Ellie + Coprolalia | Tourette Syndrome

Hi there 🙂 If you’re reading this.. you intentionally came to my blog through whatever site OR.. I DMed you the link because you asked me the question.. “where did Ellie learn to cuss?” 

So, let’s start here. Ellie has Tourette Syndrome. You can read more about that here in a previous post OR go diving down the fun rabbit hole of a lot of reels we’ve made on Instagram. But.. what’s MOST important to know, is that her motor and vocal tics are involuntary and neurological. Although so much of Tourette Syndrome appears behavioral (unfortunately for the poor, sweet people who have it) – it is not. Imagine being a goody-goody like Ellie, just wanting to follow the rules, have people like you and keep the peace – but you are uncontrollably screaming, cursing, throwing your neck back and so many other tics. It is a HARD disability to live with and I get to see that through the eyes of my 7 year old and what’s most important for you to know is that is not a choice.

Coprolalia is defined by involuntary swearing or the involuntary utterance of obscene words or socially inappropriate and derogatory remarks (Wikipedia). This is actually a more RARE aspect of Tourette Syndrome.. only about 1 in 10 people with Tourette Syndrome have Coprolalia as well, and imagine our surprise when our sweet, never-even-utters-a-mean-word child ends up being that 1 in 10. Total shock! And she would NEVER, ever say these words outside of a vocal tic.

THE DREADED QUESTION (LOL) – “but, where did she learn those words?”… this is what floods my inbox week after week. Some people say it with such kindness and some people say it accusatory. I guess it’s just weird in general to have a complete stranger basically try to corner you into admitting you’ve said cuss words around your kids when we all know, no parent is perfect and without mistakes. We don’t spank our kids, we don’t drink alcohol, we are our kids biggest cheerleaders and friends and our family is SO close. Everyone who knows us knows it and sees it and feels in our presence. But oh no.. we’ve used swear words in front of our kids? LOL.. YES, we have.

So Ellie’s learned swear words from such incidents like when a water bug came into our previous house and I was SO terrified (I have a horrible fear of bugs) that I called it every name in the book while trying to vacuum it up. Or the time months after our almost-deadly car accident when someone pulled out in front of us and almost killed us on the highway in Nags Head. I cussed then, too. Or when I’ve almost slipped down the stairs on a rainy day carrying her little sister, Autumn… I cussed then, too. But we don’t by any means walk around just cussing all day long – hardly at ALL in front of the kids. What people are hearing from Ellie’s Coprolalia is frequent, angry sounding cussing and they’re ASSUMING that she is MIRRORING what we have said.. and that is not accurate at all, whatsoever. Ellie is not mirroring how we have cussed – she is independently creating her own sentences that include cuss words as neurological and involuntary vocal tics due to her disability. This is not an episode of a sitcom where a toddler hears a sentence with a bad word and parrots it back. Ellie strings together her own sentences and phrases using curse words that she’s heard.

Some of the things Ellie has said and says as vocal tics:

She calls Mike (her daddy) her beautiful bitch boy … do you think I’ve EVER called him that?
Neurologist tits (WHAT?? LOL. Yeah.. tell me you’ve heard me say that anywhere. No. I haven’t LOLOLOL)
Biscuits are bitches
I’m a little fucking hot dog
I’m a highly sensitive fucking chocolate chip
“Why did the banana cross the road? To be a fucking bitch”
Fuck you shitteroo
We’re out of ass we need to go to the store to get more ass

You HAVE to be delusional if you think Mike or I have said any of these things, LOL! Actually.. we are pretty weird, but we haven’t gone this far. These are sentences and phrases Ellie came up with due to her neurological disability.

She has heard us cuss very rarely, but remember.. she is SEVEN, not three. She can read! Those “Fuck your Feelings” and “No More Bullshit” Trump flags were in her face alllllll in 2020 (and still now we see those, what’s up with that? it’s getting weird LOL), she’s been able to read for years, she’s heard cuss words in songs and on TV and ultimately… she’s going to hear these things. There is a restaurant up the island where we used to live called Bob’s and on the side it says “Eat and Get The Hell Out!” – she’s seen that one for years. It’s just NOT realistic to think you can prevent kids from learning cuss words. We are raising adults and we’re not interesting in attaching shame to these words to further cause Ellie pain and stress when she’s already dealing with such a difficult disability. This is why, as a way of healing and coping, we have chosen to laugh hysterically in our videos to make her feel better about the words she uses. She needs that. So we do it. This is how we move through this together as a family.

To us, it’s a little troubling how much people hyper-focus on this as if it were the worse thing in the world. Can you imagine how awful and stressful it is for kids with Coprolalia to live in hyper-strict households that put such a strangely shaming influence on curse words? Everyone has their preferences and we’re not saying every household should be filled with curse words, but attaching shame is not helpful or productive in any way, shape or form. Remember.. no one is without sin.

Families who have a member with Tourette Syndrome are already dealing with enough. What is hurtful and unproductive to our community is judgment especially by a lack of understanding and education. It is not the job of those in this community to educate, yet so many of us spend time posting and typing and trying our best to do so in order to advocate. Be sure to be KIND to families who have to experience this! No one wants this, especially Ellie. No 7 year old wants negative attention from using cuss words because her brain is wired differently. But people so far in our community are being so wonderful and understanding and we are SO THANKFUL for that! Be one of the goods ones, we need as many people SUPPORTING our girl and her TS friends as possible!!!

 

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