Birth Defect Research for Children, Inc.

This organization is dedicated to gathering information on birth defects, contributing to research, health education and prevention. We urge all to take part in their free, online registry. In the last few years they identified a cluster of babies born with clefts. Toxic waste was blamed for this cluster and now the people in that Tennessee town do not drink the poisoned well water! They are collaborating with medical communities, governments, and national health organizations all over the world.

Betty Mekdeci, Executive Director

930 Woodcock Rd., Ste. 225

Orlando, FL 32803

407-895-0802

www.birthdefects.org

 

Parents Helping Parents, Inc.

Professional and parent education and training on how to begin and maintain a parent support network.

3041 Olcott Street

Santa Clara, CA 95054

408-727-5775

E-mail: general@php.com

www.php.com

 

Specialized Training of Military Parents (STOMP)

Provides international medical information and training to military families who have children with special needs. Workshops, phone consultation, and presentations.

6316 S. 12th Street

Tacoma, WA 98465

800-5-PARENT

253-565-2266 (Overseas, call collect)

E-mail: rfullerton@washingtonpave.com

www.stompproject.org

 

Brothers and Sisters-A Special Part of Exceptional Families

An important book by Thomas Powell and Peggy Ahrenhold Gallager.

Publisher: Paul H. Brookes Publishing Co.

www.barnesandnoble.com

 

The Don’t Laugh at Me Project (DLAM)

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

www.dontlaugh.org

 

Family Voices

Family Voices is a national coalition speaking for children with special healthcare needs. You’ll find a wealth of information on various subjects.

2340 Alamo Southeast, Suite 102

Albuquerque, NM 87106

888-835-5669

505-872-4774

E-mail: kidshealth@familyvoices.org

www.familyvoices.org

 

 

APERT SYNDROME

Apert Web Page

A delightful full-service web page maintained by Don and Cathy Sears

Don & Cathie Sears

PO Box 2571

Columbia, SC 29202

E-mail: catndon@apert.org

www.apert.org

 

BELL’S PALSY

NINDS Bell’s Palsy Information Page

Located on the National Institute of Neurological Disorders and Stroke web site. An easy-to-understand and comprehensive page for your questions.

PO Box 5801

Bethesda, MD 20824

800-352-9424

301-496-5751

TTY: 301-468-5981

www.ninds.nih.gov/disorders/bells/bells.htm

 

CLEFT LIP/PALATE

Cleft Advocate

An online resource for patients and families dealing with cleft lip and palate. Founded by a parent, Debbie Oliver, who is truly “Tackling the Health Care and Insurance Issues that Concern You.”

Family to Family networking, articles, etc.

PO Box 751112

Las Vegas, NV 89136-1112

702-769-9264

E-mail: debbie@cleftadvocate.org

www.cleftadvocate.com

 

Feeding Your Baby

Feeding Your Baby will give you the facts you need to feed a baby with a cleft. Whether you are a new parent or caregiver, a doting relative or a health care professional, this video will guide you through the special techniques and bottles to help create an enjoyable, satisfying and productive feeding experience for a baby with a cleft palate. Feeding Your Baby includes step-by-step instructions for using a variety of special bottles demonstrated by families who once had the same questions and concerns you may have now. The video includes a frequently asked questions (FAQ) segment as well as breastfeeding and cleft palate treatment team information. http://www.cleftline.org/parents-individuals/feeding-your-baby/

For a complimentary copy, please contact us by phone or e-mail. info@cleftline.org 1-800-24-CLEFT

 

MOEBIUS SYNDROME

Moebius Syndrome Foundation

Newsletters

Annual meetings

Vicki McCarrell, President

PO Box 147

Pilot Grove, MO 65276

660-834-3406

E-mail: vmccarrell@mid-mo.net

www.moebiussyndrome.com

 

NAGER/MILLER SYNDROMES

Foundation for Nager and Miller Syndromes

Newsletters, meetings, etc.

DeDe Van Quill, Director

13210 SE 342nd Street

Auburn, WA 98092

800-507-FNMS

E-mail: ddfmns@aol.com

www.fnms.net 

 

NEUROFIBROMATOSIS

Children’s Tumor Foundation

Ending Neurofibromatosis through research.

