The selection of books listed below has been put together to
help anybody living or working with an individual diagnosed with 22q DS. Some books have been specifically
written about the condition.
Others are more general in nature written to support family members of
anybody with special needs.
By listing these books on our website, The 22Crew aren’t
recommending these books over any others which may have been written on the
Each book is grouped and listed by title. The ISBN of each book is given so that
you can search your local library, bookshop or online retailer for your own copy. The price of each book is given in
pound sterling, US dollars and Euros and was correct as at 2 February 2012 on
Amazon and Shopireland.
The descriptions about each book are currently those given
on Amazon and have been included on this page to help you select the most appropriate book for your needs. As our members offer their own reviews of the books, their descriptions will be added because we feel they are more relevant to individuals using our website.
Please email your reviews and or book suggestions to us at the usual address. See our 'Contact Us' page for details.
A Different Life
by Quinn Bradlee
Ten percent of the population is affected by a learning disability, but few of us understand what being learning disabled (LD) is really like. When he was fourteen, Bradlee was diagnosed with Velo-Cardio- Facial-Syndrome (VCFS), a wide-spread, little-understood disorder that is expressed through a wide range of physical ailments and learning disabilities. In this funny, moving, and often irreverent book, Bradlee tells his own inspirational story of growing up as an LD kid and of doing so as the child of larger-than-life, formidably accomplished parents: long-time Washington Post executive editor Ben Bradlee and bestselling author Sally Quinn. From his difficulties reading social cues, to his cringe-worthy loss of sexual innocence, Bradlee describes the challenges and joys of living a different life with disarming candor and humor. By the end of A Different Life he will have become, if not your best friend, one of your favourite people.
ISBN-10: 1586488074ISBN-13: 978-1586488079
Being Different: Growing up with impairments [Kindle Edition]
by Daniella Krijger
Daniella is worried about the future of her son Tijn. He has been diagnosed with 22Q11-deletionsyndrome (VCFS or 22Q11DS) and has also ADHD, autism spectrum disorder and Dyslexia. She wanted to know how people with a syndrome, disorder or impairment led their lives, what they had been through and whether they had been able to make their dreams come true – despite these obstacles. What is it like to be ‘different’? How does it feel when others see you as being ‘different’ and treat you ‘differently’?
In this inspiring book adolescents and adults with 22Q11-deletionsyndrome, ADHD and ASD tell about their dreams and ambitions. About friendships, love, education, work, drugs and depressions. Young people with a disability or limitation have to work harder at doing their best. Besides growing up, with all its inherent insecurities, they have the additional challenge of biases and incomprehension. Ensuring that more people know about VCFS/22q11-deletion syndrome will hopefully contribute to more understanding and patience for these people who might seem different but who are as ordinary as anyone else.
Daniella Krijger has two sons and lives in The Netherlands. She is founder of Stichting Hoezo Anders (What Difference Foundation) and supports activities that ensure young people with an invisible limitation or chronic disease to develop a positive self-image, to find their way in society and to be appreciated for what they can do.
Velo-Cardio-Facial Syndrome: Diagnosis and Evaluation v. 1
by Robert J Shprintzen and Karen Golding-Kushner
Click here for parent review
Velo-cardio-facial Syndrome: v. II: Treatment of Communication Disorders
by Robert J Shprintzen and Karen Golding-Kushner
Click here for parent review
Velo-Cardio-Facial Syndrome: A Model for Understanding Microdeletion Disorders
by Kieran C Murphy and Peter J Scambler
Velo-Cardio-Facial Syndrome (VCFS) is a genetic disorder caused by deletion of part of chromosome 22. The focus is clinical issues with chapters devoted to psychiatric disorders, neuroimaging, speech and language, cardiac, ENT, gastrointestinal, ophthalmic and urological manifestations. This 2005 book has been authored by leading international VCFS clinicians and researchers. 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 interested in other genetic disorders.
Educating Children with Velo-cardio-facial Syndrome
by Donna Cutler-Landsman
Ten academics, researchers, and educational consultants from the U.S., Israel, and Switzerland contribute 14 chapters to the first book addressing the educational needs of children with velo-cardio-facial syndrome (VCFS).
For Parents / Carers
Missing Genetic Pieces
by Sherry Baker-Gomez
review: There are very few books on
22q11 deletion, and they are pretty expensive. If you only go for one, I would
recommend this. I am a mother of a 2 year old with 22q11 deletion
(VCFS/DiGeorge) and it's by far the best book I have found in the last 18
months since I found out about my son's condition. It's very parent-friendly
and has stacks of information in it, from medical symptoms through to
education, emotions, all sorts of stuff. It covers from newborn through to
adults with the condition, with plenty of information and interesting parents
stories in between. This will be a book you will keep on your book shelf
forever if you have a child with this condition, so it's worth the price tag.
