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Raising a child who looks different

(108 Posts)
Celestia26 Sat 22-Sep-18 19:08:59

Difficult subject, but something I'm really struggling with at the moment.

My daughter (age 3) was born with a congenital genetic facial condition. It affects her face, throat and airways and pretty much since she was born has been having surgery and therapy to help correct and deal with it.

Her face is very obviously not growing correctly. One side is fine, the other side is smaller, misshapen and stunted, and it's getting more obvious as she gets older.

Her doctors have advised that she will have the majority of her corrective surgery once she is 18, meaning she will spend most of her adolescence looking quite obviously different from her peers.

This condition was passed down to her through me, from my dad, who got the gene from my Nana. Its very obviously a genetic problem, and the guilt I feel in her suffering due to me would be another thread entirely.

I didn't receive corrective surgery until I was 19, and by that point, my social relationships were non existent and I had no confidence. I was bullied horrifically by both children and adults, and had panic attacks from the age of 10.

I am desperate for my daughter not to go through this. When my husband and I discussed having children, my only wish was for my children not to suffer this. But it's happened and we're dealing with it as best we can.

I love my daughter fiercely and I think she is beautiful exactly as she is. However, I'm under no illusion that she will have it easy as she gets older.

I'm asking for advice really. What can I do to help her deal with the difficulties she has ahead?

We are determined to bring her up to be as confident and happy as possible. We have started a savings account in case we need to pay for private surgery. We have also agreed that if she needs to be homeschooled then we will do it.

Is anyone dealing with or gone through something similar?

3littlebadgers Sat 22-Sep-18 19:15:35

I didn't want to read and run. I have no personal experience but one of my pupils had a large facial birthmark that caused her much distress from an early age. We used lots of positive language saying how specail it made her and how she is the most perfect her there is. it helped s little. As she gets older will it have the same effect I'm not sure but I'd like to think so. She is perfect as she is.

hidinginthenightgarden Sat 22-Sep-18 19:16:16

Honestly, I imagine people are a lot more open minded than they were when you were a child. Surround her by people who show her she is beautiful. Make her feel gorgeous all the time. There are probably books that explain that all people are different. I know that adopted children have stories read to their peers about how some children come from different families etc. Maybe see if they have one for people with disabilities of differences.

Acopyofacopy Sat 22-Sep-18 19:20:33

Hello OP, I have no personal experience but I am a secondary school teacher.
I know that teenagers want nothing more than to fit in and be “normal”. My school is ok, but anybody different would definitely get the “you’re a freak” treatment from some idiot.

Primary school kids might be a little easier in general, but I would expect insensitive comments from parents.

My advice would be to work on your dd’s self esteem and resilience as much as you can. She is obviously wonderful as she is, and has a great mum behind her.

Reading Wonder could help as a class or even whole school reading book once dd is older.

blueskiesandforests Sat 22-Sep-18 19:22:42

Bit of a cliche but read her Wonder when she's old enough. Look for role models in the media and real life. We've just watched a series of Amazing Race Canada with a contestant with facial disfigurement due to cancer treatment for a cranial cancer age 3.

flowers It's not going to be easy, but you've gone through it yourself so you are the greatest expert, that's a big deal. Lots of positive role models and affirmation and love, but also sincere acknowledgement of how she feels, and always letting her express herself no matter how hard it is to hear her.

Also, of course, she has you as the ultimate role model of someone who's come through this.

All the best wineflowers

bionicnemonic Sat 22-Sep-18 19:26:34

I think there is a book called Wonder which may give some angle but I have not read it myself.
There was a very touching film a few years ago called Mask about a boy which may again illustrate ways to handle any hurtful comments
en.m.wikipedia.org/wiki/Mask_(film)

blueskiesandforests Sat 22-Sep-18 19:33:18

DD and I read Wonder. Suitable for age. 9+ I'd say. So not yet presumably. It's a very good book though, also made into a film.

elliejjtiny Sat 22-Sep-18 19:33:45

I understand. My 5 year old was born with a severe cleft lip and palate and hydrocephalus. He's had lots of operations and speech therapy but he still looks and sounds different. I think he's gorgeous but I know a lot of people would disagree. He has a big head, squashed looking nose and his smile is wonky because his muscles in his lip don't work together properly. His speech is difficult to understand and he struggles with swallowing so he eats quite messily and often dribbles. He also has learning difficulties.

Mumof1andacat Sat 22-Sep-18 19:36:42

Does your hospital have a child clinical psychology team ? This is something that they could offer much help and guess on. Your daughters consultant should be able to refer you

StoneofDestiny Sat 22-Sep-18 19:37:31

I do think a lot has been done in the media and in schools to change people's attitudes and approach to 'difference' - when I was young there was no Paralympics, people like Katie Piper were not 'celebs' and schools never really touched on 'difference'. The kids that fare best are those that are taught from an early age to walk tall and see the 'problem' with how they look as a problem for others, not for them. Be positive - there are now so many excellent roll models around. Don't let your daughter sense your fear - just your pride.

Mumof1andacat Sat 22-Sep-18 19:37:56

Sorry guidance on

Cath2907 Sat 22-Sep-18 19:42:24

My DD wears hearing aids (genetic condition from her Dad). I know it isn’t as obvious but we were worried about bullying. She is nearly 8 now and has never had a disparaging word said by her peers. School have been great in normalising and read books provided by ms dealing with deafness. I don’t know how senior school will go but we’ve worked hard on her self esteem.

