Always Work to Be Done

Ella’s a hard-working 7-year-old. She rises early in the morning for school. While at school, she does what all of the other kids do and more. She has therapies to go to (physical therapy and occupational therapy) throughout the week. They work her hard at school, trying to help her meet her individual education plan (IEP) goals. The she comes home.

When she arrives home, she gets an hour-long break, when she can play and be a fun-loving kid. She colors, does her iPad, plays with her characters or pretends to be a teacher. The hour is well-spent. Then comes more work.

Ella is in second grade. She is tackling the art of subtraction and reading. She has homework in each of these subjects in addition to spelling and word work. She sits in her wheelchair at the kitchen table, counting on her fingers and reading aloud to no one in particular. She sorts her words, spells them, and talks about their meaning and context. She’s not finished yet, though.

She also spends 30 minutes in her stander, practices her new wheelchair and does her physical therapy (PT) exercises — all before dinner.

It has been a bit of a struggle getting all this in and keeping up with her siblings, who have their own agendas to follow. We combine tasks such as the stander and math facts, doing them at the same time. Sometimes we do PT and spelling simultaneously. We do whatever it takes to get as far into her work as we can.

Dinner is served, a break in the monotony. Then, an occasional dessert and we’re ready for bed: bath, jammies, getting her hooked up to her overnight machines. Throw in some reading before going to sleep and the day finally comes to a close, only to repeat the process the next day.

And all the while, she keeps a smile on her face and a spark in her eye.

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Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.