Raising Kids with Noonan Syndrome

Most parents would agree that raising children is challenging enough without the complications of a genetic condition. As Lauren gets older and faces each new challenge, I want to be prepared with reference materials, activities, books... anything I can get or provide that will help us face each challenge together.

I can't speak for the quality of the camps nor have I read every book listed (yet) but it is my intention to review each service and read each book as time allows. Those that ring true to my nature will stay. Those that seem unsuitable or 'fluffy' will go. Not all are specific to NS or the disorders thereof but my hope is they provide an insight to dealing with differences and give us ideas on how to cope and how to help our children cope. The list is in no particular order and the descriptions are from online book lists.

If you have a favourite or have had an excellent experience with a support group, organization or camp, please let us know!

Camps / Support Groups

About Face (http://www.aboutfaceinternational.org/)
Lose the Training Wheels (http://www.losethetrainingwheels.org/)
Making Faces (http://www.makingfaces.ca/)
Ontario Support Group – Facebook (https://www.facebook.com/groups/NoonanSyndromeSupportOntario/)
The Noonan Syndrome Foundation – (http://www.teamnoonan.org)

Books

For Adults, Parents and Caregivers

The Boy in the Moon, Ian Brown
When Walker Brown – the son of journalists Ian Brown and Johanna Schneller – was seven months old, doctors diagnosed him with CFC syndrome, a rare genetic mutation currently identified in only 300 people worldwide. Now 13, Walker weighs less than 60 pounds, can’t speak, and mentally and developmentally falls between one and three years old. He is also a boy who lives in the moment – the state of pure being that Buddhists strive for, as one doctor points out. A great laughter who loves beautiful women, he also possesses “an often charming cocktail-party personality,” writes Ian Brown. You can read the story online at The Globe and Mail.
[Review: I LOVE this book. Ian Brown writes clearly and from the heart. While CFC isn't Noonan Syndrome, they are both on the RAS-MAPK pathway and many of Walker's features - the challenges faced - are similar to what NS parents see and deal with. I expect most of our cases aren't as severe but I can understand and relate to their story. It is definitely worth the read!~R]

From the Heart - On Being the Mother of a Child with Special Needs, Edited by Jayne D. B. Marsh
Nine mothers share the intense, sometimes painful, emotional terrain of raising a child with special needs.
[Review: I found this book encouraging. There's no helping, no telling me what to do to cope, just mothers sharing moments of their lives. It reminded me that others have gone through similar (and in some cases worse) things that I am and have survived to talk about it.. ~R]

People with Disabilities, Pete Sanders
Discusses what it means to have a physical impairment or learning disability and the effects of such challenges on the disabled person and those around him.

Living with Learning Disabilities, David E. Hall
Describes various learning disabilities, such as attention deficit disorder, fine motor problems, and difficulties with visual information, and offers positive advice on how to cope.

Disabled and Challenged: Reach for Your Dreams! Terry Scott Cohen
With his psychologist dad, Barry M. Cohen, Ph.D., Terry has written an inspiring book for young people who are facing life-long disabilities of all kinds - and for those who love and care for them as well. Terry shares his experiences and know-how for reaching a full life. He speaks frankly and in a language that children and young adults can easily understand and enjoy, peppering sage advice amid personal anecdotes to help others cope with the many challenges ahead.

Understanding Your Special Needs Grandchild, Clare B. Jones
Grandparents of children with special needs, unlike parents and teachers, don’t always have the facts they need to understand their grandchild. This special resource offers grandparents the information they need to realize the valuable role they play in the lives of their grandchild, giving advice on how they can offer support to better their grandchild’s self-esteem and quality of life in school, at home, and with others. Conditions such as learning disabilities, ADHD, Asperger’s syndrome, autism, Tourette’s disorder, speech and learning delays, and emotional and behavioral problems are discussed.

Learning Disabilities, David Race
The study of learning disability features rarely in university courses. To a large extent this reflects the low value attributed by our society and its human services to people with learning difficulties. This unusual book, based on one of those rare courses, includes contributions from academic specialists, students and people with learning difficulties, all of whom have participated in the course. This 'social approach' challenges the very ides of what should be taught about the subject of disability and who should teach it.

For Kids

Jungle Drums, Graeme Base
Little Ngiri is the Smallest Warthog in Africa. Tired of being teased by his bigger brothers and sisters, he wishes things could be different. When Old Nyumbu the Wildebeest gives Ngiri a set of magic drums, he is sure his wish is about to come true. But all the animals of the jungle are in for a BIG surprise as Ngiri's wish is granted in a most unexpected way.
>We love this book! Ngiri tries to take matters into his own hands for coping with the teasing that goes with being the smallest. In the end, the animals realize he is who he is just like they are. The lesson is subtle but the book is enjoyable through and through. Graeme Base is a remarkable illustrator too with lots to admire in every page.