Newsletter

Advocacy

95 Pine Street, 16th Floor

New York, NY 10005

212-344-6633

800-323-7938

E-mail: info@ctf.org

www.ctf.org

 

Neurofibromatosis, Inc. (NFI)

Newsletter, videos, meetings, etc.

PO Box 18246

Minneapolis, MN 55418

301-918-4600

800-942-6825

E-mail: nfinfo@nfinc.org

www.nfinc.org

 

PIERRE ROBIN SEQUENCE

Pierre Robin Network

An information group for families affected by Pierre Robin Sequence and professionals who are interested in PRS.

PO Box 3274

Quincy, IL 62305

E-mail: info@pierrerobin.org

www.pierrerobin.org

 

VASCULAR BIRTHMARKS

Sturge-Weber Foundation

An informative resource from the foundation is Sturge-Weber Syndrome.

Karen Ball

PO Box 418

Mount Freedom, NJ 07970

800-627-5482

E-mail: swfoffice@sturge-weber.com

www.sturge-weber.org

 

Hemangioma Hope

A prayer network.

Cindy Dougan

North East, PA

814-898-1054

E-mail: cdouganHH@aol.com

www.members.tripod.com/~Michelle_G/HHopeN.html

 

Vascular Birthmarks Foundation

Newsletters, meetings, etc.

Linda Shannon, Director

PO Box 106

Latham, NY 12110

877-823-4646

www.birthmark.org

 

VELO-CARDIO-FACIAL SYNDROME

Northeast VCFS Support Group

2 Lansing Drive

Salem, NH 03079

603-898-6332

E-mail: MLADJA@aol.com

 

Velo-Cardio-Facial Syndrome Educational Foundation

PO Box 874

Milltown, NJ 08850

732-238-8803

866-823-7335

E-mail: info@vcfsef.org

www.vcfsef.org

 

Beckwith-Wiedemann Children’s Foundation

This information and support network is full of parenting and medial information. Get their new free DVD and learn all about the diagnosis, treatment, and challenges of this syndrome.

Cheryl Hendrickson

425-338-4610

E-mail: www.bwcfcheryl@aol.com

www.beckwith-wiedemannsyndrome.org

 

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 Road, #511

Walnut Creek, CA 94598

925-947-3825

www.csdf.org

 

Babyface, A Story of Heart and Bones

Now in paperback! By Jeanne McDermot- This is an exquisite book. The story of Ms. McDermot’s second son who was born Apert syndrome.

http://www.amazon.com/Babyface-A-Story-Heart-Bones/dp/0142000337

 

Woodbine House

Your trusted source for books on disabilities

www.woodbinehouse.com

 

A Closer Look

Authored by Carmen Anita Mickley

"Will you take a closer look?" Everyone wants and deserves to be loved for who they are, not judged for how they look. This heartfelt poem, written by a mother, encourages others to look beyond the visible differences and find the person inside. Illustrated with candid photos of children and adults with facial differences, "A Closer Look," shows the person beyond the diagnosis. "A Closer Look" can change a mind, a changed mind can change a heart, a changed heart can change a life.

Carmen Mickley

ISBN/EAN13:1466355220 / 9781466355224

https://www.createspace.com/3682571

 

A Leaders Guide to I’m Like You, You’re Like Me has 20 lessons that reinforce the message of the child’s book. ISBN 1-915793-61-X

Free Spirit Publishing

Minneapolis, MN

612-338-2068

800-735-7323

www.freespirit.com

 

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:

www.toddparr.com

Pubisher: Little Brown

 

Reflections from a Different Journey

Stanley D. Klein Ph D. and John Kemp

What Adults with Disabilities Wish All Parents Knew (McGraw-Hill, 2004) is a collection of 40 inspiring short essays by successful adults with different disabilities. Essay authors were asked to write about something they wished their own parents had read or been told while they were growing up.

http://www.amazon.com/Reflections-Different-Journey-Disabilities-Parents/dp/0071422692

 

Uncommon Beauty

Parents of children with special healthcare needs face many challenges. Uncommon Beauty—Crisis Parenting from Day One is the guidebook written by a mom who’s been there. Author Margaret Meder delivers specific, pragmatic strategies for everything from crossing emotional hurdles to handling financial realities; from navigating hospitals to becoming your child’s best advocate; from accepting the help of others to finding an inner strength. Meder’s down-to-earth wisdom comforts and empowers the parents who need it the most, and her words of hope reveal the secret to living a life more meaningful than ever thought possible. Discover the truth of Uncommon Beauty.

www.bookhousefulfillment.com/cart.php?m=product_detail&p=1160

 

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.

