How to respond to "What's wrong with her?"

[SewhereIam]

My 3 year old has been wearing a patch since February as she has a lazy eye. The eyelid covers her pupil and the majority of her iris, and so to look out of that eye she has to tilt her head back through 90 degrees to be able to do so when she is patched, as she can't use the dominant eye.

Now we are out and about again, each outing involves both children and adults asking quite abruptly "what is wrong with her?" (usually involving pointing at dd). At first she answered herself, despite not being addressed by the person asking, but now she just hides behind me and asks to take her patch off. Even with the patch off, as there is such a disparity between her eyelids, people still ask.

What is the best way to reply to questions like this? If the question is asked with kindness, then it isn't a problem, it is when it is entitled and rude it is so upsetting for dd and for me. I want to empower her, I don't want her to feel that there is something "wrong" with her. There is nothing wrong with her; she is a gentle, clever, loving little girl.

Her eyesight is so poor in the non-patched eye that we really need to see if patching helps, as she needs the best chance she can have to improve the sight, as after the age of 7 there is nothing we can do. She will have the eyelid lifted when she is older, no matter what happens to the sight.

"I was just going to ask you the same thing."

I started telling what happened but you know it's boring over and over to people who don't really care.

When I decided to tell the bollocks it was awesome.

They are being very rude. Taking time to explain if you want is fine but it will encourage them surely. To think asking is fine.

Actually I did it recently. Just remembered. I happened to have a couple of big bruises near and so explained at length where I got them.

Rude sod didn't take the hint and said not those, that...

Is it sad?

You don't know how old he is. What their relationship is. How his autism affects him. Whether they're laughing about it after etc.

I think that people who deal with this stuff for themselves are often pretty pragmatic and blunt.

I think that when he's older if he gets questions then looking someone in the eye with a direct look and saying I'm broken would make them feel really uncomfortable and that would feel quite good.

Because these questions are rude, presumptuous, invasive and boring.

That's my take.

I agree the way these questions are phrased are ignorant. However, I cannot despise ignorance very much personally as all of us are ignorant in one way or another. If we do not know it, even moreso!

I have children with (obvious) disabilities, and I try to answer the question honestly while teaching - as I would a toddler(!) how to phrase it better.

"It's not very nice to say there's something wrong with someone. That can really hurt peoples' feelings. If you mean - why does she wear a patch? It's to help her eye get stronger."

I completely understand that this gets wearing for parents (it does for me) and obviously you're not obliged to do anything at all. But I think often the hostile type of comebacks just inflict a fresh pain on another human being, and for no good outcome.

I dont think anyone who starts off asking ignorant questions so blatantly will learn to be less ignorant when verbally 'slapped', they are more likely to become more hateful. Lose, lose situation.

DS had an eye patch until he was seven, it definitely improved his vision in the lazy eye.

My Optician, suggested letting him play video games whilst he was wearing his patch, a fast moving game is a really good workout for eyes, much better than just reading etc. Of course DS was very happy to be prescribed an hour of games every day.

He is now 24 and I don’t think he can even remember wearing an eye patch. Hopefully your DD will be the same.

And he is really good at video games

Tinty

When DS was little I was on my beam end with people asking what was "wrong" with him.

He has cerebal palsy and at the time had much bigger mobility issues than he has now (at age 30). We were at HOSPITAL at the paeds clinic when a receptionist asked what was "wrong" with him. I said "A hell of a lot less than is wrong with you, obviously". Sadly she was too fucking thick to understand what I meant but her boss understood when I made the complaint.....

What is the fresh pain inflicted on the person asking? I mean if it's fresh there was previous?

I don't really understand.

I have young adults who have ASD plus other letters.

I tell them, we are all 100% who we are supposed to be.
That they shouldn’t accept other people opinions of how they should be.
Never to allow others to diminish their 100% with narrow minded bigotry.
We have some eye patch experience here, we said we were identifying as pirates.
The Tracheostomy scar was obviously a shark attack.
Children are ripe for learning, so we teach, adults are also learning.

I would just reply ‘That’s rude’, but then I can be pretty blunt and have no patience for people being horrible - whether or not they mean to be.

I say this as someone who has been asked if I’m pregnant or worse congratulated on my ‘pregnancy’ many times by morons. I now have no tolerance for people commenting on other people’s bodies. It is forever upsetting to be criticised by people (even if they think they’re being nice or, as in your daughter’s case, curious). I’m a pretty confident person but people saying things like that makes me feel very down about myself and paranoid about my body. I used to be nice about it but I’ve now decided that adults should engage brain before speaking.

This is my long-winded way of saying there’s no need to be nice to the people asking in case they feel bad. I view correcting them as a public service on behalf of the next people they would humiliate if they don’t learn.

I am constantly amazed at the way nowadays people to whom one has not been introduced and whom one would not wish to know socially in a month of sundays feel entitled to ask such rude impertinent questions of complete strangers.

I have a tongue like a lash and after many years working in education have perfected the art of the cold and dismissive tone of voice and the look which implies the questioner is something I just scraped off my shoe. There are times when I quite enjoy putting people back into their little box.

Usually the cold superior stare suffices.

It's not new I was getting asked by all and sundry in the 80s.

I just simply explain at an age appropriate level.

