Children's Voice May/June 2007

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Exceptional Children: Navigating Learning Disabilities and Special Education

So Many Books, So Little Time

By Ellen Notbohm

"When Jamie was first diagnosed, I read everything I could get my hands on."

I hear this phrase almost as often as I hear "Good morning." It invariably comes from loving, devoted parents determined to do whatever is necessary to help their child with the disability or disorder they are facing. These parents are irresistible forces planting their feet in front of the immovable object. They bravely confront the slenderness of the passage between the rock and the hard place. No matter how big and bad the wolf, he is not going to blow their house down.

But after reading everything they can get their hands on, they often feel far from enlightened or educated. They are exhausted, confused, frustrated, bewildered, and paralyzed by information overload.

I've been there myself. When my son was first identified with autism, I too read everything I could get my hands on. There was much less to read back then, and all of what I read was either very clinical or very discouraging. I simply did not buy that my son was headed for residential care and a life of assembling widgets in a thingamabob factory, never to marry or have friends.

As a result, I stopped reading autism books altogether--for a full five years. By then I wanted to write my own book and needed to know what was out there. I began reading again, and what I found was that in those five years, the tide had come in. Many more understandable and encouraging books with practical, hands-on advice were being written by doctors, therapists, parents, and more. Today, the panoply of books can overwhelm. Amazon.com's learning disabilities category contains more than 17,000 listings.

So now, many parents face a problem opposite from what I faced 10 years ago--too much information--and yet end up in the same place, not being able to find the right information. With our finite dollars and even more finite time, we want to choose books wisely. It can be a tricky balancing process. Cost is always a factor, as is available reading time.

Your specific needs will ebb and flow over the course of your child's development. Do you want a book to further your own knowledge, or to give to others--to, in effect, speak for you? Are you looking for hard information or divine inspiration? So many factors will come and go over time, and they may be different every time you choose a book. But there are guidelines you can follow.

How much and what type of information do you need at the moment? Do you need an encyclopedic overview of all issues within your child's disability? If your child has just been diagnosed, you might choose a comprehensive book that provides a little bit about everything. If you are past the initial diagnosis, you may want to narrow your focus to deal with a specific issue.

One size does not fit all. Any book that doesn't take into account that each child, parent, and family is unique and individual will ultimately fail. Programs that prescribe parameters that are too narrow, offer too little choice or flexibility within the formula for success, or aren't adaptable to the multiple settings in which we live our lives are doomed to be short-lived. Ditto for anything that claims to be the only solution you will ever need.

Cast a cautious eye on the book that espouses something works for everyone. It doesn't, and even if it did, that doesn't mean it's right for your family. A certain diet or program may in fact have great benefit for your child, but if it's going to make you crazy to administer it, bankrupt the family budget, or throw the rest of the family into neglect or chaos, then it isn't the right approach. Therefore...

Test-drive the book. Pre-educate yourself a little bit before buying such a book; do some Internet research on the basics of that special diet or therapy. The intervention may be successful, but it may require large amounts of time, patience, and tenacity. If your initial reaction to the approach is a flicker of "Hey, that could work," proceed past Go. If, however, your initial reaction is exhaustion at the thought of administering such a program, move on to something better suited to your lifestyle and temperament.

Whenever possible, borrow the book from a library, school, or social service agency to see if you truly will use or enjoy it. If you can't borrow the book, apply this test in the bookstore: Open the book in three random places. If you don't see anything that strikes a chord with you in three random spots, chances are the book is not for you.

Make use of Internet options for exploring a book. For instance, if you go to the Amazon.com listing for my book, 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, you can read 15 reviews, then use the "Search Inside" feature to read an excerpt, review the table of contents, flip through the index, and read the back cover. You'll have a good grasp of the format, tone, and content of the book without laying down a dime.

