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.

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