Free Spirit Publishing

Minneapolis, MN

612-338-2068

800-735-7323

www.freespirit.com

 

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.

 

Elmer

By David McKee

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.

Publisher: Lothrop Lee and Shepard Books, 1989

 

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.

Magination Press

Washington, DC

800-374-2721

E-mail: magination@apa.org

www.maginationpress.com

http://www.apa.org/pubs/magination/4414681.aspx

 

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!

Publisher: G.P. Putnam & Sons

 

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.”

Publisher: Crossway Books, 1997

http://www.maxlucado.net/search?q=you+are+special

 

 

The Meanest Thing to Say

By Bill Cosby

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, MD.

Publisher: Scholastic, Inc. Little Bill Books for Beginning Readers

 

Pacer Center Launches National Bullying Prevention Web Site

Designed for 2nd-6th grade, children can go through Pacer’s new web site to learn what bullying is, how to respond to it, and how to prevent it. Twelve animated characters teach through games, videos starring celebrities, real kids, artwork, etc., Children with disabilities are included. We urge you to check this one out and bring it to your community.

Pacer Center

8161 Normdale Blvd.

Minneapolis, MN 55437-1044

800-537-2237 (Minnesota only)

888-348-0822 (National)

E-mail: pacer@pacer.org

www.pacerkidsagainstbullying.org

 

Choose Kind

Choose Kind is a national movement inspired by R.J. Palacio's debut novel, Wonder. Teaching students to be accepting of differences and choosing to act kind toward others is a powerful lesson that will stay with these kids throughout their lives.

http://choosekind.tumblr.com/

 

Wonder

by R.J. Polacio

Several years ago R.J. Palacio had a life-altering experience when she had a very brief encounter with a craniofacial child at an ice cream parlor. The negative reaction of her young sons to seeing someone different left a permanent impression. Ms. Palacio spent years, both consciously and subconsciously, thinking about this incident and putting herself in the shoes of the child with a facial difference. I believe this is why her debut novel, Wonder, gives such an insightful perspective of what it really feels like to not only be a 10-year old boy with an extreme facial difference who is entering a new school, but to also be the parent, the sibling, or the friend of someone who looks different. This book is inspiring students across the nation to “Choose Kind.” A must read for ages 9 to 13 and beyond.

www.ccakids.org

 

KidsHealth

Dealing with bullies

http://kidshealth.org/kid/feeling/emotion/bullies.html

 

 

www.Freespirit.com

Free Spirit’s Mission

Everyday life presents many challenges for kids, from home to school to the wider world. No matter how many choices, changes, and opportunities young people face, Free Spirit has had the same mission for over 29 years: to provide children and teens—and the adults who care for and about them—with the tools they need to succeed in life and to make a positive difference in the world.

Based in Minneapolis, Minnesota, Free Spirit Publishing is known for its unique understanding of what kids want (and need) to navigate life successfully. Our reputation as the leading publisher of Self-Help for Kids® and Self-Help for Teens® is grounded in books and other learning materials that are practical, positive, pro-kid, and solution focused. We’re not afraid to tackle tough topics such as teen depression, kids and anxiety, grief and loss, juvenile justice, and conflict resolution. Free Spirit also offers sound advice with a sense of humor on relevant issues including stress management, character building, puberty, school success, self-esteem, service learning, and more. We aim to meet all kids—toddlers, teens, and in-betweens—where they are (not where we wish they were), and support them to develop their talents, build resiliency, and foster a positive outlook on life so they can reach their goals. In early 2007, Free Spirit formed an Advisory Board of Educators, a diverse group of K–12 teachers, counselors, librarians, administrators, and social workers who provide us with valuable feedback about our products. In early 2008, Free Spirit added the Teen Advisory Council, whose members contribute opinions on design, art, and content. With the boards’ input, our books stay current, credible, and extra beneficial for children, teens, and adults.

