A project promoting alopecia awareness In the primary school classroom By Caroline Kehoe



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Alopecia Awareness

School Pack



Knowledge is power !!


A project promoting alopecia awareness

In the primary school classroom

By Caroline Kehoe
Special thanks to the National Alopecia Areata Foundation

www.naaf.org

Dear Parents, Teachers and School staff


It is a mission of the Rapunzel Foundation to ensure that families and

schools have access to the resources that they need to help promote alopecia areata awareness in the classroom. It is our responsibility to provide this information to you as it will help enrich the curriculum of your school and serve as an aid in giving students with alopecia areata, or other special needs, a positive and nurturing school experience.


In the classroom when teachers are planning their curriculum, meeting the special needs of children can be challenging. When challenges are presented, it can be discouraging when resources are not readily available. The purpose of the School Packet is to provide useful information to help both teachers and parents, as it offers ideas about lesson plans, books to read, as well as feedback and insight from other teachers and parents.
As you’re planning, it is important to consider the level of openness and maturity of the students. Challenges for a child with alopecia areata do vary, so take into account what particular struggles they face; it is also important to let the child lead at a comfortable pace. You can implement discussions about alopecia areata, or self esteem and differences, into the classrooms of students both younger and older than the child with alopecia areata; with a year more maturity and sensitivity, the older students will serve as advocates to their younger classmate, and the younger students will use their innocence to ask important and poignant questions regarding alopecia

areata. All the students will learn a valuable lesson in humanity.


Once again, I hope you use this valuable aid when planning your curriculum for a class with a student who has special needs, alopecia areata or other.
I would like to take this opportunity to acknowledge and sincerely thank the National Alopecia Areata Foundation (www.naaf.org) for allowing us to base our educational pack on their very successful school pack and for allowing us to adapt some of their information for use in this pack.
Sincerely,
Caroline Kehoe
Things to Know About Raising a

Child with Alopecia Areata


To Help Cope
Paediatric dermatologist Nancy Easterly suggests some tips on helping children deal with alopecia areata:
• Tell your child that it’s OK to feel bad, to cry. But, after that, they need to move on and do what makes them most

comfortable.




  • Explain: “Maybe you have no hair, but we all have things to cope with in life. Other kids have other problems. It may be a little harder for you, because everyone can see your problem, but it will help you to be a stronger adult. It will make you a better person, because you’ll understand how other people feel when they have things go wrong.”




  • If it is difficult for you to say these things to your child, don’t be ashamed to seek counselling in helping your child cope.




  • Children with alopecia areata need to realize exactly what’s going on in simple terms. Parents may think they’re sparing the child by not discussing the problem, but in fact, they’re probably creating much greater apprehension by avoiding open discussion.

• Teachers and parents need to remind other children that teasing is inappropriate and educate the children about alopeciaareata.



On Being a Parent
My Courageous Daughter Caitlin

By Caroline Kehoe

Wexford, Ireland
My daughter has had a permanent form of hair loss called hypotrichosis since she was a small baby and I would like to introduce her to you. Her name is Caitlin Ellen Kehoe. and this is her story.
In 2004 we brought home our beautiful baby girl Caitlin. She had jet black hair , big eyes and sallow skin. Caitlin’s hair began to fall out almost straight away and by the age of six weeks she was totally bald. We weren’t at all concerned as most babies lose their hair but when it hadn’t grown back by her first birthday people began to comment on her baldness. We had never heard of alopecia areata, so the doctors did lots of tests for other diseases and possible reasons for her condition. A paediatrician in our local hospital thought it might be a very serious illness called ectodermal dysphasia and this scared the life out of us as it would mean our perfect little girl would have developmental and mental problems. We spent months crying every day until we had our consultation with the head dermatologist in Ireland - Dr. Alan Irvine, who told us it definitely was not ectodermal dysplasis and that other than having no hair on her scalp, Caitlin would be perfectly healthy in every other way. It was actually a massive relief to hear it was a permanent form of alopecia. After they finally diagnosed alopecia, we learned there was no known cure. At the same time, we found out the disease would not disable her in any physical way.
We didn’t know how we would help her cope emotionally. So we focused on just what the doctor said — that she could do anything in life that she would like to do. We decided not to treat her differently or make her feel embarrassed or challenged by her condition. In her presence, we told our family and friends that, while Caitlin might never have her own hair again, she could become anything in life that she chose to become; she could go to school and grow up to be a happy, healthy young woman.

That was when my search for wigs and support began and I have to say it was a very lonely and isolating journey. I quickly realised that there was very few options available in Ireland at that time and even less options for children with hair loss. I spent hours and hours in front of the computer every night researching wig caps and hair types and trying to find another family in the same boat. I longed to talk to another mum in the same situation but there was no support groups at that time like there is now. As parents we felt very alone and had no where to turn for support.


