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?

Hi OP I've been reading your post and all the replies with great interest, having worked one-to-one teaching children whose appearance is different, and also accompanied them back to school to offer support with reintegration following surgery.

If you have a choice of primary school I would echo PP's advice to visit, speak to head teacher and look round each school before making a decision. The empathy of the head and ethos throughout the school makes such a difference. For example, one of my pupils had lost an arm through cancer, and the head would pick a different child at each assembly to be his "clapping friend" .. so the other child would sit with their arm round my pupil's shoulder and they'd use their free hands to clap together when needed. The other kids were so keen to be picked as a clapping friend and the head's imaginative approach made something potentially upsetting into a fun and inclusive experience. If you can find a school with that outlook you'll be well on the way to a happy experience for your daughter.

I've also visited schools prior to a child's return after surgery (or in some cases if they were returning after chemo having lost their hair, perhaps gained weight due to taking steroids, or were returning with a feeding tube still in place) to have a meeting with the class and teacher. We would invite the children to ask any questions they wanted whatsoever. (My pupil wouldn't normally be present at this meeting). I've answered questions like "If I bump into her in the playground will I kill her?" - these kids were around 7 years old - and discussed why you lose your hair during chemo and what it might feel like coming back to school after a long time away if everyone crowds round you etc etc. Primary school kids are so straightforward and generally well-meaning and an honest approach always works best. I used to sometimes hold these meetings with a Macmillan nurse present too, to answer the more detailed medical questions accurately.

I agree with PP upthread who said that most people are kind and decent; just sometimes not quite sure what to do for the best. I know this is a year or two in the future, but how would you feel about requesting that the school host a meeting for parents in your DD's class in advance of her starting school, similar to the sort of discussion I described above .. does that sound like a really difficult thing to do? You could explain her situation and people would have a chance to understand without being hesitant to approach you at the school gate, not knowing what to say. I think you would then start the term having broken the ice with everyone and I know that at the primary school my kids attended people would have reached out without hesitation to be kind, and include your little girl.

Sorry, this is turning into a saga! but one more thought for years ahead. I supported one of my pupil's transition into high school and what made a huge difference to him was having a lot of friends from primary at the same school, brilliant kids who were very supportive. So if there was the odd idiot who made fun of him they found themselves taken on by a group and soon piped down. My pupils' experience has been that primary is usually fine, and secondary can be more challenging, so building up a strong group of friends for the future is very helpful.

I also agree that things are so much better than they were .. more open, more honest, more positive in general.

You sound like a great mum and I wish you and your daughter all the best

@DaisyandTim
Yes, same one. See you in October!!

DaisyandTim thank you for sharing about your son, I hope he is doing well. We are connected to the official charity of the condition so she has the chance to meet others with the same issues. They have been really supportive.

highlandcoo thanks for your really informative post. We don't have much choice with the school she will attend at Primary level. Secondary options will be a bit different though.

Luckily the primary school is excellent and has a wonderful headteacher. They allow parents to go in and do class information sessions for things like this, so they may let me and my daughter do a little talk with her class when she starts (if she wants to!). Thank you for all the information you have provided, it's helpful to get a perspective from people who deal with this area in a school environment. Thanks!

my niece has a very large facial birthmark.
She wasn't teased through primary, and as it was the same set of kids who went up with her, it was just Janey (name change) and they ceased to notice her birthmark.
It hasn't all been plain sailing, and I know she was more concerned as she went to secondary. In the end her parents sent her to a smaller private school, and I did wonder if concerns about bullying effected their decision.
She has always been amazingly confident considering. I remember watching a documentary about 2 women with birthmarks. One wouldn't leave the house/open the door with out full cover up make up, and she met another woman who never covered up and was very relaxed and open about it. Their self esteem and their attitudes were just polar opposites. As they talked it became clear that they had mostly taken on their parents approach, and that had been the biggest effect.
So I would encourage you to encourage her to be matter of fact and up front about it, so much will depend on how you lead her in this.

The funny thing is, for me niece, I don't notice her birthmark. Her face is just part of who Janey is, and I think she is beautiful.

My daughter has albinism, I see her as the most beautiful child in the world and have raised her to see her own beauty.

Sadly this summer for the first time in her 10years she was bullied relentlessly by children at a holiday club. Calling her "white girl" "albino" and having her hair pulled and being told that by the time she leaves they will have pulled out all her hair.

We removed her from the club especially after being told by the supervisors that "she needs to toughen up".

This is the first time my child has been bullied for having albinism and I can to a degree understand why parents are scared but it is our responsibility at parents to build their confidence up and to ensure that we educate those around us about our childrens disabilities.

It is a cruel harsh world out there and people are extremely cruel and all we want to to do is protect our children from that cruelty but there comes a time that we have make sure that they can face up to idiots and be proud of what they look like or who they are.

I remind my daughter every day that she is a beautiful, intelligent and strong minded child.

Beaver
Those supervisors are in the wrong job.

Make sure she’s got a one or two line answer to give to people who ask inappropriate questions. My kids’ answer (different situation) is ‘Mum says I don’t have to talk about that’.

Make sure she knows that sometimes it’s okay to be less polite than she might otherwise be.