Leo the Late Bloomer, Robert Kraus
The story of Leo is the story of many a child. He does not speak, or eat nicely. He does not draw or do anything particularly well. This comes as a bit of a concern to Leo's dad, but him mother reassures him that in time Leo will "bloom".

Elana’s Ears, or How I Became the Best Big Sister in the World, Gloria Roth Lowell
Lacey's luxurious life as an "only dog" changes the day Mom and Dad bring home a new baby. While Lacey goes through all of the confusion and upset that any child feels when presented with a new sister or brother, she eventually starts to like having baby Elana around, and even tries to teach her a favorite hobby: barking. But when Elana takes no notice of all the noise, Lacey realizes that Elana can't hear. First, she helps Mom and Dad figure it out, then she vows to become "Elana's ears"-and the best big sister in the world. With wry canine commentary, Lacey offers children a refreshingly honest and funny glimpse at parents, new babies, and growing toddlers.

Don’t Call Me Special, Pat Thomas
This delightful picture book explores questions and concerns about physical disabilities in a simple and reassuring way. Younger children can find out about individual disabilities, special equipment that is available to help the disabled, and how people of all ages can deal with disabilities and live happy and full lives.

Survival Guide for Kids with LD, Fisher and Cummings
This revised and updated edition retains the best of the original edition: the warmth, affirmation, and solid information kids need to know they’re smart and can learn, they just learn differently. It answers the many questions they have, like “Why is it hard for kids with LD to learn?” and “What happens when you grow up?” It explains what LD means (and doesn’t mean); defines different kinds of LD; describes what happens in LD programs; helps kids deal with sad, hurt, and angry feelings; suggests ways to get along better in school and at home; and inspires young people to set goals and plan for the future. Includes resources for parents and teachers.

Josh: A Boy with Dyslexia, Caroline Janover
Fifth grader Josh Grant is dreading the first day of school. As his brother has reminded him, he's a "learning-disabled dummy". Josh wishes he could just stay home.... Written with candor and insight (author Caroline Janover has dyslexia), this book takes us into the mind and heart of a boy with LD.

Never Sell Yourself Short, Stephanie Riggs
Fourteen-year-old Josh was born with achondroplasia, the most common form of dwarfism. In this photo-essay, Josh talks about his life, describing the challenges he faces along with his plans for the future. Like many "little people, " Josh has trouble breathing at night so he wears a mask that blows pressurized air into his lungs. He also has to have his clothes altered and he needs help sometimes due to his height. But Josh most likes to emphasize the things that make him like his friends: he plays sports, rides a bike, and is a leader at his school. He believes that everyone faces challenges of some kind. He's taught his friends that "the more comfortable you are with yourself, the more comfortable the world will be with you."

Button in Her Ear, Ada Bassett Litchfield
A little girl relates how her hearing deficiency is detected and corrected with the use of a hearing aid.

What about Me? When Brothers and Sisters Get Sick, Allan Peterkin
Laura experiences conflicting emotions when her brother becomes seriously ill. Includes suggestions for parents to help their well children cope with a chronically ill sibling.

The Deaf Musicians, Pete Seeger
Living legend and Kennedy Center honoree Pete Seeger, renowned poet Paul DuBois Jacobs, and Coretta Scott King honor winner R. Gregory Christie present a jazzy riff on the power of music, overcoming obstacles, and all the different ways to hear the world. So, who will listen to a deaf musician? Everyone!

The Lightning Thief, Rick Riordan
The main character, Percy, has learning disabilities (ADHD&Dyslexia). Percy does not allow these disabilities to hold him back and he becomes a hero throughout this book.

For Teens

Taking Charge: Teenagers Talk About Life and Physical Disabilities, Kay Harries Kriegsman
Discusses such topics as independence, self-esteem, relationships, and sexuality from the perspective of teenagers with various physical disabilities.

See Me More Clearly: Career and Life Planning for Teens with Physical Disabilities, Joyce Slayton Mitchell
A guide designed to help disabled teenage students make constructive and positive decisions about their lives, education, and careers.

Disabled and Challenged: Reach for Your Dreams! Terry Scott Cohen
With his psychologist dad, Barry M. Cohen, Ph.D., Terry has written an inspiring book for young people who are facing life-long disabilities of all kinds - and for those who love and care for them as well. Terry shares his experiences and know-how for reaching a full life. He speaks frankly and in a language that children and young adults can easily understand and enjoy, peppering sage advice amid personal anecdotes to help others cope with the many challenges ahead.

Image and Identity: Becoming the Person You Are. The Ultimate Teen Guide, David E. Hall
This guide for teenagers provides tools for exploring their developing identities. Some of the aspects of identity covered include family, ethnicity, gender, sexual orientation, friends, school interests, work, and aspirations. A number of health- and body-related issues are also discussed, including tattoos, plastic surgery, eating disorders, physical disabilities, and steroids. Gowen teaches community health at Portland State U., and McKenna is a psychologist in private practice.

