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



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Lionel Learns What Matters Most

Author: Julie Merberg

Roundtable Press, Inc. 2003

Available only through the National Foundation for Ectodermal Dysplasias

Inspired by children who are affected by ectodermal dysplasias, a genetic birth disorder, this story is about a cubwho struggles with being different, and discovers, that by being different, he has many gifts to offer the world.
Author: Audrey Penn, Ruth E. Harper (Illustrator)

Child Welfare League of America, 1993

ISBN# 0878685855

When Chester the raccoon is reluctant to go to the kindergarten for the first time, his mother teaches him a secret

way to carry her love with him.
Feeling Sad

Author: Joy Berry, Maggie Smith (Illustrator)

Scholastic Inc., 1996

ISBN# 0590623877

Through this interesting story Joy explains how to handle even the toughest situations and emotions.
Arnie and the New Kid

Author: Nancy Carlson

Puffin Books, 1990

ISBN# 0140509453

When an accident requires Arnie to use crutches, he begins to understand the limits and possibilities of his new

classmate, who has a wheelchair.


Rosie…the Imperfect Angel

Author: Sandra Lee Peckinpah, Trisha Moore (Illustrator)

Scholars Press, 1991

ISBN# 0962708060X

In classic fairy tale tradition, Rosey, the imperfect angel tells of a little angel who suffers from the taunts of her

angel peers and her own poor self-image. With loving guidance, Rosey triumphs and assumes her own unique place

in a family in the Land Called Below. Addresses challenges children with birth defects or traumatic injuries

experience; foretells a happy ending.


Just Like Everybody Else

Author: Jim Pierson

The Standard Publishing Company

ISBN# 0874038421

Derek’s teacher says a new girl, with cerebral palsy, is joining their class on Monday. Derek is worried. What will

Amy be like? What will he say to her? How should he act? A Saturday outing with Granddaddy helps Derek

understand that people with disabilities are really just like everybody else!
This is my Hair

Author: Todd Parr

Little, Brown & Company, 1999

ISBN# 0316692360

This short story tells children that they need to feel good about themselves no matter how their hair looks. It’s cute

and colorful and good for the younger audience.


Young Adults and Adults
Alopecia Areata: Understanding and Coping with Hair Loss

Author: Wendy Thompson & Jerry Shapiro

ISBN# n/a

This is a helpful book about alopecia areata. It is informative and helpful in understanding the disease. It is easy to

read. This book lends friendly advice about dealing with the many physical and psychological details of alopecia

areata. Treatments are discussed as well as purchasing wigs and hats.


Boys Know it All: Wise Thoughts and Wacky Ideas from Guys Just Like You

Author: Michelle Roehm & Marianne Monson-Burton

ISBN# 1885223870

Boys Know it All is a book where boys speak their piece about what it is to be a boy. Boys, ages 6-16, have written

chapters offering helpful hints for tough situations, like talking to girls, surviving siblings, and growing up male in

America. Boys and their parents can gain interesting insights into the minds of other young men. Some articles are

all for fun, while others tackle more serious subjects.
Girls Know Best: Advice for Girls from Girls on Just About Everything

Author: Michelle Roehm & Marci Doane

ISBN: 0836824520

A young female reader remarks, “This was a great book, full of samples of different kinds of writing, and good

advice on, as they say, just about everything, From babysitting to eating disorders, from the environment to

depression, this is a wonderful cant’-put-down book.” Although this book does not specifically deal with alopecia

areata, it does give advice on things that are hard to talk about, especially things in young women’s lives. This is a

good book for mother and daughter to read together.


