A diagnosis is a tricky companion. When you first find out your child is disabled, after you go through denial, you come to the point where you just want a name. A reason. An answer. It’s said that to name something is to have power over it, and that’s what you want when your child is slipping through your fingers, beyond your grasp and out of your control. You want to be able to name it. You want to scream it’s name from the highest mountain. You want to curse and damn it to hell. You want to fall on your knees and beg it for mercy. The diagnosis becomes vital. You have to name it.
The first year we searched for a name, we spent $2000 and visited six specialists. At the end of the first year, we had six different diagnosis, no answers and a kind tax return. Savannah’s seventh specialist, Dr. S., became our touchstone. He was the first to listen, not just to us as parents, but to Savannah and to what she didn’t say. He read all of her previous medical records, poured over my obsessive documentations, studied her videos, heard her story and played with the silent angel before him. We left Dr. S. hours later with a diagnosis of Pervasive Development Disorder-Not Otherwise Specified (PDD-NOS), an explanation of the short-comings of previous diagnosis and a friend, advocate and blessing, who still follows Savannah to this day.
But friendship doesn’t alter the fact that all things evolve. I took our diagnosis and challenged it by name. I read every book. I went to every therapy. I watched Savannah fight her hardest. But the older Savannah became, the larger the divide between her and the acclaimed PDD-NOS became. More and more questions arose, instead of less. They sprouted in the shadows of speech therapy, in the weighted school air, in the expanding silence at home. The chasm kept growing, until the small gap of developmental delay evolved into an endless ocean.
As of this year, PDD-NOS no longer exists. It has been absorbed into Autism, along with Childhood Disintegrative Disorder (CDD) and Aspergers and Savannah. But still, between Savannah and Autism resides an even larger ocean, with more questions and more specialists waiting to be seen.