Raising a child who looks different

[Celestia26]

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?

Not much more to add, but will strongly agree with getting psychology involved. Preventative work is the key. Raise her to know she is beautiful, to believe it and people will be drawn to that. Come time you will have to guide her through some tough times, but let her know you are always there and together you will get through it. DD is “different” but has got a fabulous bunch of friends who not only support her but are fiercely protective. When you get there, try to build relationships with the parents at school too. I’ve found that helps.

You glossed over it but the guilt, oh the guilt. Hard as it is, try to put it away. It overwhelmed me for the first couple of years but now, 9 years on, it is fleeting. Be kind to yourself.

There's a girl who was on cbbc lots with a similar condition, and she's a tv star! Can't remember her name, sorry

Hello OP. I grew up with facial deformity and complete deafness in one ear. Nothing can be done for the deafness, but I had a lot of surgery, some at birth, majority at 18, to try to correct my face, which still isn't right, but is lots better than it was.

The one thing my parents did for me that made a difference was send me to an all girls' school. I think I would have found going to school with boys very difficult as an adolescent, with my face looking how it did.

Happy to chat more via DM, best wishes to you and your DD.

OP these may be very naive questions but may I ask, what is the most helpful way that other parents can behave with respect to your daughter and their children?

I have a young child and if say we met in the library and my child commented on or asked questions about your daughter's appearance, what would be the best way from your perspective of the other parent dealing with that? Or, if my daughter was in your daughter's class at school, what ideally would I have said, explained, if anything, to my daughter (I mean, as a young child).

Not exactly the same but my younger sister is disabled and lives in a kind of community with other people who have different disabilities and the approach there is that in the shared / social there's not really a labelling or a discussion of people's "conditions" as such, people are very much taken for who they are as individuals, if that makes sense, and it's great.

So that's exactly the attitude I would encourage my daughter to take to absolutely everyone in life, however at the same time children do ask questions without much warning so I'm wondering what would be the most respectful and empathic way to respond in that moment that questions are asked by a young child, if you know what I mean?

Surround her with inspiration of beautiful people who look different from the average. People like Katie piper, Winnie Harlow etc.

I have a genetic condition called NF1 which can be extremely disfiguring for some of us. Some have thousands of small tumours, other big tumours which grow back after surgery. Adam Pearson is a famous actor affected by NF1.
There was a TV show in Australia and you can watch the trailer here

www.facebook.com/ABCiview/videos/facial-difference-you-cant-ask-that/1459418120747495/
the whole show is here but I am not sure, you can watch it in UK
iview.abc.net.au/show/you-cant-ask-that/series/2/video/LE1617H005S00

You will need to raise her strong and bold an able to answer back to "what's wrong with your face" with a "nothing but what's wrong with your brain" .

to you however I would recommend you educate yourself on the latest recommendations concerning your condition because there is a gap of approximately 10 years between trials/ recommendation and change of protocol .
You can access the medical literature on Pubmed and look for the latest on the condition. The majority of papers will be locked behind subscription walls but there are ways around these.
Teach for books in the medical publishing world, keep on eye on world conference and try to attend them or gain the minutes.

I have found that getting to know my NF1 empowered me, especially since many doctors have this patronising way of talking to you as if you were an idiot.

Maybe she has to wait, but is it for her own good or for the good of the NHS costs? Read about papers on the psychological impact for facial deformities, join charities in the US or Canada, be active and proactive.
Science is changing and moving fast. 3D printing is changing the way prothesis are made, gene editing might reverse lack tissues/bone (several with NF1 have missing bones in leg or behind the eye) .

Good luck

SpanglyLycra Thank you for sharing about your cousin, and for your kind words.

Pringlecat Thanks for your comments. Sorry to hear that you went through something similar, but it sounds like you dealt with it well.

Regarding the savings, I don't plan on telling her it's there. I don't want her to feel like she has to have surgery if she doesn't want to. It's there as a safety net.

Her breathing has thankfully been mostly corrected now. She had a few surgeries straight after she was born, and at a review a couple of months ago, all is looking good on that front.

LuckyTwiglet Thanks for asking, I appreciate that. I think everyone is different in how they want it approached, but generally I think being upfront and respectful is best.

So no whispering or pointing. Encourage them to ask about it. But also encourage them to notice things about her that aren't to do with her differences. For instance...
"Yes, the little girl looks a bit different to you, but we're not all the same. But look what a lovely smile she has/see how well she reads/isn't she friendly?" etc. I also appreciate it when parents ask me about it so they can explain it to their children if their child is obviously intrigued rather than just telling them to be quiet and not to mention it.

Hope that helps. Thanks for asking x

I

My 9 year old and I have read and seen 'Wonder' as recommended upthread. Fantastic book and film, gently reminding us that we're all different.

My husband’s parents tried to sweep it under the carpet and pretend there was nothing different about him. Result = serious psychological issues and years of therapy as an adult.

celestia you sound such a lovely mum and so your DD will do well.
My DD had a facial deformity which was not noticeable at birth but really started to appear around 10 years old, and got worse until she was around 18 (her choice to have the surgery). She did become very self conscious during those years, but if I tell you that she had quite major surgery and then started uni just 3 weeks after surgery I hope it will help you know that your DD can do the same. PS, she's know 3rd year, confident as fuck!! love to your DD

I haven't read all the comments, so I apologise if I'm saying the same thing as everyone. You said that you have the same condition, I think you are absolutely the best support and counsel she can get. You have first hand experience of the issues she may face and the emotional hurdles she will overcome. Your life and existence will inspire her and in her difficult times, be the proof of better days ahead.

