March Madness Brings Out the Best in My Angel

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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There is a bit of March Madness going on in my home right now. And I’m not talking about the kind that revolves around basketball.

Our March Madness involves the chaos of home improvements. Some people thrive in chaos, but I don’t, and our 12-year-old Angel, Juliana, usually doesn’t, either. Angels can experience anxiety, and changes to their environment or routine can be a trigger. Fortunately for us, however, Juliana has been amazing through the changes currently happening around her.

Call it crazy

The reality of life is that there will be moments of chaos — it’s normal, right? We’re having our floors redone, which means that all the old flooring had to be removed. There is no flooring right now, and the subflooring is bumpy and uneven. Dropcloths and debris are everywhere. Everything that sits on the floor must be removed or relocated.

I knew things would be a mess for a while, but I underestimated it. Juliana doesn’t look down when she walks, so our downstairs is now a huge hazard for her.

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I thought I was being clever when I scheduled the project for our long Christmas holiday last year. With school out at the time, I didn’t have to worry about Juliana being able to navigate downstairs while everything was out of place. But the holiday ended up being less than ideal, because Juliana got sick. Additionally, retailers were facing supply chain problems, so the timing was simply out of my hands.

What was one to do? Well, the first thing that comes to mind is pulling out my hair, but that, of course, isn’t the best solution. Instead, I’ve come up with a less-is-more plan to help us push through the week. The less time we spend downstairs, the better.

Having all the crazy upend our routine made me think about the things that special needs parents face. Navigating changes, even simple ones, takes a little creativity.

Safety first

To keep from pulling my hair out in situations like this, I must recognize the challenges and make smart adjustments. For example, when Juliana isn’t in school, she stays upstairs. She’s spending little time downstairs because there are too many things she might bump or crash into.

For a person like me who thrives on order, having our house be a wreck is frustrating. I’ve put off doing things that need to be done downstairs. And I can’t begin to think about the cleanup. Stuff is everywhere. Taking some time to pause and do some mindfulness exercises is helping to keep me calm. After all, this project won’t go on forever.

March Madness | Angelman Syndrome News | Juliana plays with a Pilates ball amid the chaos of home renovations.

While the chaos of home renovations goes on downstairs, Juliana enjoys her Pilates ball upstairs. (Photo by Sabrina L. Johnson)

The bright side

So how is Juliana faring in the midst of all these changes? Surprisingly well. Perhaps she sensed the craziness downstairs and decided not to add to it with her usual screaming and fussing. We’ve had loud equipment in the house, and even the change in our routine of arriving home from school hasn’t upset her.

Without a doubt, we got a reprieve from the challenging behavior she’s been dishing out recently. I’ll take it. I’m not loving the chaos, but I like these surprising wins when they come. I’m truly hoping her calmness will hang around a little bit longer.

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.


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