Embracing Change to Navigate the Quirks of Angelman Caregiving

In a special needs life, change is the everyday normal. This can be a challenging realization to embrace. But once you wrap your head around it, the winding path of an Angelman syndrome caregiver becomes a tad bit easier to navigate.

My 11-year-old daughter, Juliana, headed off to school this week to begin her last year of elementary school. There was no angst or signs of separation anxiety present. Angels can often have issues with separating from loved ones or doing new things.

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However, Juliana is old hat when it comes to school. In addition to that, we have been prepping for her return to school all summer. This morning, all of our dress rehearsals paid off.

School is Juliana’s happy place. In kindergarten, she displays team spirit with a logo shirt and pompom. (Photo by Sabrina L. Johnson)

Juliana marches into fifth grade as the oldest student in the classroom. She is also the tallest. There will be new students for her to get to know.

Her teacher of the last three years won’t be there to greet her as “Ju Ju Bean,” the endearing nickname she gave Juliana. This year, she’ll be welcomed by her new teacher, who started at the tail end of last year.

In the scope of things, these little adjustments are small. After all, life is full of changes. In an Angel’s life, however, change can be overwhelming.

My goal is to minimize the stress of new things by keeping the other legs of our life as simple as possible. In that way, a healthy balance is struck and the changes that are occurring around Juliana seem subtle.

Just because she’s not speaking about it doesn’t mean that Juliana isn’t aware of changes. A knowing raised eyebrow or sideways glance is a sure tell that she notices a difference.

So, we talk about the changes, and I repeat details about the differences. “Juliana is going to school to see her teachers and friends” has been my mantra for the transition back to school.

Starting fifth grade this year, Juliana sits patiently while waiting for her new teacher. (Photo by Sabrina L. Johnson)

That’s just the way it is

Managing the never-ending changes of an Angel’s life takes time. Some days I think I have it licked, and then a new challenge occurs that makes me question my confidence.

Early on in Juliana’s diagnosis, I realized there would always be a change of some sort around the corner — a new therapist, a better doctor, improved strategies, or another nuance of Angelman syndrome to manage.

When you’re a creature of habit like me, change can be hard. But I’ve learned that I can adjust better when I am more flexible to the change that is sure to happen. Giving Juliana notice of those changes helps her, too. It’s a win-win strategy that’s better for both of us.

Juliana’s health or mood can shift without advanced notice. That type of change can be stressful for anyone. However, my goal is to avoid living in a constant state of panic, wondering what horrible thing will happen next.

Keeping a mindset that something is going to change grounds me and helps me prepare for the next new thing that’s coming just around the bend.

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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.