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?

Changing faces is fab. Try to encourage/offer her activities/hobbies/sports so she has a focus and makes friendships that aren't centred around looks.

I was just about to mention the Wonder books, there is also the film Wonder OP that you might find something to help you ease your mind.

Also have you tried to see if there are fellow parents or support groups on the net or facebook?

My daughters disability is not as severe, she has albinism but my heart goes out to you with regards to concerns and wishes for your child. xx

I would second a pp in saying work on her own self esteem.
I also agree that the teenage years will be more difficult than when she’s in primary. But that’s true for any child who is different from the ‘norm’ I was bullied because I had frizzy hair and nhs glasses. Kids will pick on anything and you cannot change those mean kids. But you can help build her resilience and you sound so amazing that I’m sure she’ll have so much support at home.
I would also add that she should join groups outside of school - my own experience of my children attending beavers cubs and scouts is that they are all accepting, all encompassing and a good group will become a scouting family.
I wish you and your daughter lots of happiness

Oh OP I do feel for you and share your worries. Cancer treatment has left DS was a visible physical difference and I just want to wrap him in cotton wool and make sure nobody ever hurts him.

The only thing we can do is help him develop coping mechanisms, inner strength and as much confidence as possible.

Although not as noticeable, both me and youngest dd have a genetic 'difference' which can be seen. I was brought up to be ashamed and hide it whereas I am bringing dd up to be okay about it. She's chosen not to have reconstructive surgery whereas I had no choice. The guilt I feel is immense and I really do understand how you feel
It's horrible isn't it. All I can say is that I speak to her about it when she wants to talk and be sad and if others have an issue I have taught her to tell them it's how she was born and do they have any questions.It's bloody hard though and I would agree that changing faces is a great organisation. Thinking of you both

So sorry for you and your daughter. I have no personal experience of this but thinking of my own children I would say the friendships they formed with other children at this age were children of my friends, they are still friends with those children now. I would imagine the friendships last because we spend time with them outside school as well as them seeing each other inside school. Children at 3/4/5 don't notice or care about these things and even if they start to question why your DD looks different their parents will give them an explanation and they will accept it. If by the time she is 6/7 she has some strong friendships I wonder if that will help her as children start to judge and be more aware of differences. So what I am saying is can you make every effort to get to playgroup and meet up with the nursery parents and their kids and just help her form some friendships now then keep them up for her by arranging playdates etc as she grows.

I also agree with other posters about finding online support groups and maybe meeting up with people with children with similar conditions so that she has a network of people she can talk to about her condition as she grows up and begins to be insecure. I am sure you will be a huge support to her and thankfully I do thjnk people are more accepting than they used to be.

Thank you all for your kind responses, I appreciate it. I will watch Wonder, and look into Changing Faces too.

Elliejjtiny and happysunr1se thank you for sharing your experiences with your children. Happysunr1se I'm sorry about your difficulties with the birth and your feelings after your little one was born. I understand completely

LuckyTwiglet Unfortunately the only thing that would have helped would have been to have surgery earlier. I wasn't allowed and it seems she will be the same.

DorasBob I'm mid thirties now and have had a number of surgeries since 19. I'm at the point where no one would stare at me walking down a street, but up close there are still issues. I'm not allowed more surgery, my skull can't take anymore so I have worked on being content with improvement rather than 100% correction. I have this bond with her though, so hopefully she won't feel alone going through it all.

I agree with the advice on here but I also have another suggestion...wasn't sure whether to post as I'm scared I'll be ripped to shreds and flamed for suggesting it!

Ok...I don't necessarily think it should be important to do this but it's what I'd do and I know a lot of parents with DC with sn do this too. I'd make sure her clothes, shoes, stationery, toys etc are fashionable. It shouldn't be this way, but it gives the other kids something to admire her for and less bullying ammunition...not saying it's right...just life.

Wonder is a really badly-written book but the film is better.
Out of my Mind is a much better book, but better for older children I would say (maybe 11-14). It raises many of the same issues as Wonder.

OP, I wish you luck regardless of any steps you feel you need to take to make your daughter feel valued.

