At the risk of being overly optimistic, I'm going to say I think we found our diagnosis!
Post Traumatic Stress Syndrome (PTSD)
My husband and I knew we had symptoms of it after Culley's great illness, so why wouldn't he?
After such a crappy kindergarten experience, I was desperate, yet again, to find a way to help Culley. It had been a whole year since he was last regulated. During the summer before kindergarten he was acting like a "normal" kid. He took our moving to a new house and a new town all in stride. He was happy and excited and lucid. He and his brother loved the new house and played happily all summer long. He was so happy to start kindergarten but within a couple weeks of the new school year, he started to come undone (see my previous post, The Problems with Kindergarten).
In June, I Googled, "child therapist in my town" and there she was. Play therapy is her method. The list of issues for which she sees kids is a mile long but every one of Culley's so-called diagnoses was on the list. I went to my meeting with her prepared to give her Culley's life story and to try to explain the myriad of his atypical attributes. To my amazement, it was as if she already knew. She began our meeting explaining (with a whiteboard, loved her already!!) the brain science behind regulation/disregulation, sensory input, processing and how it affects behavior. She explained how and why kids have problems with it (trauma being one of the reasons) and how play therapy helps. In her explanation, she had described Culley and his issues to a tee - better than anyone ever had. I told her that, then I told her about his history. It made complete sense to her. She explained that his illness was a medical trauma and his behavior is typical for a child recovering from trauma (PTSD).
She started by explaining that we all have implicit and explicit memories. Implicit memories are those we were too young to remember explicitly or those in our lives that we don't have to or sometimes can't recall voluntarily. Implicit memories are carried in our brains and affect our behavior every day. Most of us have relatively similar experiences, therefore relatively similar memories, and therefore relatively similar behavior. When something very unusual happens to someone - as in the case of traumatic events, implicit memories are made and atypical behaviors develop. This is putting it all very simplistically of course. I could go on for pages and if anyone is interested I will. But for now I just want to get this information out there in case there are any other parents dealing with what we've been going through.
Over the past several months, I've read a lot about PTSD and particularly how it relates to medical trauma and infants/young children. The specific topic of medical trauma in babies is a very new topic and not one that has much documentation. When I expressed my frustration to Culley's therapist about how long it's taken to get this diagnosis and how many doctors and therapists he's seen who refused to acknowledge a connection between his medical history and his current symptoms, she wasn't surprised. She told me that just last year, she attended a child psychology conference during which an expert in the field was giving a lecture. He stated that they're still unsure of the psychological affect that medical trauma has on babies and young children. She said that she and her "cronies" exchanged knowing glances, recognizing that they're the pioneers of their field.
I would recommend the book, The Whole Brain Child, by Daniel J. Siegel and Tina Payne Bryson, to any parent who thinks their child may be suffering from PTSD. It does a wonderful job of explaining how a child's brain works in general. The chapter on trauma illustrates how atypical behaviors develop after traumatic events. Even though there wasn't much if anything about babies experiencing trauma, I could still see parallels in the behaviors described and Culley's behaviors after his illness.
More to come about how play therapy is helping!
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