The Real Story of the last 10 years: Part I: I Prayed for a Dog

I prayed for a dog. That’s actually what happened over the past ten years. I prayed for a dog.

My last blog post told about our family’s last ten years, with Lauren’s health and healing at the center. It was a story that needed to be told, but it was a very limited perspective of the experiences of Lauren and our family over the past ten years.

Today I looked at our old dog, Trooper, and realized that he provided another quite valid perspective to the story. Because I began praying for that dog about the same time my prayers for Lauren became quite frantic. And then I thought about the many good and sweet things that have happened over the past ten years and what a shame that “Lauren’s story” couldn’t include those aspects. But it can. And it shall. Yes, it needs to be a whole new blog post, or maybe multiple posts, so our readers don’t unplug and throw their computers in fear of a long-term commitment each time a new post comes in from our site. So here’s another of many valid perspectives on “the rest of the story” of our family’s last 10 years with Lauren.

I prayed for a dog. And we hiked. The two actually go together.

Catching up: 10 Years since Dancing in Cornmeal

Warning: This is the long promised, as well as just SUPER LONG, blog post that serves as “the rest of the story” to Dancing in Cornmeal: Life with Autism. I began writing this post the week of Lauren’s 20th birthday, and intended the title to be 10 Years of Catching Up—on Lauren’s 20th Birthday! But long stories take time to tell. So instead, here we are 10 years after the release of the book (approximately—it was spring). The story stopped when Lauren was 10 years old, so . . . same thing really.

One of the purposes of creating this blog was to share our success and to network concerning diet, specifically SCD and Paleo, so heads up that there is quite a bit of medical history and diet talk in this post. I tried to keep it as streamlined as possible, but . . . Lauren’s story is what it is, and streamlined is not a descriptor I’ve ever used for it!

Part I: Intro

In the 10 years since writing Dancing in Cornmeal: Life with Autism, our family has been through a lot with Lauren. Dancing in Cornmeal helped to define “a lot,” as will this blog post.

Weird Things We Did This Week

I have a dear long distance friend who has a blog on which she posts “Best Things of the Week” just about every week, usually with wonderfully descriptive photos of each “best thing.” I enjoy keeping up with her life this way. And now she’s inspired me. I’ve decided that, as they occur, I am going to post “Weird Things We Did This Week.” (I foresee posting under this heading weekly, but maybe we’re not as overwhelmed with weirdness as I perceive. We’ll see.) Of course, all weirdness listed will be things we did to accommodate autism. We keep hoping people realize we’re forced to do “weird things” because of the autism. I think long-term friends often forget we have an “unusual circumstance” and have grown fond of us “just being weird,” rather than “having to be a little weird because of the autism.” Now, I’m not saying I’m not a fan of weird. Intellectually, I am highly appreciative of any person, thing, natural phenomenon, whatever, that steps outside of a predictable box. But . . . hanging out in a nice, quiet, unnoticeable, easy-to-maintain box would be nice for a change, too.

So, for the first installment “Weird Things We Did This Week.”

Photos of Lauren at 20

So that our readers have a visual of whom they’re reading about (and maybe for whom they’re praying?. . . I can only hope), I looked through all the snapshots I took of Lauren over the past year. I’d hoped to post a good one that would represent her at 20 years old (or close enough). Well, I have not a single flattering picture of an anxiety-free Lauren making eye contact!

But today it was almost 70 degrees! (Gotta love mid-winter in Georgia.) So Craig, Lauren and I took a walk in our neighborhood. I brought the camera with plans to snap away the whole walk, knowing success is statistically proportionate to number of attempts. And that Lauren has been in a fabulous mood all day. (Okay, this may be an even better indicator of success in Lauren’s case!) So here we are. I didn’t get just one keeper, I got quite a few. Here are the many (happy) faces of Lauren at 20.

Peace on Earth: Lauren at 20

Craig and I dread the holidays for many more reasons than the average Scrooge. Transition is tough on OCD, prone-to-defcon-levels-of-anxiety Lauren. Figuring out how to introduce new music, activities and decorations to our lives without disturbing Lauren’s peace has required some Major General level strategic planning. Thankfully, after many years of exposure to the bling that is the Christmas season, Lauren (generally a fan of bling) is now a fan of most things Christmas. For about 6 or 8 years now, Lauren’s been happy to allow the Christmas tree and stockings to remain once we put them up. About 3 years ago, she began to appreciate that wrapped gifts are omens of good things to come—even worth the stress of idiot grown-ups telling her “Break the rule! Rip the paper!!!” (Yes, we are always sorry come January when we are trying to tape back together entire favorite books of torn out pages, while stupidly reminding her, “If you rip it, it’s broken and you can’t read it anymore.”)

Craig's Intro

Today, Craig and I set up this blog so that it isn’t just mine. It’s now both of ours. It’s even a family blog. Lauren doesn’t type yet, but maybe our older daughter, Bryn, will even contribute someday! The change was made because we hope to share what’s worked for Lauren and for our family. That includes the new way we eat, and a bunch of fabulous recipes. But Craig is chief cook (and fabulous chef in the making) in this house, so it seemed wrong for him to have to pass his info to the blog through me. Particularly as his perspective is different from mine, and sometimes his perspective and wording is priceless. Who am I to act as a sieve between him and the world? So, as better intro to “who Craig is,” here is his first post. Enjoy!
Nannette

I’ve often heard that life is an adventure, but for me I think it’s more of a mission. Not just any mission, but a critical mission. I consider life’s mission much like Apollo 13 and the famous phrase “Failure is not an option.” I have two wonderful daughters, Bryn and Lauren. When they were little, our family appeared to be ready for life’s adventure and the typical things two girls move through from toddlerhood through becoming adult young women. Much like the engineers, controllers and astronauts of the Apollo 13 spacecraft, we anticipated a typical mission like many predecessors had successfully manned before us. Usual safety and technological protocols were in place, so using the best equipment, and with careful watch, the mission should go as planned. For Apollo 13, that plan included a simple landing of man on the moon for the third time. For my wife Nannette and I, the plan for our daughters included high school, probably college, marriage, grandkids and other things most typical parents experience.

Two days into the Apollo 13 mission, an oxygen tank exploded changing the best laid plans from what was expected, landing on the moon, into one of the greatest rescue missions the world has experienced. Although the famous phrase, “Failure is not an option” is more movie lore than reality, the engineers and mission controllers believed it and knew the lives of the men on that craft were in their hands.

Twenty months into the life of Lauren, she was diagnosed with autism, changing the expectations of parents with two typical daughters into one of the greatest rescue missions most people will never see. Failure is not an option is what Nannette, Bryn and I believe. We know that Lauren’s life being lived to her fullest and happiest is in our hands. My hope is that, like the movie and mission, when our credits finally role, our happy ending is worthy of an inspirational James Horner theme song.

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

Preface

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.