did not yet have a diagnosis, we were still able to get him speech, occupational therapy and counseling services. We knew we needed to play catch-up after being denied early intervention and, thankfully, we were offered a seat in a full-time preschool. Instead of taking JP to certain approved providers for services after school, he attended a full day preschool program where all of his services were provided in a classroom setting with both special needs students and neurotypical students.
Our life changed quickly. All of a sudden we weren’t paying for private preschool three days a week, we were sending our young son on a school bus to a free preschool five days a week. After paying out-of-pocket for services and evaluations for several months, it was a relief not to have to pay for private preschool. But it was a big adjustment for all of us to have JP in school full-time—and he still wasn’t talking at school. The teachers wondered if he should be in a smaller class with no neurotypical peers, where he could have more attention. We pressed on, knowing JP could and did speak using full sentences at home.
One month later we found out that JP did indeed have autism. As monumental as this may have been, there wasn’t really time to grieve the diagnosis, to think about the lifelong battle our son would have. Now that we had an autism diagnosis, we had to make sure the school was still a good fit (it was. whew.) and we started looking into other services, which focused on kids with autism. Thankfully, my husband and I were on the same page and we worked together to focus on caring for JP. We put the diagnosis into perspective: it wasn’t a disease and so far we had been able to deal with the negative behaviors. Things would only get better from here, right?
Stay tuned for Part III of Leslie’s story in May.
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.