BOOKS, VIDEOS, NEWSLETTERS, ETC.
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The Family Resource Library at British Columbia’s Children’s Hospital in Vancouver, Canada
One Step at a Time, The Journey Toward Healing During Your Child’s Hospitalization
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Ability Online Support Network
We love this network! Ability Online is an Internet network designed to enhance the lives of children and youth with disabilities or illness by providing an online community of friendship and support.
- Vast links and index
- French and English
Toronto, Ontario, Canada
(416) 650-6207
Web: http://www.ablelink.org
Amazing Grace
Mary Hoffman has written a beautiful book about looking "different." Ages 6-10.
Publisher: Dial Books for Young Readers
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Babyface, A Story of Heart and Bones
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Between Parent and Child
By Haim Ginott. We are thrilled that this parent "bible" has just been reprinted. If any book can help parents raise children in a peaceful way that fosters everyone's self-image and self-respect, this one is it! The simple language tools one learns from this book have changed the lives of thousands of families. Great gift.
Publisher: Three Rivers Press
Boredom Blasters - Hours & Miles of Games & Activities to Make Time Fly
By Susan Todd. Good for long trips to medical centers or for hospital stays. This very original and creative paperback has over 77 games and ideas for one person or the whole family. Ms. Todd has marked games that don't have a winner or loser, helping to avoid potential arguments. Ages 7 and up. Child Life Specialists take note!
Publisher: EFG Publishing
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.
Publisher: Brookline Books
Camps for Children living with Facial Difference
We urge parents to find or create camp experiences for children of all ages. Camp About Face in Indiana not only has a craniofacial camp in July but has added a Leadership Academy. At the end of the Academy one outstanding camper who will be attending college or a trade school in the Fall will be eligible for a scholarship of $2,000. For camp and Academy information call the Craniofacial program office at Riley Hospital for Children in Indianapolis.
(317) 274-2489
Web: http://www.bradwoods.org/
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.
P.O. Box 3249, Redmond, WA 98073
(800) 221-2864
Web: http://www.ccie.com
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Child Health Alert
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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.
275 Longwater Dr., Norwell, MA 02061
(800) 766-8443 - Parents
Web: http://www.childmed.com
Children’s Skin Disease Foundation
CSDF enhances its full educational services with camps on both coasts of the US. Ask for their DVD and you will see how wonder-filled camp can be for these special children.
712 Bancroft Rd., #511, Walnut Creek, CA 94598
(925) 947-3825
Web: http://www.csdf.org
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Children with Facial Difference - A Parent's Guide
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Delta Gamma Center for Children
The Delta Gamma Center for Children presents this new DVD: “Becoming a Supporting Parent: how to talk, listen and instill hope in others.” We feel this DVD is just what so many craniofacial centers need. Here is what they say about it: “Utilizing the DVD training in our own Parent-to Parent program has already made a great impact. We have been able to train several new supporting parents quickly to facilitate appropriate parent-to-parent matches for new parents. In addition, previously trained parents have stated that viewing this training will improve their ability to respond to new parents when matched.” Preview the program and read what Parent-to-Parent USA says about t it on the Gamma Center’s web site.
Delta Gamma Center for Children
5030 McRee, St. Louis, MO 63110
(314) 776-1300
Web: http://www.dgckids.org
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.
Operation Respect
2 Penn Plaza, 5th Floor
New York, NY 10121
(212) 904-5243
E-mail: info@operationrespect.org
Web: http://www.dontlaugh.org
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.
- Networking
2340 Alamo SE, Ste. 102
Albuquerque, NM 87106
(888) 835-5669 or (505) 872-4774
E-mail: kidshealth@familyvoices.org
Web: http://www.familyvoices.org
Go Ahead and Stare
A beautifully written article in the July 2001 issue of Parents magazine (pg. 33-34, check your library). Jeanne McDermott, author of Babyface, articulates her powerful parenting skills with her son who was born with Apert Syndrome. Your library will have a copy.
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.
Publisher: Harper Perennial
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Healthy Kids Now
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How to Behave and Why
This book, first published in 1946, has been reprinted and we find its old time wisdom and illustrations refreshing and fun. Good for all ages, this essay read would be good for sparking conversations about friendship, honesty, fairness, and standing strong. One paragraph about making friends says, "There are a lot of nice people everywhere and the sooner we meet each other in a friendly way and get to know each other, the better the world will be for all of us."
Publisher: Universe Publishing 2002 in agreement with Harper Collins Children's Books
If Peace Is...
By Jane Baskwill. This is a beautifully illustrated book that introduces different meanings for the word "peace." An example is, "It's a hand waved in friendship, a simile on a face... a kind word and deed, any time any place. Peace is a promise - It is something we do." Good gift!
Publisher: Mondo Publishing, NY
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.
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A Leaders Guide to I'm Like You, You¹re Like Me has 20 lessons that reinforce the messages of the child's book. ISBN 1-915793-61-X
Publisher: Free Spirit Press
It's Okay to be Different
By Todd Parr. Mary Hassler, mother of Claire, 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." For more of Todd Parr’s children’s books that deal with emotions and social life, see his web site at:
http://www.toddparr.com.
Publisher: Little Brown
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.
Publisher: Firefly Books Ltd.
ISBN 1-55297-577-0
Kids Just Want to Have Fun! (video)
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.
Ideascape, Inc., Lake Oswego, OR
(503) 246-2439
Web: http://www.mercuryproductions.com/indexh.html
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 acts 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."