Enter a search word (i.e. self esteem, bullying) to find literature and learning materials on a variety of topics

Free Spirit Publishing

Minneapolis, MN

612-338-2068

800-735-7323

www.freespirit.com

 

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

Magination Press

Washington, DC

800-374-2721

E-mail: magination@apa.org

www.maginationpress.com

 

Cultivating Connections

School counselor Molly Foot is truly cultivating connections with adults and children with her game Branch Out. Deep appreciation of self and others comes each time this clever, active game is played with 2 to 35 players! School counselors, scouts, faith communities, etc…, are singing the praises of this new resource. Be sure to see the video of the game being played on their web site.

907 Harris Avenue

Suite 301

Bellingham, WA 98225

360-647-5120

E-mail: branchout@cultivatingconnections.com

www.cultivatingconnections.com

 

Chicken Soup for the Teenage Soul I and II

By Jack Canfield and Mark Victor Hansen

ISBN 1-55874-468-1

 

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 really change lives.

Free Spirit Publishing

Minneapolis, MN

612-338-2068

800-735-7323

www.freespirit.com

 

Life Strategies for Teens

By Jay McGraw

 

TV host Dr. Phil’s son Jay is the author of several books for teens that come with an audio tape or CD. Fun, powerful tools for helping teens with skills for life. Jay travels and has powerful school programs. NY Times Best Seller List

www.DrPhil.com

 

KidsHealth

Dealing with Bullying

http://kidshealth.org/teen/homework/problems/bullies.html

 

World Enough and Time

By Emma C Williams

Anna Jones is an intelligent and spirited girl of 15, whose everyday experiences of growing up are overshadowed by a rare condition called Goldenhar syndrome. While Anna approaches her life with humour and determination, she is haunted by the inescapable fact that she looks a little different from other girls. Despite the support of her friends and family, she remains convinced she will never be loved – especially not by the gorgeous and intelligent Michael. Anna’s life and schooling is regularly interrupted by a variety of hospital visits, each one of which seems designed to make her feel even more different from the other girls. As she counts down the days until the major surgery that will change the course of her life forever, Anna becomes increasingly doubtful as to whether she will ever be truly normal. World Enough and Time is an often funny, sometimes painful but ultimately uplifting novel about growing up and finding your feet in the world. It has been inspired by Judy Blume and offers a harrowing but inspirational insight into a condition that is mostly unheard of.

 

Best I Can Be

Many delightful songs that are written and sung just for children in the hospital and just home from the hospital.

Hugworks

752 Mary Drive

Hurst, TX 76053

817-268-0020

E-mail: hugworks@hugworks.org

www.hugworks.org

 

A Child in Pain, How to Help, What to Do

By Leora Kuttner, Ph.D.

This book provides specific language that will help children manage the full spectrum of the pain experience, both on a sensory and an emotional level.

 

I Like Me

By Nancy Carlson. A story book. Good “going to the hospital” or birthday gift. Ages 3-7

Publisher: Puffin Books, 1988

http://www.redballoonbookshop.com/book/9780140508192

 

The Kids Books of Questions I and II

Written by Gregory Stock, Ph.D. Good for long car rides and fun for a hospital stay.

Publisher: Workman Publishing

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 comfort for an x-ray. Parents are delighted!

448 S Palm

Suite A

Hemet, CA 92543

909-925-8800

888-463-3543

www.pediwrap.com

 

NutriSqueeze

http://www.craniorehab.com/nutrisqueeze-pouches.html

The NutriSqueeze pouches are disposable stand-up pouches for easy storage and serving of shakes, purees, and drinks. When cups and straws wont work, NutriSqueeze pouches are easy to use and can be taken anywhere. A great alternative to feeding syringes.

 

Easy-to-Swallow, Easy-to-Chew Cookbook

John Wiley and Sons, 2002

Understanding swallowing is a complex subject and the authors give us 50 pages of easy to understand education on the subject! We welcome this important resource with over 150 recipes. At book stores.

http://www.wiley.com/WileyCDA/WileyTitle/productCd-0471283363.html

 

ToysRus

Toy catalog for children with special needs

http://www.toysrus.com/shop/index.jsp?categoryId=3261680

 

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

www.bradwoods.org

 

Camp Boggy Creek

Camp Boogy Creek has a session for kids with facial differences in the spring and another during the summer. In addition they have a session for kids and their parents

Can http://www.boggycreek.org/index.html

Job Search Handbook for People with Disabilities

By Dr. Daniel J. Ryan

Many of us with facial disfigurement benefit from coaching when it comes to finding a job. This 251 page book is full of tasks that can propel us into our chosen field of work. Chapter 12 is about “Keeping the Job” and offers tips on things like “Succeeding at Office Politics.” This book requires hard work. We think you will be rewarded with important information about yourself and job satisfaction. Available at your Book Store.