KingBobra Sat 22-Sep-18 19:45:08

Have a look at:

www.changingfaces.org.uk/adviceandsupport

Rodders92 Sat 22-Sep-18 19:46:59

Hi OP, have you looked at Changing Faces, they have a lot of info about living with a different facial appearance

LuckyTwiglet Sat 22-Sep-18 19:49:28

Hi OP I don't have experience directly of this but wonder if you can reflect on what if anything could have made your own experience of growing up with that condition, less difficult?

Is this possibly something you could get support on from a child psychologist?

DorasBob Sat 22-Sep-18 19:50:13

OP, if you don't mind me asking, was your surgery successful? As in, are you happy with your appearance now?

If so you could show her pictures of how you looked as a child, and talk her through theprocess. Lots of 'Mummy's face was the same as yours, it needed alittle help when I was 18 just like some people need braces. I didn't need to have it done, but I chose to, and you can if you want too. Some people can be unkind about it, but look how happy Mummy is, she is doing xyz and met your daddy and had you. We are the same, and it makes me love you even more'

That might help her put it into context, and understand the journey she is on.

DorasBob Sat 22-Sep-18 19:51:23

Also agree it's a different time - children seem to be much more accepting of hidden and visible difference, in the same way they are much more tolerant of other races/gay people etc.

upsideup Sat 22-Sep-18 19:53:49

There's a youtuber who my kids really love called Nikki Lily who also won a pride of britain award last year.

Atalune Sat 22-Sep-18 19:55:27

There was a lovely Yong girl who did the junior bake off and won last year. I don’t know her condition but it affected her face.

She was a vlogger, she was a children’s champion, she baked she played piano. Her parents found the things that she liked and really really developed them with her and she is such an incredibly confident young girl.

Also the presenter who has acid thrown in her face- she’s on strictly now.

Choose strong role models, give her other things that she excels at. Create a really really strong l, safe and loving home life.

happysunr1se Sat 22-Sep-18 19:56:24

My dd has just turned four.
She had a large nasal bridge haemangioma (size of a salad tomato) which was surgically debulked last Christmas. It looks better than it did, but there's still a long way to go. Possibly more surgery, probably laser treatment. But she will start school before anything much else is done.

She goes to preschool now. She has told me that other kids have asked about her nose in a matter of fact way and so my dh and I have told her to just answer honestly. Just to say, "I had a big birthmark and then I had an operation"

So far that is all that has been necessary.
I don't know what will happen when she and her peers mature and start thinking about physical differences.

I hope other children will have been taught by their family to be kind and non-judgemental to anyone they might see as different.

Of course we rarely talk about her nose in day to day conversation. Sometimes we look at her baby photos and we discuss it then.

She's surrounded by family who show they love her completely and she is confident in herself now, we will try to make that continue into the future.

For myself I feel upset that she has to go through this, but those conversations are between my dh and I only.

I had a bad time of it, 4 weeks in hospital, pre-eclampsia, delivery at 30weeks, 60 odd days in NICU.

I harbour disappointments to do with my pregnancy, birth, iugr, the stress of NICU, all the baby photos with the giant shiny red growth covering half her face.

The thing that gets to me most is I feel I can't close the book on those desperate feelings from when she was born until her nose is "finished".

I don't have any advice, just want you to know your not alone.

PickAChew Sat 22-Sep-18 19:57:18

Nikki is great. She won junior bake off, a few years ago and has presented a few programs on cbbc

Bluetrews25 Sat 22-Sep-18 19:59:21

When my oldest DC was at primary, one of his best friends had a really big facial birthmark. After a very short while, we just didn't really notice it, any more than his eye colour or haircut, it was just George. (name changed). Knowing him made us look beyond the superficial.
I hope people are more supportive to you in RL these days.

JustDanceAddict Sat 22-Sep-18 19:59:35

I was thinking of Wonder too. It’s an amazing book for teaching kids to look beyond someone’s appearance.
I wish her all the luck, but you can give her the example of your adult life as being a success.
I was also bullied for my looks as a child/young teen mainly - no specific condition - and I have survived. Once I got to mid-teens I made some great friends and although I never had to fight guys off I managed to get married and have kids who thankfully are much better looking than me. I’m not being flippant as I really worried that they’d have faces that weren’t acceptable to society.

AllyMcBeagle Sat 22-Sep-18 19:59:56

OP I'm sure that it's an obvious point but if I'm right in understanding that you had the same condition, is there anything you can think of that would have helped you?

It's worth bearing in mind as well that her condition will count as a disability for the purposes of the Equality Act 2010 so you can take advantage of the protections that provides - eg if there's something that you can think of that you want the school to do you could request it as a "reasonable adjustment". I'm always happy to answer and questions on the Equality Act if you need any help in how to make the most of it.

browneyesblue Sat 22-Sep-18 20:00:02

There is a ‘Wonder’ book suitable for younger children - We’re All Wonders

I think the pp’s suggestion of seeking a referral is a good one, and wonder if you have sought counselling for yourself? The guilt you say you are feeling must be crippling, and although I (and other internet strangers) can tell you that you shouldn’t feel guilty, you need to find a way to believe that yourself.

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