Information to give a nursery or school

This may be a helpful exercise, as a way of explaining your child’s visible difference to a school or nursery, and to show teaching staff ways they can support and help your child.

Language

One area to consider is the language you would like the school to use when talking about your child’s visible difference. This is also likely to be heard by your child so it needs to be in words that they are comfortable and familiar with themselves. If your child is old enough, it is worth talking all this through with them so they understand what is happening and are happy with the words being used.

Information sheet for staff

This provides the school or nursery with key details about your child. This information sheet can be written and given out prior to your child starting at their nursery or school, in consultation with your child’s head teacher (or deputy head) or other appropriate staff.
An information sheet may contain brief details of the visible difference and how this may affect your child, any special needs and how staff can help.

Here is an example relating to a new child joining a primary school or nursery:

Information sheet for Lizzie Wentworth

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’s 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, eg: ‘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 children.’

Divert: Either move the conversation on, eg: ‘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, ‘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. Some people are born with it and it means their head and hands grow a bit differently.’

Reassure: ‘It doesn’t bother Lizzie, don’t let it bother you.’ or ‘She is fine. It doesn’t hurt’

Divert: Either move the conversation on, eg: ‘Sometimes she sees a doctor at a hospital. Have you ever been to hospital?’

Or divert them with a distraction, ‘That’s a lovely picture. Is that your favourite colour?’ (And if Lizzie is nearby and aware of the conversation: ‘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 […]

Here is another example relating to a child who has developed or acquired a visible difference in secondary school:

Information sheet regarding Daisy Mbebe

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, or 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.
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, eg: ‘Do you want to join in with Daisy and her friends?’ Or end the conversation eg: ‘It’s break time now, do you want to get your coat and go outside?’

The information you share with the school will obviously be very particular to your child and their situations, but hopefully these information sheets give you some guidance.

You might also like to look at the parent’s sheet on Preparing for nursery or school
Your child can also read our Preparing for school information or you could work through it with them.

Example 3: Book bag letter for other parents

The 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, if starting a new school, 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 for advice. One parent, Julie, sought help from a Changing Faces Practitioner in drafting a letter in preparation for her son going into year one. Julie decided to adapt her letter so it was from her son’s perspective.

“There are only 5 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…”

Hi, my name is Finn and just like your son or daughter, I’m staring 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.

Example 4 Information about your child for school.

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.

Example 5.

The following letter was put together by a mother and father who sought advice from Changing Faces.

Some Information about Daisy 2S

Dear Parents & 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 Doctor’s 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 & 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 & Emma

Preparing for nursery or school

Read

Meeting new people

Read

More people are using Changing Faces services than ever before. We want to be here for everyone affected by with a mark, scar or condition that makes them look different.

We’ve made all our services, factsheets and information free for everyone. It takes time and money to do this, but we think it is really important.

That’s why I hope you’ll understand why we need to ask for your help. If you’ve found our website or services helpful, and your circumstances allow, then please consider donating. Every penny counts and you can give at www.changingfaces.org.uk/donate Thank you.