You absolutely don't owe anyone private medical information about the health of your child, and it will be empowering for your daughter to have that shown to her as well. It's really not your story to tell people either, it is your daughter's personal information and it doesn't need to be shared with anyone. Unfortunately, this is an issue that lots of disabled people face, myself included. Some people think they have a right to ask what is wrong with you, why are you using a wheelchair, walking stick, etc. It's a really personal question and it's not as if they are asking because they want to help, they are just being rude bastards. I refuse to play along anymore. Just practice saying "that's a really personal question", and walk away. Teach your daughter that she doesn't have to share her personal information with people just because she has been asked a question. Nina Tame is a great account to follow on Instagram and she talks a lot about empowering her child by not answering questions about his disability if he doesn't want to, and also as a parent, recognising that it's not your place to share that information either. You may find the account helpful too.

My dd used to tell everyone that she was a pirate princess.
That would be my answer. You don’t owe anyone anything.

@picklemewalnuts

'She has a poorly eye' Or 'She's practicing to be a pirate' 'She went too fast on the swings and it fell out' 'She gave it to a friend' It came out when she sneezed and we couldn't find it. She's waiting for a new one

If you are relaxed and light hearted with your answers, she will be too.

Honestly, people can be insensitive. However, the more at ease you are, the more comfortable she will be.

Love this.

@MrBond

For adults; Mumsnet classic response, 'Did you mean to be so rude?'

Or, 'Nothing, why do you ask?'

Or, 'I beg your pardon?'

Or, blatantly ignoring them, say loudly to DD- 'Dont mind them, sweetie, they've left their manners at home today but there's nothing wrong with YOU!' and then give them the glare.

Or, ODFOD

For kids, either,

She's giving her eye a workout.

Or, she's a pirate today.

FWIW, my DSis had a patch growing up.

Sorry didn’t mean to love previous quote. This is the one I meant to quote. Love this.

Personally, and this is just my opinion. Responding with don't be rude etc would not be something I'd be comfy doing. I'd also worry that they might bite back and it ends up in a row/ or someone being really horrible to you with your kid looking on.

I do understand that some people are more direct than me.

@RunningFromInsanity

“What’s wrong with her?”

Reply- “What’s wrong with you?”

I love this. Rude bastards.

"There's nothing wrong with her at all. Did nobody ever teach you not to make personal remarks? I worry about my DD, but my biggest worry is she'll end up like you. You've got bigger problems than she has."

Or a snappier version. You need something that rolls off the tongue.

"Her issues aren't as big as yours. Watch what you say." Something like that. Don't let it go though.

I can see it in my 3 year old's eyes when she's about to make a personal remark and I try to nip it in the bud.

@Berightback

I have a lazy eye. Had an op when younger for squint & wore patches etc. Apparently I only use one eye to see but it’s never caused me any problems. I was told if my good eye could no longer be used my brain would enable me to use the lazy eye eventually. Not sure if this is true?

DCs eye didn’t shut down like mine & they’ve experienced no end of vision problems as they received a slightly different images from each eye and would have been far better off to just use one eye.

Hope it works out for your dad

I was born with excellent vision in one eye, and rubbish vision in the other. Had surgery as a child, attended clinics etc. The good eye did most of the seeing, the other one just contributed slightly.

In my 50's I developed a fairly rare eye condition in my good eye. I can still see but can't read a newspaper, even with glasses. It happened very slowly, and as it did my rubbish eye took over.

I always thought I'd be totally screwed if anything happened to my good eye but here I am, able to do everything I could before. With glasses I can still drive, quite legally.

The human brain is amazing.

Some people are so mean.

My nephew use to wear a patch for about a year my sister brought him all different styles one day he would have a pirate another day dinosaur etc depending on his clothes he would match.

One day a little s**t of a kid was picking on him the entire time he was at the park after my nephew trying to ignore the mean comments my nephew turned to him and said at the top of his voice only the cool kid's eye's can match their clothes so I'm the coolest pirate arrhhhh. The boy's mum apologised to my sister and the lady was so embarrassed everyone looking at them that they left.

He also had a patch birthday party everyone had to wear patch's, pin the patch on the donky instead of the tail, they made it a fun thing for him to wear not something he would hate and take it off.

I'd give as much of a non-answer as possible, delivered with a smile. For no other reason than it's none of their business.

Eg "she has a problem with her eye", "it's not contagious", " it's nothing you need to be concerned about".

If that doesn't work, stop smiling and stare them down before ignoring their question and changing the subject.

If they're still being disrespectful, tell them they're being rude and have no right to the details of your daughter's health, then walk away. Rude people don't deserve your time or politeness.

My 12 year old is an ambulatory wheelchair user and he gets this a lot. It makes him not want to use his wheelchair and just walk until he collapses instead.

My 7 year old was born with a cleft lip and hydrocephalus and we have had some really awful comments and some really nice ones. I did laugh one time though when he was 7 months old. A little girl came up to us and I thought she was going to ask about his lip or his head. Instead she asked me why he was wearing a babygrow during the day . My first was in tiny dungarees and booties that looked like trainers from very young but as he was my 4th I kept him in babygrows most of the time for as long as I could! We have a book called what happened to you which my 7 year old loves.