Charlotte's Journey Home

Just a Regular Kid, Sort Of


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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…

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More on the OT/DT Odyssey

Charlotte delighted in being a flower girl at Eve’s wedding. She is available for weddings (and the dress still fits!)

Here is the next installment of our OT/DT Odyssey:

Elizabeth referred us to BO&A because she knew that they had therapists trained in therapeutic listening. The name rang a bell and when I did my research, I realized that my friend had taken her autistic daughter to BO&A for years to help with her sensory issues. The clinic is renowned for treating sensory disorders, particularly for children on the autism spectrum. My warning bells rang a bit, but I soldiered on.

It took four months to get an appointment at BO&A. The number of phone calls and the length of waiting sounded some more warning bells, but, like Elizabeth, I couldn’t find anyone else in the Chicago area that did therapeutic listening.

We began evaluations in November. These consisted of three OT sessions for Charlotte and, finally, a parent session for sharing results. The only time that the only available therapist could see Charlotte was on Wednesday afternoons at 2 p.m. Wednesdays are Charlotte’s half-day at school, so in that respect the timing was nice–no missed school. However, at the time, Charlotte was still napping and this was smack in the middle of nap time.

True to her adaptive nature, Charlotte did great for the first two sessions. She performed all the fine motor tests (lots of copying shapes, connecting lines, recognizing differences and circling them), going many pages past what the therapist had planned for her. Charlotte knew that at the end of the small room activities there was a gym awaiting her, complete with a ball pit to dive in. She lived for the ball pit.

But, Charlotte had a hard time getting out of the ball pit. Physically at first, yes. But, more importantly, emotionally. Without her nap, she had no control over her emotions and would pitch major fits when it was time to leave. No amount of preparation (“Five more minutes,” or “Two more dives.”) mitigated it well. She would calm down the minute she put on her shoes and got her sticker, but she simply didn’t want to stop doing the activity she loved most.

Then, on the day of the third appointment, Charlotte had a temper tantrum in the car on the way there. (Did I mention that BO&A is in Skokie, IL? Usually about a 25-30 minute ride at that time of day.). We were running very early and, rather than waiting in the icky waiting room, I wanted to do a quick errand at the mall. Even tried bribing her with an Auntie Anne’s pretzel. But, Charlotte just wanted to get to that ball pit. I explained that she would have to wait for 45 minutes because the therapist was with another child. She was unrelenting. Finally, I pulled in a parking lot and tried a time out. No change in behavior.

So, I called and cancelled the appointment, took her home, put her down for a nap,and enjoyed the three quiet hours. Charlotte really needed her nap, I knew it, and I did what I knew my kid needed.

While Charlotte napped, I fielded a call from the OT about the cancellation. Her take was that I should have brought Charlotte in so that she (the OT) could teach me how to deal with Charlotte’s “inability to regulate.” I tried to calmly explain that this extended behavior had been out of the ordinary, but my explanation fell on deaf ears and I got a parenting lecture.

We went back the next week and completed the test.

Why this digression about one day in the life of the tests? Two reasons: The therapist clearly wasn’t hearing me, on any issue. She held that Wednesday appointment open for us for 4 months (the two it took her to write the report and schedule our follow up and the two months afterword), even after I told her that I likely would look closer to home for treatment. And, worse, she used the incident just described to demonstrate that, in her opinion, Charlotte had serious regulation issues and sensory concerns.

We finally got the report in February, after we had gone through neuropsych testing (stay tuned) and before the neuropsych did her report.

The bottom line of the OT report? It was a catastrophizing assessment of our child that put her just shy of the autism spectrum, called for weekly OT as well as weekly mental health appointments. She recommend something called Floortime Therapy, which when we researched it seemed somewhat inappropriate for our child. And, she dismissed therapeutic listening in one short sentence. Certainly, she found and assessed the fine motor and shoulder girdle concerns that were holding Charlotte back, but the report didn’t seem to see Charlotte as a typically developing kid. In our in-person session, the therapist was, in my opinion, dismissive of our questions and concerns, recommending that we read a book about parenting a child with sensory disorders. We didn’t dismiss it, of course, but we took it with a grain of salt and some professional assistance. And we sought a different therapy clinic for Charlotte.

Needless to say, we were glad to have the neuropsych and our friendly Aunt Denise, a wise pediatric OT, to offer second opinions!

This brings our odyssey to February. Stay tuned for the January neuropsych testing, our research into Floortime and wonderful conversations with the Chicago Floortime guru, Amy Zier, and our discovery of Oaktree and Miss Jill.