She’s a Card-carrying Angel

During the summer, Jess goes out twice a week with Shonda. I like that they go exploring and shopping together. Yes, it’s nice to have alone time, but it’s even better for Jess not to be with her mom all the time. If she were a typical kid, the phone would be ringing … wait, phones don’t ring anymore, people text … anyhow, she’d be making her own social schedule.

Today when Shonda arrived, I had forgotten they had plans. Jess had just finished taking a shower and was ready for our night out (we were meeting an Angel family for dinner). Without hesitation, Jess left with Shonda and while she was gone, I had a nap attack. That is the other benefit — it’s an ideal time to get some rest.

Before they left, I whispered to Shonda that they should get ice cream. This seemed like a good thing to do on such a hot and muggy day. When they returned, Shonda shared where they had gone and what they had done. As she was telling me about their outing, she said they had gone to McDonald’s and a man came up to them and started talking. Jess knows a lot of people in the community and often they will say hello, but when people start talking to her because they are curious, they walk a fine line.

She has a card that we had made for special people. (Courtesy of Mary Kay)

My hackles were raised when I heard the man asked Shonda if she worked for the state. Then he looked at Jess and asked, “What is wrong with her?” First of all, DO NOT talk about Jessie in front of her. Second, how rude can you be? What’s wrong with you, sir, that you have no manners? How would you feel if we asked about the blemish on your face? It’s none of my business, right? Wouldn’t questions like that make you feel self-conscious? Wouldn’t it annoy you if someone only focused on your differences? Even so, there is so much more to Jess than her Angelman syndrome diagnosis. We have learned to have a tolerant attitude regarding social incivilities, but that doesn’t make it right to speak in front of her like you did and it certainly wasn’t very respectable.

Most of the time, Jess rolls her eyes and shrugs off this type of unwanted attention. She labels people, too. Those she likes and those she prefers to ignore. Unfortunately, she didn’t have her pocketbook with her. If she had, she could have given this man a card and been on her way. I’m all about educating others but not at my daughter’s expense. 

One of my favorite quotes in the movie “The Wizard of Oz” is when Auntie Em says, “And now, well, being a Christian woman, I can’t say it.” There are many things I’d like to say to people, but I don’t. However, we learn from our mistakes. Next time, Jess will be packing.

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.