Having Fun While Building Skills

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by Mary Kay |

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Roxy and a mini-me snowman. (Photo by Mary Kay)

When it rains, it pours. When it snows, we play hooky. Today we are taking advantage of (hopefully) the last snowstorm of the season. We’d decided the night before to have a girls’ day. Jess had a delayed start. In her perfect world, we sleep in, watch movies, and do some cooking — this is exactly how our day has unfolded.

(Photo by Mary Kay)

I made us egg in a cloud for breakfast while Jess finished watching a movie, “The Spiderwick Chronicles.” (That movie is best watched in the daytime, as it’s too intense at night.) We then made chocolate banana bread together. I like cooking with her. She doesn’t realize that while she is having fun, she’s working on skills. Jess has always been sensory-defensive and usually attends cooking sessions for a short period, often leaving me to finish what we started. However, this morning, she didn’t get distracted and did 100 percent of the mixing.

Making chocolate banana bread.
(Photo by Mary Kay)

Jessie prefers to look at snow from the window without interest in going outside. She does not enjoy being in the cold, does not like making snow angels, and has a fear of falling. Ice is her kryptonite. Every attempt to make a snowman has ended with her waiting at the door and me frustrated because she did not find the activity fun. As far as I’m concerned, you are never too old to build a snowman, so for her viewing pleasure, I decided to do it myself. Unfortunately, the snowballs did not pack while rolling and so he had to be made in place. The result was a miniature man not much bigger than our dog Roxy.

Egg in a cloud.
(Photo by Mary Kay)

After a morning of fun, work must be done. There are breakfast dishes to clean, beds to make, and laundry to fold. What takes me 30 minutes to tidy will take Jessie the rest of the afternoon to complete. One of my biggest challenges is practicing patience while keeping her to the task. However, today we have nothing but time and this is the best way to spend it.

Tomorrow we go back to work. The memories of our day together will last much longer than the melting snow. 

To read more about our journey, visit my blog. We wouldn’t even have a story if Jess hadn’t found her AAC voice. Also, check Angelman Syndrome News on Fridays for my upcoming columns.

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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 Services, and are intended to spark discussion about issues pertaining to Angelman syndrome.

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