Yesterday, I got the neuropsych report, the one that expressly says GB is on the autistic spectrum. Her IQ dropped 18 points, according to the WISC-IV, in the last13 months. On AXIS I her diagnoses were 1. Asperger’s Disorder 2. Bipolar Disorder 3. Mathematics Disorder. On AXIS III her diagnosis was Fetal Alcohol Spectrum Disorder. The report said a lot more (11 pages worth), but there were no glaring errors. Everything they said about her sounded exactly like GB. As she wasn’t psychotic when this testing was done, it should be an accurate picture of what GB’s functioning is when the Bipolar is stable.
I guess it is good I received the report yesterday, as today @ 1:30 is a CSE meeting on GB, for a program review. I also took my head out of the sand long enough to set up an intake appointment with the DDSO for our region. I spoke to the intake worker for over thirty minutes and she said she is sure GB will qualify for services permanently from DDSO. She is coming over Monday to start the paper work.
For now, I plan on keeping my head out of the sand long enough to get what GB needs from the school. By bedtime, I may have to bury it in the sand , again, just to sleep.
Today, I got up the courage to tackle my latest dragon. Several weeks ago, I was caught by surprise when what I thought was routine neuro-psychological testing started with the head of the neuro-psych department at the George Jarvis Clinic telling me GB was on the spectrum. No, not FASD (although she said that was still there), ASD. How can a child start EI services at 7 months, special ed preschool at 33 months and receive special ed services for 2+ years from the district and have everyone miss autism? The psychologist told me about all the services GB should be receiving and is not. It was a very detailed discussion that lasted over 2 hours. I remember it happening, but I don’t remember a single service that GB needs and is not currently receiving. Not one.
I have always been adept at getting the services my kids needed. I have never been particularly interested in following protocol and I absorb information about my kids’ disabilities thoroughly and efficiently. So why is it that, three weeks later, I have done absolutely nothing. I have the woman’s phone number- so it is not because I don’t know what services GB needs- a phone call would take care of that. It is not a lack of time; with both girls in school, I have one or two days without appointments most weeks.
I have to conclude it is fear. Fear of what, I am not sure. Fear that I will be unable to get GB what she needs? Fear that there will be something else lurking in the shadows, waiting to be found? Maybe it is fear I shouldn’t have taken on Hope. I am not sure I would have if they had given me this information back in July when they first saw GB. Fear is not usually a good place to operate from. Rather than spend more time and energy thinking about it, I decided to call the ODDS (Office of Developmental Disability Services) and request an intake package. It is a tiny step, but at least I am not running from my dragon. And, there is always tomorrow.