Child with visible difference: Parent’s dilemma

[DolaChangingFacesUK]

Every parent wants to make the right choices for their children. This becomes more complicated where a child has a visible difference. The following story is fictitious but very real in terms of the issues involved.

Florence's 10 month-old daughter, Paige, was born with Syndactyly a condition where some of her fingers and toes are fused together in a webbed state. In many cases this condition can be corrected with surgery, but Paige's is not one of the correctable cases. At present Paige is unaware of her difference and is a very happy, fun-loving child. Florence gets upset by the reaction of her friends who say she should always keep Paige in socks and mittens. Florence wants Paige to grow up confident and unashamed of her condition rather than feel the need to cover up all the time but is worried that Paige may be bullied by other children when she starts school because of her condition. She also wants to make a choice that Paige will be happy with when she's old enough to be aware of her visible difference.

As someone with a visible difference yourself, how would you advise Florence? What helped you, or didn’t? How does this story make you feel?

[E1878]

Hi florence thank you for sharing your story. There are a number of points in which I would like to make in response to this. First of all I am shocked at your friends reactions about mittens. Your friends should be as accepting of your daughter as they are accepting to you. If you put her in mittens that is your choice but dont feel like you have just appease society. Secondly I have been a child growing up with a visible difference my parents were fantastic due to the fact that they had a huge support network and everyone that knew them were supportive about my difference secondly as I grew up and was able to understand more they were very open about my condition. They did not shy me away in fact did the opposite let me do all the things I wanted to do growing up without hesitation. Obviously they were nervous at first but saw how quickly I flourished.

In terms of bullying she may or may not it's something that should not happen but we know even more recently that it happens all too much. I only had one incident of bullying throughout school but again if your open to the teachers, tell them it's ok to ask questions and as paige gets older she may tell people. I did a talk to my school when I moved up to high school about my condition and it answered alot of other kids curiosity.

I hope this helps you alot and that you and your family can live the life that you want.

[Cat2005]

As a person with a visible difference I would advise parents to be as open and honest as possible with their children about any visible difference. Ensure your child has plenty of opportunities to meet other people with visible differences in order for them to never feel that they're "odd" or unacceptable. I was brought up in a family that just didn't refer to my difference at all, I think because they didn't know how to deal with it. As a result, I grew up feeling completely isolated, ashamed, and unable to discuss my feelings or my experiences with anyone. I still can't talk to anyone because I've never done it before and feel ashamed of how I look. My family can't imagine what it's like to live looking the way I do so they just pretended nothing was different about me and that was so unhelpful and unhealthy. I'm middle aged now and I'm tired of seeing people's eyes drift down to my lips instead of making eye contact as they try to understand what's gone wrong there. Tired of people treating me like I'm untouchable because I don't look the way they do. Please, please, try to learn as much as you can about what your child is likely to experience and get support from Changing Faces so that, as the years go on, you can get advice on how best to support your child. I would ensure that any negative remarks are dealt with swiftly and efficiently so that your friends, and others, know immediately that their attitude is unacceptable and so that your child grows up feeling protected and confident. Don't ignore these remarks because that gives them validation and they don't deserve that. Children are so precious and deserve to grow up into confident adults without feeling inferior to anyone because of their appearance.