AIBU about using the term “ Tubie “ for a child with a feeding a tube.

[Iamfudgingfreezing]

I know I am probably unreasonable and it’s none of my business what others call their children but I can’t help it annoying me.
My DC2 has a feeding tube ( ng and jej tube ) I get increasingly annoyed if there is a question regarding one being tagged on SM along the lines of “ oh “my name “ has a Tubie. I do not have a Tubie I have a child who has a feeding device to help maintain nutrition.
I also can not understand why any parent would call their kids a Tubie like it’s their whole identity.
Example “ my Tubie is so brave “ “ my little Tubie “

I get irrationally annoyed over it 🤣 AIBU ?

I'm with you; I would hate that too, just as much as I hate my son being SEN rather than having SEN.

It's a way of recognising and reclaiming something that has caused pain.

Aspie or child with Aspergers. Doesn't matter. The child still has Aspergers either way and ones quicker to write and say.

If you're talking to someone whose child has the same condition as you is best to build bridges rather than burn them. The SN community is small. Theres enough pain and suffering that is unavoidable, choosing to get upset about something that makes mo material difference just isnt worth it.

@Hazelnutlatteplease it does though I have never told anyone I don’t agree with them calling their own child Tubie. I think it’s wrong to call mine a Tubie though.
It does cause hurt.

I had an NRG tube as a child and felt conspicuous enough without being given a special label based on my medical conditions. Wonder if the parents consider whether their child would like to be referred to in that way..

A tube is a device she is not a device she is a human. A tube is Not a condition it’s a item. Often there is a condition that causes the need for a tube yes but that condition isn’t a tube / Tubie.

It would annoy me too. My little boy has a syndrome and I am on lots of groups which are really helpful, but so many people refer to the children/ those diagnosed with the syndrome as 'my little----(syndrome)'. It annoys me as like you say that is not him. No more than if he had dry eczema or anything else.

@Esmeralda1988 My DD hates it. She has been in school 4 years and I don’t think any of her class mates or parents actually know what’s wrong with her 🙈

I work with many children who have a gastrostomy and jej tubes. It seems to make some of the parents feel like they are part of a community I think although makes criiiinge.

Who is calling your DD a tubie? And why are you unable to correct them?

My youngest had an NG tube for her first year. I always said tube fed / NG tube fed.

You could do with a bit of a harder shell.

If someone dealing with the same condition is talking to you, it's because they want to help you or they need your help, or they want to derive from the shared experience. Whatever language they use it comes from a good place.

If your child has a noticeable disability, they will hear far worse, not from a good place. These are the names we need to be teaching are children to deal with by ignoring, reporting or walking away.

By your reactions you can add to the list of things things that your child will find hurtful. By reclaiming the most obvious one it's an easy win coping strategy.

I get the difference, but it's an imposed one. Whatever the condition it it will impact every aspect of who your child is and how they live their life. There isn't a point where your child ends and the condition begins. Its intertwined.

I have 2 children who have feeding tubes and like you I don't like it op. They are not defined by it and in fact have much more serious issues going on.
One of my children also has epilepsy. I wouldn't dream of saying to other people I have an epileptic . I say I have a child with epilepsy . It is the same thing imo.

I have a child with aspergers. I would be, probably irrationally, pissed off of someone said 'BWW's for an aspie'.

For one thing, she isn't 'mine' she is very much her own person, and for another having aspergers does not define her.

I'm totally with you op. You don't have a 'tubie'. You have a fabulous child with all that goes with that.

i have never heard that term, I know a lot of tube fed children(now adults)
its like when people say they have an sn child for me.

Totally with you. And I also can’t stand the terms Preemie. And rainbow baby.

YANBU to not like it for your child, but let others do what might make a crap situation more bearable. I hate Aspies, Spiffys (spina bifida), boob monsters, rainbow babies and so on but it really doesn't have an effect on me so I keep schtum.

I get it OP. They are not “are”, they “have”

It’s reducing them to being defined by a condition, or a treatment.

Slightly different, we do use "is autistic" rather than "has autism" but that is because it's what the National Autistic Society's survey said that most autistic people prefer. It's specific to autism. In the absence of similar preferences expressed by people with these tubes, then person first language is the right default. And the best advice is always to listen to what the person themself prefers, or that person's parents if they can't.

That said it can be tricky to keep up with these things. Often people mean well but of course they know less than you about the area, and they can easily be put off trying. Correct them sure, but nicely.

I have club feet. A friend once joked and called me clubby- it hit me like a tonne of bricks. It’s a hidden disability and it is not my identity- but does hinder some things for me!

Clubby/ Tubie. Not kind.

I'm with you on this one. Dc16 has a mic-key feeding tube and he hates when he is labeled by it. None of his friends even know he has one as he's very private about it. To him it's a medical device that keeps him healthy and alive it does not define him. He also is kept alive by medication these do not define him either.

@Bubbletiers

I have club feet. A friend once joked and called me clubby- it hit me like a tonne of bricks. It’s a hidden disability and it is not my identity- but does hinder some things for me!

Clubby/ Tubie. Not kind.

What a twat. I hope she’s no longer a friend.

That sounds really annoying, like the most important thing about your child is his/her feeding tube. YANBU

Ds is 11, he will happily say he is a tubie.

He is happy with the fact his his tube fed. He knows why he is and is fantastic with it. I wouldn’t call anyone else a tubie unless they where happy with it but I will happily let DS decide how to refer to his medical conditions if it helps him own them.

Sorry just to confirm to the comment above about having a hard shell and those are in the same situation
More often than not it’s not another parent with a child who has a feeding tube it’s someone who has NOT.
Just to confirm that.
I don’t think it’s about having a hard shell, I don’t cry myself to sleep over it or anything but I raise my daughter to know who she is as a person not that she is a tube ... she is a human. She is super confident, makes friends easily but doesn’t think of her self as a tube.

@FlyingSuitcase yes I never fall out of someone about it I politely correct them and explain my reasons If they ask. I might get annoyed if the same person continued to do it.

Its an awful way to refer to a child. I think its slighly different for things like aspergers 'aspie' or preemie for premature baby but to call your child the name of the object? Its like calling somone a colly if they wear a colostomy bag , or glasses if they wear specs