BangingOn I hope your son is recovering well. And Lepetitepiggy thank you for sharing about your child. I don't want her to grow up being ashamed, I'm worried people will make her feel that way though, no matter what we tell her.

I delivered a child with Spina Bifida nearly two years ago. I personally recommend you seeing a therapist or counsellor. You need to find effective coping skills and techniques to help you cope with getting past your guilt.

We do talk about his disability from time to time as a family. A therapist once recommended I answer any questions honestly. Mostly his twin sister is beginning to notice and ask me or my partner questions about her twin brother.

I try and get her to include her twin brother in activities as much as possible as well. Books have helped me accept my son’s permanent disability. I ordered a couple from Amazon when I was told of the news.

AllyMcBeagle Thank you for your legal advice, it's helpful to know there are Acts which may help support her if we run into problems.

Regarding my own experience, I have exactly the same problem. The things I feel that would have helped are greater tolerance to differences, which does seem to be the case now. Also, earlier surgery, but doctors have said this is unlikely.

Minimal in comparison, but I've had visible facial scarring from age 13 that drew comments from peers and especially from small children who saw me in the street, so I have a little idea.

A couple of things that helped: an age appropriately planned script ready of what to say when someone commented or asked what was wrong with me. To have a known script to trot out stops you being on the back foot and gives you a confident reply, and I've seen this work with children as young as four with similar issues to me.

To meet an adult with the same issue: A confident, grown up role model can really help, especially in later childhood/early teens.

It's years off yet, but around the age of 11-12ish think about finding a good colour consultant (house of colour etc) and booking a 1:1 or joint appointment alongside you. My mum did this with me, and I found to have someone talk with me about my features, notice my eye colour, my hair texture, to look at the colours and shapes that worked on me the most, it was a very positive, fresh view on my body and my relationship with it, and it helped a lot with confidence in my appearance. I did it again a few years ago when I was particularly down about it, and found it another useful boost.

formerbabe I understand what you're saying, don't worry! Thanks

I don't have personal experience of what you're talking about. I have a little experience of less obvious issues.

I have a prominent, fairly large, mole on my face which I've had since birth. It's near my eye so at one point there was discussion about it being removed when I was younger but basically this was decided against mainly due to its location as there was a risk of damage to the nerves near the eye which could affect my sight (and my sight isn't great anyway!). I had a few idiots at school make stupid comments, i actually wasn't the most confident child in many respects but on this, the mole never really bothered me and I didn't get why others would see it as a problem. I basically just ignored them and for the most part they got bored.

I had a friend at my 2nd high school who had a large port wine stain across her cheek and nose. We didn't discuss it often but we did have one in depth conversation about the difficulties she'd faced and she said she'd initially found it very difficult and there were some problems in primary school. But her parents had helped her build self confidence in various ways and they'd also spoken with the school and teachers stamped on whatever bullying they observed/was reported. She took dance as a hobby and was very good. This gave her confidence too. By the time she started high school she had a solid core group of friends who would come to her aid if necessary but generally - I'm not sure how to word this - she had a strong, confident, vivacious personality such that it overshadowed any negatives people might have thought as a result of her appearance. She was/is a very warm, friendly person.

I guess what I'm trying to say is similar to others - build her confidence/self esteem and resilience and then in all likelihood it is unlikely to be a big problem.

I would hope too that people are more thoughtful, considerate and accepting of difference than when I and perhaps you were growing up (inc teachers). Also (and I know not true of all schools) but generally schools are more aware of verbal/emotional bullying now and hopefully handle it better.

Hiya
My little girl (who is 3) has a visible congenital limb difference and i often worry about some of the things you have mentioned, particularly her self esteeen as she gets older and how other children will react. I don’t have much advice but if you ever want to message then please do x

spinabifidamom thanks for sharing about your son, I hope he is doing OK. My daughters hospital have psychological support, so at her review next month I think I'll ask to speak to them

Knicknackpaddyflak Thank you for your advice, that's really helpful.

My dd was born missing her hand. That probably sounds to you relatively minor compared to your dd.

