…was the Word, and the Word was with God, and the Word was God. John1:1, NIV
…God created the heavens and the earth. Genesis 1:1, NIV
In the beginning, I decided to blog because I wanted to keep a journal that I could easily share with everyone about my daughter’s journey through Brain Balance, a program that will enable her to escape the neuro-behavioral disorders that have been a part of her life since birth. More on that later.
I’ve been tossing around the idea of writing a blog for awhile now, simply because I love to write. I love that amazing, fluid, inexplicable thing we call language. I don’t remember learning to read- my grandmother told me that I was reading at 4, and I remember sitting there in my first grade classroom feeling bored and impatient as my classmates stumbled through Dick, Jane, Sally and Spot’s “adventures”. I remember tapping out stories on my my mother’s big old Remington typewriter, then my joy at receiving my own portable typewriter when was in high school. I also remember the days of correction tape, carbon copies, and endless retyping on onion skin paper (which smudged easily) to achieve a presentable copy to turn in to a college professor. (Okay, I know I’m dating myself here, but I really don’t care. I’m 53 and perfectly content with that.) I submitted poetry for publication in those anthologies that you pay to receive copies of- I got published in two of them! Imagine that! I also got published in a literary magazine once- I got paid with 2 copies of the magazine. Life being what it is, my literary career got relegated to the back-burner for awhile.
That being said, I have to say that I find the computer to be a wonderful tool that makes the craft of writing so much easier! I truly appreciate the power of word-processing, which makes getting the ideas out a cinch. Okay, that doesn’t say exactly what I mean, so I can zip up to my online thesaurus and find…effortless, a breeze, no sweat, a snap, and dozens more. (For sentimental reasons I still have my well-worn Roget’s Thesaurus from high school!) If I type a word and suddenly I’m not sure if I really know what it means- type it into dictionary.com and all doubt is removed.
After nearly 33 years of marriage, and 28 of parenting, I am finally at this point: Just maybe I have enough experience in life to have something of value to write about. And publishing on a blog is okay. For several years I’ve struggled to find room in my life to write, and my ultimate goal has always been the book. To publish and have the book in hand. But if my ultimate goal is sharing something, sharing what I’ve learned, communicating what may be helpful to someone else, then does the medium matter?
Katie has been diagnosed with a number of disorders since she was about 3. At 13, the situation has become critical. In order to respect her privacy, I’ll try to speak in generalities that anyone who knows a child who suffers from an ASD (Autism Spectrum Disorder) can learn from. And hopefully families who live with ASD can relate and find some comfort and hope from someone who’s “been there”.
I remember the relief I felt when I read in some book on ADD about the toll it takes on families. It wasn’t just that I was handling the situation badly, but that it’s a situation that can’t be handled. We deal with it as best we know how, but moment by moment we struggle with the impossibility of the disorder. Day after day, families are living with these disorders that the educational and medical communities cannot explain and really don’t know what to do with. Conventional wisdom tells us that when something goes wrong, there is a cause, and we do something to fix it. The common practice with neuro-behavioral disorders is to medicate to control the symptoms, and teach coping skills.
For 10 years I have been watching my daughter’s “progress” along this path. The enigma of these disorders is that there is intelligence- they do learn some things, some kids to the level of savant, but there is something that just isn’t working right, and the child is behaviorally challenged. Discipline barely makes a dent in unacceptable behavior. Often the child’s frustration level escalates to a level where their behavior becomes more and more anti-social. This is the point that we are at, and last spring I had come to a point of desperation. I guess I really hadn’t allowed myself to think too much about her prognosis for the future, but as middle school happened, her anti-social behavior began to increase dramatically. She was clearly getting worse. Daily she would swing between belligerence and remorse. I cried out to the Lord that I just didn’t know what to do. We had done all that we knew to do. I can’t say enough about the staff at our little school: they have bent over backwards from the time she entered the system at age 3, and I don’t believe she would have come as far as she has without their efforts. They were always upbeat and encouraging, but I know that they often shared my pain and frustration at what to do with this kid.
As I was praying, I was also searching the ‘net. Bob and I were in Florida last March for daughter #2’s pinning ceremony at nursing school (Yay Emily!) , and as the sun began to rise over the canal, I found the answer. I knew it was the answer, but I still proceeded with caution; I wanted to be sure that my desperation didn’t take me on some wild-goose chase down Eureka Lane that ran into a dead-end called Disappointment Circle. I ordered the book right away, and waited impatiently for it to arrive.
Well, as always happens, my writing times are dictated by schedules… I have to stop and begin the day, so I’ll publish now, and then later get on with the next phase of the story…