When my twins were born prematurely I had no idea that Harry would have a rare cranio-facial condition called Goldenhar syndrome. I didn’t cope very well with the news that my son had a facial disfigurement in the early days, particularly as we weren’t sure of the longer term and more significant health implications.
Taking my double buggy out always attracted a lot of attention and some very awkward moments when people peered into the buggy, saw my boy and just didn’t know what to say. When my best friend Caroline convinced me to take the boys to soft play centres with her and her boys, I experienced the less restrained reaction of other children. Some would cry when they saw Harry. More than once, children shrieked and ran away. Once, a boy got Harry in a head lock and tried to prise his ‘bad eye’ open. I never blamed the children for their reactions but it really stung me to say the least.
Nowadays, I am really comfortable in dealing with peoples reactions and questions (check out my blog on 7 things to do when people are staring.) In response to a suggestion from a lovely follower over on our Facebook page – Our Altered Life, I thought I wold compile my top tips on the ways that you can help your own child understand facial disfigurement in others.
I imagine 99% of conversations with children happen in response to seeing someone with a facial difference (or even a disability which can evoke similar questions and reactions). My top tip would be to chat about it now, even before you see someone who looks different to what typical children expect to see. There is no right or wrong age for this as it very much depends on your own child but once they are able to understand the difference between boys and girls then I think it’s a good time to talk about the variation within genders too.
Model the right behaviour
I know this can be hard when people respond instinctively but we are our children’s first teachers and so I think it’s important that we show them the best way to respond in all life situations. If you do see someone with a facial disfigurement, in a wheelchair etc, just smile. Don’t rush the child away or encourage them to look away. I think anyone who looks different for any reason, is prepared for the variety of reactions we receive so to see you explaining about diversity and sharing a smile is so much healthier than ushering children off and whispering as if we are something not to be looked at.
Show them images of children who look different
Please, if you only do one thing after reading this blog, show your children some images of Harry and introduce them to him on the videos I share on our Facebook page. We have lots of children who send him messages and drawings who I am positive asked the first time they saw him why he looked different. But now, they simply see the boy he is. In showing children images of others who look different it desensitises them to the differences and opens their mind to the similarities there may be.
On that note, help them to see the similarities.
This could just be something that the child is doing, if you are at the same place then chat about the fact that they must also like the zoo / cinema / trampoline park / gin aisle in Asda (ok maybe that’s my happy place). It could be something as simple as a colour they are wearing that your child likes or a bag of crisps that they are eating. Think on your feet and find the common ground. There will always be more similarities than differences but it can take a few minutes to find them.
Explain that some people simply look different.
It’s simply a fact that there are some children who are born with syndromes like Harry and look different to a typical child. There are also children and adults whose appearance may alter after an accident or illness. At some point, maybe when your children are a little older, its worth educating them that every face has a story and the most different faces often have the most interesting stories and the bravest hearts. I don’t ever want anyone to pity Harry but I want them to know that life is tougher with the worlds eyes on you and that a smile can go a long way. Education and awareness promotes understanding and kindness.
Prepare an explanation
In sales its called an ‘elevator pitch’ – a summary of what you do in the amount of time that it would take to go from one floor of a building to the next. The more concise the better and the more you practice it the more natural it feels.
In a similar way, it’s a great idea to have a one liner up your sleeve that you can for the times when there might be an awkward moment to defrost or a very loud question from a little person to answer. For me, I always explained Harrys face by saying “He was only born with one eye but some very clever doctors are making a new eye for him so that he looks like his brother and a bit more like you! He’s a very lovely boy and he likes bouncing, pizza and Thomas the tank. Do you like any of those things?” Granted, that’s probably more like two floors in an elevator but you get the picture. Know what you would say and you’ll find that you are able to deal with your natural embarrassment much better in the moments that count rather than kicking yourself afterwards.
Focus on what matters
Ironically, the best way to explain facial disfigurement is not to concentrate on it too much. If you find yourself in the position of needing to explain why some people look so different but you have your elevator pitch ready and have done some proactive ground work first I guarantee that not only will you find it easier to explain but your children will grow up accepting that difference is a part of life, and rather than being feared, can actually be celebrated. And maybe they will even pass that kindness on to the next generation. For my son and for others like him, that acceptance is the gift that just keeps giving. What an amazing thought that is!
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Such a brilliant and important post, I will share this with staff at school. More awareness definitely needed x
Brilliant. Thanks so much. I would LOVE to know how it goes down in school C x
I love this. A really well written piece which could help a lot of people.x
Thanks so much. I really hope so C xx
Great tips. Because the sad thing is, we haven’t all been taught what to say or do, or not say or do, in a huge variety of occasions, and so many people just don’t know what’s the right way to go about things. You really help with your honesty – and I recommend your book to everyone I meet 🙂 x
Thanks so much Steph. That really means a lot C xx
I love this post! I’m now 25 years older than my mother was when she gave birth to me–a child with a very similar Goldenhar facial anomaly. What else do I call it? My elevator pitch has always been, ” I was born without my eye.”
