I’ve spent the past two weekends taking all the paperwork we have about Tim and putting it in chronological order and in to three ring binders. Twelve and a half years of paperwork, comprising every evaluation, every IEP, every page of every inpatient stay of Tim’s life, from Pre-K through last week. It took four, three-inch binders to hold it all. As I sorted through it all, I saw the progression of Tim’s illness in stark black and white.
What really startled me was the suggestions that Tim had Schizophrenia as far back as age eight. As I read their clinical notes I realized what they were trying to tell us back then but, for some reason, didn’t have the guts or the desire to label a child so young with such a diagnosis. I remembered the psychologist that recommended we give up our rights to get Tim treatment because he would need, as his notes read, intense mental health treatment, likely for the rest of his life. I remembered the therapist that gently told me Tim needed to be hospitalized and on meds, and that he would likely need several hospitalizations throughout his adolescence. I read the notes of his first inpatient stay, and how the psychiatrist noted daily that Tim was experiencing psychosis, and that he was most likely already had or was heading towards Schizophrenia, and I remember him trying to tell us, but he had been so amazingly uncommunicative with us during Tim’s time in the hospital that we wouldn’t hear him. Every one of those doctors did a psychological assessment of Tim and none of them were willing to put that word on paper – not a single one.
I spent a lot of “what if-ing” while collating and punching holes in those assessments. What if we had listened to that boorish doctor? What if any one of them had had the nerve to sit us down and tell us the truth, over and over until it sunk in? Would it have made a difference? Would we have gotten Tim better treatment? More appropriate schooling? Would we have been able to keep him home with community-based services rather than send him away? I drove myself a little batty playing the what if game for a few hours. But ruminating on all that led me to one of the reasons I write most everything down here. At first, it was to make sense of it all to myself. Eventually, as others who are traveling down this road started finding it, it became a way to commiserate, share information, and hopefully, give one family a smoother progression than ours, as can be witnessed in four, three-inch, three ring binders.