Charlotte's Journey Home

Just a Regular Kid, Sort Of


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Annual Check Up and My Hat Off to Gilda Radner

Charlotte had her 8 year old check up last week. It was no surprise that she had gotten taller (54.75 inches) and heavier (around 60 lbs.).

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But, there were surprises and it was all I could to do hold back tears in front of Charlotte. It seems like we’ve kind of glided from the STAR-band (2006) and second heart surgery (2007)through first grade, able to pretend that she’s just a regular kid. But, truth is, she’s not. She’s our special, quirky, bright, medically fragile kid. She is covered with physical scars and may bear more psychological scars than are apparent.

It’s Always Something

Gilda Radner wrote that cancer gave her “membership to an elite club I’d rather not belong to.” Sometimes I feel like that as the parent of a medically fragile child. She is less fragile than many kids. The “fragile” refers not to her physical state as to the potential for medical upheavals in her life, I think.

Most days, the club I belong to is the mother’s club. It’s not so elite. As my friend Kath has quipped, it is rather extraordinary that you need a license to drive, but anyone can be a parent, whether they enter the pact with forethought or not.

Radner’s It’s Always Something (1989), the tale of her struggle as a strong, brave, funny woman to enjoy life despite a terminal cancer diagnosis is one of the best memoirs I’ve ever read. I remember buying the hardcover as a college student (who did that?!) and staying up all night to finish it.  It is a book I refuse to cull from my shelves and imagine reading again. I will, as soon as I can get it out of its box.

In the meantime, we’re living it, sort of. We are reminded that we belong to this club of parents with medically fragile kids. Kids whose early life diagnoses can rear their head somehow at any point, or seem to at least.

Charlotte has a curvature in her lower spine which I have noticed for the past several months. Scoliosis is, I know, common and can occur in the spines of kids who are not medically fragile. I get that.  I also get that we’re no longer in the world of Judy Blume’s Deenie and that if it is scoliosis, it may not necessarily mean surgery or a back brace. But I can’t help thinking of that.

You see, for me this is just more upon more. It’s one more doctor–Charlotte understood that immediately and wasn’t happy about that. Maybe one more regular therapy appointment–she understood that, too, and immediately began worrying about having OT, PT, Hebrew school, and piano. “Mommy,” she said, “when will I play? How can I do any other after school clubs?” I had to tell her take a deep breath and that we’d figure it out once we see the orthopedist.

To top that off, at the mere mention of the possibility of an optional vaccine, Charlotte had what I call a “frustration fit” and you, dear reader, might call a temper tantrum. Charlotte was not “terrible two.” And she wasn’t a “frightening four.” But the past several months have been challenging, with more frequent meltdowns, typically related to having to follow adult instructions or white coat anxiety. The upshot of her meltdown at the doctor’s office is a follow up with a child psychologist. She understood that, too, and later told me, “She’ll just want me to talk about my feelings [how did Charlotte know that?] and that’s a waste of time. I feel fine. I just don’t like shots and don’t like to be told what to do.”

Now we wait for further diagnoses and follow up plans. And we try, in Ms. Radner’s honor and memory, to enjoy every minute as we wait. We know how lucky we are that Charlotte is as healthy as she is and that we are so lucky to have her with us. But I can’t help feeling like I want to bang my head on a wall or hide under a blanket for a week.

Written in honor of Brandon and Jeremy and in memory of Jeremy Roignant


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Is Charlotte a Regular Kid?

This post will be the first in a series bringing you up-to-date about our nearly-year long odyssey with developmental and occupational testing for Charlotte and its outcome. I will start at the end because I don’t think suspense works for this blog: Charlotte was found to be a typically developing child with some fine motor concerns. Not visible to most people, these concerns might affect her around third grade if not addressed. So we are, of course, addressing them.
The introduction:

My friend Mark asked me a few months ago if I am finally ready to say that Charlotte is a “regular kid.” In many respects, yes, she’s as regular as they get. She talked about her fifth birthday beginning in February (at least) and behaving like a silly (or moody) five year old for at least 5 months. She goes to school gleefully most mornings and comes home hungry and exhausted most afternoons. She loves to play outside, build with Legos, and act out her favorite books and movies. (If you hear me saying “Off with her head,” it’s only because she insists I play the part of the Red Queen in Alice in Wonderland.) She is curious, goofy, cuddly, and kind.

