Top Ten Books for Parenting Children With Disabilities
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