Publisher: Conari Press, Berkley, CA
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.
Palo Alto, CA
(800) 558-8944
Web: http://www.klutz.com
Learning to Live with Grief
By John R. Claypool. This 23-page booklet can give hope and support to all who are moving through a grief process. Printed by the independent Episcopal press, Forward Movement. ($0.75 per copy)
Phone: (888) 543-1813
Web: http://www.forwardmovement.org
Let’s Talk About Race
By Julius Lester and illustrated by Karen Barbour. This creative, beautiful children’s book will help to educate the world to “value the person behind every face.” Julius Lester leads us into an exercise where we feel the bones under our eyes and then go and feel the same bones in others. “Beneath everyone’s skin are the same hard bones.” A wonderful present for young and old. This would be an excellent book to spark important, fun conversation about differences. Available at your book store.
Locks of Love
This nonprofit organization is dedicated to providing custom-made, real hair pieces to children under 18 who are dealing with medical hair loss. There must be a financial need. There are approximately 2 million children in the U.S. who have some form of Alopecia Areata and many more who have total hair loss because of burns and other diseases. They accept donations of hair (10 or more inches) and funds!
Susan Stone, Director
2925 10th Ave. N, Ste. 102
Lake Worth, FL 33461-3003
Phone: (888) 896-1588 or (561) 963-1677
Web: http://www.locksoflove.org
Nancy B. Miller, Ph.D.Nobody's Perfect - Living and Growing with Children Who Have Special Needs
Everybody's Different - Understanding and Changing Our Reactions to Disabilities
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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.
Publisher: McGraw-Hill
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. See The Family Resource Library for contact and ordering information.
Picture Me Foundation
Picture Me is dedicated to getting children with disabilities or serious illness to use “therapeutic scrapbooking.” Taking pictures, creating, writing, and sharing are just four of the components of the Picture Me program. They have resources with guidelines to get you started and free trainings!
P.O. Box 634, Litchfield Park, AZ 85340
Phone: (602) 316-1221
E-mail: kindy@pictureme.org
Web: http://www.pictureme.org
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).
Reflections from a Different Journey, What Adults With Disabilities Wish All Parents Knew
Edited by Stanley D. Klein and John D. Kemp. This is a remarkable book. In brief essays these adults with disabilities write of the pain, humor, and clever solutions that their parents gave to their lives. The essays are grouped as follows: Love Me and Accept Me as I Am, Parents Are the Most Important Experts, Parental Expectation and Sexuality.
On the book jacket Senator Robert Dole says, “These essays will educate, inform and entertain every parent who wants to know how to be the very best parent he or she can be.” We agree and add that Reflections from a Different Journey can also be used for disability awareness, allied health and medical education, and for the education of teachers of all ages of children.
Publisher: McGraw Hill, 2004
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 culture's heavy doses of violence, stereotypes, commercialism and no-brain entertainment that bombard our lives. Wonderful gift.
Publisher: National Association for the Education of Young Children
Signing Time (Video Series)
Signing Time is a top notch video series that has two dear children teaching basic sign language to infants and children of all ages. Creative, fun, and educational. Makes a great gift. Child Life Departments take note. A CD is also available.
Two Little Hands Productions
P.O. Box 581037, Salt Lake City, UT 84158
(801) 533-0444
Web: http://www.signingtime.com
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!
Publisher: Andrews McMeel Publishing
SNAP — Special Needs Advocacy For Parents
SNAP, a non-profit parent network, has launched a Medical Insurance program dedicated to ”help you understand your policy and problem-solve your insurance nightmares.” West and East Coast offices (see their web site for more information).
11835 W. Olympic Blvd., #465
Los Angeles, CA 90064
(310) 479-3755 or (888) 310-9889
E-mail: info@snapinfo.org
Web: http://www.snapinfo.orgEast Coast Office:
248 Columbia Turnpike
Bldg. #3, Lower Level
Florham Park, NJ 07932
(973) 236-9874
Snuggle Wraps - Pediatric Arm Restraints
We want to introduce you to these very soft, lightweight arm restraints called Snuggle Wraps. Designed by a parent, Heather Able, these innovative, ventilated restraints will give infants and toddlers the very best post-surgery “snuggle wrap.” See them on their web site.
The Able Company
974 Harbortowne Rd., Charleston, SC 29412
(843) 762-6769
Web: http://www.snugglewraps.com/
Also available through Zip-N-Squeeze
(714) 997-7146 (PST)
Web: http://www.zip-n-squeeze.com
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.
Publisher: Berkley Press
Spirituality and Health Magazine
Their April 2005 issue has an article titled, “Play That Lightens the Load of Children In Hospitals.” All of us who have had children in hospitals know about the healing value of play and this article is about a research project measuring the positive effect of a story telling program for hospitalized children. Child Life Specialist take note! At your library.
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.
Publisher: Harper Collins
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.
Publisher: Free Spirit Publishing
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!
Publisher: Harcourt Brace and Co.
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.
Publisher: Conari Press
Won't You Be My Kissaroo?
By Joanne Ryder and Melissa Sweet. This hardback book for ages 3-5 is beautifully illustrated. In rhyme we are introduced to many different kisses. One of our favorites is, "A goodbye kiss goes with a hug to keep you safe and feeling snug."
Publisher: Gulliver Books, Harcourt, Inc.
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.
Publisher: Kingston Press