Top Ten Books for Parenting Children With Disabilities

Top Ten Books for Parenting Children With Disabilities

Special Needs Art !These ten books all make two similar points: 1) Your child is more than a syndrome or symptoms or disability, and 2) Navigating the bureaucracy associated with having a child with a disability is challenging. In their own ways, these memoirs and advice books provide advice and comfort not just to parents whose children share a similar issue, but to all. Lessons about self-reliance and acceptance are important for all kids.

These books were published in this century, which makes sense given that we know so much more about how young brains and bodies develop than we ever have before. All of them also talk about similar acronyms like IDEA, IEE, and 504. While some of the books focus on just one special need (like autism or learning disabilities or genetic conditions or Down’s syndrome), together they look to the future in some way, helping children to develop into adulthood—when they will become adults with disabilities, a specific population two books on the list focus upon.

Be sure to consult the books for lists of resources and suggestions for further reading, and don’t let some of the scientific journal articles listed scare you off. Remember you know your child better than anyone else. Educate yourself and trust your gut.

Parenting Children with Health Issues and Special Needs by Foster Cline and Lisa Greene

This condensed version of 2007’s Parenting Children with Health Issues is a useful volume that focuses on the emotional development of ill children. While originally written for kids who have chronic medical conditions (like diabetes or cystic fibrosis), the 2009 version also includes advice for those with autism, learning disabilities, and other similar conditions. More importantly, it has advice for all parents—like nurturing self-concept and being a consultant parent rather than a drill sergeant or helicopter. The main take-away is that children need to learn to take responsibility for their own bodies and adhere to medical advice. This can happen by 4th or 5th grades, but certainly needs to happen by high school. Parents can let children choose when to do treatments, but not if; banking lots of smaller choices means parents can sometimes cash in bigger requests or respond with, “I love you too much to argue.”

A Good and Perfect Gift: Faith, Expectation, and a Little Girl Named Penny by Amy Julia Becker

I dare you to read this book and not tear up several times at the rawness of Becker’s emotion in describing her relationship with her first-born, Penny. The Beckers faced an unusual situation in this day of prenatal testing: they were surprised when their daughter was born with Down’s syndrome. A Good and Perfect Gift chronicles how Amy Julia and her husband, along with their families, friends, and students, come to understand Penny and what she adds to their communities. Published by a Christian Press there is quite a lot of religiously-motivated discussion, but for those unfamiliar with this point of view it won’t distract from the larger messages of the book. Becker finds that Penny having Down’s syndrome was hardest to deal with in the abstract, but once they were in a room together she became nothing more than their wonderful daughter who happens to have an extra chromosome. The lessons about pity versus compassion will help all of us who know someone with a special needs child.

The Boy in the Moon: A Father’s Journey to Understand His Extraordinary Son by Ian Brown

The Boy in the Moon is Canadian journalist Ian Brown’s lyrical memoir about his son, Walker. Walker suffers from a rare orphan genetic syndrome (meaning it comes out of nowhere), labelled Cardiofaciocutaneous (CFC). Given the small numbers who have it not much research is devoted to studying CFC, and as Brown soon learns he often knows more about it than the pediatricians he sees (as do the other parents with CFC children he meets and stays connected with via the Internet). This is partly because, as Brown describes, “High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level.” Yet, parents will see themselves in the constant fights Brown and his wife have over who is getting more sleep (though their fight goes on for 11 years). Brown’s story reminds us that we all need to be advocates for our children to help them develop the best inner and outer lives possible.

Will My Kid Grow Out Of It? A Child Psychologist’s Guide to Understanding Worrisome Behavior by Bonny J. Forrest

Dr. Forrest’s practical guide will appeal to parents who are worried their children may be depressed, autistic, ADHD, schizophrenic, or have an eating or learning disorder. While she is clear that Will My Kid Grow Out Of It? is not meant to be a substitute for professional advice, her advice is plentiful. She believes there is no downside to screening a child because a parent will either get reassurance or get early access to the resources a child needs. Forrest reminds us that, “Although one in seven children has some form of developmental disability, fewer than half the pediatricians in the country screen children for these disorders.” On top of that there are few gold standard research studies in child psychology and lots of “cures” in the popular media; she discusses these and suggests questions parents should ask when choosing professional to help children. Note this book offers a useful bibliography divided into sections like scientific journal articles, books, and websites.