In other ways, she’ll never be a completely regular kid. Or maybe we’ll never be regular parents. She has not been fed by g-tube since November, 2007 and the tube was removed in June, 2008. Like most five-year-olds, she eats like crazy some days and barely eats on other days. She has a limited repertoire, but it includes unlikely kid foods like black beans, chipotle ranch dressing, and (sometimes) cauliflower. She is average weight for her (above-average) height. But, Philippe and I can’t help tallying up her calories on a regular basis and fretting over her weight. We will probably never stop worrying that she’s not getting enough calories. And, as a result, we’re probably helping her develop some unhealthy habits regarding condiments, chocolate, and other calorie-additives. She won’t drink milk without chocolate or strawberry powder in it, for instance.

We’re learning all the time what her extensive hospital stay may have cost her developmentally. None of the weaknesses are visible to the naked eye and with appropriate therapies, none should effect her ability to live to her intellectual potential.

Does that make her a less regular kid? The fact of her need for occupational therapy does not make her less-than-regular; her therapy clinic treats lots of typically developing kids. The fact that we have spent a year having her rigorously tested and chasing every bit of information results (and that she never questioned why), probably, from her being not-so-regular. Or, from us being not-so-regular.

The Beginning:

Last June I met with Charlotte’s pre-k teacher to talk about what I might need to do with her over the summer, how to help her maintain the French, etc. I was surprised to learn that her teacher had concerns about Charlotte’s social skills, her large motor skills (both in relation to her peers), and her fine motor skills. She suggested that I look into an alternate summer program to address these concerns.

I was, not surprisingly, taken aback and disconcerted. We trust Celine, however, so we began our odyssey. I started by reaching out to the Occupational Therapist, Speech Therapist, and Physical Therapists who had treated Charlotte during Early Intervention. The consensus was to begin with a developmental assessment which we did last August.

Elizabeth Benney at Pediatric Resources met with Philippe and me for an extensive intake session and then had a long “playdate” with Charlotte. Her findings, summarized as briefly as I can: Charlotte is a typically developing kid with regards to cognitive and intellectual concerns. She experiences what Elizabeth termed “vestibular instability,” a sort of inner-ear related instability that results in her being less confident than her peers about her physical abilities. Thus, Celine noticed that Charlotte was afraid to take risks on the playground, especially with things related to balance (particularly balance beam, balancing above ground). The vestibular instability may (have) account(ed) for her (former) hypersensitivity to loud, unexpected noises.

Additionally, Elizabeth found Charlotte to have poor shoulder girdle strength and a lesser ability to isolate upper body movements. For instance, when asked to draw a circle on an easel, a regular kid can do so moving only her arm and shoulder. Charlotte moves her entire upper body. A regular kid can modulate the throwing of balls of different weights in order to toss them into a basket. Charlotte cannot. (Or couldn’t last August.)

All of these things, and the sensitivity to sound, cause kids to turn inward, to prefer to play alone, to have hunched posture. Many of them will self-resolve and are a delay, rather than a deficit. We’ve seen a lot of improvement in Charlotte, even without services.

Elizabeth recommended a therapy called therapeutic listening. Typically this is introduced by an Occupational Therapist and then pursued at home for 60 minutes over the course of a day. Elizabeth felt that a few months of therapeutic listening would have Charlotte in great shape for Junior Kindergarten.

So, after researching the therapy (which we thought sounded not only workable, but fun), we contacted the one OT practice that Elizabeth knew had therapists certified in this therapy, Beth Osten and Associates, to set up an evaluation.

More to come…