Having routines is great, but keeping them is the challenge
With Angelman, the importance of sticking to routines cannot be overstated
Routines aren’t just for babies and toddlers. They also create consistency that my 13-year-old Angel, Juliana, relies on.
This is not surprising given the fact that changes in a routine or surroundings can trigger hyperactivity in those with Angelman syndrome. When I’m tempted to meddle with consistency, remembering the past helps me stick with what’s best for Juliana.
Years ago, we had a rare snowstorm in the Atlanta area. With a true sensitivity to cold, Juliana did not want to go outside. I took her outside for a bit until I realized that she was not enjoying herself. From then on, I vowed I wouldn’t force things on her that would disrupt her comfort level.
Routines rule
The next time we had a snow day, I came up with an alternative plan. This change of plans was easy enough, and I felt that I had turned a page in recognizing that being creative and flexible go hand in hand with Angelman syndrome.
We haven’t had snow in a long time, but those scenarios have stayed with me. I needed those memories last week when I planned to take Juliana to school. Taking my daughter to school sounds innocent enough, but my husband is the one who usually takes her. Because of my schedule, I rarely drop off Juliana at school, although I do pick her up sometimes. Daddy taking her is a part of her normal routine.
My first opportunity to take Juliana to school surfaced earlier in the school year. I was off work and excited to drop her off. The decision was a mistake and a disaster. She was happy until she realized she was simply going to school. She cried like crazy, and I was sure she was sick. When her teacher came to get her for class, I told her to call me if Juliana didn’t calm down.
Not so fast
She did calm down, and she wasn’t sick. The cause of her meltdown was me. I just assumed she knew it was a school day and we were headed there. However, when she got in the car that morning, I’m sure she wasn’t thinking about school. Since it was just the two of us, she may have thought we were off to do something fun like when we went to the symphony.
My big takeaway from these episodes is that I can save myself and Juliana a lot of grief by being careful with her routine. Of course, change must happen, but I’ve learned not to add fuel to the fire if a change isn’t necessary.
As I move on in years as the parent of an Angel, I’d like to believe I’m getting wiser. Which brings me back to last week. I was off work again and came dangerously close to taking Juliana to school. I really wanted to have that time with her in the morning that I never get. But I reminded myself of the last time I took her to school. There was no need to replay that ugly scene.
Instead, I decided to pick her up. And you know what? There was no crying or confusion. However, there was a squeal of delight when she rounded the corner and saw that Mommy was there to take her home.
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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