About a year and a half ago I went to my doctor because I had hives all over my body. I wasn’t sleeping well due to all of the itching, and the masses of welts were starting to alarm me or I never would have bothered. They make OTC anti-histimines for a reason. After a non-exam my doctor pronounced me a victim of stress and recommended yoga (it was dermographism, but I’d have to wait another 6 months to find that out) . Miss Rose was present and acting very Rose-like, so as we were leaving the office the doctor tugged me back and asked quietly, “What is her diagnosis?” I gave her the medical, endocrine system related diagnosis, but the doctor just cocked her head and said “No, the other one.” (To be fair to the doctor, she just wanted to recommend a caregiver’s support group.)
I didn’t know what to say to that back then, and I don’t have a better answer now. There’s not an easy word that sums it all up. My daughter’s diagnosis, right now, is something like ADHD and anxiety disorder-NOS and sensory integration dysfunction and social delays and slow information processing speed and whatever else was in the latest report. I forget from day to day. She’s also likely gifted, but won’t answer questions she’s not positive about, so the IQ test results are difficult to interpret. She scores high enough on some index or other to be diagnosed as having Asperger’s Syndrome, but the diagnostic professionals don’t want to use that term yet (Yet!). I’m on board with that, and so it my husband. A diagnosis isn’t a child, right? They have to treat the person, not the medical term. Well, unless you’re a school district that is.
I was pulled aside by my daughter’s occupational therapist to talk about diagnosis today. It seems that the OT must re-evaluate Rose very soon under the criterion for developmental motor delay. Rose won’t qualify, and for good reason. She doesn’t have a motor delay. That’s not why she should be seeing the OT. Oh, my pixie child had some low tone in her trunk and fine motor issues in preschool (and gross motor issues that got her banned from the playground equipment, but that’s another issue), but the ongoing OT services were supposed address sensory integration and behavioral regulation. It turns out that Rose can’t get the services we all think she should have unless she goes through the Autism Service. It also turns out that most of the school professionals think that my husband and I are in denial and Rose has Asperger’s Syndrome. Luckily I can fix everything by agreeing to let the school district set aside our private evaluation and have them test her for an ASD.
Why does the thought leave a sick feeling deep in my abdomen? I know I’m cynical and distrustful of human nature. It’s just my thing. I also understand that no one makes a career of being a public school therapist for the love of money, glory and power. The OT is clearly trying to help, but something just feels off. Why is this so *&$%# hard? Seriously? My child needs help and I’m tired of arguing with people about whose job it is to provide it, and how to file the paperwork. Saints and Seraphim on a whole wheat wafer! I just spent 4 hours teaching my child everything she should have learned at school today. I’m too exhausted to fight with anyone about the semantics of disability.