212.263.6656
Books for Children
A Hospital Story: An Open Family Book for Parents and Children Together
By Sara Bonnett Stein (Walker & Co., 1983)
A Visit to the Sesame Street Hospital
By Deborah Hautzig (Random House, 1985)
At the Hospital
By Amy Moses (Child’s World, 1997)
Chris Gets Ear Tubes
By Betty Pace (Gallaudet University Press, 1995)
Curious George Goes to the Hospital
By Anne Civardi (EDC Publishing, 1994)
Funny Face
By Debbie Breslow
Let’s Talk About Going to the Hospital
By Marianne Johnson (Powerkids Press, 1998)
The Hospital Scares Me
By Paula Z. Hogan (Raintree Children’s Books, 1980)
Tubes in My Ears: My Trip to the Hospital
By Virginia Dooley (Mondo Publishing, 1996)
When Molly was in the Hospital: A Book for Brothers and Sisters of Hospitalized Children
By Debbie Duncan (Rave Productions, 1994)
Why am I Going to the Hospital?
By Claire Ciliotta and Carole Livingston (Lyle Stuart Inc., 1981)
Books for Parents
Abbott, Marcia. My Face. Piedmont , CA : Marcia Abbott ( 59 Sylvan Way , 94610). Marcia wrote this book about and for her daughter, Natalie. Natalie has Moebius syndrome.
AboutFace ( P.O. Box 458 , Crystal Lake , IL 60014 ; 1-888-486-1209). Booklets: Apert, Crouzon and Other Craniosynostosis; Making the Difference: Caring for the Newborn and Family Affected by Facial Disfigurement – An Orientation Package for Health Care Providers ; Pamphlets: My Newborn Has a Facial Difference; You, Your Child and the Craniofacial Team .
Batshaw, Mark and Yvonne Perret. Children with Disabilities: A Medical Primer. Baltimore, MD: Brookes Publishing Co. ( P.O. Box 10624 , 21285-0624), 1992. This sourcebook includes general and specific information on a variety of disabling conditions, including such facial differences as cleft lip and palate and Treacher Collins syndrome. Entire chapters address genetics and heredity, prenatal diagnosis and fetal growth, premature birth, technology assistance, feeding, dental care, hearing, language and communication, ethical dilemmas, and coping.
Bennett , Virginia , and Sheila Farnan. Feeding Young Children with Cleft Lip and Palate. St. Paul , MN : Minnesota Dietetic Association ( 1910 W. County Rd. B, Room 212, 55113), 1991. Non-medical illustrations accompany a comprehensive text on general nutrition information and special considerations for infants with clefts.
Berkowitz, Samuel. The Cleft Palate Story. Carol Stream , IL : Quintessence Publishing Co. ( 551 N. Kimberly Dr., 60188-1881), 1994. This is a practical guide designed to allay parent anxieties by describing how cleft palates can be managed and a successful outcome facilitated. Includes information on the definition of a cleft palate, feeding, heredity of clefts, speech and hearing, dental problems, social and emotional issues, closing of the cleft and health care providers, insurance and support organizations.
Beuf, Ann Hill. Beauty is the Beast. Appearance Impaired Children in America. Philadelphia , PA : University of Pennsylvania Press, 1990. This book examines the stigmatization of children who deviate from acceptable American standards of physical appearance. Using theory and methodology from sociology, anthropology, and psychology the author analyzes the effects of this stigmatization on children and the strategies they use to cope with it.
Brizze, Lori and Barbara Anderson. Ready for Solid Foods? Tips for the Baby with Cleft Palate. Olympia , WA : Department of Health (PCHS Warehouse, 7741-A Arab Road SE , Mailstop MK-14 98504), 1988
Children’s Hospital of Wisconsin , Craniofacial Team. A Team Approach to Children with Cleft Lip and Palate: A Resource Guide for Families. Order From: Maxishare, P.O. Box 2041 , Milwaukee , WI 53201 . This booklet is designed to answer parents’ questions about caring for a child with cleft lip and/or cleft palate. Covers types of cleft lips and palates, repair, feeding, speech and hearing.
Cleft Palate Foundation ( 1504 East Franklin Street, Suite 102 Chapel Hill , NC 27514-2820 email: info@cleftline.org). The following is a listing of their current publications; contact the Foundation for pricing information: Booklets – For Parents of Newborn Babies with Cleft Lip/Palate (available in Spanish); Cleft Lip and Cleft Palate: The First Four Years (available in Spanish); Cleft Lip and Cleft Palate – The Child from Three to Twelve Years; Information for the Teenager Born with a Cleft Lip and/or Palate; Feeding an Infant with a Cleft (available in Spanish); The Genetics of Cleft Lip and Palate. Fact Sheets Information about Choosing a Cleft Palate or Craniofacial Team, Information about Crouzon’s Disease, Information about Dental Care, Information about Financial Assistance, Information about Pierre Robin Malformation Sequence, Information about Submucous Cleft, Information about Treacher Collins Syndrome, Information about Treatment for Adults with Cleft Lip and Palate.