The lowest point for us was when she was aged 2-3 as people would stare at her as we walked down the street. Some with pity in their eyes as they assumed she was sick with cancer and others stared at her as if she was an alien and nudged their friends to look. I spent my time searching peoples eyes to see how they were reacting to my little girls lack of hair and it began to eat me up inside. I had a constant knot in my stomach every time we went outside and I felt so powerless as I couldn’t protect my baby from peoples ignorance.
Caitlin got her first wig ( a dermalite ) when she was 3 years old and it really suited her and she got used to wearing it straight away. Shaving off the few strands of hair that she had proved to be a very upsetting experience and I grieved for the hair she would never have. Children’s heads grow very quickly so we had to order a second dermalite wig after a few months and this arrived a few months later. They are custom made to fit the Childs head perfectly and are made using European quality human hair and cost about one thousand Euro. We were so happy with the first one that it never crossed our minds that the second one would be any different. The second wig was ill fitting, frizzy, bushy and dry. I burst into tears when I saw it at the wig salon. Even more upsetting was the reaction of the owner of the salon who specialised in wigs for necessity wearers !! I was told that Caitlin’s head must have changed!! Baring in mind that the wig was far too big for her I explained that her head couldn’t have shrunk !! I was in a state as Caitlin was due to start big school in a few weeks time and these wigs take about 4 months to make. It was then we were brought down to a local clothes alterations shop where the woman who owned the wig salon took the wig off Caitlin’s head and asked the lady at the sewing machine to sew a seam in it to make it smaller !! I was in such shock that I didn’t even stop this happening to my little girl as she stood there humiliated in front of strangers. Needless to say the wig was still of no use to Caitlin and we were told by the wig salon that they wouldn’t be dealing with children for dermalite wigs anymore and off we had to go home. I couldn’t stop crying and didn’t know what to do. I had to report the wig shop to the HSE to get a refund which we eventually received with a snotty letter. Its an experience that should never of happened and I hope it never happens to anyone else.
Thankfully I happened to find a representative in Dublin ( Audrey O Hara of Freedom wigs) for a special type of suction wig that are custom made using a silicone base and excellent quality human hair in New Zealand. A plaster mould was made of Caitlin’s head and this was sent off to New Zealand and four months later a fabulous suction wig arrived in Ireland for Caitlin. That day our stress melted away. I’ve never seen any wig so realistic. The scalp of the entire wig is tinted to match her skin colour and she could wear her hair up or down. Caitlin never had to worry about her hair falling off as the suction is secure and can only be removed by inserting a finger to break the seal. Caitlin can swim, tumble, do gymnastics, you name it ! , in her wig.

She became active in many school and after school activities and programs. She has always amazed me by being confident and happy in her own skin . She . Her friends not only accepted her, but never treated her any differently.


But you know, there are always those who like to hurt others to get attention. And where Caitlin’s hair loss was concerned, they made no exception. One day in school a boy in her class pulled off her bandana that she sometimes chose to wear and laughed at her. I had not gotten a call, so I didn’t know anything. Later that evening she told me that she was upset, not that everyone had seen her without a head covering, but because the boy had taken the choice of when to show her head away from her.

Caitlin has since moved school for logistical reasons and we educated each class on alopecia by showing them a DVD entitled “ alopecia-why my hair falls out“, I did a talk with the kids in each class and the response was fantastic. Knowledge is power and if children understand what alopecia is they tend not to tease or make hurtful remarks, In fact they are supportive and caring and treat her like any other child. We also sent a letter the parents of each student explaining to them about Caitlin’s condition and asking for their support in educating their children about it. Caitlin wrote a lovely little note with photos of her with and without her wig to each student in her class which we posted the week before she started in the school

She described her condition and how and when her hair loss happened, and she explained that alopecia areata is not like cancer, that she can do anything anyone with hair can do. She said that the only time her condition hurt was when people talked about her, instead of to her. She said, “If you want to know why I don’t have hair, just ask me, then let’s get on with other things.”
She also said “This is me, but it’s not all of me. I am many other things too. I’m also a happy person and I like learning new things and being with my friends, just like all of you. But you won’t know that if you only look at me and think about the loss of my hair.”
I believe it’s important for parents Caitlin has not had a problem in school again. She has made a lot of friends, and a lot of young people have learned about alopecia areata and its limited effect on a productive life.

We have met so many wonderful people through the help of Liz Sheil , the founder of Alopecia support Ireland and have a wonderful network of support. We go to the children’s alopecia camp run by BeBold.org in the Uk every summer and Caitlin has made many new friends with alopecia.


