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?

Lots of good advise from previous posters. Can I just recommend a book - I like myself- by Karen Beaumont. It is suitable for age 3-5 and talks about liking yourself whatever you look like but in a fun way.

FruitofAutumn Thanks for your incredibly helpful post (!) To answer you, there is no pattern to passing this gene on and it cannot be tested for.

None of my dad's brothers or sisters got it. My own brother and sister didn't either.

I have one child who did get it, and one who didn't.

Using your logic, none of us could have had children in case we passed it on.

I didn't ask for judgement thanks, I asked for advice. And as for inflicting it on my daughter, trust me I'm suffering enough guilt with that.

Thank you Onceicaughtafish I'll look into the book you suggested.

Celestia you didn't inflict anything on your daughter. Genetics did.

No personal experience but my gut feeling is to tell her she’s beautiful all the time. Your opinion will matter more to her than anyone else’s.

Bless you OP. It sounds like your DD Is very lucky to have you as her Mum.
I can only give limited advice from my perspective. My 5yo has just started school. If there was someone such as your DD in his class it would all be very matter of fact. He would be interested in why her face looked different but would be satisfied with a ‘that’s how she was born and when she gets bigger the doctors will help her face to grow’ type explanation. (Apologies if that’s not how you’d explain it). It wouldn’t affect how he treated her or stop him being friends. I’d like to think he’d continue to be kind as he grew older but time will tell on that one.
However, being honest- it’s me that might feel a bit odd at the school gate. I would be curious and worried about not offending you. I know that the school Mums might be the last ones you care for, but it might be worth being upfront from the start so everyone understands? No idea if this is terrible advice or not

I also agree with the many PPs who say that times are very different now. There’s every chance she’s going to have a much more positive experience than you did growing up

Celestia you are clearly an amazing parent to your daughter and of course it isn’t your fault. Ridiculous for anyone to suggest that it is

fruitofautumn in the kindest possible way, are you always such a twat?

I think children pick on different things like too tall, too large, hair colour, clothes, nerdy, small, spectacles, voice, mannerisms, etc. I agree that you need to build up resilience, humour, self esteem. Nobody is perfect. Some people look what is supposed to be beautiful on the outside, but are horrible people. There are lots of videos on Youtube about inspirational people from all over the world.

My youngest has a genetic condition that is linked to his epilepsy. His head is relatively bigger to the rest of his body but it's not particually noticeable. We won't know for some years how much the deletion has impacted on him.

We have just recieved a rare bear from rare science. We hope to use it to talk to him about his genetics diagnosis and epilepsy as he gets bigger. It's already helping his big sister talk about it. They send the bears to children free of charge.

Some schools can be amazing for helping children build their self esteem and learning to live with educational or medical differences. I was placed in a school for part of my training that a very lovely young lady attended who has very short arms. The school was tiny, two years to a class, and refused to tolerate any rude or derogatory comments from children or parents. The children were carefully educated and she had an excilent ta support her. She's in her teens now and goes to the secondary school close to where we live. She's a very confident young teenager so far. She has an army of friends from her school and the other village schools connected to it who support her and have helped to stamp out bullying towards her. The school my son will attend has a very good reputation for dealing with sen and physical and medical needs.

fruitofautumn in the kindest possible way, I hope you don’t pass on your personality to the next generation

Thank you YearOfYouRemember I appreciate that.

Thanks for sharing about your daughter. I'm glad she's doing well and her surgery was a success.

We will keep querying earlier surgery, and will consider private practice if needed. Although I'm not sure how possible it will be, as the bones in the skull need to have stopped growing and be fused before surgery takes place. The skull is broken up and reset, then plated. I don't think they can do this when she's young. It's why I had to wait until 19 unfortunately.

Almahart thank you, I appreciate that.

