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Original poster

Dealing with disfigurement in a child

49 replies

Bulletproofmum · 31/07/2014 09:30

My daughter was very badly burned when she was a toddler. She has 50 % scarring all over her body. I'm lucky to have her.

Her face, hands, legs, arms, tummy were particularly bad. Fortunately she still has her features and hair. She has just undergone some plastic surgery to bring the hairline forward, straighten fingers (the scarring distorts them), thin her ear (rugby players). Most invasive though is that she currently has a skin expander in her neck. This is now the size of a goose egg and growing to provide skin to remove scarring on her cheek.

She is 4 1/2 years old and for the first time beginning to become aware that she looks different. This morning she was saying to me that children are teasing her about her 'grinchy' hands and asking her about her neck and that she doesn't like it. In my local area we are known and she doesn't get noticed so often. We are going on holiday on Saturday (Cornwall) and we will be around lots of different children.

At the moment she is the most confident, strong and happy child you could meet. I am worrying that these new environments will start to erode her her self confidence and don't know how to give her the tools to deal with it.

I have looked at advice on the burns websites and changing faces etc.

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Original poster
Bulletproofmum · 31/07/2014 10:14

bump

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BrucieTheShark · 31/07/2014 10:25

Gosh this sounds so difficult for you both.

I don't have direct experience but didn't want you to go unanswered.

My son is severely disabled and it becomes more obvious in his behaviour as he gets older. However, he is not aware of people staring or commenting, so it's probably easier for us.

I do have to talk a lot with his sibling who is aware, and I guess we are just muddling it out as we go along.

We talk a lot about how everyone is different etc etc. We talk about how other people, especially children, don't understand about DS' challenges and what it is like for him.

Would it be useful to have a few phrases worked out for her to explain to other people/children. However I am always very clear to my DC that we have no need to explain ourselves and that others shouldn't expect it. But if we feel like educating those who are more ignorant that day, then we can!

Original poster
Bulletproofmum · 31/07/2014 10:35

Thanks for replying.

It is indeed difficult. I find the naive and open questions from other children easier to deal with than the discrete stares of adults. However children are more likely to ask DD directly what is wrong with her. She just says 'these are my burnies'. If they are persisting I will intervene and explain e.g. that the lump is growing some extra skin for her and what a brave little girl she is.

Recently I has child (about 12 and old enough to know better) that was following her around the swimming pool staring at her. He even tried to touch her lump.

Sometimes I draw a face on her lump and she tells people that she's growing an extra head :) . Probably not helpful but we both find it funny.

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Original poster
Bulletproofmum · 31/07/2014 10:36

She has two elder bothers (9 and 7) they are very protective of her and go to her if children are crowding. Its a double edged sword for them though as I think they must sometimes resent the extra attention she gets from everyone.

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BrucieTheShark · 31/07/2014 10:42

Lol at extra head, that is cool. She sounds excellent.

Yes, adults and older children are far worse than the innocent, inquisitive and accepting littlies. Sigh. I think our society is dead set on 'educating' acceptance of differences out of children. And it is very effective.

Anyway, it sounds like you are doing great. I find that a few hard stares or 'can I help you with anything?' (said in a faux kind, steely smile way) usually gets rid of the older children, who know damn well they shouldn't be following round or staring.

BrucieTheShark · 31/07/2014 10:44

Yy to older sibling(s) finding it tough. I try to make extra 1 to 1 time for sibling and give lots of attention. But there are times when I have to say to DS' sibling - look this is just the way things are I'm afraid. I don't like it any more than you do.

NigellasDealer · 31/07/2014 10:46

the worst thing i ever did about my dd's disfigurement was discuss it with her tbh and tell her that people might be nasty to her. if i could turn the clock back i would not do that.
as for nosey adults a hard stare suffices. when we were in Greece, I had to learn the Greek for 'dont you have a mirror'

Original poster
Bulletproofmum · 31/07/2014 10:58

Thanks. I have always encouraged her to think positively about her scars. Tell her they make her different, special and brave. However I also worry that I give her mixed messages: 'you are beautiful' but then having to explain why I am putting through a very invasive procedure to remove scarring. She once (whilst stroking my face) that her face isn't smooth like mine. I tell her we;re making her face smooth like mummy's (I don't point out that mine is old, pox marked and wrinkly!).

Nigella - I have always found it harder abroad with her or e.g. in London, where there are many travelers etc. It has really highlighted to me how discrete the British are as a society. She had to wear a balaclava for a year after the accident (and full body suit). I was shocked about how crass people could be.

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Original poster
Bulletproofmum · 31/07/2014 10:59

Nigella - thanks for that - I will be very careful not to tell her that people may be nasty. I need to talk to my mum because she goes on about it to me and I worry that she'll do the same with DD.

