My Latest Rett Syndrome Challenge: How to Overcome Decision Fatigue

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by Jackie Babiarz |

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One of the most draining aspects of our lives as parents and caregivers of someone with Rett syndrome is decision fatigue.

The American Medical Association describes decision fatigue as “a state of mental overload that can impede a person’s ability to continue making decisions.” Most parents experience this at some point when their kids are young, as decisions must be made for both themselves and their kids. Rett syndrome adds another element.

Decision fatigue causes me ongoing exhaustion. Every single thing related to my 13-year-old daughter Cammy, who has Rett syndrome, must be decided: when she should be changed, fed, and bathed, when to brush her teeth and hair, what clothes she should wear, when to get her out of bed, what medications should she take, and much more. No teenager wants their mom to pick out their clothes or fix their hair, and Cammy is no exception.

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My solution is to rely more on Cammy’s younger sister, Ryan, to help pick out the clothes. Ryan picks out a couple options and hold them up for Cammy to see. Responding with her eyes, Cammy indicates her preference. If Cammy looks down, it means she wants something else, and Ryan will find something else.

When I watch the two interact like that, it always makes me smile. In most families, the situation is reversed — the older sister helps the younger one with fashion advice. But in our family, it’s different. On special days, Ryan is even allowed to put lip gloss and blush on her big sister. That makes Cammy’s smile grow even bigger.

It seems so silly, but all of this is one less thing I need to decide. Any decision someone else is willing to make for me helps me with decision fatigue. Just by picking out clothes, Ryan helps carry us along this journey with Rett syndrome.


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

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