Over the years I watched her gain self confidence. She has appeared in the local newspaper and on TV as a spokesperson for people with alopecia areata. I’m so proud of her. She has come a long way in dealing with not having hair .I believe it’s important for parents to feel that their child is okay just the way he or she is, hair or no hair. Children’s opinions of themselves are shaped by how they think their parents feel about them. If parents even hint that their child is damaged or is not quite the way he or she should be, the child will adopt these same feelings. Everyone is unique, different from one another in some way. To feel that everything would be okay (or better) if only the hair would grow back sets up a possibility for long- term disappointment. If the hair grows back, it’s wonderful, but you never know if it might fall out again. To count on something so unpredictable for self-esteem could be damaging. I suggest finding (or starting) a local support group and

attending with your child. We have attended support groups and summer camps. It was meaningful for Caitlin to meet other people with alopecia areata, mostly adults, but also children, carrying on normal lives.


Today, Caitlin is a healthy 7 year old, a beautiful, strong, confident little girl who had the courage to take her wig off on national TV as she talked about alopecia to help others with the condition.
She is a very loving child, who is loved and respected by her friends, her family, and classmates. She made me laugh the other day when she said “ God made only a few perfect heads…..and the rest he covered with hair !! “
I hope this story helps other young people see that their life is all up to them, as it should be.
Alopecia areata doesn’t have to change a thing, if you don’t want it to. 

Caroline Kehoe

Children & School Adapted from www.naaf.org
When children return to school, there’s a lot of playing, yelling and running around, and lots of exciting new things to learn. A child who has alopecia areata may not join in the general excitement. What can you do to support the child who has little hair, who must face the daunting challenge of coping with what awaits them at school?
Tiny Ones

Little ones who are in creche or preschool, really aren’t affected by having or not having hair. At this age they adjust readily to whatever is going on. Hair is insignificant. The significance of not having hair, however, resides in the parents and other adults.


As parents, you’re faced dealing with other adults who make remarks, as well as your own feelings of pity, sorrow, guilt, and/or embarrassment that you take on for your child.
How you approach alopecia areata in the family will make a very big difference, especially for teacher’s because they tend to adopt similar approaches in the classroom. A brief explanation to the child’s care-taker would also be very helpful.
Pre-school and Early Primary

Pre schoolers and Infant class children face comments from peers, who are usually just curious.


Talking to both the principal and the teachers will ease curiosity, and soon no one will notice whether or not your child has hair.
A parent can’t ignore a child’s pain, but to buy into it will lay the foundation for the child to use their disease to escape future situations he or she doesn’t want to handle or face.
Older Children and Teens

Beginning in First class children become very aware of their appearance and they begin to judge

themselves.
This reaches extreme in teen years when every hair has to be in place, the clothes have to be just right, etc., all just to make a merely acceptable human being. These are the painful years during which a child either develops strength of character or refuses to rise to the challenge.
There are many positive ways to provide support to children at this age:

o Always consult the child about how he or she would like to handle the problem. A child almost always has some idea about what would solve the problem. If possible, follow through with their desires.


If not, it’s important to explain why and help the child seek alternatives.
o Encourage the child to take up activities in which they can excel. From sports to science fairs, your child will be able to find something he or she enjoys.

o Encourage your child to receive support from class members, teachers, coaches, etc.


o Keep loving, accepting, and talking and listening to how a child is thinking and feeling about him or herself. Your efforts will eventually pay off!

Self-Esteem & Students



Adapted from www.naaf.org
Encourage Youngsters to Combat Teasing With

Witty Remarks

Reprinted from the Baltimore Sun

Statement from reader: Don’t advise kids who are being teased in school to ignore it. It wrecks a kid’s self esteem. Kids used to call me ugly and stupid. It isn’t until now, after almost 2 ½ years of therapy, that I’m beginning to get my self-esteem back.
Our professor in child psychology says kids should be taught to stand up for themselves, and come up with clever retorts for the teasers. I wish I’d known that when I was 13! If I had won a few of those teasing bouts, I would have kept a much higher opinion of myself. I was lucky. When I got older, I did start sticking up for myself. Some

people never do. Encourage kids to respect themselves, or they’ll become a population of doormats.



Answer from Elizabeth: Great advice. Clever retorts are much more effective than an angry or hurt response. It’s not always so easy to do, but with practice, and coaching from sympathetic adults, every child can learn some kind of defense like this. Parents and teachers should be on the lookout for students who need this kind of help.

