The diagnosis of Nicole, part 1 (before the results)
We started noticing that Nicole was different than our other kids in more significant wayswhen she was two. I remember as her third birthday was approaching, Zach and I were trying to determine whether her “weirdness” was on the normal spectrum or whether it was disordered in some way. We went back and forth a lot with Zach tending to put her on the disordered side and me wondering if it was possible that she was in the range of normal.
We had conversations with her pediatrician and had her tested through the school. The pediatrition tested for things like Turner’s syndrom and gave her a MCHAT (a screener for Autism). The school qualified her for services under a generic classification. I remember when we went in for our first official test results meeting at the school when she was 3, the evaluation team could tell that Nicole has a disability, but they couldn’t define it any better than we could.
Before leaving Seattle, our pediatrician recommended we see a pediatric neuropsychologist. He said the neuropsychologist is really good at figuring out what is going on inside a child’s head. That was really exciting to me. By the time we got our insurance company to approve the visit, there were no openings before we moved. Once in Utah, we pursued the same recommendation. We had to restart the process with the insurance company more than once and wait for our turn on the 8 month waiting list, but after more than a year, we were finally able to take Nicole in for neuropsychological testing.
I was very excited when I got the call to make the appointments. We scheduled three appointments. An hour and a half for the parent interview, a testing appointment from 9am until 4pm and an hour and a half for the results appointment. I was so eager for these appointments that I spent hours compiling information. I compiled a 15-page document of all the things I had written about Nicole over the years and then I highlighted it with multiple colors to indicate social and developmental aspects of Nicole’s childhood. I collected artwork, report cards, IEPs, and evaluation results and organized everything into files.
This testing and the possible results consumed my thoughts. I would imagine receiving different diagnosis and trying to figure out how I felt about the diagnosis. I thought a lot about how having a label for Nicole would change things. A little part of me was scared of having a label because that meant that Nicole has a real disability. All of these thoughts led to one conclusion. I didn’t actually care what the results were, I just wanted them to be accurate and I hoped that they’d give us an avenue to figure out how to help Nicole be successful in school and in life.
I started having dreams about that results meeting. In one dream all the Dr. told me is that she has autism and I left feeling like I hadn’t really learned anything. In another dream, the only result was that Nicole was pregnant and so instead of having any answers to what was going on inside her head, I had one more problem. I spent the rest of the dream trying to figure out who was molesting my child and wondering how I was going to lead my 5-year-old through pregnancy and childbirth.
By the time the day actually came to receive the results, I had decided that I would be surprised if we didn’t get the diagnosis of Autism. I was also worried that if all we got was that Autism label, that we wouldn’t really be any closer to understanding Nicole or knowing how to help her than we were before we started this process.
The actual results meeting was wonderful in it’s own way. Nothing was a surprise. It all made perfect sense and the things that she found in her testing were all the things we had been noticing all along, they were just defined better. It was like we learned everything and nothing all at the same time.