I suspect that choosing the right school will be pretty important, if that's at all possible, catchments allowing. I know someone whose child had a similar issue and was lucky enough to be in a school with such a caring ethos and strong effective anti-bullying stance that his difference was never an issue through the whole of primary school. Like someone said above, the social context was just really positive - it just wasn't 'cool' to consider physical difference as of any relevance whatsoever. Such schools exist, and their brilliance isn't necessarily of a kind that is particularly recognised by ofsted!

I had a large haemangioma on my face, that didn't fade until I was in my teens (they usually fade by 5yo). My advice would be to neither hide nor emphasise your dd's condition. Let it be part of day-to-day conversation. Model acceptance of it, and accept that she may feel differently.

Enjoy your dd. See her loveliness, and let her see that you see it.

I think a PP's idea of showing her your childhood photos is excellent.

Thanks for everyone's very kind and helpful comments, it's hard to respond to them all individually, but I have read and appreciate them all.

I have always found Mumsnet helpful, but I've been blown away by the supportive and kind responses and PMs. They have made me feel so much better for my daughters future, especially as it sounds like you're bringing your children up to be just as kind and compassionate.

Thank you

In the kindest way possible, when you knew your family had had these genes for many generations, why did you decide to have a biological child and inflict this on her, and possibly future generations.

Wow. This comment needs to go on the thread of what not to say to parents of SEN children.

And they haven't even come back yet to apologise.

Op you sound like such a fab mum. Whilst I know people can be absolute arse holes, ignorant to the extreme and just basically nob heads, and without sounding patronising, I think your dd is growing up in a world with so much more understanding and willingness to accept difference than ever before and from my experience there is so much less acceptance of idiocy and ignorance than ever. That said, surrounding yourself with positive people and cutting out/not standing for anyone acting in ways you aren't happy with is probably one of the bets things you could do and you sound like you already are doing that.

There's a YouTube channel I watch with my dd called Special Books for Special Kids she loves the man, Chris, who presents it, he has a variety of children and adults offering insights into various conditions etc and you might enjoy watching it with your dd too

Hi op you sound so supportive and like a great mum in thinking about this to try and prepare.

I was wondering whether in addition to the advice above about making her feel beautiful etc. you could help build her confidence through skills or sport? Where she'll gain friends and pride in something she's good at? So that if she hears from some bozo at school that she isn't beautiful, she has all sorts of other great talents that she's proud of, and her worth isn't linked to her looks. I think this could be applied to all children of course.

Maybe also the message that even the most typically beautiful people can fast become ugly if they're nasty or unkind, so working on her kindness, sense of humour, skills and confidence might be the trick.

Best of luck, I'm sure she is a really gorgeous girl inside and out and hope the world can see it

@jeanclaudejackety I’d thought I’d made it through the thread and would get to mention SBSK first! grin] for and also anyone who would like some lovely videos to discuss with your children about how we’re all different and yet all the same, SBSK is a brilliant resource and really gently challenges our assumptions and preconceived ideas about diverse conditions. It’s given all the children I’ve cared for some great discussions and questions, and I hope it encourages them to be open and compassionate and engaging to people they meet that might look a little different.

for you, OP, you really do sound like a stellar mum.

Celestia this thread is an absolute example of what your DD will probably experience in RL. 100's of people who won't care about her outward appearance but about who she is and about how you are raising her as a caring Mum. People may ask questions and feel awkward but it'll be about not wanting to say and so the wrong thing.
The thread also shows you'll meet the odd dickhead. Just look at peoples responses to that 1 dickhead though. Your DD will find some people are unkind but that in general no one around her will accept that.

I 100% believe you'll teach her to be kind and a great friend and that's what matters

I'm the same about dd having surgery
like your father, I was one big experiment for the medical profession and we t through awful horrible surgeries. The methods have improved a lot for our condition but I still hate the thought of putting dd through and have absolutely left it to her.

Celestia what a lovely mum you are. You have such an understanding, practical and loving approach.

No advice really other than having the school on board, books films and TV shows that address the issue, role models and meet ups with relevant charities sounds really helpful. And extra curricular activities that will build her confidence even more.

My DC was born with a limb difference and has just started school. To echo lots of other posters we spend time telling them "their story" ie why they were born that way and what it means for them, we try and give them the vocabulary and confidence to deal with any questions (although I still sometimes struggle with the stupid questions from adults!) and also the confidence to tell people he doesn't like being touched or pulled at (!) I know right now it will be easier for him at school and will only get harder but I do think people more widely are much more accepting and there are loads of positive role models in the public space which we make sure we talk about with our child. I'd agree with @witchend and see if you can join a charity who supports children with the same difference(I wonder if we're members of the same one?) We've just joined a national charity and are going to an annual weekend in October, my DC is really looking forward to meeting other children with the same difference. @Celestia26 You sound like a fab mum and if you ever want to chat do pm me.