People with Disabilities, Pete Sanders
Discusses what it means to have a physical impairment or learning disability and the effects of such challenges on the disabled person and those around him.

Finding My Voice, Joyce Libal
Speech impairment is a common challenge among youth. Unfortunately, it is a challenge that, despite its frequency, can cause severe emotional and social distress for those who experience it. Stigma and prejudice can present particularly difficult emotional trials and social roadblocks to youth with speech impairments. All too often, these young people are assumed to be less capable, immature, or even unintelligent because of their communication barriers.

Easy for You to Say, Q&A for Teens Living with Chronic Illness or Disability, Miriam Kaufman
Profiles of, and honest answers for, teenagers with chronic illness or disabilities that make their live a real challenge. Practical advice and straight talk on questions many teenagers would be too embarrassed to ask, but need answers for.

My Thirteenth Winter, Samantha Abeel
Samantha Abeel couldn't tell time, remember her locker combination, or count out change at a checkout counter -- and she was in seventh grade. For a straight-A student like Samantha, problems like these made no sense. She dreaded school, and began having anxiety attacks. In her thirteenth winter, she found the courage to confront her problems -- and was diagnosed with a learning disability. Slowly, Samantha's life began to change again. She discovered that she was stronger than she'd ever thought possible -- and that sometimes, when things look bleakest, hope is closer than you think.

The Ocean Inside: Youth Who are Deaf and Hard of Hearing, Autumn Libal
In The Ocean Inside: Youth Who Are Deaf and Hard of Hearing, you will follow Denzel through his own journey through deafness. As you do, you will learn: the unique challenges facing children who are deaf and hard of hearing, strategies for dealing with these challenges and approaches to deaf education, and accomplishments that other deaf people have made along the way.

A Different Way of Seeing, Patti Souder
In A Different Way of Seeing: Youth with Visual Impairments and Blindness, you will learn about many different visual disorders, what can cause them, and resources to help deal with the challenges visual impairments can bring. As you follow Kyla's story, you will learn what it is like to be visually impaired. Along the way, you will also learn about the resources and adaptive devices-like white canes, guide dogs, Braille, blind camps, music programs, and sports opportunities-available to help youth with blindness or vision impairment. People with vision impairments have many stories to tell-stories of determination, hope, and accomplishment.

Physical Disabilities, Denise Thornton
The issues rising from family, school, and relationships are the same for most teens, but teens who have visual, hearing, or physical impairments have additional obstacles to cope with and overcome as they enter young adulthood. This book addresses the special issues that teens who have physical disabilities must tackle, such as school, relationships, sports and recreation, assistive technology, driving, preparing for life after high school, and more. Teens, parents, teachers, and medical professionals will find this to be a valuable resource.

Image and Identity, L. Kris Gowen
This guide for teenagers provides tools for exploring their developing identities. Some of the aspects of identity covered include family, ethnicity, gender, sexual orientation, friends, school interests, work, and aspirations. A number of health- and body-related issues are also discussed, including tattoos, plastic surgery, eating disorders, physical disabilities, and steroids.

Dealing with Death

Lifetimes: The Beautiful Way to Explain Death to Children, Bryan Mellonie
A pet . . . a friend . . . or a relative dies, and it must be explained to a child. This sensitive book is a useful tool in explaining to children that death is a part of life and that, eventually, all living things reach the end of their own special lifetimes.

I Wish I Could Hold Your Hand: A Child’s Guide to Death and Loss, Pat Palmer
A best friend has moved away, Dad no longer lives with the family, or a favorite pet has died. This warm, comforting book gently helps grieving children identify their feelings and learn to accept and deal with them. Wonderful heart-warming illustrations and simple, direct writing help children discover that it is normal and natural to feel the pain of loss.

Scientific Reference

Genetics and Society, Ikhide Pilnick
This is a book about contemporary developments in the scientific understanding of genetics, and the ways in which these are transforming possible relations between humans and the world around them. It is the first book of its kind, aiming to encourage readers to critically examine social issues that relate to genetic science and practice, and to consider the links between social theory and the research and practice of genetic science. The focus is mainly, though not exclusively, on human genetics, exploring those developments that are seen as most significant in terms of public perceptions, social impact, or public policy. It covers a wide range of current and potential applications of genetic science and is clearly and accessibly written, assuming no prior biological knowledge on the part of the reader. Instead, genetic knowledge is placed in its social context.

Noonan Syndrome and Related Disorders, A Matter of Deregulated Ras Signaling, Karger (pub)
This one I have read. It's geared to the medical community but if you have the patience and inclination to slog through it, there is an excellent history of NS written by Dr. Noonan. The article on genotype-phenotype relationships is enlightening and, embowering - knowing what is more or less likely based on the specific genetic mutation. Not worth the ticket price but worth the interlibrary loan.

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