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Getting ready for school or nursery if your child has a visible difference

A guide to help you if your child is getting ready for school or nursery, exploring how to introduce teachers and staff to your child’s visible difference.

Getting ready for school or nursery can be an emotional time for all parents. If you have a child with a visible difference this can be an additional challenge.

You might be worried as your child gets older that they will start to notice that they don’t look like their peers or that other children might make comments.

This guide is here to help you if your child is getting ready for school or nursery, exploring how to introduce teachers and staff to your child’s visible difference.

Resources to share with your child

The information on this page has been written to support you, as the parents and carers of young people with visible differences. We have produced separate advice and guidance for children and young people. You might want to share the guide linked below with your child or you could read it together.

The challenges of getting ready for school and nursery

Your child is growing up – they are entering new and unfamiliar surroundings and spending more time away from you. This is difficult for most parents. You might be worried that, as your child gets older, they will start to notice that they don’t look the same as other children and that others might make comments about them at school or nursery.

When getting ready for school or nursery, it can be helpful to make staff aware of your child’s condition in advance. This way, they will have a better understanding of the situation and know how to support your child. They also need to know what to say or do when somebody stares, makes a comment or asks a question about your child’s appearance.

It is essential that staff members know how to handle curiosity from other children, other parents and new staff to support your child in taking part in social and school activities, without their difference becoming the main focus of attention.

In this video, parents of young people with a visible difference talk about the challenges their children have faced at school, and how they have dealt with these difficulties, often with support from us here at Changing Faces:

Choosing a nursery or school

It’s important to pick a school with the right culture. When you are choosing your child’s nursery or school you may want to ask specific questions about things such as:

  • Pastoral support.
  • How they manage bullying.
  • Interpersonal relationships between the children.
  • How they talk about difference.

Lots of schools use various techniques to encourage children to connect and learn about difference in an accepting way. For example, some schools now have friendship benches where children can sit if they don’t have someone to play with. It is important to understand the policies and practices in place at each of your options to ensure you make the right choice when getting ready for school.

Setting up a meeting with your child’s new school

When you are getting ready for school or nursery, contact the person who will be responsible for looking after your child. This may be the nursery manager, head teacher, nursery nurse, key worker, teacher, inclusion officer or special educational needs coordinator (SENCO). Request a meeting well before your child starts school. This allows the school enough time to make the necessary preparations.

In the meeting, it can help to share the following information. Make sure you’re prepared to do this before you go into the meeting:

  • The name of your child’s condition and how it affects them.
  • Your child’s likes, strengths and resources, as well as examples of their achievements.
  • Any medical or functional needs that your child has.
  • Any additional or learning needs that your child has.
  • Examples of how you explain your child’s difference if people are curious or make a comment. For example, “Marcy’s skin is red and itchy. It’s called eczema. You can’t catch it.”

It can also help to ask the following questions:

  • How do the teachers plan to deal with any curiosity about your child’s appearance?
  • How will they deal with teasing and bullying?
  • Do they have experience of supporting a child with a visible difference? How did the child settle in?
  • How do they encourage friendliness and inclusion?
  • Can the school arrange for a special educational needs assessment if required?
  • How will the school keep you informed about your child’s progress?
  • Would the school consider some specialist in-service training to support their staff who work with a child who has a visible difference?
  • Would the school consider helping students better understand difference by using the classroom resources on our site?

Another thing to consider is the language you would like the school to use when talking about your child’s visible difference. The language they use is likely to be heard by your child so it needs to include words they are comfortable and familiar with themselves. If your child is old enough, it is worth talking this through when getting ready for school so they understand what is happening and are happy with the language being used.

Making friends and fitting in at school

The first thing children notice about each other when they first meet is physical appearance.

Curiosity and looking is natural when someone new arrives – and we look more and for longer when someone’s appearance is different. Small children are inquisitive but often very accepting as well. The other children at your child’s nursery or school are likely to look carefully, perhaps with surprise and interest at your child. Some younger children may reach out to touch your child’s distinctive mark or feature. Others may ask a question or they might look away because they are not sure how to respond.

If these expressions of interest and visual contact are discouraged, your child is at risk of finding it harder in the long run to join in and make friends. Help your child to understand that if a small child is staring or asking a question, they are not being rude but curious. Once they have got their head round your child’s visible difference, small children in particular will often just accept it and move on.

If your child is old enough, you may want to share our guide to starting a new school for children and young people to help them in getting ready for school. If they’re too young to read it on their own, you could look at it together.