I am sorry- as I have no advice. But on the back of this thread, I have bought the book “we’re all wonders” and I will read this book to my children and also to the children I teach. If everyone who reads this thread was to do that, it would maybe make a tiny, small difference to someone out there. I am sorry, also, that I think that might be the only thing I can do, if you can think of anything else, please let me know.

ButterflyWitch
Thank you, it sounds like you're bringing your son up to be very kind. And yes, I'm very honest with parents if they ask. Usually they stare, so I bring it up first to stop it being uncomfortable!

Dobbythedoggy Thanks for sharing. My little girl got a bear from the charity that deals with her condition too, she loves it.

Iwantaspangran Your post has brought me to tears, thank you for being so kind and caring. You sound like a wonderful teacher. I wish every school would do this.

I can only comment on my own children at primary school, now year 6 and 3 and an older secondary school child ( but unusually varied/tolerant environment) but it would be considered the height of naffness to be rude about someone’s appearance. They each have children with abinism, rare syndromes or T21 and don’t bat an eyelid.

Hi Op.
Coming from another viewpoint I'm a teacher at a high school.
Amongst our students wee have one with macrocephaly, one with a large birth mark and another who was born with half of a limb. Plus we have children with adhd, aspergers and a speech impediment.
Our school is massively conscious of how they are treated and bevause of this there has been very little (I've never heard of any and the pastoral team hasn't sent anything out about it) bullying of these students. There is the normal niggling at each other if they're annoying but no comments about anything that sets them apart.
I think for me an important thing would be to make sure they go to school (from pre school or primary) where there are lots of their school friends aswell so they have a core group of people around them who they know and to make them as confident in the fact that they are "equal" to everyone.
And fruitofautumn fuck off..

Celestia, I have no direct experience of your situation but I can say that your daughter has a fabulous mother. Strong, intelligent, practical and with an ocean of love. Lucky girl.

My cousin, now 46 grew up with a variety of facial disfigurements and has had many operations. He was my best friend growing up. It was normal to me but when I had children I did wonder if they would pass comment as they see him infrequently. They have never said a word which I think is a really good indicator of how accepting kids are. I know the surgeries will be painful on many levels my only advice would be build her confidence as much as you can and involve with as many things as you can. I see Changing Faces has already been mentioned upthread and my cousin used to go to a lot of their events.
When he was younger my cousin had loads of friends and interacted well, as he got older he has become somewhat reclusive but this is due to a later psychological issue (unrelated) when I look back now I can see the times where he was interacting and doing things were the best for him.

Ps I also meant to say it sounds like you have a very positive attitude and she's a lucky girl to have you x

Children will ask some very direct, blunt questions. It's not usually meant maliciously, but as a adult listening, you will wince at some of the things they say.

Don't just tell her it's all OK, make sure she knows why she looks different. Answering harsh questions is fine if you're prepared - if you don't know how to respond, because you don't really know the facts, then it can be upsetting.

For me, being able to confidently tell other children they couldn't catch what I had, was very helpful for both them and me. Satisfied their curiosity and pre-emptively stopped them from treating me as a leper.

From what you've said, this condition may impact on her breathing, so if you ever talk about the savings account for surgery, I would make clear the money is there if she ever needs extra help in breathing better, i.e. make sure there is no focus on surgery to look more 'normal'. I say that, because you clearly felt that you needed surgery to 'fit in' and it would be so easy to pass on that attitude.

You've already lived through this, so reign in the guilt (if you constantly feel like it's your fault, she will pick up that there's something you should feel at fault for) and just be there for her in the way you wish people had been for you when you were at your lowest. As well as being her mum and naturally having that special mum connection, you know the reality of growing up with this connection and can have some really honest conversations with her that no one else can.

I think it will get better and better for children who look physically different.
My children's school has Wonder on the reading list and my yr 6 and yr 4 daughters have read it.
They've asked many questions and I have given honest answers. Most kids in our school are being given the message loud and clear that it doesn't matter what you look like, no one can help that, it's how they were made, but it matters how kind kids are and how much they try, do their best,be a friend etc