Poland Syndrome Support

Poland Syndrome | Bullying, School and Inclusion

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.

bullying picInstinctively 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.

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11 Responses to “Poland Syndrome | Bullying, School and Inclusion”

  1. Davide says:

    Hi Sam,

    I’m a social worker currently researching the field of chest wall deformities and developing a narrative therapy for body image, thus Poland syndrome is crucial. As you described your son’s story I imagined the burden shared among beloved ones and naturally your son. This is why therapeutic conversations that deal with these issues usually invites also significant others to participate in a process of sense-making that a person with a bodily deformity engages with. Interpretation and re-authoring of your son’s accounts on difficult or distressful lived experience, for instance, become a non judgmental and collaborative tool for both practitioner and the person to
    understand the way he feels about his body and the experience of bullying. Exploring your son’s life-world with him and sorting coping strategies by highlighting his strengths through narrative is one way to face body image concerns without pathologising them and their psychosocial consequences.
    Hope this helps, feel free to write me about your situation. If you are interested in reading more from my writings on this topic, please follow this link: https://tallinn.academia.edu/DavideTicchi

    • PIP Admin says:

      Hello Davide,

      PIP-UK have been following some of your publications. We shared one a short while ago on our Facebook page. We really want to find ways to help young children grow up with body confidence and help individuals who have already reached adulthood find a more positive outlook. We’re looking to find someone who can help us write some basic things for the website and then we hope to have a collection of therapists or other similar practitioners to whom we can make referrals. If this sounds like something you would be interested in or could help suggest some people / organisations we could contact please get in touch. Sam is the founder of our organisation and we will make sure she sees your message.

      Thanks for stopping by and taking the time to comment.

      PIP-UK Team

    • Sam - Trustee says:

      Hi Davide

      Thanks for reading and for your message, I have followed and read your papers with great interest and I appreciate the information and insight. I have to admit I had to check the dictionary for ‘pathologising’ and I am really interested to understand more about this and how it can help me and my son and others with body image. Are you UK based? Would be great to chat?

      Sam

      • Davide says:

        Hi Sam and PIP-UK Team,

        I’m also glad you found some time to read my papers.
        Yes, we share the principle of letting persons grow with body confidence rather than problem stories being told. Somehow a ‘non-pathologising’ methodology attempts to avoid an excessive focus on limitations, either aesthetic or functional. The underlying idea is that while a person faces surgical or non-surgical correction and develops his/her coping skills, alternative stories or sub-plots (e.g. ‘playing piano or excercising’) may emerge in therapeutic conversation to be performed in lived experience. This implies we re-author a non-pathological/stigmatised account of our life with Poland syndrome, thus becoming more aware of our multifaceted ‘identity’ and they way we situate ourselves in the context where we live.
        I am not based in UK currently, but I will often travel to Scotland from September onward. This would be a great chance to meet and chat.

        Keep in touch also by email,

        Davide

  2. Sam says:

    This is heart wrenching for me. I am also Sam, and my son has Poland’s. He had the same experience in reception, and then again in year 1. I went through the same feeling, emotions and ideas you did. My initial thought was to pull him out of school and home school him in a cushioned bubble forever. I think you handled it beautifully. Our stories about his hand surgery scar involved sharks! Now he is nearly 10 and into x-men, he likes to think he is a mutant who has special powers. My new worries are secondary school 🙁 I’m UK based and on Twitter, FB etc if you ever want a chat

  3. Sam - Trustee says:

    Hey Sam, great to hear from you and thanks for saying I handled it well. Its so hard to know if you are doing the right thing, so that means a lot. I love that you have a shark story, may have to suggest that one to George, he is mad about sharks. Love that your son has now adapted it to X-men! Boo to new worries, we’re not their yet but I can imagine the concern over the big change, new people, new bullies, new worries, but if your like me and it sounds so, we always find a way! I would love to get in touch and I will look you up on fb and twitter. Cheers Sam

  4. Pam Barnes says:

    Hi Sam,
    I just wanted to say, as a 62 year-old woman with PS AND a primary school teacher, that small children generally do not mean to be cruel in situations such as that experienced by your child. They are naturally curious and, being so young, do not have the social “filters” we adults use when encountering people with physical differences. It may seem as if they are being cruel when actually they are just wondering and don’t really have the skills to do so in a polite way. I have much experience to share as having been a child with a “littlehand” and as a teacher of small children, so don’t ever hesitate to contact me with questions or concerns.