How to Raise Your Self-Esteem

Author: Nathaniel Branden

ISBN: 0553266462

A reader writes, “Picking up this book was one of the most positive things I’ve ever done. You don’t need to have

problems or need therapy in order to benefit greatly from reading this book.” This book will help you to have more

self-esteem and confidence in yourself, in your career, in your relationships and in your dreams. This is not a book

about self-wallowing in pity or blaming others for how you feel about yourself. Branden’s message is simple and

effective. With some simple exercises, he shows you how to achieve more self-esteem and have a happier mental

attitude.
I’d Rather Laugh

Author: Linda Richman

ISBN: 0446526762

This is a very funny and poignant book about Linda Richman’s life. She describes her life, which has had many ups

and downs. A lot of Linda’s life experiences have been sad, but, like life, there are good to out weigh the bad. She

talks about coming out of the abyss of helplessness and describes the sometimes crazy and funny ways she found joy

and happiness again.
Life Strategies: Doing What Works, Doing What Matters

Author: Phillip McGraw

ISBN: 0786884592

Do you feel that you’re capable of more than what you are actually accomplishing in your life? Dr. Phil is a nononsense

writer. This is not a soft, feel good book. Dr. Phil challenges the reader to look at their life. He encourages

people to take an inventory of life and then guides them to make choices that will support a fully functioning life.

His Life Laws and Liffe Strategies will help to eliminate negative and destructive thoughts and teaches how to reach

positive life goals. Dr. Phil’s message is that people can take control of their lives



Making Every Day Count: Daily Readings for young People on Solving Problems, Setting

Goals, and Feeling Good About Yourself

Author: Pamela Espeland & Elizabeth Verdick

ISBN # n/a

This is a book that helps children face life challenges, containing 365 days of daily inspiration, affirmation and

advice. It helps kids plan for the future and learn how to appreciate their unique qualities. Each entry includes a

thought-provoking quotation, a brief essay, and a positive “I” statement that personalizes the entry.


Pulling Your Own Strings: Dynamic Techniques for Dealing with Other People and Living

Your Life as you Chose

Author: Wayne Dyer

ISBN: 066109224

Dr. Wayne Dyer has a compassionate and understandable way of helping people. He shares how we can prevent

ourselves from being victimized by others and begin to operate from a position of personal power. He teaches you

how to free yourself from your own limiting beliefs and start recognizing your own personal power.


The Blue Day Book

Bradley Trevor Grieve

ISBN: 0740704818

This book is the perfect medium for taking your mind to a positive place no matter how bad you feel. The match

between the pictures and thoughts are perfect on every page. This is a book for all ages. It will provide a refreshing

pause, so you can regain perspective. This book gives you the human condition as seen through the eyes of animals.


The Seat of the Soul

Author: Gary Zukav

ISBN: 067169507

Gary Zukav talks about the spiritual (not religious) aspects of life. He describes personal responsibility and taking

control of the way that you live and feel. This book helps to allow a person to become a better person. One reader

commented, “this is a book that allows you to grow…to understand life a little more…see it through more positive

eyes…to see others with kindness and understand others behavior even when they seem like “mean” or “bad”

people.
When Bad Things Happen to Good People

Author: Harold S. Duschner

ISBN: 038063926

This book was written to help people who have lost faith and hope to learn to cope and accept the life challenges

being offered. It’s a helpful tool to direct people who are really searching for peace. A reader commented,

“Everyone at sometime in their life is overwhelmed emotionally by a loss or other crisis…it will enable one to

endure the unbearable and keep life in perspective. This book is good to refer to anyone who has suffered a loss.


Baldy Top-An English Christmas Story

Author: Pat Wynnejones

ISBN: 0840796293

It is Christmas. The goblins under the oak tree are hurrying to finish the toys for Father Christmas to deliver, but in

the rush one rag doll is left with no hair. As Father Christmas speeds toward the village, Baldytop is jolted out of the

sleigh and left alone n a snowdrift. Will she ever find a friend? The smiling star of the night sky, a hungry squirrel,

some chattering magpies, and even the friendly hare only leave her feeling more forlorn. But then a very special

visitor comes by, and Christmas promises to be a happy one after all.


Because of Anya

Author: Margaret Peterson Haddix

ISBN: 0689832982

In this heart-tugging story of friendship, renowned author Margaret Peterson Haddix introduces readers to a young

girl with alopecia areata, a life-altering disease that affects millions of people in the US.
Alopecia Areata

Author: Janey Levy

ISBN: 1404206930

This book provides information about the history and future of alopecia areata research.



