Specialized recommendations for children with the 22q11.2 Deletion Syndrome


Donna Cutler-Landsman, M.S.

Kas Winters

Support Groups

Dempster Family Foundation

Books, Articles and Videos

Front cover of "Yearning for Normal"Yearning for Normal
My Son's Life with Deletion 22q.11
by Susan Ellison Busch

This heartbreaking journey will take Susan Busch and her son, Mike, through hospitals, backyards, schoolrooms, psychiatric wards, a court room, a burn unit, and the corridors of Susan's own heart. But beyond the struggles of adjusting to life with this deletion, there is a tale of humanity, with all its sorrow, love, and hope. This story is not just for the parents of children with 22q.11 Deletion syndrome, but for their friends, neighbors, doctors, nurses, teachers, speech therapists, social workers, police officers, paramedics, firefighters, ministers, and whoever else likes a good story.
328 pages - $17.99 (paperback)

Front cover "Your Genes Your Health"Your Genes, Your Health
A Critical Guide That Could Save Your Life
by Aubrey Milunsky, M.D., D.S.c.

A rare, non-technical book about many genetic disorders often not recognized in families, containing valuable information and authoritative guidance for genetic testing.

Front cover "So What's the Difference"So, What's the Difference
A Guide to Helping Children and Young Adults Understand Their Learning Differences
by Donna Cutler-Landsman

This self-help workbook is designed to assist students with disabilities in:
• Understanding causes of disabilities, including genetic causes
• Recognizing individual strengths and weaknesses
• Soliciting help from others (parents, teachers, friends, etc.)
• Understanding the role of special education
• Learning how to be successful
at school
• Studying for tests more effectively
• Getting and staying organized
• Coping with teasing and bullying
• Making and keeping friends
• Coping with sadness and frustration
• Recognizing the struggles of others
• Mapping out and working towards future goals

The workbooks are available in four themes:
butterflies, coral reef, racecar and jungle.

From Emotions to AdvocacyWrightslaw: From Emotions to Advocacy, Second Edition will teach you how to plan, prepare, organize and get quality special education services. In this comprehensive, easy-to-read book, you will learn your childs disability and educational needs, how to create a simple method for organizing your childs file and devising a master plan for your childs special education. You will understand parent-school conflict, how to create paper trails and effective letter writing. This book includes dozens of worksheets, forms and sample letters that you can tailor to your needs. Whether you are new to special education or an experienced advocate this book will provide a clear roadmap to effective advocacy for your child. You will use this book again and again. Paperback: 311 pages * Publisher: Harbor House Law Press, Inc.; 2 edition (January 1, 2006) * Language: English * ISBN-10: 1892320096 * ISBN-13: 978-1892320094

The Everyday AdocateNationally recognized expert on autism advocacy Areva Martin shares her hard-won knowledge as a parent of an autistic child and an individual rights attorney. In The Everyday Advocate, she lays out vital and relevant step-by-step instructions to parents facing the seemingly impossible odds of advocating for a child with autism. Parents need to become activists for their children's rights to services and learn how to safeguard those rights-both in school and in the larger outside world. An invaluable resource, The Everyday Advocate offers practical, real-world actions that work, lists helpful websites and organizations, and gives parents and caregivers the emotional support they need as they face the challenge of successfully standing up for children with special needs. About the Author Areva Martin, Esq. is a nationally recognized expert on autism advocacy who has appeared on Dr. Phil, Good Morning America, and FOX News, and has counseled hundreds of parents of autistic children.
Hardcover: 336 pages * Publisher: NAL Hardcover (April 6, 2010) * Language: English * ISBN-10: 0451230213

The Everything Parent's Guide to Children With Special NeedsDecision maker, provider, advocate, encourager, disciplinarian, teacher. As a parent of a child with special needs, you wear many hats. Every day you face difficult decisions about education, health care, financial planning, and more. With so many unique issues to deal with, you need a comprehensive guide to help you: * Make decisions about education * Choose the best method of discipline * Handle problems at school and with peers * Plan for your child's future * Make time for your own well being There is help out there--in fact, there is more support for children with special needs than ever before--you just need to know where to look for it. With this guide, you'll have the information you need to help your children live life as fully as they can--each and every day. About the Author Lynn Moore (O'Fallon, IL) is an experienced special education teacher and freelance writer. During her more than twenty years in the field of education, she has worked with families of children with a wide variety of special needs. Ms. Moore has a BSEd in special education, as well as certification in early elementary education, and is a certified learning behavioral specialist. She is also certified to work with children who are deaf or hard of hearing. Ms. Moore writes the special needs parenting column for Suite
Paperback: 320 pages * Publisher: Adams Media (September 18, 2009) * Language: English * ISBN-10: 1605501638 * ISBN-13: 978-1605501635

Missing Genetic Pieces "...This book will fill a void in the libraries of families... help parents ask the right questions..." -- Karen J. Golding-Kushner, Ph.D., Executive Director, VCFS Educational Foundation, Inc.
"...for families and healthcare providers. This should help the families cope with complex issues and systems." -- Martha Frisby - MHA-Children's Rehabilitation Services-St. Joseph's hospital, AZ
"This essential handbook offers the reader an insightful look at the pivotal issues concerning 22q11 deletions..." -- Paul Ling Tai M.D, author, surgeon, chemist, and inventor. Michigan
"What a wonderful resource!!... Readers will find this book heart warming, enlightening and uplifting." -- Clare B. Jones, Ph.D. author, diagnostic specialist, and nationally recognized presenter. Scottsdale, AZ
Paperback: 576 pages * Publisher: Desert Pearl Publishing (July 2004) * Language: English * ISBN-10: 097453580X * ISBN-13: 978-0974535807