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aprilanne · 31/07/2014 11:09

bulletproofmum. i have a disabled child autistic and yes it can be hard when people stare.but just remind yourself as you say she is lucky to be here.i think the best thing you can do is just keep her confidence up .that she is a beautiful little girl .my friend from the carers group i attend .has a severly disabled child and she used to say to anyone staring .thankyou for admiring my beautiful little girl .(and she was ) that soon embarresed them to
stop staring .

Original poster
Bulletproofmum · 31/07/2014 11:15

I like the strategy of your friend - I will try that one :)

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Pancakeflipper · 31/07/2014 11:18

Hi Bulletproof

I don't have the level of scarring your daughter has. I do have a disfigured arm/shoulder that happened when I was months old.

My parents must have gone through awful guilt (100% not their fault). They did sometimes let me "wallow" talk through my upset and "its not fair". But often it was "it is you. It's not great but it's you and its not going to stop you do anything". Hospital visits until I was 18yrs old were not fun but my mother would let me take advantage of being out of school with a visit to the cafe or buy a book.

I used to make up stories like it was result of being attacked by a lion when I lived in a circus....

Beach holidays were quite hard or anytime arms exposed. I'd be remembered that I was not the same. It's the strangers factor. Swimming was ok with people who knew me.
My parents sometimes removed me from the "urghssss" when it was relentless. Don't know if that's right or wrong.

Some days it will be be easier for her and you. Some days it will hurt. You will find your way through and best methods/tactics will be found.

Tbh - it's hard but you won't be defeated. With a brilliant mum and brothers your daughter will cope well.

I hope you daughter's surgerical ops go fantastically well. And I hope the holidays go well for you all.

saintlyjimjams · 31/07/2014 11:22

When people start staring at ds1 (severely autistic) I tell ds2 & ds3 that they need to do a dance for everyone watching is. If they're not there I tell people not to stare.

I I do think children are very accepting - it's pre-teens up that can be ghastly - so hopefully you'll have a good h

saintlyjimjams · 31/07/2014 11:22

Holiday!

NigellasDealer · 31/07/2014 11:46

it sounds as though you are both doing really well Flowers

NigellasDealer · 31/07/2014 11:47

infant school was fine, years 3 to 6 were vile and secondary has also been fine.

Deverethemuzzler · 31/07/2014 11:54

Hi op
Do you know about Changing Faces? I have Lund them to be an excellent organisation and they publish guides on dealing with this sort of issue.

My DS had v severe eczema. We are lucky because it has improved. Throughout his early childhood we had to cope with a lot of rudeness and even hostility because of his appearance.

I wish you and your little one all the best Flowers

Original poster
Bulletproofmum · 31/07/2014 12:09

Pancake - thank you for sharing your experiences.

I and exDH (the accident was too much for our marriage) hav different approaches. I make no attempt to hide her scars. I want her to grow up feeling confident and happy about who she is. However exDH, I notice always dreses her in leggings or tights regardless of the weather (her legs are very badly scarred). If I had put her hair up he would put it down again to cover her face (her hairline is about 2 inches back from where it should be, although her recent op has improved this). He even bought her a scarf to cover her lump. I think her scars are a constant reminder for him and his guilt (it was an accident but one he had responsibility for, he was also injured). I need to talk to him about this

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Original poster
Bulletproofmum · 31/07/2014 12:10

Devere - I do know changing faces. I will have a look again at their literature. I've not been there for a while

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Pancakeflipper · 31/07/2014 12:24

Did you post on here after the accident? No need to answer - but if so I remember you well, and it lovely to hear about your DD.

I think it's so hard an issue as there's no right or wrong and its so emotive. Changing Faces sounds a great suggestion.

I think having confidence about your scars does help to get through the "interest" of others.

Pancakeflipper · 31/07/2014 12:28

You might get to the stage when she is older when you say "is it a hair up day? Or not?" "A scarf day or not?" Because some days you can take on the world. And other days you cannot.

Sorry thread hogging.

Original poster
Bulletproofmum · 31/07/2014 13:52

Yes I did post on here after the accident. Its nice that you remembered me :). The theme of that thread (3 years ago) was whether my marriage would survive - sadly it didn't but we had our problems before and I'm happier now.

You're right that eventually she will choose herself how much she chooses to show. I hope she'll have the confidence to be her lovely self as she is now. But fear she will be come to be self conscious and I would hate that. She has oodles of confidence now.

I try to let her deal with the questions herself and only intervene if I notice someone being persistent.

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BrucieTheShark · 31/07/2014 18:41

I remember you too bulletproof. So pleased to hear how well she is doing :)

RitzyTurnip · 31/07/2014 18:56

I also remember you Bulletproof

Lovely to hear about your dd Smile

Veins · 31/07/2014 18:57

I remember you Bulletproof. It's lovely to read she's a strong, confident child and a credit to you that she is. I think using humour to combat any nasty comments is an excellent way to help her deflect. I knew someone who was involved in a terrible accident and had a spider like scar on her forehead, she was pretty awe inspiring in her recovery on the whole but also had so many great come backs to stop the bullies. I'm not suggesting this will be easy due to your DD's age but I think it's a good way to go.