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…
- 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.
- 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.
- 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.
- 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.”
Love you so much for this!!!!
This is GREAT! I, too, have always cringed at the word fraggle… you though have a better memory. I always referred to it as the show “Monster Rock” LOL When it was Fraggle Rock. Thank you for writing this! 🙂
I know it is used in an endearing context, but I completely, totally, thoroughly, wholeheartedly agree with you. It makes me cringe just as much as “an autistic child” vs “child with autism”. When Dan went to PIP & they opened our eyes to People First language, it stuck like glue. (I do not love the FX-er term either). Hayden Zem will always be Hayden first.
Completely agree. A disorder, disease, delay or just a characteristic or whatever should never define a person. A person is a all lot more than that.
Generally I try to use “our kids” when I’m referring to them as a group or implying some commonality…mostly because they are our kids 😉 I lay claim to all of your kids as one of mine <3
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Love it Melissa!!!!!!!!!! While I DO NOT use this “term of endearment” I will not fault others who do. We are 12-years into our diagnosis and if I have learned anything it is that this can at times be a very difficult life and all we want for our child/children is for them to be happy, accepted and given every opportunity. 🙂
I am a newbie to all of this I have never used or thought to use the word fraggle. In fact I cringe when I write some things because I am not always sure it sounds right or correct no matter how I phrase it. It’s a lesson I am learning daily. This past week my nephew spent the afternoon with us and said Rhys is weird. I didn’t know how to react to that one. On the one hand I was ready to jump down his throat on the other he’s my nephew he’s young (6) and he doesn’t know. I still struggle with this one how do I explain it to his couslings? Well I guess it’s not up to me but their parents to do that or perhaps a whole family conversation. I downplayed it and just said he’s not weird he is just different from you just like you are from him and left it at that. I have two siblings who like to use the “R” word. Not toward my son (I would kill them if they had) but towards themselves. I try to educate them by posting everything I can on the R word and yet it doesn’t seem to sink in. I will hope that they can come to respect themselves and others and not use the R word but I can’t control what they say or do. I am trying to educate them though and educate myself too. Thank you so much to all of you for opening my eyes up to so much. I have a long way to go but slowly and surely I am getting it.
LOVE LOVE LOVE! I agree whole heartedly. It has always made me cringe.
I’m learning every day too, Nicole! There’s no end to it 🙂 I would say that it is your job to educate his cousins…you know Rhys better than anyone in the world so you get to teach on the subject. You could adapt some of the ideas from this to your situation. http://www.fragilex.org/treatment-intervention/education/talking-with-students-about-fragile-x-syndrome/
Thanks M that gives me comfort knowing I am not alone in the learning process. True on the educating them. Guess I should brush up on my teaching skills and school all of ’em 😉
I like it! I’ve never called William a fraggle. For some reason I just really didn’t identify with the term.
I have to sit down and read this. I want to share my views before though a little. I really try hard to tailor my vocabulary to whom I am speaking with. When I reply in the FX group, I often will refer to Ayden as my FX-er and Issac as my non FX-er. I feel it is easier for others to read when they do not necessarily know my kids. Now, when I am talking to someone like you or anyone else that knows my family (and especially not in front of any of the kids) I would not ever refer to them as that. I also do not use the term Fraggle, though I have at times when speaking with someone who called their child that first. In those instances I have used it when replying – and it is also usually in a message board setting. I attempt on all levels to just be sensitive others because even with our amazing community we all have different views. I’m glad you shared this though, because it is good to know this bothers some people while others find it endearing.
For us personally, I never call Ayden or Emma that. (I DO call the kids #1, #2, and #3 semi often though HA.)
…and then I read your whole post and I knew I would agree with you. Mostly for me, because of #2. I don’t identify my kids by their disorder. They are Ayden, Issac, and Emma – they HAVE fragile x syndrome (or do not). Calling them something, whatever that term might be, gives others a way to seperate them – To make them different. To keep them apart. I dont’ want that for my kids, or any of our kids. Thanks for posting. 🙂
I never heard that term/usage before today.
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Funny you posted this I was just talking with my husband this week saying I see our kids get referred to as “Fraggles” in our fx fb group and It just doesn’t sit well with me. While I fault no one for what I honestly believe is used by some as a term of endearment for me I do not like it. My children are Chalie and Gianna. Chalie is 11, he has blonde hair and blue eyes. He can already drive his poppys tractor. His innocent smile brings peace to my world. Gianna is 10 she has brown hair and blue eyes. She writes in her journal EVERY single day how she wants to help sick animals and adopt children who don’t have parents. My children are not puppets. They are my babies, my world, my heart.