Self-Esteem and Students
Tips for Parents and Teachers

The school year can pose a particular problem for children who have alopecia areata. It is a time of life when school-age children and adolescents are especially sensitive about their appearance. An individual’s school experience can have a profound effect on the socialization process. Since most children are unfamiliar with alopecia areata, many are uncomfortable with interactions. Teachers can help the child with alopecia areata to cope and can help peers to be sensitive and understanding. How you feel about yourself is, in part, a reflection of how you think others view you. As children grow and develop a greater sense of who they are, it is important that acceptance and integration exist for them. There are various factors that shape and affect self-esteem:


The respect, acceptance and concern of significantothers. “Significant others” change from family members for the very young child, to teachers for the school-age child, to peers for the adolescent. Giving others the opportunity to ask questions and to voice their concerns develops empathy, understanding and ultimately, acceptance.

A history of successes. By encouraging recognition of the positives, children can form a basis in reality for self-esteem. Children can be “steered” towards experiences that are likely to be successful, in order to enhance a positive feeling of self-worth.

Values and aspirations. The more successes we have, the higher our aspirations and expectancies of what we can achieve. People who have overcome their physical limitations can provide positive role models. Encourage the child’s expression of thoughts feelings and dreams.

Problem solving. Teaching problem solving skills increases the likelihood that a child will feel a sense of control over life. Difficult situations can be viewed as learning experiences, rather than as a devaluation of self.


These ideas may be used as a starting point by parents and teachers inside the classroom and in the community. Most important is that the focus be creativeand interactive. Remember that each child is an individual.

Strategies for Teachers to Use to Help

Raise Student Self-Esteem

Adapted from www.naaf.org
• Use student names

• Have conversations with every student

• Provide multiple ways for students to be successful in your class

• Display student work

• Give each student a responsibility in the classroom

• Provide opportunities for student work to be judged by external

audiences

• Take time to point out positive aspects of your students’ work

• Never criticize a student’s question

• Take time to help struggling students understand the material

• Try to get to know about the student’s life outside of school

• Ask students about their other activities (ex. “How was the soccer

game, Natalie?”)

• Help students turn failure into positive learning experience

• Encourage students to take risks

• Provide opportunities for students to make their own decisions

about certain aspects of your class

• Provide opportunities for students to work with each other

• Don’t make assumptions about student behavior

• Allow students to suffer the consequences of their behavior-don’t

be overprotective

• Allow students to explore options in different situations

• Celebrate your student’s achievements, no matter how small

Recommended Reading

Books to Promote Self Esteem and Understanding in the Classroom
The Girl With No Hair: A Story About Alopecia Areata (Health Press for Kids) [Paperback]

Elizabeth Murphy-Melas (Author), Alex Hernandez (Illustrator)

Reading level: Ages 4-8
Paperback: 32 pages Publisher: Health Press NA Inc. (NM) (February 3, 2003) Language: English ISBN-10: 0929173406 ISBN-13: 978-0929173405

Kelly looks back at her years of learning to live with alopecia areata, a disease which causes hair loss. This light-hearted story follows her from diagnosis as a small child, to coping with the social and emotional implications of her condition, to gaining the understanding and acceptance of her peers and teachers.

Princess Alopecia

Author: Yaacov Peterseil, Avi Katz, Illustrator

Pitspopany Press, 1999

ISBN # 0943706262 (Hardback)

Princess alopecia is the first picture book aimed at young children with alopecia areata and their friends. The story

line, supported with colorful illustrations, details the physical development of alopecia areata and the emotional

roller-coaster ride for the Princess Alopecia. The book provides an excellent way to introduce and explain alopecia

areata to young children and may encourage children to talk about their feelings and thoughts on hair loss.


The Princess Who Lost Her Hair: An Akamba Legend

Author: Tololwa M. Mollel, Charles Reasoner (Illustrator)

Troll Association, 1993

ISBN # 081672816X

This story accurately reflects alopecia areata. The book is based on an East African legend about a princess who was

very proud of her hair but lost it in a gust of wind. This book could be used as a spring board to discuss alopecia

areata with young children. ***Winner, 2000 Gold Triangle Awards***
The Paper Princess

Author: Elisa Kleven

E P Dutton, 1994

ISBN# 0525452311

This is a classic lost and found story but for children with alopecia areata it has an added dimension.
Elmer

Author: David McKee

Thomas Nelson Publishers, 1991

ISBN# 0688091717

Elmer the elephant has bright colored patchwork all over. No wonder the other elephants laugh at him! If he were

ordinary elephant color, the others might stop laughing. That would make Elmer feel better, wouldn’t it? The

surprising conclusion of David McKee’s comical fable is a celebration of individuality and the power of laughter.
A Button in Her Ear

Author: Ada B. Litchfield, Eleanor Mill (Illustrator)

Albert Whitman & Company, 1976

ISBN# 0807509876

A little girl relates how her hearing deficiency is detected and corrected with use of a hearing aid. It’s a universal

lesson in difference and compassion.


Where the Sidewalk Ends

Author: Shel Silverstein

HarperCollins, 1974

ISBN# 0065256672



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