Where a husband and wife blog to: continue the story told in a book called Dancing in Cornmeal: Life with Autism; enhance the conversation about autism; relieve a writer's need to write; inspire (when the stuff here is really good); network; and share - especially recipes that follow the SCD and Paleo diets. See "Welcome" under TOPICS for a better description, then just keep reading along...

Wednesday, June 29, 2011

Preface (& Update) to Dancing in Cornmeal: Life with Autism ©2002

“It was You that created me. For the wonder of myself, for the wonder of Your works, I thank You.”
Psalms 139:13-14


I’m going to try to write this preface before writing the book, just to see how accurate I end up being about the finished product. This is what I foresee:

1. A book that tells my life story as it pertains to autism. (Considering that autism affects just about every moment and every decision in my life, I foresee covering a lot of ground.)
2. A book that provides the uninformed some factual information about autism, and perhaps provides the informed a new angle to some of these facts.
3. A book that a parent can take into the bathroom or the bedroom with them, quickly read a chapter at a sitting and close the book thinking, “That’s exactly what I’m going through—someone else has been there and understands.”
4. A book that a friend or relative can probably read in one or two sittings, close and think, “So that’s what they’re going through. Now I feel like I may be able to help.”
5. A little bit of inspiration.
6. A little bit more humor.

Let’s see how close I come.

This book began as a bunch of essays I had written for the newsletter of our local Autism Society of America chapter. I was editor of the newsletter for about one year and took advantage of the arrangement as essayist. My pieces must have been pretty well received, as I heard nothing cruel and received requests to republish a few in other local newsletters. I remember the first day I was paid for my work. That morning, I had filled out a questionnaire. It was probably for a brand new doctor or therapist and asked a bunch of questions that didn’t apply to my child’s situation, such as “Name child goes by” (at the time, she didn’t go, come, or look at you in response to any name) or “First Word.” I felt I had to qualify my answer of “ma ma” because she hadn’t said it or much else in a few years.

I came to the “Mother’s Occupation” space. “Homemaker, Housekeeper, Mother, At-home Teacher, Unlicensed Therapist” all applied, but my passion was for writing. I sat in my friend’s kitchen that afternoon and told her, “I wanted so much to put WRITER, but I’m really not a writer until I’ve been paid for my work.” She left the room for a minute and came back with something in her hand.

“Remember that article you gave me to read the other day?” she asked. “Yeah,” I answered. “I loved it,” she said, then opened her hand to reveal a quarter and held it out to me. “Thanks.”

I took the quarter, put it in my pocket and I’ve been filling in that blank with WRITER ever since.

I hope you think what’s contained in these pages is worth more than a quarter, particularly if you’re the one who shelled out the list price for it. I hope even more that you have a friend in your life as smart and caring as my friend.

This book is not a story about a child who was cured of autism. Lauren has made gains over the years, but she is far from living a life resembling that of an ordinary child. Despite my having no great discovery to share, I feel led to write this book because of what I do have to share—years of pursuing autism education and discovering what works best for Lauren, and for our whole family. If you’re involved with a child with autism, perhaps reading this book early on in the diagnosis will give you a jump on some lessons that took our family a few years to learn.

Before this book, I had never written a complete account of our family’s introduction to the world of autism. These chapters had to be written from scratch, which made me thankful for my journals, though I wish I had written in them more frequently. (Most journal entries, which I addressed directly to Lauren or Bryn, depending on whose journal it was, began something like this: “I’m sorry I haven’t written here in so long, but my excuse is a good one. I’ve spent every waking hour being the best mom I know how to you and your sister.” I don’t know if I wrote that so that my daughters would someday forgive me for the limited accounts, or so that I would remember to forgive myself.)

The second section contains many stories from my life with autism, but its purpose is to convey some of the most important lessons I’ve learned since my adventures with autism began. I imagine future years will continue to teach me and change me, but I’m hopeful the new lessons will detail and enhance, never contradict, the lessons I share here.

In the third section of the book, there is something extra. These are what I call my “little ditties”—thoughts that were in my head that wouldn’t let me sleep until I let them out. These were the essays that started my writing career and the reason that I wanted to reach a wider audience. I don’t think it’s that important that you know me or my children or our story. But I do think it’s important that I share those thoughts that seemed desperate for life. Perhaps they were meant for someone other than me.

Before continuing, I want to address my use of pronouns throughout the book. When it’s cumbersome to speak generically of a child with autism as “he or she,” I choose the pronoun “she.” There are actually more males with autism than females (the ratio is 3:1) but most of my experience and writing is about a girl with autism, so I stick with the feminine pronouns for consistency. To compensate for this choice, I use masculine pronouns when I’m speaking nonspecifically about an individual who doesn’t have autism.

Thanks for giving the words before you some of your time. I know how precious each moment is in a life challenged by autism in whatever capacity. I hope your future moments are blessed in some way, big or small, for the moments spent here.

Preface Update 2011

Using a blog format is much different from writing for hard copy print. The decisions I had to make in transferring book format to blog format included:

• How to post chapters so that the material is easiest to access and read in the order it was intended—particularly as some information builds on itself, chapter by chapter. I hope it works for you that I posted the book in 5 sections and in backward order, so that if you read it from most current post to oldest post, you may easily scroll down the portions of the book offered here in original order!
• What to do with footnotes! They simply did not transfer from the original document. (And they would have been very awkward if they had!) So, there are no footnotes. Many were for clarification about special ed and medical terminology, as well as named professionals and famous people with autism—
their fields of specialty and reasons for notoriety. For those, I’ve decided that it is accepted and expected practice that you may google the clarification you need. For those providing sidebar information on the footnoted topic, I have tried to (not distractingly) add the information in the body of the text, sometimes parenthetically.

Of course, in the 9 years since I published Dancing in Cornmeal: Life with Autism, our family has experienced thousands of new problems, revelations, choices and some changes of people in our lives. We even moved to a new house just before publication of the book. Oh, and puberty and autism . . . they simply don’t mix. The abyss our family was in from late 2001 to early 2006 was deep and dark. On top of puberty, Lauren’s GI problems, plus subsequent pain and behavior challenges, became extreme before becoming resolved. That experience contributed greatly to the people each of us are today, and will likely contribute greatly to any future posts I place here.

As I skimmed the chapters of Dancing in Cornmeal before adding each to the blog, I realized how many updates I could make to virtually every chapter. I hope to do that over the coming months. Some hopes for Lauren (mentioned in the book) have been realized since 2002. Some avenues of healing we’ve chosen to pursue (that I didn’t even know about when I wrote the book) have proven to be the most significant to Lauren’s improvement and our ability to all live together with hope for the future.

Lauren is 19 years old as I write this in 2011, and she is still greatly enjoyed and cherished in our little family. She is a much happier person than the sometimes hurting little girl mentioned in some of the stories here, and she is much better able to communicate her needs, wants and feelings with us all. Perhaps someday I will write (or compile from this blog) a follow-up to Dancing in Cornmeal: Life with Autism. Until then, Dancing in Cornmeal is still available through bookstore websites and I can attest that, even 9 years later, those 6 things I foresaw for the book even before I wrote it . . . it is all that. I laugh, cry and learn every time I reread it.

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