Special-Needs Children: A Couples' Guide to Keeping Connected
by Laura E Marshak and
Fran P Prezant
Married with Special-Needs Children looks at the ways in which having a
child with special needs can make it more difficult for a marriage to thrive
and how a child's intensive needs can change the structure of a marriage. The
authors examine many of the underlying stresses and common pitfalls --a
couple's differing coping mechanisms and expectations of a child, communication
breakdowns and difficulties resolving conflicts, for example. They then present
a wide range of strategies for handling or preventing these problems. Marshak
and Prezant also describe what makes a marriage strong deal with serious
marital troubles and divorce considerations. Throughout are quotes from
husbands and wives, offering special insight into what was especially difficult
for them, what solutions they've discovered, and what they wished they'd done
For 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.
More Than a Mom:
Living a Full And Balanced Life When Your Child Has Special Needs
Heather Fawcett and Amy Baskin
More Than A Mom
explores how women can lead rich, fulfilling personal lives while parenting a
child with special needs. The authors' skilful blend of research, personal
experiences, and feedback from over 500 mothers across North America results in
a book that is jam-packed with practical strategies, advice, and reassurance
for mothers trying to create more manageable and fulfilling lives. The book 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
Staying healthy both
physically and emotionally;
Seeking flexible work
Changing careers or
starting a business;
Advocating for your
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
Shut Up About Your
Perfect Kid: A Survival Guide for Ordinary Parents of Special Children
by Gina Gallagher and
On a “perfection-preoccupied
planet,” sisters Gina and Patty dare to speak up about the frustrations, sadness,
and stigmas they face as parents of children with disabilities (one with
Asperger’s syndrome, the other with bipolar disorder).
This refreshingly frank book, which will
alternately make you want to tear your hair out and laugh your head off, should
be required reading for parents of disabled children. Shut Up About
Your Perfect Kid provides wise
and funny advice about how to:
• Find a support
group—either online or in your community
• Ensure that your child
gets the right in-school support
• Deal with people—be
they friends, family members, or strangers—who say or do
to you or your child
• Find fun, safe, and
inclusive extracurricular activities for your child
• Battle your own grief
and seek professional help if you need it
• Keep the rest of the
family intact in moments of crisis
Social Skills Training For Children and Adolescents with Asperger Syndrome
by Jed E Baker
A social skills program that covers all the bases. Whether it's learning how long one can look at somebody without being accused of staring; how to shift topics, despite one's desire to stick with that all-consuming special interest; how to say no to peer pressure; or dealing with a sensitive topic - it's all here... and more. In this comprehensive and user friendly book, the author translates years of experience working with students wiht Asperger Syndrome and social-communication difficulties. After brief introductory chapters on skills to target, instructional strategies, behavior management, promoting generalization, etc., the reader is presented with the essence of this must-have resource: 70 of the skills that most commonly cause difficulty for individuals with autism spectrum disorders and social-communications problems. The presentation of each skill consists of a reproducible skill handout, as well as activity sheets listing ways teachers and parents can demonstrate, practice, and reinforce the skill in the classroom and at home.
For Children, Teenagers and Adults with 22q DS
Socially Curious and Curiously Social: A Social Thinking Guidebook for Bright Teens & Young Adults
by Michelle Garcia Winner and Pamela Crooke
The anime-illustrated guidebook is written in the language of teens, as a “get real” discussion about what really goes on inside the minds of people when we share space together. Adults also use the book to use with students and to learn about and help discuss and unravel the social-emotional world of the students we're working with.
Many practical strategies help the reader figure out what impression they are making on others, how this affects their own emotions and what they could work on to make living in the increasingly complex social world more personally rewarding. Who doesn’t think they could improve in these skills and improve their casual to more complex relationships?
From discussing the “ins and outs” of what it means to be a “Social Thinker” and use related social skills, to figuring out texting, dating, the many different levels of friendship and the many and varied emotions we experience as we relate to others, the authors describe the real world of being with other people. This includes knowing how to sometimes just "fake it” better! The authors are not trying to get every reader to find a group to hang out with; instead, they are providing information to help each person find his or her place and be appreciated by others at whatever level he or she feels comfortable with.
Parents, teachers, counselors, other caregivers and even siblings may also find this book compelling, as it provides some “ah ha” moments that encourage a deeper discussion with these older kids about the social world. While we all work on improving our communication skills, few of us know how to talk about the social mind and how to cope in our very social world of the classroom, hanging out, holding a job, chatting on the Internet, texting and whatever the future holds.
The Social Success Workbook for Teens
by Barbara Cooper, Nancy Widdows
After completing the activities in this workbook, you will discover that you can get along with others and build friendships despite the challenges you face. All you need is the confidence to be yourself while still keeping the feelings of others in mind.