CASE STUDY: How we as parents Prepared for Caitlin’s First Day of School
We put a lot of thought into how we would present a personally sensitive subject to our child’s school. I would like to sharewith you our formula for success as we embarked on an aggressive education campaign prior to the start of the school year.
• First, we contacted NAAF for brochures and other material to better

understand alopecia areata and the need for support.

• Then, we met privately to discuss the situation with the school principal and

with Caitlin;s teacher.

• Next, we sent a letter and a copy of Caitlin’s letter to all the parents (a copy

of the letter and of Caitlin’s letter is included in this school packet).

• Then, we sent the same letter with a brief cover page to the

school staff.

• The principal then held a meeting to explain the situation to the staff

and to ask for their support.


With all preparations in place, I gave a presentation to each class in the school. A lot of material that NAAF distributes was used to write the informative letters that we sent.
Caitlin was interviewed on the TV show The Morning Show on TV3 and the children in the school watched this.
The results have been tremendous. Everywhere Caitlin goes in her school, all the

children say, "Hi, Caitlin!" And now she is famous in her school—not for being the kid

without hair, but for being the kid who is a natural on television!

Caroline, Seamus and Caitlin wish to thank NAAF for its support and are inspired to help

other parents and children who are dealing with alopecia areata.

Ideas and tips :

(adapted from www.naaf.org school pack )

Included in this section are great ideas from parents of children with alopecia areata. These ideas are “tried and

true.” They have been made extremely general so they can be readily adapted into your child/students curriculum.


Idea #1

Talk to School in Advance about Wearing Hats

If your child would like to wear a hat all day in school talk to the teachers and principal in advance so they are aware and your child will not get in trouble. Also the teachers will not call attention to your child because of it.

Note: Talking to all his teachers and the school administration is the key to making it work. They can discuss it as a group at their staff meeting so everyone is “on the same page.”
Idea #2

Hat Pass *

After getting special permission from the school you can make a “hat pass” card that your child can bring to school each day. If anyone (substitute teacher etc) question them about wearing a hat and

breaking the rules your child can show them their hat pass, no words have to be spoken.
Idea #3

Home Video
Make a short home video in which your child can tell everyone about alopecia areata and all about their likes and dislikes. If they are comfortable they can take off their wig or hat and tell everyone how it was made and how to care for it. More importantly your child can explain that he or she is a normal person and wants to be treated that way. Encourage classmates to ask questions if they want. Its better to tell children the right information than have people guessing. Your child can make the video in the privacy of your own home so he she wont feel nervous and will appear very confident.
Idea #4

Show & Tell

Prepare a poster on the positive and negative things about alopecia areata and use it for show and tell.

Caitlin did this and it did wonders for her self esteem. She brought in a selection of wigs, hats, bandanas and photos of herself through the years

. On show & tell day, our family came to the school and helped Caitlin with her presentation in

front of thirty children. The children watched a dvd about alopecia and then we talked about alopecia areata and how it makes Caitlin feel. The children asked some very good questions and Caitlin was a STAR that day! It is so true that when children understand something, they are less likely to tease another child. The posters that we made that day still hang in the classroom.”

Idea #5

Alopecia Areata: Why My Hair Falls Out Presentation

We showed the video to all the children in my daughter’s school. it’s a fantastic resource and is available on request from www.naaf.org in the resources section.



Idea #6

Ask your child’s school to hold a “Hat day “ fundraiser where every student can wear a hat or bandana and bring in a donation for an alopecia awareness charity or group.

Students can also be informed of the Rapunzels foundation appeal for ponytail donation and perhaps students could be sponsored to grow their hair for the appeal.

Educating your child’s classmates:
Being the proud parent of a child who has alopecia, It is an important part of my life to reach out to children who have alopecia areata and offer my support by helping their schools better understand how alopecia areata affects a child emotionally,

socially, and academically.