I won't pretend it's always easy. She was fine earlier. Young children don't notice, and if they do they say "oh you haven't a hand and you have blue eyes" matter of fact. That's the point her being able to say "I was born without a hand" is useful. Children ask, they hear that and they go "oh" and move onto something more interesting. In fact it gives them a good introduction to children and can be actually helpful in making friends.

Once they get to school age it becomes more persistent, and by about 7/8yo can turn nasty.
Dd hates going new places now because she knows that she will always have to answer multiple questions-mostly the same. It isn't necessarily nasty, but persistent. She's also now sensitive and is easily hurt by nasty comments.

If we're out, you sometimes see people turning round to take a second glance, again she hates that.

What does help, is her charity meet ups where she knows they are all similar. They can swap tips and ask for help.
She also had had opportunities that my other two don't.

My advice would be try and find a charity which does meet up of similar people. Take any opportunities offered-dd's been on TV, done circus work, trained with a Paralympic coach, flown (duel) light aircraft.

So she gets good out of it as well as bad.

And also treat it matter of fact as long as possible, and be there to help and support if she starts finding it hard.

My sibling suffered an injury that left them with a facial disfigurement, at the time my parents got a lot of help and information from Changing Faces: www.changingfaces.org.uk/

Graphista thanks for sharing about your friend. I plan to do lots of out of school activities to help her confidence.

Gizmo2206 to you, thank you. Hope your little girl is doing OK.

I got through secondary school from about yr 9 onwards by gritting my teeth and thinking of University. Because all of the bullies, and morons and closed minded little arseholes wouldn't be there. It was true. University was amazing, and worth waiting for.

Let her know that people get better as they get older, and that she isn't going to spend her whole life with children. She's going to grow up, get the surgery, and live with people who aren't as stupid as 5-16 year olds are.

There is light at the end of the tunnel.

And who knows, by the time she's 18 medical tech might have advanced in all sorts of ways. We went from the Wright Brothers to landing on the moon in one lifespan. When I was a kid the internet was just getting started, now we all carry smartphones in our pockets and have wireless doorbells with cameras in them so we can see what the postman looks like from Tazmania, if we so choose. Things get better.

Sethis Thank you, you're so right. My dad had his surgery in the 1940s and it was brutal for him, really just medical experimentation. My was in the early 2000s and was far better. I'm hoping that in another 10 years we will have made even more advances.

And regarding university and the rest of her life, it's something for her to focus and look forward to. Thank you.

Oh bless you, I can't imagine how difficult it is for you, I worry about my children going through the same bullying I went through.

I'd like to think the world is a lot more tolerant now and teachers have more understanding. Hopefully that is what you will find.

Your doing everything you can to help her.
I'd definitely try to get her into some classes outside school, (self defence classes can give an amazing sense of self control, peace and power over your own life,) it will help her confidence and she can find friends outside school as well.

My son doesn't have a facial difference but he has Mild CP so is physically different.

He says the best thing I've done for him is not to be overprotective and stop him doing things for fear of others reactions but rather tackle others being disablist head on.
He said if he was kept hidden he'd have felt that he did have something to be ashamed of.
I approached his secondary school HT when some pupils were calling him a spastic and basically said you wouldn't accept it if it was racist to deal with it the same way and don't water it down or put it down to kids being kids.

School were great and it only took a few heavy punishments for kids to just stop doing it and slowly the general ethos of it not being acceptable to be unkind about difference has flooded through the school.

You'll still get the odd person who will comment. But people will comment on anything if they are that way inclined and have that general nasty streak.

Your DD will be fine. She has you to stand up for her with real empathy. And also you are living proof this generic condition won't stop her finding love and having children if she wants.

My child had a physical abnormality. We got no help from the nhs and were constantly told she'd be fine. We just couldn't take the risk and decided to go to Harley Street after we got lucky and DH worked with someone who had one of the same problems as DD which meant we out 2 and 2 together and got four. She had treatment, it cost a lot of money but we wanted to be able to look her in the eye and tell her we did everything we could even if it didn't work. It worked so much better than the doctor and we expected it too and a paper has been written about her.

I suggest to look into everything and talk to as many people as possible to get the surgery sooner.

We also planned to teach our child to be strong and proud but unfortunately some parents haven't taught their kids to be nice.