Friends and routines help ease unexpected care for my Angel

Why routine is so important for my child with Angelman syndrome

Sabrina L. Johnson avatar

by Sabrina L. Johnson |

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When you’re living with a neurogenetic disorder like Angelman syndrome, you quickly learn that flexibility and change are necessities. I’ve also learned that raising my 13-year-old Angel, Juliana, is a task that requires help and support from others.

We lead a fairly simple and average life — or as average as it can be with Angelman. When our norm is hit with a curveball, I lean on family and friends to assist with Juliana’s care. That was the case last week when a work event took me out of town overnight. To add to the chaos, my husband also had a work conflict. In addition to the inconvenient timing, our regular sitters weren’t available.

Juggling school, work, and extracurricular activities is a challenge for most moms I know. But when our routine shifts, our attention to little details ensures Juliana has the care she needs.

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Help is on the way

We did our divide-and-conquer routine, but instead of my husband and I splitting the responsibilities, our friends Katie and Stephanie stepped in after I called for help. Katie would pick Juliana up from school and transition her into her afternoon routine, while Stephanie would pick up our younger daughter, Jessa.

Katie was sweet enough to come over a few days early so that I could walk her through all the details. It’s so helpful that I already have a simple protocol for our sitters. When we need to rely on someone new to stay with Juliana, I help them feel at ease by covering the basics. A typed-up list helps, too.

At the top of that list was getting Juliana in and out of the car. Because of her ataxia, Juliana already has issues with transitioning to standing, sitting, or stairs. But because she can walk, this important balance issue is often unknown.

So I showed Katie how to get Juliana in and out of the car. I stressed the importance of her standing behind Juliana for support, but not helping her. Juliana is now adamant about getting in and out of the car without assistance and fusses if you try to help her.

You don’t say

We also talked about requests that Juliana might make with her talker and what some of her go-to gestures might mean. Little details like these matter because I want Juliana to have an experience close to her normal routine. It helps reduce her anxiety, allowing her to be more cooperative in someone else’s care. Taking care of a person with Angelman syndrome can also be stressful, so I wanted to make the time easy for our stand-in caregiver.

We don’t often have situations in which we must rely on care outside of our regular sitters. However, this perfect storm of inconvenience was bound to happen eventually. It feels good to have a care regimen that can easily be handed off to someone else.

I’m truly grateful for friends who are willing to step in when needed. But I’m also proud of Juliana, who is reaching a higher level of maturity and cooperation when a change like this needs to happen.

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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