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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

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Original poster

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

116 replies

Iamfudgingfreezing · 09/02/2021 15:22

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 ?

OP posts:

MintyMabel · 09/02/2021 20:33

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Blueeyedgirl21 · 09/02/2021 21:24

I know someone who does this, she has an Instagram about her child’s condition to raise awareness but it’s become more of a personal blog. The only thing that annoys me is that she is from a small northern town but says ‘Toobie’ instead of ‘Choobie’ which I can’t get past

WaltzesWithSnobs · 09/02/2021 21:33

It doesn't bother me what other people do but I wouldn't do this myself.

For example, my DD was born with a cleft lip and I am in a Facebook group for people (or parents of people) with clefts. A lot of people refer to their child as their 'cleftie'. I don't. Her cleft doesn't define her. It's one (small) part of her out of many, many parts.

posit · 09/02/2021 21:47

@bigbluebus

I had a DD who was tube fed for 9 years before she sadly died 4 years ago and I can honestly say I have never heard anyone use the expression/description 'tubie'. Is this a relatively new word people have invented? Everyone i ever encountered just said their DC was tube/PEG fed. They never used the tube as a descriptor.

@bigbluebus

I concur, 10 yrs in and never heard this word.

posit · 09/02/2021 21:50

Also "tube" is a well known glaswegian insult of old so I would be mightily intolerant for that reason as well as everything else mentioned by OP.

MisfitRightIn · 09/02/2021 21:58

I’d cringe, and absolutely hate this, to be honest. I have 2 sons with autism, and I don’t like people calling them Autistic, there’s a lot more to them than the autism diagnosis.

Flapjak · 09/02/2021 22:01

I wonder if these 'names' are more for the benefit of the parent rather than the child...

Original poster

Iamfudgingfreezing · 09/02/2021 22:13

@Flapjak yes and also people who say that them using the terminology isn’t effecting anyone else etc is only true if the child them self has decided it without influence.
If you call your child a Tubie from 2 years old etc of course they are going to grow up similar.
I just think from my perspective which of course Is only an opinion and not gospel.
I have raised my child not to really focus on her tubes / conditions. She knows about them she is very clued up and confident about them but she doesn’t speak about them as a general conversation at ballet or school etc
She will respond if a friend asks “ what’s that for ? “ with a very simple explanation of I eat differently because my belly doesn’t like food “
Mind you I don’t really get involved with a lot of the things like baking a birthday cake and having a party for anniversary of heart surgery etc
Again she knows she has heart surgery and what she has been through but we don’t make it the main thing in her life. She is also an incredible artist and musician. She most likely won’t reach adult hood and so I want her to love the aspects of her life as freely as possible without the constant reminders.
She isn’t a Tubie, she is a beautiful, stunning and funny individual who has a feeding tube due to a condition that effects many organs.

OP posts:

posit · 09/02/2021 22:23

Well you have several parents on this thread saying they find it dehumanising and wouldn't stand for their dc being adressed that way, (whilst also of course clearly stating that if that is how one family copes then that's up to them).

We all manage however we can.

I would not participate in an online group where this was commonplace but everyone else is not me.

But then I am the sort of parent who annoys random strangers who feel it appropriate to ask "what is up" with my (happy getting on with life) clearly physically disabled dc with a shrug and deadpan "she likes dinosaurs and cake". I actively refuse societal efforts to box up and label my children every day.

We do have a bear kitted out with the same medical devices and this bear is shown to other children/relatives etc who express any curiosity. The gastrostomy is explained in simple matter of fact terms and that seems to help it become a non topic - just part of life. The bear was got pre-surgery to help assuage fears and educate in advance because dd was quite little at the time but I feel it is important for the child to have autonomy and knowledge about their own body. Self esteem and resilience are vital early lessons for children dealing with invasive medical procedures and everything that goes with that.

posit · 09/02/2021 22:25

xpost OP!

Sirzy · 10/02/2021 03:31

For ds I think it actually helps with the sense of belonging. “I am a tubie” is like “I am a scout” or “I am a runner” and it’s about being part of a wider group so not feeling alone.

Sadly in a lot of way life for ds is dictated by his complex needs, he can’t go anywhere where there isn’t someone trained on the emergency protocol and who has the bag of medication which has to go everywhere with him for example.

Having his own voice in things is important for him, he hates it when doctors talk to me but ignore him for example. If using words like tubie help him feel he belongs in a world where too often he will feel he doesn’t then I don’t see an issue.

Toddlerteaplease · 10/02/2021 03:34

Yuk. I am a paediatric nurse and have fortunately never heard that term used. G- tune makes my teeth itch! But that is just terrible. Why let the tube define them?

ColintheCrow · 10/02/2021 03:46

My daughter was ng and then peg fed her whole life, I would have been furious. My ASD son... he's not an Aspie or whatever shit term.

SinkGirl · 10/02/2021 10:31

Most people want to belong, especially when going through something challenging. As others have said, it doesn’t mean “my child is their feeding tube”, it means “my child is tube fed”. Some parents will find this sort of language and community useful and others won’t.

Language around disabilities is a minefield anyway since there are so many views on what’s right. Is someone autistic, or do they have autism? The important thing is using the language that they are comfortable with, not forcing language on others and respecting other people’s right to use the language they are comfortable with.

DT2 has a visual impairment and lots of parents in support groups call their children ONHers / SODers. It doesn’t mean that’s the only thing about them, it’s because they want to feel part of a community dealing with the same things. I don’t use it personally but if people want to then it’s up to them surely.

Sirzy · 10/02/2021 10:44

Exactly sinkgirl

Original poster

Iamfudgingfreezing · 10/02/2021 12:39

I have never told anyone what to call there child only what not to call mine 🙈

OP posts:

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