Let's Face It: Parent/Educator Resources

This section contains a wealth of information for parents and educators. There are special sections dedicated to building self-esteem, resources for teenagers, hospital stays, teaching about difference, etc.

Parents and Educators we urge you to introduce yourselves to the Child Life Specialist in the medical center where any child, infant, or teen you care for is having medical care.

These are professional members of the hospital staff. They have had supervised clinical training and experience in just how to prepare each child for each procedure. Many families with children with craniofacial needs say they just could not get through their hospital stays without the interventions and skills of the Child Life Specialist.

They are often in charge of the "play rooms" so we urge you to see how they use play as the best way to honestly and professionally see what the child understands and feels.

We urge you to make sure you have at least one Child Life Specialist as a friend and part of your support system for this journey.

BOOKS, VIDEOS, NEWSLETTERS, ETC.

"We learned that there is nothing more important you
can do for a child than loving, caring, and supporting them."
From a letter to the editor of the National Fathers Network.

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Ability Online Support Network
Since 1991, Ability Online has been linking chronically ill children around the world! A computer network designed to enhance the lives of children and youth with disabilities or illness by providing an online community of friendship and support.

Amazing Grace
Mary Hoffman has written a beautiful book about looking "different." Ages 6-10.

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Band-Aides and Blackboards
Joan Fletias, a nurse and nursing professor at Fairfield University in Connecticut, has created and sustained this outstanding web site for children who are growing up with medical problems. The site is designed to let us hear the children's' narratives and gain insights into their lives. A great teaching tool for all. If your child or a child you are working with is living with future or present medical care do have them visit and become part of this focused high-quality web site.

Boredom Blasters - Hour & Miles of Games & Activities to Make Time Fly
By Susan Todd. Good for long trips to medical centers or for hospital stays. "Strap yourself in for some fun, It's take off time." This very original and creative paper back has over 77 games and ideas for one person or the whole family. Ms. Todd has marked games if the game (or a variation) doesn't have a winner or loser. These games often avoid arguments and can be the most fun. Ages 7 and up. Child Life Specialists take note!

Building the Healing Partnership - Parents, Professionals and Children with Chronic Illness and Disabilities
By Patricia Tanner Leff, M.D. and Elaine Walizer. A book that educates, invites change and promotes personal growth for all of us who care for ill children. Welcome gift for medical personnel and parents. Discounts available.

"As any parent of a child born with a facial difference knows,
life can be a challenge. Socially, financially, and emotionally.
There are turns and twists in the road that none of us expected to encounter when we dreamed of becoming parents. But
somehow, through it all, we survive... We adapt and we
become the parents our children need. And through the process,
most of us become more complete and more compassionate
human beings."
--Chris Fradkin, father of a child with hemifacial microsomia

Child Care Information Exchange
This organization is dedicated to caring for the caregivers of our children. Their magazine reaches over 234,000 child care centers. One of the books they offer is Alike and Different: Exploring our Humanity with Young Children, edited by Bonnie Nueglbauer. The chapter "Talking About Difference Children Notice" is full of wisdom for all of us who care for and work with children.

Child Health Alert
A monthly newsletter full of up-to-date pediatric health "alerts." Contact their office for a subject list of all articles. Product recall is a regular column. Child Health Alert is edited by Allen M. Mitchell, M.D. and has a high-powered medical advisory board.

Paula Mitchell, Publisher
Newton Highlands, MA
(781) 239-1762
E-mail: alertus@attbi.com
Web: http://www.childhealthalert.com

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Children's Medical Ventures
A beautiful catalog of resources for giving premature babies as comforting a life as possible. Products are developed by families and NICU caregivers! Special nipples for feeding, educational books, sleeping aids and more are all here.

The Don't Laugh at Me Project (DLAM)
Thanks to Christine Lemmo for introducing us to this powerful resource. The Don't Laugh at Me Project is dedicated to transforming our communities into compassionate, safe, and respective environments for children. Founded by Peter Yarrow of Peter, Paul and Mary, the curriculums are creatively designed for year-round social and emotional learning (SEL) and character education. Thanks to the generosity of their supporters, Operation Respect distributes the DLAM programs free of charge. Congress has recently endorsed this program by declaring it a national resource for combating teasing.

