Charlotte's Journey Home

Just a Regular Kid, Sort Of


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OT/DT Odyssey: Researching the Therapies

Charlotte debuting as a special guest at the Saving tiny Hearts Society gala last month. Saving tiny Hearts was founded by a couple whose son has complex CHD and who recognized the need for research into the #1 birth defect in the U.S.

By the end of February we had ample evidence to know that Charlotte needs Occupational Therapy. Her “deficits” aren’t visible to the average observer, but they could impair her academic achievement later.
Finding a reputable OT practice that accepted our insurance was a bit more challenging. We had decided not to return to BO&A for a variety of reasons. Our next search was for a practice that would accept our insurance, offer Therapeutic Listening, and understand Floortime Therapy.

Loving art at the Museum of Contemporary Art in Chicago. Upon seeing this sculpture by Nathan Carter, inspired by Alexander Calder (one of my favorite sculptors), Charlotte squealed, “Wow.” and began to look for all the letters in it. The exhibit, on Calder’s influence on contemporary artists is titled “Form, Balance, Joy.” We totally got the joy!

First, however, we had to understand a bit of what each is.
Therapeutic Listening was easy to wrap our heads around. I perused the Vital Links website and found this basic definition:

Therapeutic Listening® is an evidence-backed protocol that combines a
sound-based intervention with sensory integrative activities to create a
comprehensive program that is effective for diverse populations with sensory
challenges. Therapeutic Listening can impact sensory modulation, attention,
behavior, postural organization, and speech and language difficulties. Trained
therapists learn to use modulated CDs to set up programs for clients in homes,
schools and clinics. Listening is a function of the entire brain; when we
listen, we listen with the whole body.

The therapy involves listening to sounds (music, sort of) on headsets while doing everyday activities, this therapy can begin in an OT session and be continued at home. It would help Charlotte’s balance and, perhaps, catch her up on some development that she may have missed in utero or by being in hospital for the first 49 days of her life.

Given Elizabeth Benney’s (Developmental Therapist) diagnosis of “vestibular instability,” and the resultant probably issues regarding posture; shoulder girdle weakness; inability to isolate gross motor movements; intense reactions to loud and sudden noises; and some fine motor weaknesses, Therapeutic Listening seemed an approach that could help Charlotte.
Floortime was a bit more difficult. My initial research led me to the website of the Interdisciplinary Council on Developmental and Learning Disabilities. Immediately, my warning bells started ringing—Charlotte has no disability diagnosis. In fact, Dr. London (at Rush Neurobehavioral) had talked about figuring out which of diagnosis code to use for insurance since there was no diagnosis of learning or behavioral disability or neuropsych problem. I am not in denial, folks. There isn’t a diagnosis.
I can’t quite as easily provide a simple, direct explanation of the DIR Floortime Model created by Dr. Stanley Greenspan. It is based on Development, Individual differences, Relationship-based approach to each individual child. Reading the website, I got a headache from the warning bells.
But, I take professional advice seriously. And, despite the fact that I felt that the practice that recommended Floortime might be working the up sell pretty hard, I looked for ways to learn more.

This led me to Amy Zier and Associates. Amy Zier is an Occupation Therapist in Chicago who is certified in Floortime. While her practice in Chicago is not contracted to our insurance, she responded quickly to my inquiries and we were able to attend a small seminar she hosted to educate parents.
During the seminar we learned one important thing: Floortime is good for ANY child, but not necessary for all. (In fact, after the seminar we thought that maybe some enterprising marriage counselor could incorporate it into a model for couples’ therapy!)
Amy described in her own words the basic information on the ICDL website. The program focuses on the six developmental milestones:

that every child must master for healthy emotional and intellectual growth. This
includes helping children to develop capacities to attend and remain calm and
regulated, engage and relate to others, initiate and respond to all types of
communication beginning with emotional and social affect based gestures, engage
in shared social problem-solving and intentional behavior involving a continuous
flow of interactions in a row, use ideas to communicate needs and think and play
creatively, and build bridges between ideas in logical ways which lead to higher
level capacities to think in multicausal, grey area and reflective ways. These
developmental capacities are essential for spontaneous and empathic
relationships as well as the mastery of academic skills. (I’m cribbing from the
website here.)

If you are curious, follow this link to learn more about the six developmental milestones.
Philippe and I were fascinated, especially as we recognized our own areas of deficit. The therapy itself is intense. It requires parent and child time with the OT as well as six hours (more or less) of daily at-home therapy.
For us, the bottom line was this: Charlotte does not have any behavioral or sensory disturbances that affect our daily lives. For instance, she does not throw tantrums that seem unreasonable or surprising. Most of the time, we can identify that she is pitching a fit because she’s hungry or tired, not because she is perpetually disregulated.
Considering each of the developmental milestones, we realized that while Charlotte might benefit from the therapy, she didn’t need it. Good thing, too, since Amy is the only certified Floortime therapist in Chicago and doesn’t take our insurance. I didn’t want to trek to the suburbs.

So, based on the evidence, we began our search for the right OT practice.

Stay tuned!