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.

Harry as a baby

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.

Be proactive

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.

A father and son chat facing away from the camera

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.

A young girl sits, typing onto a laptop with her mother behind her

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.

Me and Harry

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!


Chat soon

Charlie xxxI

f you are the mum of a child with a diagnosis and/or additional needs and you would value hearing from another mum who truly ‘gets it’ and often says what you feel too nervous to admit (plus a great community!) then sign up to my newsletter now! 




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