Don't be swayed by celebrity. Celebrities are only flesh-and-blood parents like the rest of us, with one major difference--they usually have more money. More money means more freedom to try many different approaches, hire outside help, and travel to distant hospitals and programs. Realistically, most of us must take a more limited, considered approach. Many of us will also give up much, including glamorous or not-so-glamorous career opportunities, to devote more time and energy to the needs of our special-needs child. Will you be discouraged or misled if a celebrity implies you can have it all--every increment of the career you want plus a successful child?

What's your reading M.O.? Do you want to explore alternative methodologies, or are you more comfortable going down a tested path already well trod by others? What type of author draws you in--the parent writing from personal experience, the professional who has worked with thousands of kids, or the person with a disability writing with the personal perspective? All are valuable, but you may prefer one voice over others.

Fads or fundamentals? Is the book about the latest craze in addressing the disorder, or does it address one of its hallmark challenges? Keeping abreast of emerging thought is important, but there are only so many hours in the day, which leads to...

How much time do you have to read? If it's an hour a week, select a shorter book that gives you broad information on a topic, so you'll know what to hone in on next. If you have more time, go for something with more depth.

Enlist others. Are you lucky enough to have a family member or friend who asks, "What can I do to help?" Give these good people a book, or let them choose one. He or she can read it and provide you with a synopsis. This is such a win-win--a way for family to help you, while they becoming further educated themselves. It can't help but be a bridge to more meaningful relationships all the way around.

Start a book club. A book club can be a powerful tool for getting a broad sweep of information from multiple books when time is precious. In the usual book club format, everyone reads the same book, then discusses it at the next meeting. If that format appeals to you, great. But if it sounds like only more time pressure, create an alternative that better suits your lifestyle. Your reading circle, comprising you and a few other parents or teachers of kids with similar needs, can be a more efficient variation on that popular format.

Instead of everyone reading the same book, each person can read a different book and share the information and personal impressions with the rest of the group. Sharing of information can be through conventional in-person meetings, or virtual, through group e-mails, round-robin e-mails, or postings on a website.

Members may decide to loan each other books based on information shared during meetings. They may also decide to pay annual or semiannual "dues" (say $20) into a kitty to purchase agreed-upon books for a group library. Members can agree to replenish the kitty as needed.

Beginning a book does not obligate you to finish it. If you began eating a meal that tasted bad, bored you, or disagreed with you, would you force yourself to finish it? The same goes for books. Our reading time is finite, and the world is brimming with books begging for our attention. If a book doesn't capture your interest in the first few chapters, move on without a backward glance.

And finally...

Beware burnout. You can't read about your child's disability all the time, especially when you are living with it all the time. Sometimes you have to "be" somewhere else, even if only figuratively. Sometimes you need to read just for fun. Whether it's a humorous novel, romance, mystery, or cookbook, make some room in the reading schedule for you.

Books are so important to the learning process, in a manner that no television program will ever be able to touch: the exquisitely personal pictures you create in your head as you relate what you are reading to your own life; the portability of books--being able to take advantage of reading moments whenever they present themselves at the laundry, a park bench, an airplane, or the bathroom; the permanence and reliability of reading--the same words will be there for you whenever you decide you need to revisit them, be it next week, next year, or next child.

My own writing career was ignited by the fact that my child didn't relate to books--any books. The panic it set off in me fueled a search for answers, which ultimately were found, yes, in a book. Somewhere between his near-complete moratorium on books and my near-complete burial under an avalanche of current books lies the happy, healthy medium.

Ellen Notbohm Ellen Notbohm is author of Ten Things Every Child with Autism Wishes You Knew, a ForeWord 2005 Book of the Year Honorable Mention winner, and Ten Things Your Student With Autism Wishes You Knew, a 2006 iParenting Media Award winner. She is also coauthor of the award-winning 1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders, and a regular columnist for Autism Asperger's Digest and Children's Voice.

© 2006 Ellen Notbohm. For book excerpts, to learn more, or to contact Ellen Notbohm, visit www.ellennotbohm.com.


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