Charlotte's Journey Home

Just a Regular Kid, Sort Of


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A Perfectly Innocent Question, or more ruminations of Charlotte as a "regular kid"

Our annual Virginia Beach sandcrab picture. The scar pokes up about an inch or more above the suit.

Charlotte has a couple of bathing suits and sundresses that expose her heart surgery scar. She even has one tankini that shows off her heart scar as well as her g-tube stoma. Every now and then when she chooses one of these outfits (and these are her favorite bathing suits), I’ll ask if she minds that the scar or scars show. Her standard response is, “Not at all.” Just recently she has begun saying, “No, of course not. I love my scars.”

Charlotte knows how she got her scars. She pours over her baby photo albums. She has asked me to explain her heart defect and how it was repaired (the book It’s My Heart is an indispensable resource.) And, she was recently among the honored child-guests at the Saving Tiny Hearts Society gala. We’ve rehearsed what she might say if someone asked how she got the scar.

We both really thought that she was as comfortable as a five-year old might be with her body and its difference.

Until Saturday.

This weekend a lovely, charming, intelligent, and curious eight-year old friend asked Charlotte what her scar was. I didn’t hear the exchange or how she phrased it, but I imagine it was innocent and nonjudgmental. Suddenly, Charlotte came running into the house, angry, telling me that she didn’t want anyone to talk about it. She was stomping her feet, very insistent that she would not talk about it.

Philippe and I were stunned. I’ve asked a few times this summer if any of her camp friends asked about it and she said no. Turns out one friend asked and she refused to answer.

Later in the day, when Charlotte had calmed down and we were alone, I asked her why the question had upset her. It took her a few moments to articulate it, but she said, “Because I didn’t want R to think I was still sick.” And, I’m guessing, she didn’t feel she could adequately explain that she isn’t sick, that she is (as she so often says) “as healthy as she can be.”

Philippe and I were both dumbstruck. I still don’t know what to say.

Both R and Charlotte have probably forgotten about this conversation. I whispered to R that her dad could show her Charlotte’s website and she could read the answers to her questions. She’s an intelligent girl and meant well. She deserves an answer. Who knows? Charlotte’s story might inspire some of her life choices.

While the kids have likely moved on, my heart breaks for Charlotte’s broken heart and for her bruised spirit. This time the question was caring and considerate. Next time it might be cruel, teasing, or exclusionary. And, I have idea how to help her deal with this. She wants so much to be a regular kid. And in so many ways she is about as regular (and extraordinary) as a kid can get. But, no matter how regular she is, she’ll always have a “zipper” down her chest and she’ll always be a heart patient. Even if congenital heart defects are the number one birth defect, there ain’t nothing regular about that.


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OT/DT Odyessey: The Final Chapter, OT and beyond

Charlotte posing in front of the new Ann and Robert H. Lurie Children’s Hospital of Chicago. Construction is on schedule. At this critical juncture we still need funds–the building is up, but we need to complete the interior. Please click here to donate and be a Hero for Life. And check out the hand etched into the windows at about the 8th floor, screen left.

After nearly 8 months of research, evaluations, and hair pulling (mine, really), we were ready to find an Occupational Therapist. The evaluating practice was out of the question so I, once again, turned to Team Charlotte.

Since Amy Zier & Associates was not an option because of insurance and the recommended OT at Children’s Memorial was on maternity leave (very inconvenient timing), I turned to Oaktree Developmental Center. Its lead OT, Kathleen Stanton, was recommended by Cheryl Mercado, the OT who evaluated Charlotte during her years in Early Intervention.

My first conversations with Kathleen were very calming–she is familiar with both therapies that had been recommended, was willing to set us up based on the BO&A evaluation, and clearly wasn’t planning on jumping to conclusions about anything until she (or the assigned therapist) had met Charlotte. Charlotte was happy with any clinic we might find as long as there was a ball pit.

Finally, in early March we were matched with Sarah S., an OT fresh out of school with a wonderful way with children. Charlotte dove right in. Literally, she dove right into the ball pit. While it is clear to me that she still needs work with fine motor strength and skills, her willingness to try new physical challenges was already (in March) vastly different than it had been when we first begin this odyssey in June, 2009.

After 4 weeks, we could already see the difference in Charlotte’s upper body strength and daredevilness. She looked forward to therapy as a big playdate with a new grown up friend.

Then…while on a brief vacation during our March break, we received a call from Kathleen to let us know that Sarah had had to suddenly resign. [Family reasons. Not mine to tell, but I will say that she is not only an amazing young OT, but that she is clearly a wonderful daughter and niece.] Because Oaktree is so small, Kathleen couldn’t schedule Charlotte with an OT until she hired someone new.

Back to square one….this time I cast a broader net and did some of my own research, calling Team Charlotte to ask “Have you heard of this practice? That OT?’

I found a new practice and set up an appointment with an OT who sounded lovely on the phone. She could start nearly immediately, in early May, but would have to hand Charlotte to a co-worker for two months during the summer while she took a medical leave. Oh, and the facility had no ball pit. (I didn’t tell Charlotte that.)

The morning before the appointment, I called Kathleen to see if, on the off chance, she’d hired anyone. She said, “I was about to call you. I can start you with my new OT on June 6,” and proceeded to tell me all about Jill.

Philippe and I weighed the options:

A) Beginning quickly with a new OT, new facility with a break in continuity. Big bonus, lessening the weeks of no OT. Big minus, Charlotte would just get used to her new OT and then have a sub. Oh, and no ball pit.

B) Waiting about five weeks to return, but going back to a known facility (with a ball pit) and continuous service with the same OT.

We choice option B. The OT on whom I cancelled (I can’t remember her name, but would dig through my notes if we need to go through this again) sent me a very supportive email saying that choosing the known facility and continuous OT would likely be less disruptive for Charlotte. She thought it made perfect sense, promised to shred all our intake documents, and told me to get in touch if I needed to.

So, Charlotte’s been playing with Miss Jill at Oaktree Development Center every Monday since June 6. The changes in Charlotte are evident and exciting. She’s working on balance, core strength (serious ab work, folks), fine motor strength, and complex task sequences. She starts and ends each session in the….ball pit! But, she’s riding a zip line to jump/fall into it. She is so excited to go to OT, that she doesn’t say goodbye when she runs into the room.

That, folks, is the end of the OT/DT Odyssey tale. It began with a surprising and shocking comment by an astute, sensitive teacher. Charlotte travelled through junior kindergarten with a master teacher who nurtured her and helped her blossom. We discovered her intellectual strengths, physical deficits, and potential challenges. Charlotte went to camp and became a sort of daredevil (more on that another time). And she goes to OT weekly to lessen (or at least learn to manage) the discrepancy between her fine motor skills and intellectual capabilities.


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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!