Thinking Differently: An Inspiring Guide for Parents of Children with Learning Disabilities by David Flink

Like Dr. Forrest, Flink pushes testing and assessment for children because it helps families and schools build profiles that can lead to useful interventions. Flink focuses on “learning disabilities,” which are, “Generally understood to be an umbrella term for neurological difficulties in the brain’s ability to receive, process, store, express, and respond to information.” Flink himself has been diagnosed with a learning disability, dyslexia, and ADHD, and he is an expert in navigating how to use the educational system to get help. On top of that, he started a mentoring program called Eye to Eye, that links college students with LDs to middle schoolers. Flink’s own story of attending an Ivy League college, and authorship of this book, should help reassure parents that a label doesn’t define a child. His Chapter 3, “Take Action,” is especially helpful in explaining to parents the laws and evaluations that can help children access help (his discussion about whether to hire an independent evaluator or use the one the school provides is important).

Essential First Steps for Parents of Children with Autism: Helping the Littlest Learners by Lara Delmoline and Sandra L. Harris

This short book by two professors who run the Douglass Developmental Disabilities Center at Rutgers University is packed full of useful information. Each chapter starts with the story of a specific family who has a child with an autism spectrum disorder and ends with a list of further reading and resources related to that chapter whether it be on self-help skills or play. Delmoline and Harris write that 20-30 years ago it would have been unlikely to get a diagnosis for a child under three, and usually not until five or six. But with powerful interventions, like Applied Behavior Analysis, younger children can benefit greatly. The authors emphasize though that any intervention needs to be done by a trained professional who should know just as much about what treatments haven’t worked as those that have. A focus on your individual child and data on him or her is also vital to seeing changes in child’s performance and behavior—so parents, start taking notes!

The Out-of-Sync Child: Recognizing and Coping with Sensory Processing Disorder by Carol Stock Kranowitz

Sensory processing disorder is seen as a new definition of an old problem. Until recently it was often overlooked, except by occupational therapists who are most effective in helping children with a range of sensory processing issues. Like other authors on this list, Kranowitz is a strong advocate for early intervention—even recognizing that insurance doesn’t always cover the cost of therapy, mainly because the disorder still isn’t included in the latest DSM. Regardless of whether your child has sensory issues, or other medical needs, you should read the section in Chapter 8 on how to build a relationship between a therapist and child (hint: emphasize that it’s fun). Kranowitz presents many checklists and questionnaires throughout the comprehensive book, but her images are also useful, like saying we should think of sensory processing disorder like indigestion of the brain and just like an antacid soothes, kids need occupational therapy to smooth their neural pathways.

The Complete Guide to Creating a Special Needs Life Plan: A Comprehensive Approach Integrating Life, Resource, Financial, and Legal Planning to Ensure a Brighter Future for a Person with a Disability by Hal Wright

Eventually many children with special needs develop into adults with special needs. Hal Wright is a Certified Financial Planner who has a daughter with Down’s syndrome. This book deals with various forms of planning, but the sections on financial and legal planning are especially useful. Wright talks about siblings and how parents need to be fair to help all children financially, while also knowing siblings often take on other burdens related to special needs siblings. He cautions that just as state disability services “are more extensive for people with developmental disabilities than for those with mental illness or physical disabilities. There is also a greater emphasis on the needs of pre-school and school-age children than for adults.” It is up to parents to plan ahead and deal with the practical intricacies as children become adults and this book acts as a sueful guide.

Parenting an Adult with Disabilities or Special Needs: Everything You Need to Know to Plan for and Protect Your Child’s Future by Peggy Lou Morgan

If Wright’s book focuses on the practicalities of having an adult child with special needs, Morgan’s book focuses on the actual caring issues. She writes, “All parents deal with the sometimes-paralyzing question of what happens to adult children when we can no longer be there for them. While legal documents are very important, they may not prepare caregivers, nominated representatives, or others to understand someone who may not be able to communicate his needs directly.” For Morgan the title of Chapter 3 says a lot, “Loneliness is the Only Real Disability.” She explains that even service dogs can be helpful, though many residential homes don’t allow them. Nonetheless creating social connections important for special needs kids/adults—especially if parents are not able to be around much, if at all. The sample caregiver’s manual in the appendices is important for anyone working on this daunting task.

Touchpoints Birth to Three: You Child’s Emotional and Behavioral Development by T. Berry Brazelton and Joshua Sparrow

You might be surprised to find a book on this list that focuses on “typical” developmental milestones. But many parents of special needs kids express, as Becker does in A Good and Perfect Gift, that it can be helpful in a way to see in what ways a child is attaining milestones at around the right time (could be verbal if physical is a problem, or vice versa). Touchpoints recognizes not only development forward, but also regression at certain times. While “touchpoints” are universal, “driven by predictable sequences of early brain development,” they obviously don’t always apply to all. Part 2 discusses various challenges to development in alphabetical order, including allergies and asthma, developmental delays hypersensitivity, and speech, language, and hearing problems. So some special needs parents may learn a bit, but they will also benefit from discussion of other issues like divorce, television, etc. In the end, a book like this reminds us that each child is an individual and not just a symptom, disorder, or disease.

