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Eastern Massachusetts Fragile X

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My child is not a puppet.

I’ve been avoiding this topic for yeeeeaaaars because I’m fairly sure I’m about to upset more than a few of my fragile X friends. I hate conflict. I like my friends. So this post is really, really hard to write. My palms are sweaty, in fact, but I want to share my thoughts on the topic.

I’m not sure when I first heard the term, “fraggle,” it was early on in my fragile X journey however. From the very first time I heard it, it has grated on my nerves. I didn’t understand why, initially. It is, on the surface, a cutesy way of referring to our kids and it is always used affectionately. So what is my problem? I decided I was oversensitive and dropped it.

But still, every time I read it, I would cringe inside a little. It does not have nearly the power of the r-word, but it makes me physically uncomfortable. It seemed weird for it to bother me so much but I did start broaching the subject with some of my friends. I still didn’t have the history to feel like I should have a voice on the subject, I was a newbie and didn’t want to make waves.

We are 2 months shy of the 8th anniversary of Caleb’s diagnosis though and it still bothers me. So, I’ve decided I want to share my thoughts on the topic, not because I want to convince anyone that they are wrong but because I would like people to really think about the word. If you decide to consciously keep using it, that’s fine…I won’t hold it against you. I also won’t “like” your post or re-tweet your posts on social media and this is why…

  1. Fraggle Rock, was one of my favorite shows as a child. It was an amazing fantasy world and I loved the characters. But they’re puppets. And my child is not. He’s a little boy.
  2. By referring to a child as a “fraggle” you are identifying them by their disorder. My son is so much more than fragile X syndrome. He is a person, like you…like me. When I describe my son, fragile X is not how I describe him.
  3. By referring to a child with the cutesy name of “fraggle” it implies lightheartedness. Fragile X isn’t cute. My SON is. YOUR kids are. But fragile X is not. It’s hard to live with as a parent and I know it’s hard for my son to live with. I’ve watched him get lost to the sensory overload and the anxiety that fragile X brings and it’s NOT cute. It’s frightening and overwhelming to him and it’s so, so sad and overwhelming to witness as a parent.
  4. The term “fraggle” does not bring to mind dignity. What I want more than anything in this world is for my son to be treated with respect and dignity. I will spend the rest of my life fighting to make that so and striving to make it so even after I’m gone…calling him a “fraggle” undermines that.

So, if you use the term, just think about it. If you’re OK with how it sounds, you go with your bad self. But words do have power and when we use our words, I believe, we should always be striving to lift people up…not marginalize them.

I would encourage you to make an effort to use “people-first” language. The pictures we paint with our words can influence how our kids see themselves and how others see them. It’s not about being “politically correct.” It’s about being respectful. It’s about honoring our kids’ dignity and letting the world know with our words that they need to honor that as well.