Recently I decided to educate my daughter’s classmates, a group of first class children, about alopecia areata. NAAF had already provided me with the DVD , Alopecia Areata: Why my hair Falls Out. Sharing about my daughter’s hair loss a few years ago would have caused me great emotional stress but today I have fully accepted her condition and have embraced her difference and fully understand the value of educating others and raising awareness about alopecia.
I set up a meeting with the teacher, principal, and staff to view the DVD. We decided that it would benefit Caitlin if her classmates also watched it, and if I could be present in the classroom to answer inquiring minds.
I spoke at length with Caitlin first as I feet it important to know exactly what she wanted. I felt it was also important to talk to Caitlin about what a difference talking to her classmates would make, as well as to talk to her about her fears, likes, and dislikes. I wanted to know her thoughts and concerns, like was she ready to share her condition?

Would she feel more comfortable out of the class while I discussed alopecia areata with them? Did she want her Daddy to be there?

Caitlin told me that she would rather not be there when I discussed it but that she would answer questions later.
I did ask Caitlin one favor….that she would help me pick out some photos of herself that we could share with the children.

I was concerned for Caitlin . Would being so honest with the kids in the school backfire on her? I thought. No, I knew that once they learned about alopecia and met Caitlin everything would be okay. This was one more step Caitlin had to take on her journey.

I took along a display board on which I hung photos of people with alopecia areata (of all ages),
NAAF Brochures, the DVD about alopecia, some alopecia story books and colouring pages and I and made copies of the story, "Celinda's Dance" by Lesa Fichte (which can be printed from the NAAF website and is great for teachers to read in the classroom).
In each classroom I began by asking the children if any of them had any allergies and they began to tell me about their asthma, exczema, food allergies etc. I asked them if allergies were contagious and if we could catch them off someone else and they all answered No. I went on to explain to them that my little girl Caitlin is allergic to her hair and that’s why it all fell out. I showed them some photos of her. The expressions on the student’s faces were of curiosity and sadness, and some of them even looked speechless. I said “most of you may think Caitlin has Cancer, or has had chemotherapy treatments, but this is not true. Caitlin is perfectly healthy and normal and she is full of life. She just doesn't have hairon her head,. We are very blessed Caitlin Is very healthy and happy. I went on to say
“Today we are going to present to you a video about alopecia areata. Not only does Caitlin have

alopecia areata, but she is going to be joining your class.” After the video, I talked to the

kids about how to pronounce ALOPECIA AREATA, and passed out one of the NAAF brochures.
“Today, everyone in this room will become educated on this condition. You will probably know

more than half of the doctors in Ireland at the end of this day, I would like you to go home and share this with your parents, family and friends. Your parents are going to be really impressed that you know something that they didn’t. If you or your parents have any questions, please call your school, alopecia support Ireland , or they can call me.” (I made sure to include my number on the back of the brochure).


I didn’t know what type of response to expect from this group of kids. I think I jumped the gun thinking these 6-12 year olds were not going to talk to me or ask questions. I was WRONG!
As I talked, I passed around the photo board and explained that you can develop alopecia areata at any age. “It doesn’t matter if you’re male or female, if your skin is light or dark. Just like when Caitlin developed alopecia areata at age 6 weeks . I explained that “ Children with alopecia could lose all their hair, but then could re-grow their hair too. No one knows. However, what is most important is the way you treat a person that has alopecia areata.”
“Does anyone have allergies in the classroom? You can not catch an allergy from someone.

Alopecia areata is not contagious so you can not catch it from Caitlin. Caitlins system is

responding to her hair like it is an allergy. Her body is saying NO and will not let the hair grow on her scalp (it makes it go to sleep).”
“How do you get it? There is research currently going on trying to find out the reason. Nobody knows exactly what triggers the body to reject hair growth. Researchers are trying to find the reason, an acceptable treatment and ultimately the cure. Until then, we must educate the public about it.”
“Caitlin can do anything you do! She likes to swim, skate, do gymnastics, and when she

is much older...go out on dates, get married, and have children. She is just like you. And can do the same things you do.