Hilary Levey Friedman is the Book Review Editor at Brain, Child and the author of Playing to Win: Raising Children in a Competitive Culture


Top Ten Nonfiction Books for Thinking Mothers

Top Ten Nonfiction Books for Thinking Mothers

By Hilary Levey Friedman

details-of-huckfin-npr-650Any list like this is inherently idiosyncratic—unless you go by sales numbers it’s hard to find the perfect metric by which to create a Top Ten. You could go by number of times a book is cited by other authors (that’s the academic sociologist in me), or its reviews, but those nunbers can’t capture the way a parenting book can give you an a-ha! moment or make you reevaluate a parental decision.

This list for Brain, Child’s store is thematic, covering issues that arise at different stages of the parenting game, mindful that much of the “Parenting” section of the bookstore is dominated by infancy and toddlerhood. We can’t forget about our school-age kids and those teenagers! You will find below a mix of books—recent, classic, bestseller, academic, oft-recommended—and my hope is that at least one of them will make you think more deeply about this crazy thing we do call parenting.

Expecting Better: Why the Conventional Pregnancy Wisdom is Wrong—and What You Really Need to Know by Emily Oster

Reviewed in the Fall 2013 issue of Brain, Child this book caused a firestorm by suggesting drinking during pregnancy can be ok (in moderation!), but don’t let the controversy dissuade you. This book covers many of the pregnancy “classics” (like What to Expect) by evaluating their claims while giving soon-to-be moms the tools to make the decisions that work best for them. Guidelines are suggested, but aren’t set in stone. Oster reviews the relevant medical literature and evaluates the research that went into the studies, starting with fertility and ending in the post-natal rooms. You don’t have to understand statistics, but an interest in numbers will help as you read the straightforward prose. Expecting Better is a useful tool for women of child-bearing age and it certainly is a pregnancy book geared for thinking mothers-to-be that reflects the trend toward evidence-based medicine and evidence-based parenting.

Huck’s Raft: A History of American Childhood by Steven Mintz

Historian Steven Mintz’s comprehensive tour through childhood in the US—starting with the Puritans and ending with twenty-first century techno-savvy kids—may appear overwhelming (no, the hardcover is not actually a doorstop, though it could double as one). But it’s a very thoughtful, straightforward, and obviously thorough take on how childhood as a time of innocence has developed over time. It should reassure parents that for the past three centuries each generation has believed that the succeeding one is more violent and sexual and less respectful and knowledgeable, and that concerns about technology persist whatever type of media develops, yet somehow we continue to make progress. Each chapter can be read and digested in its own time while still preserving the overall message that a carefree childhood has always been a myth in America, though it is still worth striving for today.

Diaper-Free Before 3: The Healthier Way to Toilet Train and Help Your Child Out of Diapers Sooner by Jill Lekovic

We spend a lot of time worrying about the inputs for our kids, but what about the outputs? Lekovic is a pediatrician and mom of three who offers sensible advice about potty training while also educating the reader about how this practice has changed over time. I actually enjoyed Chapter 2, “Life Before Disposable Diapers,” more than the eminently reasonable and effective advice she offers. Lekovic reminds us that disposable diapers that take away the feeling of wetness may be incredibly convenient in our busy lives, but kids are quite capable of doing it sooner (and she proves this by talking about how this works in other countries around the world). Her no pressure method, which can be thought of as exposure, also takes into account children with special needs. A rare book that I encourage every parent I know to consider.

The Portable Pediatrician: A Practicing Pediatrician’s Guide to Your Child’s Growth, Development, Health, and Behavior from Birth to Age Five by Laura Walther Nathanson

We all need that general reference guide to consult when we are worried about a certain behavior or icky rash. This book by mother and pediatrician (who has been through hundreds of thousands of office visits) more than fits the bill. Nathanson writes compassionately but tells us what we need to know. Originally published in 1994 and revised in 2002, the book stands the test of time as an informed, common-sense guide to parenting. It’s notable that the books starts in weeks, moves on to months, and then years and each section gets longer as you as a parent have more time to actually sit down and read as time progresses. As with most parenting books like this, it’s best to read ahead before Junior arrives (I did up to 6 weeks) which allows you to know what to expect and catch up later!