Family Voices - A National Coalition
Speaking for Children with Special Health Care Needs
State representatives, National Voice for Health Insurance, etc. A wealth of information.

Go Ahead and Stare
A beautifully written article in the July 2001 issue of Parents magazine (page 33-34, check your library). Jeanne McDermott, author of Babyface, articulates her powerful parenting skills with her son who was born with Apert Syndrome.

Guide My Feet
By Marian Wright Edelman. This is billed as "Prayers and Meditation for Our Children". Here are prayers and meditations for parents and others who strive to instill values of faith, integrity and service in our children at a time when these values are threatened by commercialism and violence. Creative, comforting words of the Ms. Edelman's and many others.

Healthy Kids Now
Children's Health Insurance Program
Sponsored by the White House, National Governors Association, etc. Learn how to get health insurance for children. Their web page offers state-specific information on who is eligible and how to enroll.

(877) 543-7669
Web: http://www.insurekidsnow.gov

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I'm Like You, You're Like Me - A Child's Book About Understanding and Celebrating Each Other
By Cindy Gainer. This wonderfully illustrated book can only enrich all who read it. Designed for preschool to grade three, the children are coached by the comforting language and the colorful illustrations to think about all the many parts of our lives with each other.

It’s Okay to be Different
By Todd Parr. Mary Hassler, mother of Lisa, who was born with Apert Syndrome, alerted us to this delightful children’s resource. She says, "The book has vibrant illustrations and very simple words that can be used effectively to generate discussion about all sorts of differences. My 4 and 6 year olds love it."

Jessica’s X-Ray
By Pat Zonta. We welcome this 28-page paperback. Ms. Zonta's gentle, inquisitive prose is complemented by the comforting, detailed art work of Clive Dobson. The book includes six real x-rays that show the different kinds of body imaging that are done in hospitals! This book would be just right for children having their first x-ray or for those needing repeated MRIs, CAT scans, etc. Child Life Specialists take note.

Kids Just Want to Have Fun!
What's the Difference? (video)
These are tops! Upbeat and thought-provoking videos designed to support children and teens with physical differences and educate their peers. They focus on differences rather than handicaps or disabilities.

Kids Random Acts of Kindness
Forward by Rosalyn Carter, Introduction by Dawna Markova Ph.D. Children from around the world in their own words and handwriting tell us about random act of kindness. George, a 6th grader says, "To me a random act of kindness means in your own special way doing something that makes the world a better place. I think if everyone would commit themselves to doing a kind act the world would run a little smoother".

The Klutz Catalogue
Creative games and activities for children. Two favorites are: The Book of Classic Board Games and The Amazing Book-a-ma-thing For the Backseat. Thousands of miles worth of hands-on games and activities.

The Maternal and Child Health Library
The Maternal and Child Health Library is a virtual guide to maternal and child health information. It offers a wide variety of electronic resources, including databases, publications, resource lists, web links, the MCH Alert (our electronic newsletter), and other resources developed for health professionals, families, and consumers. The MCH Library is located at the National Center for Education in Maternal and Child Health (NCEMCH) at Georgetown University.

Nancy B. Miller, Ph.D.

Nobody's Perfect - Living and Growing with Children Who Have Special Needs
A Parent's Pocket Support Group. Welcome gift.

Publisher: Paul H. Brookes Publishing

Everybody's Different - Understanding and Changing Our Reactions to Disabilities
By reading this paperback, all of us, with or without difference, will come to a deep understanding of this important issue. We predict that this book can change how a teenager or older person with a facial difference reacts to being stared at. Excellent for any educational program on differences.

Publisher: Paul H. Brookes Publishing

Parenting Challenges - A Survival Guide for Parents With Special Needs Children
A welcome, well-written article by Betsy Olds, whose son was born with Hemifacial Microsomia. For a copy of the article, send a SASE to Forward Face: The Charity for Children with Craniofacial Conditions or to Let's Face It (address at bottom of page).

Parents Guide to Protecting Your Children in Cyberspace
This paperback by Parry Aftab is receiving rave reviews from "old time" users of the Internet. Clearly this well-written guidebook would be a welcome gift to any family. This book is important to all of us using the Internet.

