My son first experienced bullying due to his Poland’s Syndrome when he was 5 and in year 1 at school. It’s a day we had always expected and I suppose compared to some we’re lucky it didn’t happen sooner, but 5 felt young and cruel to experience this. He was very matter of fact about it, he didn’t tell us straight away but once he had recalled being laughed at by his whole class for his little hand, we were heartbroken.
Instinctively we wanted to protect him, take him away from the school and home school him so he didn’t have to deal with this type of bullying, and some days I still feel like that, but ultimately I knew I had to teach my son to stand up and face the bullies head on. I needed him to know that people who bully us will not beat us.
I sought advice from adults with a limb difference and this helped a lot and was a great solace. We went to the school headteacher and she was very supportive, they dealt with the individuals involved and suggested that she gives the class a talk about Poland’s Syndrome to give them a chance to ask questions and understand it better, after all, at 5 they have very inquisitive minds. We asked my son and he was happy with this but didn’t want to be there when it took place, understandably as he is not a fan of being in the limelight.
I was really apprehensive the day the talk took place but at hometime when I picked him up it was like any other normal day. I asked him about the talk and he didn’t have much to say and seemed happy enough that everyone now knew and this would hopefully help in future. A year or so later, it definitely helped, he’s not experienced anymore bullying. He has recently said that people keep asking him questions like ‘why do you have a small hand?’ and this is really getting on his nerves, but thankfully it’s not malicious. We have come up with some witty reasons as to why his hand is small involving a convoluted story about a helicopter, we are hoping this will stop the questions. There are barely any other kids with a disability in school so I have also asked the school to talk to his class about inclusion and being different is ok. When my son started school the amount of disabled children in the school never even crossed my mind, now I wish there were more to encourage the children from an early age that we are all perfectly different in our own ways, and that’s ok.
If you have any good things your kids say to others who ask about their Poland’s Syndrome or any other good ways to cope with such things I would be really interested to know, to help us and to share with others.