““Do you think Caitlin wants you to feel sorry for her? Does she want your pity? NO. Caitlin does not want this. She wants you to treat her just like any other student. You can help her by just treating her normally, and by being a caring friend.
“If you see someone that does not know about Caitlins condition giving her a hard time, staring, pointing or poking fun, you can stand up for her in a very nice and informative way, explaining the situation to that person. You will be "Promoting Awareness." Caitlin would appreciate you helping her in sharing her condition with others.” The class came up with some great ideas to help Caitlin feel comfortable with her condition. The boys were all ready to shave their heads! One student suggested scarf or hat day in honor of Caitlin! In addition, and the BEST IDEA OF ALL was that they wanted to educate the other classes in the school about alopecia areata. They could be the ones teaching the other students.

Kids together can make a huge difference, if they understand and are educated. They have great thoughts and ideas and are very willing to help if they understand. They proved it that day in honor of one of their classmates, their friend Caitlin.


I feel that it is important to be honest and up front about your child’s alopecia areata from the very beginning. The longer you wait, the harder it becomes. If you get in there and educate others about this condition, it will become easier for your child to accept his/her condition and enjoy life the way a child should.

You can make a difference for a child who is out there suffering at school. The reward is

priceless, knowing you improved the life of a child.!!

Caroline Kehoe (mam to Caitlin age 7


Sample Letter from Parents to school
Dear teachers and staff of _________ school,
My husband and I would like to take a moment of your time to share with you our concerns for our daughter _______ and her condition.
At birth _____had a full head of hair which she began to lose in the first few weeks of her life. We began to have concerns when it had not grown back by her first birthday and we sought medical advice. _______ was diagnosed with alopecia areata. Alopecia areata is a poorly understood auto-immune disorder like hay-fever, asthma and eczema and like those atopic conditions there is a genetic predisposition and no cure. Our daughter is basically allergic to her hair and that is why if fell out.
Physically _________-has always been and continues to be healthy in every way. She is a very happy and bubbly child and although she is aware of her difference she is not affected by it at this stage. In fact, she feels very lucky to be able to take off her hair and that she cant catch the dreaded head lice !! She is completely normal in every other way and takes part in all activities and sports. We have brought ________ up to have an open and positive attitude towards her lack of hair and we don’t wish to have any secrecy attached to the fact that she wears a wig.
Although Alopecia is not medically disabling, it is often very challenging emotionally. _______has been lucky so far to have a healthy self esteem and to be accepted by her friends without being made to feel different. She does experience hurt feelings from strangers stares or comments and much rathers if people ask her questions about her condition instead of speculating.
This is where we would like to ask for your help. Knowledge is power and if her school mates are aware of __________’s story and understand her condition we believe that they will be less inclined to tease or make hurtful comments. As im sure you are aware, children at the ages of 6 and up become more aware of their appearance and perhaps individual differences and we are working on building ________’s self confidence at this stage. Because we are aware that most teasing occurs because the children do not understand the condition and the emotional affects that teasing can have on a child with Alopecia, we would appreciate any help you can give in the education of your students about alopecia by explaining the situation to the different classes in the school and emphasising the importance of being supportive and caring to _________ as she gets older. We have enclosed a little information leaflet and some worksheets and colouring pages about alopecia that you may find useful. We would also like to know of any teasing of __________ so we can help her deal with it.
We would like ________ to enjoy school socially and academically without feeling different from others while also being able to talk about her alopecia openly or express how she feels if teased so it is important to us and to __________ that she is treated like any other kid in the school. She does not need any special care or attention other than making sure that teasing is not acceptable or condoned.
We hope you find this letter helpful in understanding our daughter’s particular condition and that it will help the children in the school become more aware of alopecia. Thank you so much for your time and support and for listening to our concerns. If you have any questions please do not hesitate to contact us.
Yours truly