My mother explained it to me that when God was making me he ran out of eyes, so he just stuffed in extra brains to make up for it.
I’m now 57 years old, married, happily busy with life and career. Being born without an eye was truly a gift.
“Extra brains” is genius! I love that and I am so happy to read that you’re enjoying such a happy life C x
Thank you very much for this post. I was looking for advice on how to talk to my 4-yr old about her cousin’s cleft pallet. I will definitely show her pics of my niece as a baby before her op, she was so cute. We all missed her gap when it closed.
Do you have any advice for siblings of children with different from average faces? We assume they’re the ‘lucky’ ones, but I think they can find it hard. My nephew is struggling with the time and attention my niece gets.
Hi Meg, thanks for your comment and I am glad that the blog has helped.
For your nephew I just think its important that he knows that people get stared at for lots of different reasons and usually just through curiosity but that it doesn’t matter what people look like. Its who they are on the inside that matters. I know that my son Oliver felt Harry was more ‘special’ than him because I’d used that word to explain his differences. I never considered it would mean that Oliver didn’t feel special (face palm moment). Id say to make sure that there are regular (monthly) times that he can spend with his mum on his own. Even just half an hour somewhere so that he has memories of mum time as well as standing in the wings. Thats what I have had to do. I truly believe that siblings are the unsung heroes of our stories. C x
Hi, my son looked at the photo of your 2 sons and asked what Harry’s brother’s name is… but I couldn’t find his name in what is written here. May I ask what your other son’s name is? My son has some mild facial differences compared to normal.
Hi, hes called Oliver. Tell your son we all said hello 🙂 x
Hello. Very well written and very true. Informing our kids is important. As you say, a smile is the best way to interact.
Your boys remind me of The Eternal Twins from Star Wars The Old Republic (video games, I know, but let’s stay open minded).
If you watch the trailer, you will see one of the twins has some sort of super high tech eye patch after having a head injury.
That’s makes me think that in the future if Harry finds some super cool or designed eye patch, he could look hell of a bad ass. He could totally look like a Marvel superhero.
I remember a video on youtube with a young man whose arm was cut off and has been given a terrific Deus Ex titanium prosthesis. His arm now looks like he is from the future. He is not a disabled guy anymore, he is the coolest kid in the place.
Anyway, this was written with the upmost respect for your family. I wish the best to Harry. He is part of us, he will have it tougher than most, but he will also get more love for it.
Thanks so much. I love the idea of Robo-Harry! Cx
Thank you for this blog. I have just discovered it and now follow you on Twitter. I have identical twins and one has an absent right foot. I feel like I am constantly on alert for anyone noticing his limb difference and I always worry about the reaction of other children once they notice it. You have given very good advice about how to deal with that. Thank you. I hope you and your family are all well.
Hi Claire, thanks so much. I hope it helps a bit. Looking back I think I too, was always hyper vigilant for people staring. I think its our instinctive protectiveness for our offspring. Its means we are good mommas 🙂 Cx
I have bilateral deformed feet due to hidden spina bifida with tethered spinal cord. Loved reading about the ways to deal with staring … Yep even at the age of 54 and 3/4s it still hurts. Thanks Charlie for your insight
Thanks so much for your comment Nina Cx
I love this advice. As someone born with one arm and who works with children, I am often helping children understand differences. And I also point out our similarities. The children I work with do not have differences that show. They learn differently. Once I realized the similarities between us, I decided to write my next book about all kinds of differences. It’s in the beginning stages, but I’m excited about it. In this world of such divisiveness, my hope is to help people accept and appreciate the unique beauty in all of us. This is why I love what you’re doing with your blogs. 🙂
This is brilliant Shawn. What will your book be called? I’ll be sure to check it out!
Charlie, can you tell.me who your publisher is/was? I have an autobiography nearly finished, about my journey with tethered spinal cord and would be looking for a suitable publisher soon. Thanks vv much in advance. #loveyourblog #harryandoliverrock!!
In the end I self published which is becoming more and more popular now. Have a google of the differences between traditional and self publishing. Good luck! Cx
Hi. I was out with my 3 year old granddaughter in the park recently. There was a teenager there who looked like he had some significant facial scarring through burns. My little granddaughter did look quite intently for a brief period. He spoke to her and she replied politely like she would with anyone. I’m sorry to say I had no idea what to do in this situation if she were to stare or ask loud questions. I am keen for her to be able to speak to everyone equally and am keen not to cause offence.
It sounds to me like it was a great interaction. Understanding that people are more than their face and everyone deserves a smile is the best way for us all. C x