Connecticut Cleft Lip and Palate Parent’s Group. There’s a Little Problem BUT… Newington , CT : Newington Children’s Hospital and the Connecticut Lip and Palate Parent’s Group (Cleft Palate Center/Dept. of Speech Pathology, Newington Children’s Hospital, 181 E. Cedar St ., Newington, CT 06111), 1984. This booklet offers information on the Connecticut Parent’s Group, emotions, feeding equipment and procedures, health professionals, and first surgery.
Connecticut Developmental Disabilities Council. A Parent Guide for Doctor’s Visits. E. Hartford , CT : Connecticut Developmental Disabilities Council ( 90 Pitkin St. , 06108), 1987.
Craniofacial Team – British Columbia Children’s Hospital . Vancouver , British Columbia , Canada : Craniofacial Team ( British Columbia ‘s Children’s Hospital, 4480 Oak St., V6H 3V4 ), 1989. This parent-oriented booklet is written in very simple language. It offers information on: characteristics, genetics, multidisciplinary craniofacial team management, and information for teachers and schools for dealing with teasing.
Des Jardins, Charlotte . How to Get Services by Being Assertive: For Parents of Children with Disabilities and Their Helpers. Family Resource Center on Disabilities ( 20 E. Jackson Blvd. , Room 900, 60604. 312-939-3513), 1993. Written to empower parents, this book offers step-by-step instructions on obtaining services for children through assertive communication techniques.
Fishbaough, Michael. Someone Like Me – A Booklet for Children Born with Cleft Lip and Palate. Noblesville , IN : Becky Meeks ( 306 Redbay Drive , 46060).
Grealy, Lucy. Autobiography of a Face. New York : Houghton Mifflin, 1994. This book documents the author’s life, from her diagnosis of facial cancer at age nine through subsequent treatment and reconstructive surgeries.
Health Insurance Association of America . The Consumers Guide to Health Insurance . Washington , D.C. : Health Insurance Association of America ( 1025 Connecticut Ave., NW , 20036-3998), 1992. This booklet answers frequently asked questions about health insurance.
Health Insurance Resource Guide. Chevy Chase , MD : Alliance of Genetic Support Groups ( 35 Wisconsin Circle, Suite 440 , 20815). Topics covered in this booklet include: The Pre-Existing Condition Dilemma, Obtaining and Keeping Health Insurance, Important Provisions to Note when Assessing Your Health Care Coverage, The Price You Pay for Your Policy, Strategies for Reimbursement, Income Taxes and Medical Expenses, Government Assistance Programs, When All Else Fails.
Home Tracheostomy Care for Infants and Young Children was produced by the University of Colorado Health Sciences Center School of Nursing. In it, a parent describes her feelings as she learns to manage her baby’s tracheostomy. Manual also available. For pricing information contact: Learner Managed Designs, Inc., 2201 K West 25 th St., Lawrence, KS 66047.
Jammine Georgia Haitas. Michael Has a Cleft Lip and Palate. South Africa : Genetic Services (Dept. of National Health and Population Development, Private Bag X 63, Pretoria 0001 South Africa). This paperback book offers children (and adults) engaging, realistic color illustrations along with accurate information.
Krahl, Rhonda. Rebuilding Your Dream Family: Life with a Disabled Child. Iowa City , IA : The University of Iowa (Campus Stores, MI050H, 52242.)
Krementz, Jill. How It Feels to Live with a Physical Disability. New York : Simon & Schuster, 1992. This book is composed of mini-autobiographies (text and photos) of twelve children who have physical differences. Of special interest is Francis Smith, age 16, who has Treacher Collins syndrome. Francis tells his story and speaks about his life, accomplishments, disappointments, hopes and fears, goals and dreams.
Lansky, Vicki. Koko Bear’s Big Earache: Preparing Your Child for Ear Tube Surgery. New York : Bantam Books, 1988. This book has two written passages on each page: one for children and for adults; along with an accompanying drawing. Written at a simple reading level.
Larson, Georgianna and Judith A. Kahn. How to Get Quality Care for a Child with Special Health Needs. A Guide to Health Services and How to Pay for Them. St. Paul , MN : Lifeline Press ( 2500 University Ave. West , 55114), 1990.