________________________________


Sample Letter from Parents to families
To the parents of all students XYZ School,
You and your family are probably as excited as we are about the start of school. Our daughter will be attending ______________this year in First Class. She is eager for school to start, and looking forward to renewing friendships and making new friends. As her parents, we share her enthusiasm, but we also feel very anxious about a unique situation with _______, and that's why we are writing to all the parents with children at __________.
As the result of alopecia areata, _________ has lost all of her hair, including her eyebrows and eyelashes (called alopecia universalis, described as the most severe form of alopecia areata). We wouldreally appreciate it if you would take a few moments now to read this important letter and be sure to share this information with your family before school begins.
Although _________ has always been and continues to be quite healthy, she suddenly began losing her hair in __________. For over a year she has been completely without hair. She sometimes wears a wig, sometimes a ball cap, and sometimes she just goes "naked from the neck up," which can be visibly quite shocking, if you're not used to it.
Alopecia areata is a poorly understood autoimmune disorder—like hay fever, asthma and eczema— and, like those atopic conditions, there is a genetic predisposition and no cure. You can't "catch" alopecia areata; it is not contagious. When asked, ___________ may describe her condition as "being allergic to her hair," which is a simplified if not a medically accurate description. Currently there is no effective treatment for alopecia areata (universalis).
Alopecia areata affects both sexes, and all ages, but is most common in children. There is no pain or discomfort, and the overall health effect is benign. Alopecia areata is a common disease experienced by over 2% of the population The course of alopecia areata is highly unpredictable; hair can spontaneously regrow even after years of extensive hair loss. It can (and often does) fall out again.
Although alopecia areata is not medically disabling, as you can imagine, it can be very challenging emotionally. The emotional pain can be overcome with one's own inner resources and the support of others. As you know, beginning around age six children are becoming much more concerned about how others view them, how they may differ from others, and whether others might be making fun of them. Since children at this age have become so aware of individual differences, they unfortunately can sometimes be disposed to poke fun at those who don't fit their definitions of "normal." One of the most frequent problems of teasing described by children with alopecia areata is having their wig or hat

pulled off at school. Additionally, little girls wearing a cap are often mistaken for boys.


One of the reasons we have chosen ____________ is because of the school's firm commitment to teaching and upholding high standards of individual respect and dignity. We hope you feel the same way, and share our commitment, and that __________will not endure ostracism or suffer any shameful or humiliating experiences. We really need your assistance and are asking you to discuss _______‘s situation with your child, and to point out and emphasize standards of behavior consistent with mutual Respect.
Like all parents, we're eager to help make our child’s school experience as positive and successful as possible. We hope you find this letter helpful in understanding her particular circumstance, and that it will help you talk with your child about it before school begins. We are aware that this will be a new and different situation for your child to grasp. Like any new behavior pattern, it may need reinforcement throughout the school year and we hope we can count on all the families at -------------to understand this.
If we can answer any further questions, please don't hesitate to call us. In advance, thank you for your help and support.
Sincerely,
------------------------------

Sample Letter from child with alopecia
Dear classmates,
Hi !! My name is Caitlin and I am going to be one of your classmates this year in Ms. Murphy’s first class . I am very excited about moving to St. Mary’s school and joining your class. I wanted to tell you a little bit about myself. I love ballet, drama, dancing, playing moshi monsters on the computer and also arts and crafts. My favourite music is Rihanna and my favourite food is pizza !! But, there is one thing that is very different about me……. I have no hair !
I have a condition called Alopecia Areata that makes my hair fall out. Lots of people have it but no one at this school. I am not sick nor can you “catch it” . I am just like any other child and I can swim, do gymnastics, ride my bike….all the things kids like to do !!
Sometimes I wear bandanas or I may even wear my wig, but other times I just go bald !! I just wanted to let you know so you wouldn’t be surprised on my first day of school. I don’t mind answering your questions but I hope you wont tease me or make me feel sad because I have no hair. I cant wait to meet you and I am sure we will be great friends!
Enjoy the school holidays and I will see you soon !!

Your friend,

Caitlin.

Sincere thanks to :


-National Alopecia Areata Foundation

14 Mitchell Blvd.



San Rafael, CA 94903

http://www.naaf.org/site/PageServer?pagename=homepage
- Alopecia Ireland

www.alopeciaireland.ie
- BeBold Make a Difference

http://www.bebold.org.uk/dir/
-Alopecia Awareness

http://www.alopecia-awareness.org.uk/
- Helping Alopecia Trust

http://www.helpingalopeciatrust.com/

And a very special thanks to my beautiful daughter Caitlin who is the inspiration for this educational pack.

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