My Pet Peeves as the Mother of a Teenager With Special Needs

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by Jackie Babiarz |

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Some of my pet peeves in the typical world in which I live are people who incorrectly use the word “literally,” or refuse to wait for others to exit an elevator before entering, or try to get off an airplane before it even arrives at the gate. There are also many things that make me uneasy in the special needs world. I am certain I did some of these things before my teenage daughter, Cammy, was diagnosed with Rett syndrome. Now, I’m sensitive to it all.

One pet peeve is when someone repeats “What?” to Cammy, who is nonverbal, when she is moaning or crabby. This just upsets her even more. She’s not going to suddenly blurt out the reason she’s annoyed. The more it is asked, the more agitated she gets. Instead, it’s better to ask her yes or no questions so that she can indicate with her eyes what is bothering her.

Cammy turned 13 in March. It’s frustrating when people talk to her like a baby. If Cammy flutters her eyes at someone, it means she is annoyed with being treated like a baby. Also, being a teenager means she stopped wanting stuffed animals as gifts about eight years ago.

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Next, my daughter is not hearing impaired, so there is no need to speak more loudly or slowly to her. I don’t know why people do this when interacting with others who have special needs. If someone is unsure about how to interact with her, we encourage them to ask. We always encourage questions, and we’ve created Rett syndrome awareness cards as a guide.

There are also two phrases I will never understand. One is: “God only gives us what we can handle.” How does someone know I believe in God? And if it’s true, then God must think I’m a badass, because I don’t know how much more I can take. The other is: “God only gives special children to special parents.” So most everyone else I know isn’t special? Please.

Finally, I have never taken myself seriously enough to assume that people know who I am. When I introduce myself to someone, it is an opportunity for them to tell me who they are. Social media has really changed this dynamic, and I don’t know if some folks haven’t been taught adequate social skills or if social media just makes them think that everyone should know each other when they meet in person.

In many cases, I think some people just don’t know any better about these things. Or perhaps they don’t think ahead about what they’re going to say or do. Of course, we’re all guilty of that sometimes, and I truly believe people mean well. Everyone has their own grievances, for certain. I’m just hypersensitive when it comes to my child.

Note: Rett 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 Rett Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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