book_trail_smallThe Autism Trail Guide: Postcards from the Road Less Traveled

by Ellen Notbohm
©2007 Future Horizons, Inc. (800) 489-0727
ISBN 978-1932565508

Preface

“Start at the beginning,” the Mad Hatter tells Alice in Wonderland. “And when you get to the end—stop.”

I never cared much for Alice in Wonderland, and now I wonder if it’s because a purely linear story with a clear beginning, middle and end is just too much fantasy for me! If there is one thing of which the journey through autism has convinced me, it is that life and all our relationships within it is composed of circles, not straight lines, and the richness and the essence of being alive derives from those circles and their infinite number of places to begin.

I began writing my “Postcards from the Road Less Traveled” column in 2004, and the point in time I chose to begin was a moment during my son Bryce’s first grade year. The school, Capitol Hill Elementary, had a wonderful program called All-Stars. Each month, several students from each class would be featured in a school-wide assembly. The teachers would introduce each student, note a few things that made each individual special, and then each student would answer a question. The question was the same for all students throughout the year. Over the course of the year, every student would be an All-Star.

Bryce was a first-grader in 1999. Buzz about the new millennium, Y2K, was pervasive. The question of the year for the All-Stars was: what would you like to be in the new millennium? On a crisp late winter day, I watched a string of charming first graders step up to the stage to answer the question. A soccer star! is the most popularresponse. One after another, they want to be pop singers, race car drivers, cartoon artists, millionaires, veterinarians, and firefighters. Bryce, in his first-ever encounter with a microphone, answered simply: “I think I’d just like to be a grown-up.”

Applause broke out and the principal announced: “The world would be a better place if more people aspired to what Bryce aspires to.” Scene-skip across four years and suddenly Bryce is in fifth grade,  and this will be his last All-Star assembly. For every year previous, my husband, my mother and I have all attended All-Stars together, but this year, travel and work schedules have collided and I will be attending alone.

The question for the students this year is: describe yourself as a dictionary entry with at least three definitions. Most of the kids start with: I’m a noun. A couple are verbs. Then the definitions begin: 1. a soccer player (of course); 2. good at math, 3. love to tease my sister. Or: 1. A Nintendo champ; 2. great at drawing; 3. eat ice cream every day. One girl makes everyone sit up straight by saying, I like to help others.

Bryce steps to the microphone, and with complete aplomb, reads from his card:

“Bryce. Noun. 1. a student who always tries my best. 2. a writer in my spare time, and 3. –

“Someone who loves my parents.”

An audible intake of breath sweeps the auditorium and everyone who knows me swivels around to see if I am going to burst into tears.

I would, except that all the muscles in my face are suddenly paralyzed. Bryce is, as usual, unaware of the fact that he has done something extraordinary; he throws his serene smile my way, with a thumbs-up and a look of “there, I did it.” He found me in the crowd a few minutes later when the assembly broke up, handed me his All-Star award, which carried not only his definition of himself but a photo taken in front of a towering camellia bush on the school grounds. I can’t help  thinking, admiring the photo, that the camellia isn’t the only thing in the photo that is in full bloom.

I did make it to the car that day before letting loose and sobbing into the cell phone to my husband, you picked the wrong one to miss!

I thought back over all the years I had spent yearning for and wondering if my very language-challenged child would ever say “I love you, Mommy.” I never prompted him to do so because I wanted it to come from within him, or not at all. I never, ever could have dreamed that when that time came, it would be in front of a microphone, to the whole world.

I believe my wish to hear those words is nearly universal among autism moms (and dads too). I won’t say “be careful what you wish for or you might get it.” I will say only to be aware that one fine day your most fervent wish may just walk right up and bite you on the nose when you least expect it.

It’s what makes getting out of bed every morning so worth it.

It took me some years to realize that what Bryce wrote in his dictionary definition of himself was also a perfect description of me. This poses a question that I can’t answer for you: chicken or egg? A great reflective light is at work here, but the source of the light (Is he reflecting me or am I reflecting him?) is unclear. I love that. This circular, reflective energy is what leap-frogs us down our road less traveled.

Being chosen for the privilege of parenting Bryce and Connor was surely the highest honor I’ll receive in this lifetime, but not far behind was the privilege of being asked to write my column

“Postcards from the Road Less Traveled” for Autism Asperger’s Digest. I think of myself as “just a mom” like so many others, but editor Veronica Zysk thought there was more. “Ellen is,” Veronica told Digest readers, “a real-world parent of a child with autism, on a real world journey, open eyes, open heart, willing to take a stand when need be and knowing when to walk away and fight another day. I have no doubt that you will be enriched beyond measure by the thoughts, feelings and advice of this practical lady, a sparkling woman of substance.” Well, that described a pretty extravagant mission, one in which I didn’t dare let her down.

I didn’t know it then, but I began writing this book on the same day I began writing the “Postcards” column. Through the years, I sculpted and Veronica finessed my experiences into words that reached and touched many Digest readers, and they wrote to tell me so. I

began to feel that these columns, wrought so lovingly and sometimes so painfully, deserved to be shared with a wider audience. This book allows that to happen.

I think of the essays in this book as trips to the toolshed wherein we store all the virtual hardware needed for this creative construction project that is our child with autism. As autism is a shifty foe, so shift our needs, seemingly with the wind, from day to day and even from hour to hour. Sometimes we need a machete to hack through the  education bureaucracy. Sometimes we need insect repellant to deal with the inevitable unkindness of strangers. Sometimes we need a

cultivator to sow and encourage the growth we know will come if we are patient and steadfast in our work. And sometimes we need a soldering iron to weld our broken hearts back together. All of this you will find in these pages as we tackle a spectrum of challenges from nuts-and-bolts everyday issues such as math homework, video games, and tricky behavior to the larger life issues that have no simple answers. When to take risks and when to play it safe. When to step up and when to back off. How to hang on and when to let go.

Some of the thoughts and essays in this anthology do not qualify as autism-specific. I’ve included them deliberately because it’s very important to me that you know that life with a child with autism is not all autism, all the time. Your child is different, yes, but he is also like typical children in many ways. I love Dr. Jed Baker’s characterization of people with autism, “the same as everyone else, only more so.” You cannot raise a child with autism without experiencing some of the universalities of child rearing. Parents are on a developmental journey as well, so I’ve veered off the “child with autism” focus a few times to take a look at some fits and foibles in my own growth. I hope they bring you a smile because, according to my one of my gurus, Mark Twain, “The human race has one really effective weapon, and that is laughter.” Being able to laugh at ourselves and with ourselves is, frankly, essential to our journey.

In the course of our journey, my family and I have been blessed with more heroes than anyone should ever be entitled to, and you will meet many of them in this book. But two rise above, two whose influence so eloquently underwrote my ability to be all that I had to be in the face of my children’s challenges. One was the pediatrician who was with me on the day I became a mother. The other was the teacher who helped me step over the threshold into adulthood, a decade before I ever dreamed of becoming a mother. Because their insight, guidance and belief in me shaped my entire adult experience, their stories, “You Know More than You Think You Know” and “The Song that Never Ends,” stand apart. I very much hope you will draw on the energy of their wisdom as I still do every day of my life.

Let’s get started.