I agree! I don’t remember the t.v. show & never understood how the term was added into the Fragile X vocabulary. I just had this exact conversation with friends this a.m. They couldn’t understand what all the fuss was about in the way they described someone with different abilities. Not being rude, they just didn’t understand the difference between “having a child with autism”& an “autistic child.” Trust me, they understand now:). I want people to see Alex, to fall in love with his laugh, his smile and appreciate who he is, what he is about (which is so much more than Fragile X)
I am also working to change the world. Even if it is one person at a time:) thanks for sharing.
We are BIG fans of Jim Henson’s creation in our house, but that’s the only way we use the term 🙂 His puppets were genius <3
Cortney Abouelseoud: I too refer to my boys as #1 and #2. #1 is my oldest child and will always be #1, and #2 is my baby!!!! Also, they do know who is who!!!
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YES YES YES!!! THANK YOU! I also love my FX friends and community, but I DESPISE this term.
As a social worker, I’m a firm believer in person-first language. It’s not ‘aspies,’ it’s a child with aspergers. It’s not ‘schizo,’ it’s a person with schizophrenia.
And my son is not a ‘fraggle,’ he’s a 5 year old boy with blond hair, Fragile X, and a smile that melts me every time.
Thanks for speaking up Lola.
I respect your honesty Melissa, and so I hope that you will respect mine. Firstly I have not and will not describe my child as a “Fraggle” for most of the same reasons as you, however while I have many issues with Fragile X Syndrome, people (on the fb page),either describing children with fragile x as Fraggles, fx-ers, X-men or any other abreviations either as a term of endearment or just to shorten a sentence to those that already know what they mean, are not some of them. I will make a mental note though that you feel differently about this point, and I’m glad you felt able to tell people.
I do appreciate that, Alison. We’re all different, it makes the world go ’round and all that jazz 🙂
Thanks for posting this Melissa!!! I call Matty my Fraggle, just like I call him my monkey, my baby, my nugget, etc. Just another phrase but honestly hadn’t considered the things you shared. Gives me something to think about it and reminds me that I’m always learning!
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Thank you! You took the words out of my mouth!
It”s evening here and I’m sitting and smiling as I am going through the pictures on my computer that I took of my children earlier today during one of our “little adventures”. I responded to your post earlier because it resonated with me. Sometimes things prickle my conscience and take a while to filter through thoroughly. I think the reason that I don’t take issue with people on here using those words as a term of endearment, is because it makes me feel that they have come to terms with FX, they are at peace with it/ as much as ever possible, and that makes me feel hopeful that it is possible to reach that point. I find that less distressing than people who are the other way, and say things like ” My son/daughter is a child who happens to have FX”, (or any other condition that may not be outwardly immediately obvious). Instead of saying “My son/daughter that has FX”.This perhaps may be peculiar just to my thought process, but it makes me feel like they are trying to get away from FX, autism etc, deny it, hide it even, and it makes me feel sad that they may not be on any level of acceptance and in fact are very angry about it. Like they are trying to pass their child off as “Normal”, for some reason, as our children that are effected are not “Typically developing children”, and have varying degrees of special needs that need understanding, compassion and caring for. I can only explain things in terms of how I see my own child who has FX. I was devastated for him when I found out that he has this condition, devastated for what that does and may well mean in the future. As time has gone on since the diagnosis, many things have happened and changed in our life (too many to go into now), but one thing has never and will never change, I LOVE AND RESPECT MY SON FOR WHO HE IS. As I do for all of my children. He is one of four, the other three typically developing and non fx. He is totally included in everything that we do everyday, and none of us including him, would have it any other way. He is not marginalised, quite the opposite either within his own family or with anyone he meets as he lights up anyone’s day and always makes people smile. Despite only being four and a half, he has a great sense of humour, he copes with pretty much everything sent his way, he’s got great horse riding skills, makes friends, does well with his speech and is growing in confidence all of the time. Of course that may change, and of course I don’t know everything, and I’m not going to lie it does take energy to remain positive .Just that in thinking about all of this I have realised that I have come to terms with things a lot more than I had realised, and I thank you for that. X
Tenes Razon amiga
My aunt told me a while ago that she hates it so I’ve stopped using it.
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For anyone who isn’t familiar with “people first” language, this link to the ARC provides a good summary.
“Our words and the meanings we attach to them create attitudes, drive social policies and laws, influence our feelings and decisions, and affect people’s daily lives and more. How we use them makes a difference. People First Language puts the person before the disability, and describes what a person has, not who a person is. Using a diagnosis as a defining characteristic reflects prejudice, and also robs the person of the opportunity to define him/herself.”
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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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RT @BasicallyFX: My child is not a puppet.: http://t.co/HSo0MMDYNM #fragileX #peoplefirst #respect
RT @BasicallyFX: My child is not a puppet.: http://t.co/CuBN73Oqec #fragileX #peoplefirst #respect
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RT @FragileXMA: RT @BasicallyFX: My child is not a puppet.: http://t.co/HSo0MMDYNM #fragileX #peoplefirst #respect