Magazine article The Exceptional Parent


Magazine article The Exceptional Parent


Article excerpt

As a psychologist, pre-Keira, I thought I had a lot of ideas and recommendations for kids with disabilities. But, gosh, as a mom, the possibilities are endless. They extend even beyond what's "scientifically proven." My options have swelled from essential OT, PT, & speech to include vision therapy, cranial sacral therapy, massage, essential oils, & hyperbaric oxygen therapy!

Keira has congenital cytomegalovirus (CMV), which caused considerable and permanent restriction to her brain's development. She has cerebral palsy (CP) and cortical vision impairment as a result. We had been told to expect "profound delays in all areas." We will do anything in our power to help our daughter grow--anything to increase the chance that we could push her limited developmental capacities just a bit more. We will intervene, accommodate, and support to no end. Right? Maybe not, I'm finding.

I was asked recently whether we were starting to get the hang of all Keira's appointments. In particular, they wondered whether we'd been able to figure out which specialties and therapists were worthwhile and which were more trouble than they were worth. Because of Keira's diagnosis and prognosis, we knew that she would have a busy schedule. Having worked with other families of kids with neurodevelopmental problems, I also knew that we could eventually get to a place where we'd be tossing out some services depending on how life was flowing.

I'll explain. In Keira's 12 months, we've regularly visited the pediatrician, the infectious disease doctor, the otolaryngologist (ENT), the pediatric ophthalmologist, and the neonatal follow-up team. She has occupational therapy (OT), physical therapy (PT), cranial sacral therapy, and vision therapy, and a service coordinator. Gastroenterology (GI) is on the docket and neurology and endocrinology are strong possibilities for the future. This leaves us, so far, at an average of three appointments per week. No big deal. We'll do anything for our daughter.

But even within the first few months of her life, we saw that the drawbacks of therapy outweighed the benefits from time to time. For example, Keira responded tremendously well to her initial cranial sacral therapy. A few minutes with the therapist would have Keira's eyes working together, looking straight ahead, for days. Maybe even a week. To us, this was really significant, but not as significant as the downturn that Keira faced if she got too overstimulated. If she had to cry in her car seat for even 10 minutes of the 90-minute round-trip to the therapist, she might not eat or sleep well for two to three days! A straight gaze was starting to look frivolous and cosmetic next to weight loss and irritability.

The question became, will this appointment help her more than it will stress her out? And almost as important, how much will it stress me out? 'Cause, as I learned at the beginning, if I get stressed out, I'm no good to Keira, let alone anybody else!

So, my friends asked me this great question about whether we were figuring out how to weigh each of these appointments. It's such a good question, and though my answer at the time was, "Yes, we are figuring it out," there are so many moving parts that are always changing. I can think of three examples as I write:

1. Ophthalmology. Our sense is that Keira doesn't see well. She only notices what's very near to her face and her best fields of vision seem to be down low and to the right. Her left eye often crosses inward. When she's really out of sorts, both eyes cross and once in a while, she's even walleyed (Yikes!).

The pediatric ophthalmologist "tests" her vision by watching how she responds to flashing lights and noisy wind-up toys. He holds enormous flashcards with black and white designs in front of her face. The results are conjecture, at best. These assessments are highly compromised due to her poor motor mobility at this point, so the doctor generally tells us only what we already know: Keira doesn't see very well and the problem is brain-based, which means "wait and see" what happens. …

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