How to support the child with a visible difference
One in 500 children attending school in the UK has a significant facial disfigurement, with one in 100 having some form of visible difference. Disfigurement refers to any difference in a person’s appearance which is seen as unusual. These can stem from a wide variety of conditions, illnesses and injuries, ranging from the relatively infrequent, such as Apert’s syndrome or scars from a dog bite, to the more common, such as a cleft lip or eczema. Whilst some children affected may have conditions which are associated with other SEN, their needs are usually primarily social and psychological. The biggest challenge a young person who looks different experiences is often the reactions of others to their unusual appearance.
A child with a visible difference, no matter what their age, will have had a range of experiences which are different to their peers, and these experiences often start early. As a baby or toddler, other adults may have found it difficult to interact with the child. The surprise of peering into a push-chair to see a child who looks different may mean that the adult refrains from smiling at the child and making a positive comment to the parents, such as “your baby is beautiful!”
Ben, now aged eight, was injured in a fire when he was two years old which left him with significant scarring covering much of his body, including his hands and face. Ben has experienced staring and comments over the course of his life. At four years old, he was on a bus with his mother when another mother, on noticing Ben’s unusual appearance, pulled her daughter away from him. Such experiences are likely to impact on a child’s confidence and self-esteem. The child may also suffer developmentally, struggling to obtain fundamental social skills, such as making eye contact.
When teachers first meet a child with a visible difference, it is not unusual for them to feel uncomfortable or unnerved. The relative infrequency of disfigurement is part of the problem, since teachers may be unsure of the best approach. Where should I look? Should I treat this child any differently? What should I do when other children stare or comment?
Social psychologists have found that people have a natural tendency to pay particular attention to things which are different or unexpected. Therefore, when other children show signs of curiosity, such as staring or asking questions, their reaction is completely normal. However, this doesn’t necessarily make it any easier for the child who looks different to deal with such reactions.
Well intentioned comments, such as “it’s the inside that counts” or “s/he is just the same as everyone else”, can be ineffective. In our looks obsessed culture, children are bombarded with images of what is perceived to be beautiful and so, from a young age, are likely to feel that appearance is important.
When Ben first started school, his teachers used a technique called “having something to say”. This involves giving a small piece of age appropriate information about the child’s difference and then offering some reassurance. Following this up with a question allows the conversation to move on. When Ben experienced a stare, comment or a question his teacher might respond by saying: “Ben got burnt in a fire; he’s fine now. He’s really into football. Which team do you support?” Ben himself might say: “I got burned in a fire. It doesn’t bother me, so don’t let it bother you. Have you done this maths question yet?”
It is important that the pupil and their family are involved in this process to ensure that the phrases used to describe a child’s difference are agreed upon by all. In Ben’s case, his family developed and distributed an information sheet about him, which included information about his scars. On this, the phrases which Ben and his family were happy using to describe his unusual appearance were outlined. This allowed for a consistency in the phrases used around Ben, allowing him to model appropriate responses.
It is important to distinguish between what is simple curiosity and teasing or bullying behaviour. A child who looks different may be at an increased risk of receiving unkind or hurtful comments from other children. Providing children with techniques to help them deal with negative reactions can be extremely positive. For those times when someone comes out with an unkind remark, children can learn some non-aggressive responses called fogging. If a child says: “Hey, ugly! What’s wrong with your face?”, the child can reply: “And your point is?” or “Excuse me. Is there a problem?”. Even a simple “So?” or “Whatever!” can be used. Responding in this way takes practice, preferably with a supportive group of friends, but once perfected it can be very effective. Children report that, instead of leaving them feeling powerless and humiliated, which well-intentioned advice such as “ignore it” often does, this leaves them feeling competent and satisfied.
There is a danger that a child who looks different can become overly focused on their appearance or their disfigurement. This can make it difficult from them to talk about themselves in other ways and can also have a negative impact on the child’s sense of self. This focus may, in part, stem from the increased attention a child receives because of the way they look. The experience of long periods of hospitalisation, which unfortunately sometimes accompanies visible difference, can also make it difficult for a child to see themselves beyond their appearance.
Ben’s teacher became aware that he, along with some of his fellow class mates, needed some support. She arranged a lesson in which every child made a string of paper dolls. On the first dolly, all the children wrote something about the way they looked. They then had to write another piece of information about themselves on each of the other dollies. This could be wide ranging: their likes and dislikes, their interests and hobbies, what they have done or are going to do, or information about their families or friends. But it should not relate to their appearance. By giving the children time to explore each other’s dollies, Ben’s teacher encouraged them to get to know each other and recognise what they all shared and their unique attributes. At the end of the lesson, the children in the class were encouraged to take their dollies away with them. This enabled the children to carry their own paper dolls around with them, if they wished, which could be a great confidence boost.
For a child with a visible difference, life both inside and outside of school can bring some unique challenges. Providing additional support, through individual and whole class techniques, will help to develop the children’s self-concepts and social skills, and ensure the enjoyment and achievement of all.
Emily Goldsmith is the Training Adviser in Education for Changing Faces, a charity which supports and represents people with disfigurements:
All names and personal details have been altered in order to protect identities.
This article was first published in issue 48 (September/October 2010) of SEN Magazine.