Let’s Face It , P.O. Box 29972 , Bellingham , WA 98228-1972 . A sample of publications available is listed below. Contact Let’s Face It for cost.
- Resources for People With Facial Difference (annual publication)
Reprints:
-April 1993 search of medical literature pertaining to the psychosocial aspects of facial difference.
-A Bibliography of Favorite Articles Recommended for Parents of Young Children with Special Needs
-Harvard Law Review (1990). “Facial Discrimination: Extending Handicap Law to Employment Discrimination on the Basis of Physical Appearance.”
-Macgregor, Francis Cooke (1990). “Facial Disfigurement: Problems and Management of Social Interaction and Implications for Mental Health.”
-Pruzinsky, Thomas (1990). “Collaboration of Plastic Surgeon and Medical Psychotherapist.”
Loyola University of Chicago . Craniofacial Surgery . Maywood , IL : Loyola University Mulcahy Outpatient Center (Craniofacial Center 2160 S. 1 st Ave. , Bldg. 106, Rm. 2532, 60153). This illustrated booklet was written for parents of children with craniosynostosis (scaphocephaly, plagiocephaly, brachycephaly, trigonencephaly, and Crouzon and Apert syndromes).
Marsh, Jayne, and Carol Boggis (editors). From the Heart: On Being the Mother of a Child with a Disability. Bethesda , MD : Woodbine House, 1995. This book gathers together the insights, worries, hopes and dreams, and anecdotes of nine women who participated together in a support group for parents of children with disabilities or serious medical problems.
MacDonald, Susan Kelley. Hearing and Behavior: In Children Born with a Cleft Palate. West Roxbury , MA : Prescription Parents, Inc. ( P.O. Box 161 , 02132.) This booklet explains the relationship of hearing loss and cleft palate and its treatment.
McDonald, Eugene and Asa Berlin . Bright Promise: For Your Child with Cleft Lip and Cleft Palate . Chicago , IL : National Easter Seal Society (Publications Department, 70 East Lake St. , 60601), 1987 (English); 1980 (Spanish). Written in question and answer format, this booklet covers multidisciplinary management along with prenatal development, possible causes, anatomy, surgical management, and feeding, speech, intelligence, hearing, dental, and emotional issues. Illustrations included.
McManus, Margaret A. Understanding Your Health Insurance Options. A Guide for Families Who Have Children with Special Health Care Needs. Washington , DC : McManus Health Policy Inc. ( 3615 Wisconsin Ave. NW , 200216), 1988.
Meyer, Donald (editor). Uncommon Fathers: Reflections on Raising a Child with a Disability. Bethesda MD : Woodbine House, 1995. Fathers of children with a variety of disabling conditions reflect on the emotions that go along with parenting a child with special needs, as well as on the many ways such parenthood has changed their lives.
Miller, Nancy. Nobody’s Perfect: Living and Growing with Children Who Have Special Needs. Baltimore , MD : Brookes Publishing Co. ( Box 10624 , 21285-0624), 1994. This book was written by a social worker and a group of “moms.” Parents’ thoughts and strategies are outlined. A parent’s story of the birth of her child with Pierre Robin malformation sequence is recounted.
Minnesota Department of Health. Guidelines of Care for Children with Special Health Care Needs: Cleft Lip and Palate . Minneapolis , MN : Minnesota Dept. of Health (Services for Children with Handicaps, 717 SE Delaware St. , P.O. Box 944`, 55440), 1991.
Moffitt, Karen, John Reiss, and John Nackashi. Special Children, Special Care . Tampa , FL : Florida Diagnostic and Learning Resources System of the University of South Florida ( University of South Florida Bookstore, 4204 E. Fowler Ave. , 33620-6550, Attn.: General Books). This guide is for parents of children who are medically complex and technology dependent. Includes daily charts that can make life at home more manageable, along with information on emotional aspects, insurance and health financing, legal and medical issues, and education and social services.
Moller, Karlind, Clark Starr, and Sylvia Johnson (editors). A Parent’s Guide to Cleft Lip and Palate. Minneapolis , MN : University of Minnesota Press ( 2037 University Ave. SE , 55414), 1990. This book offers chapters on the types of clefts and embryology, team approach, surgical care, feeding, ear problems, dental care, speech concerns, social and psychological development, and genetic counseling. Illustrations, photographs, case histories, and resources are included.
Neiman, Gary and James Lehman Jr. A Parent’s Guide: Cleft Lip and Palate and other Craniofacial Problems . Akron , OH : Plastic and Reconstructive Plastic Surgeons, Inc. (Akron Craniofacial Center, Children’s Hospital Medical Center of Akron, 300 Locust St., Suite 380, 44302), reprinted 1990. This booklet provides text, medical illustrations, and photographs about anatomy, causes and the multidisciplinary management of children with clefts.