Preparing an information sheet for staff

What is an information sheet?

An information sheet provides the school or nursery with key details about your child.

It can be written and given out when your child is getting ready for school or nursery, before they start.

It should be prepared in consultation with your child’s head teacher, deputy head or other appropriate staff-members

It may contain brief details of the visible difference and how this may affect your child, any special needs and how staff can help.

Here are some example information sheets. Feel free to adapt any of these for your own child.

Information sheet for Lizzie W

Lizzie is five and will be joining us in September. She has a visible difference due to a condition called Apert syndrome. Occasionally, she may need to take time off to go to hospital appointments but generally she is fine and healthy. Please read through the following to ensure you understand her condition and are able to support her effectively.

About Apert syndrome

People who have Apert syndrome have a different-shaped head due to the plates in their skull fusing together prematurely before birth. The bones in their hands and feet will usually have fused together as well.

Please be aware, Lizzie looks noticeably “different” – you will no doubt find yourself taking an extra-long look when you first see her, and so will everyone else.

Lizzie is able to learn with the rest of the class and should be treated like any other pupil. She may struggle with some tasks that require a lot of dexterity, but she is often able to compensate for this, so do not underestimate her and work with her to explore her capacity or where she needs help.

What to say if you see a pupil staring at Lizzie

A simple way of managing curiosity is to use the Explain Reassure Divert model:

  • Explain: Acknowledge the staring and offer a brief explanation, e.g. “You seem to have noticed Lizzie. Lizzie has Apert syndrome, which means that her head and hands have grown a bit differently.”
  • Reassure: “It doesn’t bother us, don’t let it bother you” or, “Lizzie is fine and can play like any other child.”
  • Divert: Move the conversation on, e.g. “Why don’t you say ‘Hi’ to Lizzie and tell her your name, since you’re both new at this school”. Or you might divert the child by focussing them on something else, e.g. “You’re just in time to help me with putting out the paints.”

What to say if a pupil asks about Lizzie

  • Explain: “It’s called Apert syndrome, which means that her head and hands have grown a bit differently.”
  • Reassure: “It doesn’t bother us, don’t let it bother you” or, “Lizzie is fine and can play like any other child.”
  • Divert: Move the conversation on, e.g. “Sometimes she sees a doctor at a hospital. Have you ever been to hospital?” Or divert them with a distraction, e.g. “That’s a lovely picture. Is that your favourite colour?” If Lizzie is nearby and aware of the conversation, you could add, “What’s your favourite colour Lizzie?”

We are keen to do our best to ensure that Lizzie settles into school smoothly and happily. If you have any questions or concerns at any time, please contact…

Information sheet for Daisy M

Daisy has just turned 12. She has been confirmed to have a skin condition called alopecia universalis. Please read through this information to understand how you can effectively support Daisy.

About alopecia universalis

This condition means Daisy has lost all her hair on her scalp and her body. She may not have body hair for the rest of her life (although there is a remote possibility that it will regrow during puberty). It is known this is an auto-immune condition, where her immune system attacks the hair follicles. However, there is no explanation why this happens. Otherwise, Daisy’s general health is good.

Helping Daisy

Daisy is learning to adjust to her condition and says she feels comfortable with her class. However, as this is fairly new to her, she is not yet equipped to deal with other children looking at her, asking questions or making comments. This is causing her some challenges in wider school life. We would greatly appreciate your vigilance and intervention in these situations, or if questions arise at other times during school.

Daisy will learn from adult responses to the situations where anyone stares, comments, asks questions or just seems hesitant. By seeing and hearing staff consistently respond with the steps outlined below she will:

  • Understand that people are curious – and this can be handled in a straightforward way.
  • Respond with just enough information to reassure.
  • Move the conversation on in an appropriate way.

The idea is that Daisy hears the conversation, so eventually she should just “pick it up” for herself.

Managing curiosity

A simple way of managing curiosity is to use the Explain Reassure Divert model:

  • Explain: “Daisy has a skin condition called alopecia. Her hair may or may not grow back.”
  • Reassure: “She’s perfectly well otherwise – it is a condition that just develops – it’s not infectious or sore.”
  • Divert: Ask the pupil a question, “What is your favourite subject at the moment?” Or maintain the conversation but change the subject, e.g. “Do you want to join in with Daisy and her friends?” Or end the conversation e.g. “It’s break time now. Do you want to get your coat and go outside?”