Married With Special Needs ChildrenFor parents looking for ways to strengthen their marriage, prevent future strife, or resolve or move on from significant relationship difficulties, this guide offers guidance and expertise for taking the next step. Married with Special-Needs Children is also invaluable to mental health professionals, giving them a realistic view of what many of their clients are dealing with on a day-to-day basis. About the Author In addition to raising three children, Laura E. Marshak, Ph.D., is a professor of counseling at Indiana University of Pennsylvania. She also maintains a private psychology practice and sees many parents of children with disabilities. She lives in Pittsburgh, Pennsylvania. Fran P. Prezant, M.Ed., CCC-SLP, is a nationally certified speech and language pathologist, parent trainer, and researcher on disability issues. Currently she is Director of Research and Evaluation at Abilities! (formerly National Center for Disability Services), a non-profit organization dedicated to the full participation of people with disabilities in society. She lives with her husband and two adult children in West Orange, New Jersey. Both authors have written extensively on disabilities issues and co-authored Disability and the Family Lifecycle (Basic Books). Paperback: 352 pages * Publisher: Woodbine House; 1 edition (January 5, 2007) * Language: English * ISBN-10: 1890627100 * ISBN-13: 978-1890627102

More Than A MomMore Than A Mom addresses the universal concerns and questions of all mothers, coupled with the added intensity of raising children with disabilities. This how-to guide looks at the challenges mothers face at home, at work, and within themselves, with special attention paid to: Staying healthy both physically and emotionally; Keeping friendships; Staying organized; Maintaining your marriage; Nurturing interests and goals; Seeking flexible work options; Changing careers or starting a business; Rejoining the workforce; Finding specialized childcare; Advocating for your child. The mothers who were interviewed for the book have diverse backgrounds and family dynamics. Given their differences and the fact that their children have such varied disabilities, it s striking that these mothers face such similar issues. MORE THAN A MOM provides mothers with many voices and solutions that will resonate with their own circumstances. Husbands, extended family, friends, support organizations, and service providers will also want to read this insightful and fact-filled book. Paperback: 487 pages * Publisher: Woodbine House; 1 edition (April 30, 2006) * Language: English * ISBN-10: 1890627518 * ISBN-13: 978-1890627515

Velo-Cardio-Facial-SyndromeVelo-cardio-facial Syndrome (VCFS) is a genetic disorder caused by the deletion of part of chromosome 22. It occurs in approximately one in 4000 births and there are now more than 100 physical phenotypic features reported. VCFS affects every major system in the body and this is the first book to describe its full clinical impact. It has been authored by leading international VCFS clinicians/researchers. The focus is on clinical issues with chapters devoted to psychiatric disorders (with the sufferer showing very high levels of schizophrenia), neuroimaging, speech and language disorders, as well as cardiac, ENT, gastrointestinal, ophthalmic and urological manifestations. Molecular genetics, immunodeficiency and genetic counselling are also covered, and practical approaches to diagnosis and treatment described. As VCFS is seen as a paradigm for other microdeletion disorders, this book will not just appeal to clinicians seeing VCFS patients, but also to those with interests in other genetic disorders.
Hardcover: 256 pages * Publisher: Cambridge University Press; 1 edition (July 11, 2005) * Language: English * ISBN-10: 0521821851 * ISBN-13: 978-0521821858

The Young MindSadly, millions of children today are affected by mental health problems, almost a doubling of the number of sufferers in just one generation. Illustrated and written in a completely accessible style by some of the most distinguished and respected professionals in the field of child and adolescent psychiatry, this book offers a guiding hand and insight into this most vital area of mental health. With chapters covering subjects such as child and adolescent development, parenting skills, problems at school, and emotional health and well-being, the handbook also looks specifically at some of the most distressing problems facing young people today, including anxiety and stress disorders, drugs, alcohol, self-harm, and psycho-sexual development. Paperback: 420 pages * Publisher: Transworld Publishers (October 19, 2009) * Language: English * ISBN-10: 0593061381 * ISBN-13: 978-0593061381

Surviving SchizophreniaSince its first publication nearly twenty years ago, Surviving Schizophrenia has become the standard reference book on the disease, helping thousands of patients, families, and mental health professionals to better deal with the condition.  In clear and compassionate language, Dr. E. Fuller Torrey explains the nature causes, symptoms, and treatment of this often misunderstood illness. 
Paperback: 544 pages * Publisher: Harper Paperbacks; 4th Edition (May 8, 2001) * Language: English * ISBN-10:0060959193 * ISBN-13: 978-0060959197


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Disability Accommodation Cost Guides



Silas Story DiGeorge Syndrome—The Doctors

UC Davis MIND Institute

Hearing and Speech Resources

Directory of Audiology and Speech-Language Pathology

Self-Help Groups for Speech, Language, and Swallowing Disorders

United States Society for Augmentative and Alternative Communication

Speaking Freely: Empowering Speech Therapy Apps

10 Tips for Selecting Toys for Your Speech Delayed Child

Learning Disabilities Association of America

American Academy of Audiology - Resources for Kids & Teens

Rights for Those with Hearing Loss

Hearing Loss Association of America

Career Assistance for Deaf and Hearing Impaired

Socialization and the Child who is Deaf or Hard of Hearing

American Sign Language Resource Guide