How to handle other children commenting on my DS birth defect

[Mrsalwaysworried]

I have a DS (5) with a facial birth defect. I don't want to say what it is but It's fairly obvious when you're up close and it effects his quality of life to a certain extent.
We've always been quite honest with him about it in an age appropriate way and tell him he is beautiful all the time (which he is!) but he's getting to an age where other children are starting to comment. Last night a little boy in the park said to him "your face is funny". My son just ignored this but later told me it made him feel sad.
I just don't know the best way to deal with this and what to say to my son, obviously I reiterate that he is beautiful and that everyone is different, I tell him that he is unique and a wonderfully special person and shower him with love, but there is also a fine line where you don't want to make too much of a big thing of it in case it makes him too self conscious.
This is an absolute minefield, does anyone have any tips on how to deal with this? Thanks so much.

Hi there. Both of my children had cleft lip and palate (now adults). Would my experience of dealing with that help?

@CormoranStrike absolutely it would, thanks so much.

No problem. You can also private message me if you have questions you don’t want to share on here.

My son never got much negativity, or not that he shared with me. His scarring was much slighter, so we and he got off very easily.

M daughter had a bilateral cleft, complete with missing teeth etc, so it was much more noticeable for much longer.

When she was very small children tended to comment very nicely if they commented at all - they were just curious.

As she got older she became much more aware of people staring, and occasionally commenting. We dealt with it in two ways - encouraging her to comment back if she felt strong enough. Phrases like ‘it’s not funny, it’s just.a scar from an operation’, or ‘it’s just a difference, like you having a different hair colour’.

we made a big thing of the operation leaving a scar, just like all operations do, rather than the cleft itself continuing to be an existent thing.

We were also honest with her and ourselves - explaining that we all stare, but as we get older we learn manners. I clearly remember talking to her about whether she would stare and ask questions if someone had a plaster cast on their leg and crutches, and she admitted she would. We explained that curiosity, while tiresome, is not rude.

Teenage years did involve some bullying and self consciousness, but teens can be horrible and if they hadn’t latched on to her scars they may well have picked on her glasses, frizzy hair etc.

We tried to normalise other people’s reactions, while not condoning them. Ie not making it all cleft centred.

It sounds to me like you are already doing an amazing job, getting a balance between him knowing he's loved and beautiful and also not making it into a massive big deal either, it must be really tricky.

When my son was 5 we went to a party where the birthday girl had a very noticeable birthmark on her face. He knew this girl from nursery and had played with her loads of times, but chose that day to ask me right in front of her 'what's that thing on her face, mummy?' Before I could even answer, the girl confidently replied 'It's just a birthmark, silly'. It was the perfect response to the situation, it shut my son up from making any more comments & they carried on playing and then later that night I had a chat with him too. That girl totally put any answer I would have given my son to shame, her confidence and simplicity at explaining it shone through even though she was only 5.

Perhaps you could find a quiet time now your child is a bit older to explain about other people's reactions and give him a few sentences he could use to deal with questions or stares. Perhaps show him some photos of other children or grown ups who have birthmarks etc so he doesn't feel like it's just him?

Hopefully some other parents reply to your thread with some good advice, just thought I'd share our experience from 'the other side' in case it helped.

Thanks for this @CormoranStrike , it's really helpful to hear from someone who's dealt with these issues all the way through to adulthood.

The curiosity thing in particular is something I hadn't thought of, it's true- i'm sure my son would ask questions of a plaster cast too.

I'm definitely trying to normalise reactions, it's tough though isn't it- i feel like there should be some sort of counselling service or guidance for parents on how to deal with this element. Sound like you handled it brilliantly though.

My daughter did get some minor help along the way - someone was doing their PHD into the long term affects of facial disfigurement and she was picked for surveying.

that meant she had - I think - two sessions discussing possible outcomes and situations.

if you are under the contributing cate of an oral maxillofacial team they may well have an expert you can talk to.

and organisations like Changing Faces and CLAPA can also help.

Thanks @SouthOfFrance, thats really kind of you.
She sounds great, what a fab response. Kids don't mean any harm when they ask, they are just naturally curious and have no filter at this age!
I think I will work on some concise comebacks with him for when this happens again.

*argh typos!

@Mrsalwaysworried if you fancy a private chat on DM (especially if your son had a cleft) I would be happy to chat.

Would agree with checking out Changing Faces, lots of info and support

I posted something similar a few years ago as my DD had a very noticeable strawberry birthmark on her forehead. It's a straight line, so people regularly commented thinking it was an injury. Lots of little children would tell me that she had hurt her head, which was quite sweet. It has now mostly been covered by her hair and is beginning to fade in redness but at around 2.5y-3.5y comments were almost daily and it did get exhausting.

I think you're dealing with it really well. I just tell my children each has special markers that make them totally unique (all 3 of my children have some kind of birthmark). I try to be body positive whenever I can although I'm not always great at it. I also try to get them not be factual but low key about other people's bodies when they have questions. Lots of 'everybody has a different body, that's just how that person's body looks. Ok, which bread should we buy?' My DD in particular is bad for very VERY loud questions/comments on others appearance 🤦🏻‍♀️

Great advice on here. Maybe you could get him to pull a funny face and say 'you're right!'. Being able to not take yourself too seriously is important and humour can be a helpful way to deflect thoughtless comments. The other good option is for him to be able to explain simply what it is - when kids understand they often move on quickly.

I would be a little bit careful telling him too often that he is beautiful - you don't want him to think that this is what people are or should be valued for. Talk up his fantastic personality traits too.

Also you're both bound to get it wrong/handle things badly at some point so don't give yourself a hard time if that happens. I know this from having one with ASD!

I would agree with helping your child to have a response ready and talking to them about how we are all curious about each other. Comments to my child made them feel self-conscious about their difference but when we talked, they realised that they were equally curious about things that made people different to them! It helped them to realise that other children weren’t necessarily being mean or disliking them.

Thanks everyone for taking the time to reply. it's so helpful to hear from people who have been through similar. It feels quite isolating when your child is being singled out for something like this, so it's very nice to hear from you all.

@CormoranStrike he doesn't have a cleft, but it something equally obvious facially. Thank you for your support.

Is this something that you are likely to get corrected in the future?

My daughter has a facial "feature" - very visible. Other children would ask about it and point it out

I wasn't too fussed about getting it corrected/removed as I didn't want her to get older and think we somehow loved her less because of it

However recently she is of an age where she notices it more and so we have now agreed to get it removed

@toooldtodate no, it's not something that can be corrected. He will have it for life.
It's actually a quite obvious eye condition and I think there will be ways of disguising it when he get's older, but I agree, when he's old enough he can decide for himself whether he wants to go down that route.