Making Plans Toward Stair-stepping Success for My Angel

While many people are already starting to abandon their New Year’s resolutions, I’m just beginning to focus on my intentions for 2023. I gave up resolutions long ago. But each year, I focus on one or two loose plans that I work toward as time allows.

This year, I’m ready to focus on more support for my 12-year-old Angel, Juliana, as she conquers the stairs. Walking or navigating stairs doesn’t come easy for her. Children with Angelman syndrome may not even begin walking until they’re 3 or 4 years old. Juliana started walking just shy of her fourth birthday. She walks well, but she still has her challenges.

Transitions to uneven or odd surfaces still give her pause. And then there are the stairs. At one time, stairs were not a problem. But a few years ago, they became her kryptonite. She doesn’t like coming down them. When she’s sick, the task intensifies and a full-blown meltdown ensues. So I let her stay upstairs when she’s not feeling well.

Last year, I devised new strategies to coax her down and relieve some stair-climbing trauma. Those ideas are working well, and I honestly can’t remember the last time she pitched a fit when it was time to descend. Still, I feel ready to do something we’ve talked about for years — adding some additional railing to give Juliana more support and confidence.

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Part of her hesitation in coming down, it seems, is all the space she sees she must conquer. She grips the banister on the stairs tightly and moves carefully. When she steps down far enough, however, she peers over the banister into the foyer. I’m sure it’s a little daunting to see all the space and steps that remain. It also distracts her from what she needs to do.

By adding a handrail on the right side, she’ll come down on the opposite side of the stairs, where the only thing she’ll see is the wall. I think it will not only take away some of her uncertainty, but also help her focus more on her stepping and balance.

We aren’t new to DIY projects at our house, but this is one task I plan to leave to the professionals. Our last big project was tackling a transition wedge for Juliana. It took some years to pull that off, but we eventually got it done.

Living with Angelman syndrome, I’ve learned to adjust my timeline around unexpected moments or illnesses. Often, I feel I’m moving at a snail’s pace. Then I’m reminded of the race between the tortoise and the hare. The tortoise always wins.

It might take all year or the next one, but Juliana will have a new rail within her reach soon enough.

Note: Angelman Syndrome News 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 Angelman Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Angelman syndrome.