Assisted Ballet

Sarah lost skills gradually and slowly over time. We didn’t really think about the fact that she couldn’t do some things she used to do, it just was something we accepted. For a couple of years she was able to take little steps while wearing her harness for assisted ballet. Then, she couldn’t do it anymore, and she just kind of hung around in the harness and slid her feet along the floor. She still loved ballet. She used to use her fingers to point and pick up objects. Then she couldn’t use her fingers, then her hands. For a long time there was simply no good explanation for the lost skills.

The only thing we were told was that when kids have cerebral palsy and grow, they constantly have to readjust to their new size and height and learn some skills again. But it didn’t seem to explain her skill loss. It especially didn’t seem to explain why she didn’t talk at all anymore, and the big question, why she seemed like such a shining star academically in preschool and by third grade was barely hanging on. “I guess she’s just not as smart as you thought,” said the County Special Needs Administrator oh-so-compassionately.

We didn’t get an explanation until finally her whole condition received a name and diagnosis as Complex Early Onset SPG-4 around 2020, and loss of physical skills was one of its features. It explained a great deal, and Max and I cried together. We didn’t know how much physical regression and skill loss there would be, whether it would be like ALS and other neurological illnesses where she would eventually need assistance to breathe and pass urine. I guess it’s better that her illness did not advance that far. I just don’t know.