Chapter 8 begins with Schuyler’s parents receiving a diagnosis, something they have been in search of for years now. After numerous appointments and evaluations, the answer they had been waiting for, was a letdown. Schuyler was given a diagnosis of Pervasive Developmental Disorder- Not Otherwise Specified. Having her parents explain it as, not knowing “exactly what the diagnosis meant” and “seemed almost like a cop-out” makes complete sense. The name of the diagnosis itself seems unsure. Her parents were expecting an answer to what was going wrong so they could begin to fix it. All they were left with was what she didn’t have, Autism.
As her parents read through the reports over and over again, something Dad said stood out to me.
“I knew Schuyler had been a bad test subject, particularly once she’d figured out she was being observed and decided not to cooperate.”
So many parents I go over evaluations with feel this same way. They want you to know their kid can and does do more. I think it’s important to reassure parents, especially those that don’t agree with results, that this is a snap shot of a given day and not reflective of all their child’s abilities. Also, Dad’s views here remind me, as a clinician, to get a detailed account of parent’s opinions and findings. This gives parents the feeling that they’ve been heard through the assessment process (especially for our pre-k and those coming in through the diagnostic center).
Although Dad felt like this newly discovered diagnosis wasn’t absolutely correct, he was happy that it opened doors for Schuyler to receive services. He continues to show his frustration with examiners, the world and himself in not being able to unlock Schuyler’s voice. He says, “She had questions, and lots of them, and the fact that we couldn’t understand them didn’t invalidate their existence, nor the urgency with which she was asking them,” “We’d failed by not finding a way to reach her inside her unique world.” This reminds me of the importance in accepting and realizing that each child is different. One routine therapy isn’t going to reach all kids on your caseload. You have to find a way that connects to them. You cannot expect them to adapt to your world immediately, you have to find a way to enter theirs.
Feeling incomplete after their initial diagnosis of Schulyer, their original Dr. refers them to a neurologist for additional hearing tests and an MRI. Finally, they are given her REAL diagnosis. It is nothing they wanted to hear. Up until this point, their search for a diagnosis was one that while frustrating, was filled with hope. In their minds, once they had the correct diagnosis, they could start working to ‘fix’ her delays. However, with this new diagnosis, Congenital Bilateral Perisylvian Syndrome (CBPS), came such harsh words. As the doctor explains congenital as a positive, “it isn’t going to get any worse,” and as a blow to their souls, “never going to get any better, either,” all hope dwindles away.
Leaving the Doctor’s office, Dad immediately looks for an escape. He heads to work and then off driving without a particular destination in mind. As he wraps up this chapter, we see him flash through all the stages of grief in just a few hours. Denial, as he reads articles about her condition, wanting doctor’s to dispute certain characteristics, not wanting these words associated with his daughter. Anger, as he rages at the church, screaming and throwing his soda can. Bargaining, as he banters with God asking for it to be him instead. Depression, as he lay on the ground head down crying. Finally, acceptance, at least for the moment, as he picks himself up to head home towards, “his family, our monster and the future.”
–Lindsey Nicklies Noonan, SLP at Bowen, Greathouse, and St. Matthews