Peter Alsop

Through concerts, workshops, tapes, CDs, films, song books, etc., Peter Alsop’s serious messages about family strife, self love, and respect of others are presented with humor and fun. One 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!

Moose School Records

PO Box 960

Topanga, CA 90290

800-676-5480

E-mail: peter@peteralsop.com

www.peteralsop.com

 

David Roche

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

191 Throckmorton Avenue, #1B

Mill Valley, CA 94941

415-381-3518

Email: david@davidroche.com

www.davidroche.com

 

J.R. Martinez

Full of Heart: My Story of Survival, Strength, and Spirit

In 2003, nineteen-year-old Private J.R. Martinez was on a routine patrol when the Humvee he was driving hit an antitank mine in Iraq, resulting in severe injuries and burns on his face and more than one-third of his body. Out of that tragedy came an improbable journey of inspiration, motivation, and dreams come true. In Full of Heart, Martinez shares his story in intimate detail, from his upbringing in the American South and his time in the Army to his recovery and the indomitable spirit that has made him an inspiration to countless fans.

http://www.amazon.com/Full-Heart-Survival-Strength-ebook/dp/B008740PGA/ref=sr_1_1?s=digital-text&ie=UTF8&qid=1363304768&sr=1-1&keywords=j.r.+martinez

 

Insurance Warrior

Book to help families with insurance issues, by Laurie Todd

www.theinsurancewarrior.com

American Anaplastology Association

The American Anaplastology Association is a nonprofit, interdisciplinary organization dedicated to promoting the art and science of prosthetic therapy for patients with facial or somato differences due to cancer, trauma, or congenital origin.

MaryAnne Bobrow, Executive Director

6060 Sunrise Vista Drive

Suite 1300

Citrus Heights, CA 95610-7098

916-722-8168

E-mail: aaa@anaplastology.org

www.anaplastology.org

 

Custom Prosthetic Designs, Inc.

Robert R. Barron

Certified Clinical Anaplastologist

Specializing in Prosthetic Replacement of Facial and Digital Anatomy

20608 Gordon Park Square Suite # 150

Ashburn, Virgina 20147

Phone: 703-723-4668

Fax: 703-723-7130

email: cpdrbarron@prosthesis.com

website: www.prosthesis.com

 

Genesis Prosthetic Arts

David Van Aukler

Genesis Prosthetic Arts

2106 Musson Road

Howell, MI 48855

(517) 540-6190

FAX # (517) 540-6191

dvauker@hotmail.com

http://www.genesisprostheticarts.com/home.htmlm

 

The Individualized Education Program (IEP) IS THE KEY

Children’s Craniofacial Association 2011 Symposium Presenter: Paula Guzzo Parent & CCA Board Chair

click here to download   (http://ccakids.org/articles/THE%20IEP%20IS%20THE%20KEY.pdf)

 

"Beyond the Face is a Heart" Skit

Peter uses a humorous skit to make his schoolmates feel comfortable to talk about his facial difference

http://www.youtube.com/watch?v=9c0tEtP2j14

 

Individualized Education Program (IEP) articles:

Understanding Article 7     

(http://ccakids.org/articles/4%20Understanding%20Article%207%20Communication%20Resolving%20Disputes.pdf)

 

Transition IEP Chart

(http://ccakids.org/articles/Transition%20IEP%20Chart.pdf)

 

Written Opinions: A How-To Manual

(http://ccakids.org/articles/Written%20Opinions%20by%20Pat%20Howey.pdf)

 

Parent Tip Sheet

(http://ccakids.org/articles/Parent%20TIP%20SHEET.pdf)

 

First Day of School Letters:

CCA board member Dede Dankelson uses these letters to introduce her son, Peter, to his classmates on the first day of school. One letter is for the teacher, Peter reads one and one goes home with the classmates.