Making friends is a skill like any other-there are rules to follow, ways to measure your progress, and reasons why some people are better at it than others. Although it may seem like this skill comes naturally to those who don't have Asperger's disorder, nonverbal learning disorder (NLD), or other problems relating to others, the reality is that even the most popular people must constantly hone their abilities in order to make new friends and keep the friends they already have. This workbook includes forty activities you can do to recognize and use your unique strengths, understand the unspoken rules behind how people relate to each other, and improve your social skills.
Snivel and Shriek Guide to Feeling Fabulous
by Kate Watson
These colourful workbooks are aimed at children working in a 1-to-1 or small group context. Through quizzes, doodling and jotting down the activities are designed to raise children's self awareness by developing important skills, such as communication, personal organisation and problem solving. Ideal for children aged around 8 - 14 years.
- ISBN-10: 0955963648
- ISBN-13: 978-0955963643
Living With a Brother
or Sister With Special Needs: A Book for Sibs
by Donald Meyer and
"Living with a Brother or
Sister with Special Needs" focuses on the intensity of emotions that
brothers and sisters experience when they have a sibling with special needs,
and the hard questions they ask: What caused my sibling's disability? Could my
own child have a disability as well? What will happen to my brother or sister
if my parents die? Written for young readers, the book discusses specific
disabilities in easy to understand terms. It talks about the good and not-so-good
parts of having a brother or sister who has special needs, and offers
suggestions for how to make life easier for everyone in the family. The book is
a wonderful resource, not just for siblings and their parents but also for
teachers and other professionals who work with children with special needs.
This revised and updated edition includes new sections on attention deficit
hyperactivity disorder, fetal alcohol syndrome, fragile X syndrome, traumatic
brain injuries, ultrasound, speech therapy, recent legislation on disabilities,
and an extensive bibliography.
The Sibling Slam Book:
What It's Really Like To Have A Brother Or Sister With Special Needs
by Donald Meyer and
Give teenagers a chance to say
what's on their minds, and you might be surprised by what you hear. That's
exactly what Don Meyer did when he invited together a group of 80 teenagers,
from all over the United States and abroad, to talk about what it's like to
have a brother or sister with special needs. Their unedited words are found in this
book, a brutally honest, non-PC look at the lives, experiences, and opinions of
siblings without disabilities. This book poses a series of 50 personal
questions along the lines of: What should we know about you? What do you tell
your friends about your sib's disability? What's the weirdest question you have
ever been asked about your sib? If you could change one thing about your sib
(or your sib's disability) what would it be? What annoys you most about how
people treat your sib? Whether they read it cover to cover or sample it at
random, teenagers will surely find common ground among these pages and
reassurance that they are not alone. It is a book that parents, friends, and
counsellors can feel confident recommending to any teenager with a brother or
sister with a disability.
Views from Our Shoes:
Growing Up with a Brother or Sister with Special Needs
by Donald Joseph Meyer
In ‘Views From Our Shoes’, 45
siblings share their experiences as the brother or sister of someone with a
disability. The children whose essays are featured here range from four to
eighteen and are the siblings of youngsters with a variety of special needs,
including autism, cerebral palsy, developmental delays, ADD, hydrocephalus,
visual and hearing impairments, Down and Tourette syndromes. Their personal
tales introduce young siblings to others like them, perhaps for the first time,
and allow them to compare experiences. A glossary of disabilities provides
easy-to-understand definitions of many of the conditions mentioned.
Being the Other One: Growing Up with a Brother or Sister Who Has Special Needs
by Kate Strohm
| When there's a disabled child in the family, how are normally developing siblings affected? According to Kate Strohm, a counselor and health educator, siblings of the disabled face particular emotional challenges that are often overlooked. Able siblings commonly struggle with feelings of isolation, grief, anger, and anxiety—and these and other emotional issues can have lifelong effects. |
Being the Other One is based on the author's own experience (as a sibling of a sister with cerebral palsy) and on extensive interviews she conducted with siblings of all ages. In clear and compassionate terms, Strohm explores the often secret feelings of siblings and offers valuable strategies for coping with the challenges they face.
Being the Other One reveals the difficulties faced by siblings at all stages of life, from early childhood through adulthood, when siblings must often assume responsibility for the care of their disabled brothers and sisters. Though the book looks honestly at the many challenges that siblings face, it is full of encouragement and practical strategies. Strohm emphasizes that when siblings are able to clearly identify and openly express their feelings and concerns—and when parents and health professionals offer the needed support—siblings can thrive. This book includes writing exercises for personal exploration and a substantial resources section listing helpful books, organizations, and websites.