Troublesome Behavior

I just want to make this point very clear, my little girl Maddie can do no wrong in my eyes. That’s the obligatory dad statement right? However, there are some worrisome developments that are taking place. Having Angelman Syndrome causes Maddie to seek out certain sensory stimulants. Some of these sensory seeking behaviors are turning quite aggressive.

As I’m writing this post, I actually have a tissue in my nose. While picking Maddie up to get her ready for bed, she grabbed at my face. One of her fingers slipped inside my nostril and got deeper than a Covid test ever did. The result was and is a non stop bloody nose. The grabbing of faces is one of these worrisome behaviors.

I can’t quite pinpoint when Maddie started grabbing for our faces. At first it seemed so innocent. The behavior was almost as if Maddie just wanted to pull us closer to her. Usually grabbing at our face resulted in a kiss from her. Eventually the grabbing of the face started to become more and more aggressive. It probably changed around the same time that her kisses did. Now occasionally instead of kissing us, Maddie will actually bite. These bites have left marks on our faces at times.

It is not only biting other individuals, two weeks ago Maddie started to bite herself. It’s not in a self harming way, and we have yet to see a mark. However, we started to notice that if Maddie did not have a toy or a pacifier, she would start to bite up her arm. This is another sensory seeking behavior.

These behaviors have not become destructive. The worry is that they will one day. I’ve reached out to the Angelman community at large and we’re starting to adopt some ideas. The main suggestion was to redirect their behavior continuously. I try to do this when Maddie reaches for my face. I start to redirect her hands to the collar of my shirt. After a few attempts at trying to grab my face, she relents to my collar.

Now, I would be remiss if I didn’t mention Maddie’s hair pulling. Maddie likes to take a huge handful of my wife’s hair and yank down. Obviously I do not have to worry about this one but this is another worrying behavior. As with everything, my wife and I will work as a team to get Maddie on the right path with her behaviors. So if you see us out and about with a few marks on our faces, just know we’re working on it.

-Written by Adam Birchmeier