Book bag letters for parents

A “book bag letter” will help other parents to handle any questions from their own children about your child’s appearance and will also enable them to respond positively to your child when they meet them.

Arrange with the school for your letter to go in the book bags of the other children in your child’s class or year group on the first day, along with any other information notices given out.

You could show your draft letter to a friend or your child’s teacher if you are unsure about the wording or consult one of our practitioners here at Changing Faces for advice.

One parent, Julie, sought help from a member of the wellbeing team at Changing Faces in drafting a letter in preparation for her son going into Year 1. Julie decided to adapt her letter so it was from her son Finn’s perspective, rather than hers or the school’s.

“There are only five pupils, including Finn, in reception class, so telling parents isn’t really an issue yet. But I may send out a letter when he starts in P1 next September… I’ll put his picture on top but write something less formal”. - Julie

Here is Julie and Finn’s book bag letter:

“Hi, my name is Finn and just like your son or daughter, I’m starting P1. I’m looking forward to getting to know them and having lots of fun together in school.

Last summer I was diagnosed with a very rare non-contagious genetic condition called cherubism. This means that my upper and lower jawbones haven’t developed properly and the bones have lots of cysts and fibrous tissue instead of solid bone. I will lose my baby teeth early and my adult teeth will not develop properly but it isn’t dangerous or painful. It also means that over time the cysts will grow and my face will change shape. I don’t look too different yet, just quite chubby cheeked and cute but this will change as I grow up. There is no treatment or cure for my condition but it should slow down or stop at the end of puberty.

If your son or daughter notices anything or asks questions about me please just explain to them that I have a condition called cherubism, I was born this way and it doesn’t hurt me. I am a very happy little boy, full of fun, energy and chat and look forward to getting to know you and your child during our time at school.

My mum Julie and dad Michael are happy to answer any questions you may have, please feel free to talk to them at any time.”

Some information about Jayden

Why is Jayden’s skin and hair that colour?

Jayden has a condition called albinism. It affects the production of melanin (a range of black, dark brown, reddish brown, or yellow pigments) in his skin, hair and eyes.

Why doesn’t Jayden’s sister have it too?

Although it is genetic and can run in families, not everyone who carries the gene has albinism.

Why do his eyes move so quickly?

It’s called nystagmus and it’s a part of his condition. Most people with albinism have this too.

Can he still see me?

Yes, but he can’t see details when they’re far away. Sometimes he uses a kind of microscope which works much better for him than regular glasses.

What treatment does Jayden have?

Albinism isn’t treated, although specialists will keep a check on the health of his skin and eyes. You may notice him putting on high factor sun cream, which your children are welcome to do with him, and he will wear sunglasses when he goes out to play, particularly in the summer.

An extra note from Jayden’s parents

In spite of Jayden’s unusual appearance, he is a normal, bright and active boy. His albinism doesn’t bother him, us or other people who know him. The world is full of different people and children are very accepting if pointed in the right direction by adults. Questions and worries should be answered honestly and anything you don’t know, please feel free to ask us.

This letter was written by a mum and dad who sought advice from Changing Faces. It is about Daisy, who we met earlier on.

Dear parents and carers

Following progression of Daisy’s hair loss over the summer holidays, we would like to let you know what is happening, in case your child or children have any questions or concerns related to Daisy, and we would like you to be in a position to answer them openly.

Why has Daisy lost her hair?
Daisy has a skin condition called alopecia universalis. Her immune system has attacked the hair follicles. Currently, there is no scientific understanding why this happens, and there are varying types of alopecia. We understand it to have been initiated by a high fever in 2012.

Does it affect her body in any other way?
Daisy’s general health is otherwise very good, and she is not on any medication.

Will it grow back?
At the moment the doctors do not expect Daisy’s hair to grow back. She may not have body hair for the rest of her life. However, there is a small possibility that it will regrow during puberty.

Is it contagious?
Fortunately, alopecia is not contagious, although this is a question that children might ask or be wondering.

Daisy continues to be a very enthusiastic, happy and active girl. She is getting on with life very normally and appears bravely accepting of the alopecia.

We have been advised that questions should be answered honestly, and this will also help Daisy grow confidently to answer them for herself. Research has shown that it is counterproductive for children to be told to not stare or ask questions when someone looks different. Being open and honest puts everyone at their ease. If there’s anything you’d like to ask, please feel free to come up to us!

Many thanks
Eamonn and Emma

We recommend viewing our other resources to help you deal with problems and concerns your child may face at school.