    I remember once, long, long ago as a second grader in a brand new school, sitting down to lunch with a sea of new faces staring at my littlehand. I put it under the table to hide it, and the kids all bent down and looked under the table!!! I then put it smack down on the table and said “Go and have a good look” and that was the end of it. From that day forward no one ever mentioned it. I went on through school in the same way everybody else did, with some success and some hardship along the way.

    As a teacher of 7 and 8 year olds for over 25 years, my littlehand is the very first subject on the very first day of school. I show it to them, explain what it was like when I was a kid, let them touch it, hold it, and whatever. I demonstrate how I can reach things that others cannot, and how the littlest finger on my littlehand is PERFECT for scratching inside my ear or nose ( I know what you’re thinking, and you’re right….LOL). That first day they are all scrambling to be the one who gets to “hold the teacher’s littlehand” and then I don’t hear another word about it. After that, I’m just their old, fuddy, duddy teacher, Mrs. Barnes.

    • PIP Admin says:

      Hello Pam,

      Thank you for sharing your thoughts with us. Sharing experiences really helps and it’s especially useful to hear from a teacher. We’ve let Sam know you’ve commented. We’re sure she will wish to respond with her personal thanks as well.

      PIP-UK team

    • Sam - Trustee says:

      Hey Pam, thank you so much for reading our site and taking the time to reply. Its really wonderful to hear from your perspective as a lady with PS and a teacher, I think its suffice to say you have the best outlook, from being that kid and now teaching those kids. I’ve just read your words aloud to my husband and its really made us both smile. When its your child its really hard, especially when its the same kids over and over and my son does not like any attention being drawn to it. I love the way you smacked it down on the table, I would love him to have the confidence to do that!

      • Pam Barnes says:

        Dear Sam & Sam,
        I truly understand your concerns, being a parent myself with kids who faced challenges of their own growing up. Now they’re adults with their own mostly happy and content, but also imperfect, lives.

        I hear your worries about adolescence and, must confess that it is the hardest time for a PSer, not so much becaue of the littlehand, but the emergence of the chest wall “abnormalities”. Boys have a special situation in that they cannot always hide their anomaly, where most girls can.

        Of course, I don’t want to trouble you about future obstacles. Those you and your boys will deal with in time. I just want to say that the very best thing you can do right now for your child is to expose him to experiences where he can be successful on his own. Encourage him to try something new that will take some diligence and hard work. There’s nothing better for a child’s confidence than knowing that he alone faced a difficult task and, through his own work and determniation mastered that task. It can be anything that he wants; wanting to do it is key.

        I remember as a young girl of about 4 or 5 wanting to learn to tie my shoes. My grandmother showed me using a bow on a big stuffed animal (a big, pink poodle actually). Then she left me alone to figure it out. I recall working so hard, over and over to tie that bow (remember, I do have a littlehand…) When I finally mastered it, I felt so wonderful and accomplished that I wanted to master more things(must’ve made an impression as I can still remember it at age 62…).

        I think, that kind of impetus is what made me confident enough to just put my hand out there to my new second grade classmates that first day. I learned to love a challenge, and, as I mastered one thing after another, I became more and more able to take on the challenges of everyday life with PS. Give your boys the opportunity to do things on their own and it will open up all kinds of possibilites for now and the future.

        And thus ends my “prostheletizing” for today… 🙂

        • Sam - Trustee says:

          Pam, your posts have been great and I really appreciate your insight as a parent and someone with PS. I will definitely be giving him some more tasks to face alone to help him build that confidence, he is the perfect age to take that leap and already relishes new things and I will try and harness this when there’s a PS challenge too. If you would like to write an article for our website around top tips for parents around confidence building and perhaps the adolescent years, we would love to have your contribution. Drop me a line at sam.pipuk@gmail.com. Thanks Sam

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