Partners, Becoming a Partner on Your Child's Health Care Team
BC Children's Hospital does it again! This outstanding five part self-directed teaching program is by parents for parents. Video and booklet teach the skills to become true partners.

Pen Pal Program
Children (ages 5-17) who have any disability are linked by this carefully run international Pen Pal Program. Children are matched by age, gender, illness (chronic or life threatening) and are guaranteed to be matched with a child out of their state or country! Medical centers, parent libraries take note and order multiple enrollment cards for patients to take home from office visits!

Preparing Children to Visit the Burn Unit and
Family Learns Lessons in Coping from People and Animals
These two important articles by Kathy Edwards were in the December 2001 issue of The Phoenix Society’s Burn Support News. Well written, upbeat reporting about such subjects as "to visit or not to visit" and the power of "animals and people" in hospital visits. Wisdom from families and Child Life Specialists. For copies, send a business-size SASE to Let’s Face It (see address below).

Remote Control Childhood? Combating the Hazards of Media Culture
Diane E. Levin's 184-page paperback provides effective strategies for minimizing the media and Internet cultures heavy doses of violence, stereotypes, commercialism and no-brain entertainment that bombard our lives. Wonderful gift.

Simplify Your Life With Kids
100 Ways To Make Family Life Easier and More Fun
By Elaine St. James. This paperback is full of good ideas. "Free Yourself From the Tyranny of the Phone", "Get Rid of Things on a Regular Basis" are examples of two of the down to earth chapter headings. Keep it by the bedside!

Special Kids Need Special Parents, A Resource for Parents of Children with Special Needs
By Judith Loseff Lavin. This paperback delivers sound advice, encouragement and comfort! Taken from interviews with hundreds of families and medical care givers, we are coached to be the best parents possible to our children. Ms Lavin's daughter was born with a cleft lip and palate and we are grateful that she has put her energies into compiling this comprehensive "bible" for families facing parenting children with special needs.

Star Bright
By Mourene Garth. Simple visualizations for children. Written with the goals of helping children to sleep peacefully, develop concentration, and to awaken their creativity. Can help children learn to quiet themselves and free them of fears and nightmares.

We Can Get Along, A Child's Book of Choices
By Lauren Murphy Payne. Ages 3-8. In simple affirming words and enchanting illustrations, this book teaches young children to think before they speak or act and to treat others the way they want to be treated. The focus is on kindness, respect, tolerance and responsibility. What a book! We think the whole world could use a little of this one.

When Your Child Goes to School After an Injury
One of our favorite resources! See Lash and Associates Publishing for contact and ordering information.

Whoever You Are
The bonds that unite us to all the different cultures and generations are woven into this beautiful book. Ages 4-10 for reading aloud and for all ages!

Wonderful Ways to Love A Child
Wonderful Ways to Love a Teen
Parenting With Loving Actions
Wonderful Ways to Be a Family
By Judy Ford. These well written paperbacks stretch us to act in creative loving ways. Again, we feel the world would be a better place if all of us took to heart advice from the books, like "Lighten Up" and "Play Hooky Together". Wonderful gift to all families and particularly foster parents.

You Will Dream New Dreams
By Stanley D. Klein and Kim Schive. Parents stories of surviving, coping, and healing their lives after having a child with a disability. Classic book that gives hope to all.

RESOURCES THAT HELP BUILD SELF-ESTEEM

"I have finally realized that parenting a child with special needs
is not about the readjustment of my dreams but about the journey
and joy in discovering his." -From an article in the
"Partnerships" newsletter, written by Rachel Lustiger whose
eight year old son has Asperger Syndrome.

10 Principles for Spiritual Parenting: Nurturing Your Child's Soul
By Mimi Doe with Marsha Walch, Ph.D.Psychiatrist and writer Robert Coles, M.D. says of this book, "This valuable, instructive book helps parents stop and think about what really matters so that they can help their children do the same and thereby get to the heart of the spiritual life."

Building Self-Esteem Through the Museum of I...25 Original Projects that Explore and Celebrate the Self
By Linda R. Zack.

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Curriculum of Love - Cultivating the Spiritual Nature of Children
By Morgan Simone Daleo.

Delicate Threads - Friendships Between Children With and Without Disabilities
By Debbie Staub, Ph.D.

