How do you deal with strangers commenting on your child's visible health issues?

[katiegolightly]

Our 7 week old baby was diagnosed with a hearing loss in the newborn screening program and already wears hearing aids. Obviously this comes with a lot of emotions and lots to deal with, which we are working through.

A few weeks in to her having the hearing aids I'm already frustrated at having to deal with stranger's well meaning but often just nosy, insensitive or poorly judged comments. Nobody has been nasty and I'm sure everyone asks with the kindest intentions but I'm struggling to find the party line when people constantly ask questions or just say 'oh what a shame' - no, it's not a shame, she is lucky to have been diagnosed early and will have a wonderful and exciting life.

I don't know how to handle strangers or cut the questions short without being rude (or being seen to be rude). Which I don't want to be. I need to teach her as she gets older how she can respond to questions EVERY DAY. How did you deal with unwanted comments and questions about your baby or child's health or appearance?

depends on my mood

if im calm and and patient i used to respond to my eldests wet wraps for eczema remarks with patient explainations

if caught me on a bad day sarcasm flows with quickest line stopp them being
"i set fire to things that annoy me"

Well, I am not sure if I'm qualified to answer this, as it's my sons behaviour that is noticeable different rather than his appearance, but when people say things like "oh poor little boy" I grin and say he's perfectly happy.

Could you get her some little bibs made to wear when out. Something like "I'm a little bit deaf but a lot cute" Or "i can't hear very well but love smiles"

My slogans are a bit rubbish, but I'm sure you could come up with something that could inform passers by without you having to explain all the time.

I am actually quite snippy when complete strangers on the bus comment or offer their uninformed diagnosis. I just say "yes, she has hasn't she" quite abruptly, then I don't engage in followup conversation. Friends and family, I try to be more patient.

Still, I am gobsmacked what people come out with. Gobsmacked. I only assume some of them must have a condition which impairs their social skills, which is why I don't blow a fuse at them!

How about 'thanks for your concern / interest, but I don't like to discuss it'.

How can they need to ask questions - the hearing aids are obviously to aid her hearing - what else is there to say?

Mine depends on the day. I have to walk with a walking stick due to nerve damage and people ask why a gazillion times a day.

Sometimes I answer "bad legs" (tells them nothing that wasn't obvious anyway), sometimes I answer "nerve damage". If they're really rude about it I either say "I don't think you need to know" or "Why are you asking?" (sometimes this riles people because they realise how nosy they're doing). Occaisonally to amuse myself I explain every tiny detail starting at the very beginning of my life and progressing reallllly slowly, about ten minutes in I pause and say "Would you like me to continue?" They never do. Ha.

My favourite one is my t-shirt that reads "Don't even go there". :D

PS. I'm sorry your little one struggles to hear. I send lots of love xxx

Why not say what you said in your post? If someone says what a shame just do a big smile and say 'no, she's very lucky to have been diagnosed so early and won't miss out on anything now!' :-)

I agree with catsu exactly what you said in your OP

I think what you said in your OP is the right approach but there are going to be days when you are fed up with people being, well, people and you will snap, but dont be too hard on yourself.

Cant really help with what to advise your DD to say when older, but she will learn from your example, as with most things.

My DD has 'invisible' illness and we get 'o - but she seems fine' or similar, and when she does struggle it is hard to get people to realise she needs help/support because they dont realise and/or think she is playing on it (the SENCO at her high school said ' some of them use it as an excuse to get out of things but Im sure your DD wouldnt' )

It not going to be easy but it sounds like you have the strength to deal with it and that your DD will learn this from you. ( or if you prefer! )

depends on the day. dd's is very visible - wheelchair, tubes etc. Sometimes I ignore it, others I answer back.

Thank you everyone, your ideas really help. Like we all do, I want to be a wonderful mum and lead by a 'balanced and wise 'example but I guess as many of you say the days of sarky or snappy comments now and again will be inevitable .

VoldemortsNipple You know it is really tempting to get a bib saying 'I'm deaf, but you're ugly (and I have hearing aids)' but that's my evil streak coming out lol!

I think the comment that has baffled me the most is 'is it going to get better?' now, maybe it's just me but I thought hearing loss that required hearing aids is fairly obviously not going to get better. But maybe that's not obvious. IMHO It's like asking a blind person if they are going to see one day. It's only going to make them feel rubbish that you asked.

One day at a time I guess until we find what that stock reply is going to be. Thank you for all your lovely comments & wishes.

"Like we all do, I want to be a wonderful mum and lead by a 'balanced and wise 'example but I guess as many of you say the days of sarky or snappy comments now and again will be inevitable ."

I don't think there's any obligation for you, or her eventually, to be constantly 'balanced and wise'. People with disabilities shouldn't have to be living public information services, unless at that moment they want to be. Whilst it's great to model some amicable responses, it's also good to teach her that she doesn't have to respond to unreasonable personal questions, or be polite to really rude people.

Basically, whatever responses work best for you are fine; sometimes that will be a polite and friendly answer, but don't feel guilty if sometimes it's not.

Take a deep breath and count to 10!

Our dd has a port wine stain birthmark on her face and we have had various comments over the years ranging from "you want to put sun cream on that child, she's got sunburn" to "did you drink red wine when you were pregnant"!

Most common though is "what's wrong with her" - which riles me the most - there is nothing "wrong"! Rehearse some standard responses to the most common comments and you will soon find that they don't get to you as much. It will also give your dd a positive experience as she will see and hear you responding to these rude comments in a calm way, which will give her the skills/ confidence to react in the same way when she is older.

Some comments / questions may warrant the reply 'did you mean to say that out loud?

My son has down syndrome and today somebody told me that all children with DS have other health issues. What am I meant to say to that other than the obvious 'no they don't' (because not all do)?

This same person told me on either the first or second time that she met my son, that she and her husband would terminate if they knew they were having a child with down syndrome. That's totally their business and I have no problem with it but I did find it very strange / awkward that she told me this at that time under the circumstances.

Nowt so strange as folk.

My DD isn't disabled but has an obvious, large strawberry birthmark on her face. The comments we get are usually along the lines of 'what's that on her face?' and when we say it's a birthmark we then get 'oh, will it go?'. Sometimes we get several a day. DD is 13 months.

It gets so bloody tedious. Said to my DP a while back that I have no idea how parents of children with more serious health issues or deformities deal with the daily rubbish spouted at them.

I honestly can't imagine ever saying anything so downright rude to someone. I met a lovely father on a bus a few weeks ago, he had a baby daughter with what seemed to be a tumour or swelling in her mouth pushing her top lip outwards. God only knows what crap he got from people - he seemed relieved that I didn't say anything!

Hi katiegolikely,

Take some time to check out the 'changing faces' website. It's a fantastic website packed with advice on what it's like to live with, or be the parent or teacher of someone with a visible difference.

It has all kinds of advice on how to respond to people's questions, both as a parent and for the person with the difference, there are lots of different suggestions based on the age of the person.

We recommend this website a lot to the patients at my hospital who have suffered from major burns.

Good luck, you'll do fine

C&C xoxo