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.

 

65 thoughts on “My child is not a puppet.

  • February 21, 2014 at 10:43 pm
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    We’re going on 12 years since our Fragile X diagnosis for David and Jonathan is 7 and was diagnosed in utero. I heard this term early on after our diagnosis and honestly didn’t even relate it to the TV show Fraggle Rock. I know that seems unlikely but I heard or read it in the context of relating to our kids with fragile x and generally only on blog posts or the listserv when people were trying to comment and be more brief I their wording. I started using it because it seemed cute to me and my son was so darn cute. However I haven’t ever used it in soaking to other people about my kids or Fragile x. It’s part of my email address (fragglemom) and I use it as part of some passwords or logins for things. When people see my email and ask if it’s because of the show I tell them about Fragile X. For me it has been a way too spread awareness. San meeting with calling them X-Men or whatever else. I completely understand what you’re saying here and it had made me think about it more deeply which is always a good thing. When talking to my kids or about my kids theu have plenty of nicknames/terms of endearment and none of them refer to Fragile X. David has been baby, Buster Brown (yes like the shoes), bud, buddy, and sometimes Big Man but NEVER Dave or Davie. He HATES when people shorten his name and had always said so from the time he could express it. Nathan doesn’t have Fragile X but it has always grafted on me when people refer to their children who don’t have Fragile X as “unaffected” because what I’ve seen constantly from the day Nathan wad born is that Fragile X DOES affect him and his life even before we knew what Fragile X was. He is also adamant about not having his name shortened to Nate or Nate Dog as so many people try to do. He has been bub, son, kid, buddy, baby, and much to his dislike Middle Man (in relation to David being Big Man). Jonathan had been mainly monkey, but also lovey, bubby, sugar, Buster Brown, baby, kiddo, Miracle baby, and of course Little Man (to David’s Big Man and a Nathan’s Middle Man). Nathan has PTSD from being David’s target For his adhesive bendable for so many years while they shared a bedroom and u had no idea how bad things were until I wailed in amd saw for myself one night when they should have already been asleep. It’s awful and Gives me much guilt but also has shown me that these kids who don’t have Fragile X but their siblings do ate just as affected by it as anyone else in the family. So my point in all of this is that u understand what you mean when you say the term Fraggle grates on you. I get it. I will definitely try to be more conscious of how I soak of my kids on fb and such but I don’t intend to change my email address. It’s been the same for over 10 years. I love that toy out this out for us all to think about and consider because it never occurred to me that some people in our Fragile X family would dislike the term since I heard it first from other members of this group. I do like what someone else said about it being a way of showing acceptance of Fragile X. I have always tried to be a positive person but this diagnosis rocked me. Learning to accept this all as a part of our world and my family was crucial for me to be able to move forward in our lives, to be able to fight for my kids and all that they need every single day. I needed to accept it in order to have the strength to do what I had to do then and now and in the future. I hate what it does to my kids frequently but I also know that they would be such different kids without it. I love them for who they are including the past that has Fragile x. They have my respect in every way because they are incredible people and they overcome obstacles daily that I can’t even imagine.

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