New England SERVE. Paying the Bills: Tips for Families on Financing Health Care for Children with Special Needs. Boston , MA : New England SERVE (MA Health Research Institute, 101 Tremont St., Suite 812 , 02108), 1992. This booklet was written by parents who have children with special needs. It shares information and strategies for getting payment for children’s health care and includes tips on how to make the system work.
Parameters for Evaluation and Treatment of Patients with Cleft Lip/Palate or Other Craniofacial Anomalies. American Cleft-Craniofacial Association ( 104 South Estes Dr., Suite 204 , Chapel Hill , NC 27514 ; 919-933-9044; e-mail: cleftline@aol.com ), 1003. This booklet outlines what the American Cleft Palate-Craniofacial Association considers to be optimal care for children with facial difference. A good resource to refer to when selecting a craniofacial team for your child.
Patrick Gets Hearing Aids. Available from Phonak, Inc., 850 E. Diehl Rd., P.O. Box 3017 , Naperville , IL 60566 . 1-800-777-7333; 708-505-7007. This beautifully illustrated children’s book tells the story of Patrick, a bunny who can’t hear well. He visits the audiologist, is tested, and fitted for hearing aids.
Peckinpah, Sandra Lee. Rosey — The Imperfect Angel . Westlake Village , CA.: Scholars Press (Dasan Productions, Inc. 4201 Hunt Club Lane , 91361), 1990. An illustrated fairy tale book in which an “imperfect” angel with a cleft is chosen to journey to “The Land Called Below.” The message is that there is beauty in imperfection. Suitable for children and adults.
Pinkava, Mary J. A Handful of Hope: Helpful Suggestions for Grandparents of Children with Disabilities. Phoenix , AZ : Pilot Parent Partnerships ( 2150 E. Highland Ave., Suite 2105 , 85016). Written for grandparents of a child who has recently been diagnosed with a disabling condition.
Project School Care. Working Towards a Balance in Our Lives: A Booklet for Families of Children with Disabilities and Special Health Care Needs. Boston , MA : Children’s Hospital, Boston (Gardner 610, 300 Longwood Ave. , 02115), 1992. This booklet, written by and for parents, lists questions parents should ask, state and national resources, and offers ideas on how parents can work towards a balance.
Pruzinsky, Thomas (1990). “Collaboration of Plastic Surgeon and Medical Psychotherapist,” Medical Psychotherapy, Vol. 3, p. 103-116. (Single copy available from Let’s Face It, P.O. Box 29972 , Bellingham , WA 98228-1972 . Send SASA.) This article discusses the role of the medical psychotherapist in the treatment of people with congenital conditions of facial difference. It describes the psychological assessment and interventions conducted by medical psychotherapists with patients undergoing reconstructive plastic surgery for congenital deformities of the face and skull. It advocates for the specialized role of the medical psychotherapist on the craniofacial treatment team.
Pruzinsky, Thomas (1992). “Social and Psychological Effects of Major Craniofacial Deformity,” Cleft Palate-Craniofacial/Journal, Nov. 1992, Vol. 29, No. 6, p. 578-84. This article discusses the social and psychological experiences of patients with the most severe forms of craniofacial differences. A conclusion is drawn that individuals with the most sever forms of craniofacial differences are at risk for experiencing social and psychological stress and may have their quality of life negatively affected by the experience of having a facial difference.
Reich, Elsa. Treacher Collins Syndrome: An Overview. Norwich , VT : Treacher Collins Foundation ( P.O. Box 683, 05055), 1992. This booklet provides an overview of information about Treacher Collins syndrome, including information about genetics, health problems related to the condition, research, treatment, selecting a craniofacial team, and psychological aspects.
Seligman, Milton and Rosalyn Benjamin Darling. Ordinary Families, Special Children: A Systems Approach to Childhood Disability. New York : The Guilford Press, 1989.
Simons, Robin. After the Tears: Parents Talk about Raising a Child with a Disability. San Diego , CA : Harcourt Brace Jovanovich, 1987.
Teasing and How to Stop It videotape and manual. For pricing information contact: Edna Durbach, British Columbia Children’s Hospital, 4480 Oak St. , Vancouver , B.C., Canada V6M 1K8. By watching the video and their own behavior, children who are teased learn how to analyze their own situation with the guidance of an adult “coach.” The video and manual can be purchased by a school or other community center for access to children with facial difference and other children who might encounter teasing.