Elmer
David McKee has woven a story about an elephant named Elmer who is the only elephant in the jungle who is patchwork instead of gray. We are invited to share what happens when Elmer gets tired of being different. This is a story about laughing with, instead of at, something different.

Homemade Books to Help Kids Cope
An Easy-to-Learn Technique for Parents and Professionals

If We Were All the Same
An outstanding audio tape and illustrated children's book from Mister Rogers' Neighborhood. See Family Communications for contact and ordering information.

I Like Me
By Nancy Carlson. A story book. Good "going to the hospital" or birthday gift. Ages 3-7.

Just Because I Am
By Lauren M. Payne. From this book and leader's guide, young children can learn that they are special "not because of things I do, not because of what I look like, not because of what I have... just because I am."

Proud of Our Feelings
Beautiful watercolor illustrations and text to help children and caregivers discover, have fun, and be proud of their feelings. Good gift.

Sam, The Boy Behind the Mask
By Tom Hallman Jr. Pulitzer Prize winner Hallman tells the life story of Sam, now a teenager, from Portland, Oregon, who was born with a severe facial Hemangioma. All the universal issues about family, fitting in, medical miracles, and inner strength are woven into this dramatic real life story. We could not put it down.

Who's Calling the Shots? How to Respond Effectively to Children's Fascination with War Play and War Toys
By Carlsson-Paige and Levin. This 204-page paperback is full of practical and thoughtful ideas for parents and education communities to confront and combat the very negative effects of the violent war toys and internet and film that are being sold as "play" for children. The book is full of practical ideas and resources for helping children reclaim control over their own play, combat consumerism and learn the skills for building a less violent future. A treasure of a resource!

You Are Special
By Max Lucado. Thanks to the Mayo Clinics' Paula Freitag for suggesting that we add this resource. Paula read this hardcover book to a teenage patient who was dealing with a brain tumor. After hearing the story, the teenager said, "That is a story about real life."

TEEN SPECIFIC RESOURCES

How Rude! The Teenagers' Guide to Good Manners, Proper Behavior, and Not Grossing People Out
Alex J. Packer, Ph.D. Nobody's polite anymore, why should you be? The author answers with, "Because good manners are good for you. they impress people. They build self-esteem. They can help you get what you want from life - friends, fun success, and respect. And they do not cost anything." A zippy fun workbook that can change lives.

Meeting the Challenge:
Training Program for Adolescents with Special Needs
An outstanding program that has changed the lives of many parents and children with facial difference. Can be conducted in several sessions by a professional in school, hospital, faith community, etc. Video included. One favorite skill that a parent learned from this training was to take her facially disfigured child around their new neighborhood and introduce herself and her child. Skills for all of us are here!

What Teens Need to Succeed,
Proven Practical Ways to Shape Your Own Future
Benson, Galbraith, and Espeland. A book we think every house with teens should have! Proven stories of how to shape your future and how to make a difference in the lives of the people around you. Eye opening fun checklists and quizzes, hundreds of resources (web sites, etc.) and actions to take are all here in this 355-page paperback.

When Your Teenager is Injured - Preparing for Work and Adulthood
Another favorite! See Lash and Associates Publishing for contact and ordering information.

Writing Down The Days, 365 Creative Journaling Ideas for Young People
By Lorraine M. Dahlstrom. A top notch gift for any teacher, child, parent or Child Life Specialist! Fun, challenging and full of interesting historical facts that spur the writer into each days writing "assignment".

Online Resources for Teens
Please see these two outstanding resources for teens:

HOSPITAL/DOCTOR VISITS

Best I Can Be
Many delightful songs that are written and sung just for children in the hospital and just home from the hospital. See Celebration Shop for contact and ordering information. Also see We Can Do (audio tape).

Family Communications
Tops! From the producers of Mister Rogers' Neighborhood, these products include books, videos, games, and toys for children. Write for a catalogue.

The Kids Book of Questions I and II
Written by Gregory Stock, Ph.D. Good for long car rides and fun for a hospital stay.

Medi-Kid Pediatric Arm Immobilizers
Custom fit, 100% cotton controls for arm or leg movement after surgery or injury. Designed and patented by parent whose son had a cleft, they come in adult and children’s sizes. Can be worn over or under clothing. The smaller ones come with thumb hole or without! Can even be a comfort for an x-ray. Parents are delighted!