The Blessing of a Skinned Knee: Using Jewish Teachings to Raise Self-Reliant Children by Wendy Mogel

Don’t worry if you aren’t Jewish—you don’t have to be to appreciate the wisdom and beauty of Mogel’s book, a perennial favorite among thoughtful parents since its release in 2001. Mogel was a practicing psychologist who left her practice after “finding” religion, along with finding a way to translate lessons of spirituality to today’s busy families. You won’t find statistics or lots of research in this book, but you will find a meditative take on what ails so many children and parents today. The three main principles she talks about are moderation, celebration, and sanctification and she uses nine blessings as chapters to communicate this message to all parents encouraging parents to let their children fail, work, and just be ordinary. More recently Mogel released a follow-up focused on teens entitled, The Blessing of B Minus: Using Jewish Teachings to Raise Resilient Teenagers.

NurtureShock: New Thinking About Children by Po Bronson and Ashley Merryman

NurtureShock is a great example of the type of parenting book that resonates today. Bronson and Merryman are journalists (note that this is one of only two books on this list not written by a PhD or an MD) and they take scientific research and package it in a counter-intuitive way that makes people stop and think. They also take an extreme position to attract attention and then add nuance later; for example, the introduction starts with the statemnt, “Why our instincts about children can be so off the mark.” Bronson and Merryman’s writings on praise (why it’s bad for kids) in particular have made a big impression. It is unclear if NurtureShock will remain a popular parenting book 10-20 years from now, but for moms and dads today who want to inform their parenting with research this is a mainstay in home libraries.

The Lore and Language of Schoolchildren by Peter and Iona Opie

This is an oldie, but a goodie—and not one you will find on a lot of top parenting lists, but it is definitely worth a read. Originally published in 1959 it is based on the research of a husband-and-wife team in the UK. The Opies, professors of literature and essentially folklorists, did something path-breaking: they observed children and took their play seriously. What’s interesting for parents today is captured in Iona’s preface to the 1968 edition, “Yet all in all children continue to regulate their own society, and defend themselves against the constant threat of boredom, with much the same code of law and style of humor as they did thirty—or indeed, a hundred—years ago.” The Lore and Language of Schoolchildren reminds us that children are their own beings who create and navigate complicated social worlds, and the way they do so is worthy of respect and understanding.

The Pecking Order: A Bold New Look at How Family and Society Determine Who We Become by Dalton Conley

During my second pregnancy I searched for books about raising siblings and couldn’t find any great how-to books. In the end, I returned to Conley’s book on siblings. Conley is a sociologist and he talks a lot about the research, but livens it up with personal examples. His discussion of twin studies is the most research heavy and while they are important it’s the color provided by interviews with nearly 200 siblings that gives a more nuanced picture. Among the more interesting discussions in The Pecking Order are that the number of children in a family matters much more than birth order and that there is more inequality within families than across them. Status hierarchies form in every family, often around birth order but also around sex and natural talents, so thinking about the way that impacts children and less about birth order is helpful while trying to raise siblings effectively.

How To Talk So Kids Will Listen & Listen So Kids Will Talk by Adele Faber & Elaine Mazlish

Many parents refer to this 30+-year-old book as “The Parenting Bible.” It is one of five books written by the team of Faber and Mazlish and you likely have heard of at least one of their other books (their first was Liberated Parents/Liberated Children and their other immensely popular book is Siblings Without Rivalry along with How to Talk So Teens Will Listen & Listen So Teens Will Talk). Faber and Mazlish are revered by parents for helping adults understand that they need to recognize their children’s emotions and feelings. This is the core theme of all of their work and they use a technique to personalize this in their work that involves the reader completing exercises. They also include cartoons and a single-voice conversational style that can be confusing at times, though they are clearly effective overall. Note that the 30th anniversary edition includes an afterword by Adele Faber’s daughter who has joined the family business.

The Price of Privilege: How Parental Pressure and Material Advantage Are Creating a Generation of Disconnected and Unhappy Kids by Madeline Levine

Levine’s influential book about the challenges facing middle- and upper-middle class teens today is comprehensive in that it discusses relevant research (namely Suniya Luthar’s work on difficulties facing advantaged teenagers), personal experiences (as a mom and as a therapist in an affluent San Francisco suburb), and offers advice to parents on how to help their children through these difficult and formative years. Levine has gone on to write more on how to help teenagers become well-adjusted adults (see the review of Teach Your Children Well in the Summer 2013 issue of Brain, Child), but in a nutshell the best advice to come from The Price of Privilege is that time and not money or things matters the most—even if your teen doesn’t always want to talk. Don’t pressure them, just be there, and hopefully in time the alarming statistics about increases in substance abuse, self-injury, and suicide will decrease among more affluent children.