Sometimes It Feels As If We Live in a Different Universe

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by Mary Kay |

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This morning was like any other day, except it wasn’t. Instead of my doing “everything,” Jess pitched in to help without being asked! As a mom, it’s almost always easier to do chores myself, but I need to stop that. It’s amusing to me that both my husband and Jess are prompt dependent, probably of my own creation. But I’m trying to fade away …

Our day started at 6 a.m. — an hour early. Jess woke up in her birthday suit, running down the hall to the privy. Even with the AC on full, she tends to strip in the summer months. Inhibited, she is not. I admonish her a little bit, telling her that some day, she will have roommates and this is not acceptable.

I set her clothes out (should have let her choose) and then left her to her own devices. She has her own sense of style — half the time her pullover tops are on backward. This morning, no adjustments were needed.

Directions to our universe: Take a hard left after the moon. (Courtesy of Mary Kay)

“Since you are up early, why don’t you feed Roxy?” To most people, this is a simple task, but there are at least 10 steps to complete the job. It’s important for her to hold the measuring cup by the handle so she can dig into the dog food. I need to watch over to see the portions are correct. Sometimes she pours only half a cup to which I say, “You don’t like it when I don’t feed you enough.” (Sometimes sarcasm comes out of my mouth before morning coffee. It’s OK, she’s old enough to get the subtlety.) Then, she adds more to the feed bowl before returning the cup to the feed bin, closing the top and pushing the bin back under the table.

The dishwasher needed emptying, and without asking, Jess started to help. Her job has been to sort silverware. I still need to remind her to stand to the left of the drawer. For some reason, her accuracy is higher on this side than on the other. She’s learned to correct the orientation of the utensil before placing it in the drawer, but she will put forks and spoons together if she wants to rush. When that happens, it reminds me of the time when my mom asked me to clear the dishes after dinner and I threw all the silverware under the table. I was 4. And THIS is why I have to watch over Jess. She’s more like me than I care to admit. Anyhow, today Jess took her time and completed the job without prompts.

She then began to hand me the dinner dishes. This is new. Typically after sorting silver, she’ll leave. But this morning, she just handed the plates to me, sorting them as she took them out of the dishwasher.

It was a long wait for her ride after breakfast. She chose “Guardians of the Galaxy, Vol. 2” again on her iPad. She didn’t seem to have much interest in talking, so I left her to her own devices (pun intended). While she was entertained, I cleaned a window and set up a sewing project. The procrastinator in me knows that if I didn’t do these jobs before leaving the house, they wouldn’t get done today.

The horn beeped — her ride was here. Jess headed out the door without looking back. She would be out for the day, adventures unknown. OK, I know where she is going and what she is doing, it just sounded poetic. What is important is that when Jess goes to her program, she’s working on her independence and social skills. None of these can be done in a vacuum at home with Mom. Wait — Mom has a vacuum … but I digress.

Chores that fit her abilities are important, and I don’t believe in paying an allowance. But it would help with managing money; might need to think about this some more. All I know is a girl has gotta start somewhere!

We may live in a different universe when compared with a typical family, but Jess is making strides in her own time, and today was a good day.

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.


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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