Mindworks for Children
Outstanding guided imagery and relaxation tapes (for children and adults) to help children to help themselves. A new tape, The Way of the Bear, Harmony, helps children cope with angry feelings in a positive way. Tapes on acceptance, courage, caring, etc. Parents, nurses, and child life specialists rave about Wanka, The Caring Elephant tape as a sure way to relax any child.

Visiting Children in the Hospital
A pamphlet full of thoughtful tips written by a hospital chaplain.

When Young Children Are Injured...
Families as Caregivers in Hospitals & At Home
See Lash and Associates Publishing for contact and ordering information.

UNDERSTANDING AND COMBATING TEASING

Before Push Comes to Shove, Building Conflict Resolution Skills with Children
Nancy Carlsson-Paige and Diane E. Levin fill this 91-page paperback with detailed ways to guide young children to learn healthy, constructive responses to conflict. Nine comprehensive chapters address topics ranging from the basis of conflict resolution education to how to develop a specific curriculum. Resources!

Bullies and Victims - Helping Your Child Through the Schoolyard Battlefield
SuEllen Fried and Paula Fried address this "epidemic" with practical survival tools for parents and children. Bullying can cause permanent scars and this book can help us to deal with this threat to our family's health. Parents are raving about this book.

Letter to the Teacher
By Master Teacher Sandy Goodwick. Written as if by a child with Moebius Syndrome - Sandy was born with Moebius Syndrome and we are all grateful for her many creative and concrete contributions in helping the world to understand Moebius Syndrome and to value the person behind every face. A classic letter the can be used for any facial disability. For a copy of this powerful teaching tool, send a SASE to Let's Face It (address at bottom of page).

The Meanest Thing to Say
Thank you Bill Cosby for this paperback that teaches a specific skill to help children ages 6-10 to deflate the power of a bully. Included is a letter to parents written by Harvard Medical School's Professor Alvin F. Foussiant, M.D.

Respect and You (video)
This 22-minute video and teacher guide is designed for grades 5-9. Realistic scenarios, each followed by thought-provoking questions, challenge viewers to think critically about the issues involved in respect for property, authority, other people's ideas and differences, and how giving respect creates self-respect. Our reviewers highly recommend these teaching tools. Write or call for their 70-page catalogue.

Teaching Tolerance
The Southern Poverty Law Center has developed this project to offer free, high-quality educational materials to help teachers to promote interracial and intercultural harmony in the classroom and beyond. Free posters and information.

Teasing and How to Stop It
This video and manual teach the child being teased to deal with any teaser. Parents and teachers are raving about its down to earth ability to change lives! See Developing Social Skills for contact and ordering information.

ENTERTAINERS WHO INSPIRE AND ENRICH

Peter Alsop
Through concerts, workshops, tapes, CD’s, films, song books, etc., Peter Alsop’s serious messages about family strife, self love and respect of others are presented with humor and fun. His latest CD is for young children and has songs such as: "I Need a Hug", "My Dad’s a Jungle Gym" and "Poop goes the Weasel"!

Celebration Shop, Inc.
Since 1981 Jim Newton has been visiting hospitals and communities with his songs that help boost self-esteem and encourage healthy expression of feelings. In the Hugworks series, on tape and CD, children can hear Jim with Peter, Paul, and Mary’s Noel Paul Stookey sing songs like "I Can Be the Best I Can Be", "It’s Alright to Ask for Help", "All It Takes Is a Friend", and "Hospital Rap".

Music From the Heart
Jeff Moyer, song writer and inspirational champion of self-esteem and civil rights for people with disabilities, offers song books, CD’s and personal appearances that will enrich any home or community. Listen for Jeff’s comments on National Public Radio’s Morning Edition.

David Roche
A spokesperson for all with facial difference! For a video to preview his message or to come to your community, contact David Roche at:

"Once we truly know that life is difficult--once we truly
understand and accept it--then life is no longer difficult.
Because once it is accepted, it no longer matters."
-M. Scott Peck, M.D.

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2002	2003	2004

.PARENT/EDUCATOR RESOURCES