More on the OT/DT Odyssey: Neuropsychology Testing

Flashback to February, 2010. Charlotte pulling her own suitcase for our trip to California. She'd just lost her first tooth and was feeling SO grown up.

(Remember, all the "action" here dates back to January through March, 2010. I took me that long to feel comfortable writing about it.)

Back when we first heard from Charlotte's pre-k teacher that she thought we should seek some help for the deficits she had noted, Charlotte was still a patient at the Feeding Clinic of Children's Hospital of Wisconsin.

We headed to Wisconsin in July last year for Charlotte's release appointment. (The appointment was so routine, as Charlotte had had her g-tube removed a year earlier and her growth was stupendous. I totally forgot to blog about it!) At the appointment, we consulted Dr. Beth Long, the pediatric psychologist on the team and someone who had known Charlotte since she was an infant, about the concerns raised by Charlotte's teacher.

Dr. Long recommended that while we went about the OT and DT assessments "it wouldn't hurt" to get a neuropsychology assessment as well. Children who spend extended time in the hospital as infants can miss all kinds of invisible developmental milestones. Figuring out now what those might be, she noted, would assure Charlotte success at a later date.

Not wanting to trek to Wisconsin for a neuropscych (Raise your hand if you blame me for that!), I tried to get into the doctor recommended by our pediatrician. Long story short, calling in August, I was able to schedule a November appointment. In the months leading up to the appointment, Philippe changed jobs. So, I called the doctor and the hospital's financial office and explain that we are insured, but that I won't have the ID and group numbers until the appointment. And yet, a week before the appointment, I get a voice message unceremoniously cancelling our appointment because "we are uninsured."

I was incensed. I called and reminded the doctor's assistant that Children's Memorial Hospital serves all children regardless of their ability to may. While not an explicit part of the mission statement or service principles, it boils down to this--children who need medical treatment can get it at our hospital. I ranted, raved, and called the Foundation to ask about how to deal with this (the appointment had already been given away). An hour later, I got an apologetic call from the nurse, reinstating our appointment. I was mortified, for myself and for the doctor, that it took my being a fundraiser for the hospital for us to get to keep the appointment.

So...I called the pediatrician and got another referral, to Rush Neurobehavioral Center. I was charmed from the tagline..."Building on the strengths of children, teens, and young adults." They fit us in right away, in January.

Our (out-of-network ouch) neuropscych evaluation was performed by Dr. Andrea Victor. It began with a sheath of paperwork to be filled out by Philippe and me individually and Charlotte's teachers. The idea is to get a full view of how the caretaking adults in her life perceive her strengths and weaknesses. The questions (as I recall them) centered on sensory concerns, social comfort, and general cognitive development.

Then we had an intake session with just me and Philippe. After that, I took Charlotte to Dr. Andrea for three sessions. I can't tell you much about what happened because Charlotte and the doctor did it all alone. I could probably dig out the instrument names, if you're interested. I know that Charlotte thought they were just having fun and Andrea was testing Charlotte's full scale IQ, among other things.

We also requested an (out-of-network) educational consultant to observe Charlotte in the classroom. A brief aside: Barbara Resnick, educational consultant, not only thought that the Lycee Francais was a good fit for Charlotte. Having never visited the school before, she also noted that she loved its warm atmosphere, supportive environment, and challenging bilingual curriculum. She was really impressed with the school.

Finally, Philippe and I met again with Andrea and Barbara to hear their conclusions and recommendations. Keep in mind, that we had had the catastrophizing OT report around the same time. Andrea read that and incorporated her response to it in her remarks.

The bottom line: Andrea found Charlotte to be of above-average intelligence. She confirmed that Charlotte was reading at about an early 2nd grade level and doing basic math. She found Charlotte to have no major discernible, diagnosable problems. BUT...as noted in OT and DT, Charlotte's fine motor skills are not at the same level as her intellectual skills. While this does not cause a great deal of problems in pre-school, if not addressed, the discrepancy can cause school failure at about 3rd grade, or, as Andrea put it, "when kids stop learning to read and start reading to learn." Without attention to the problem, Charlotte might have a hard time taking notes, copying assignments from the board, doing things that require her eyes to do one thing and her hands to do another.

Andrea suggested we follow the OT advice for OT (not necessarily Floortime) and have Charlotte re-tested in the middle of third grade.

More to come...