There are a lot of everyday heroes and heroines in life, and I truly think Eileen Riley-Hall is one of them. She's raising two daughters with autism, and when she couldn't find a book that offered any sort of hope, she decided to write one herself. Parenting Girls on the Autism Spectrum: Overcoming the Challenges and Celebrating the Gifts dispels myths and emphasizes practical advice on raising a child with special needs. I asked Eileen if she would write something for my blog, and I'm honored to have her here. Thank you so, so much, Eileen.
I always loved to read, and growing up I hoped one day to write a book. The first book I fell in love with was Charlotte’s Web. How I admired Charlotte and prayed for the world to see what she saw in Wilbur. In middle school, To Kill a Mockingbird took me South for with lessons in family and character. Scout and Jem were my companions, though I loved sad, sweet Dill best of all. By my freshman year of high school, I considered my tastes more sophisticated. I was wildly enamored of F. Scott Fitzgerald and his crazy, tragic wife and muse Zelda. Their ill-fated love seemed the epitome of romance. In my junior year I read Look Homeword Angel and fell under the spell of the poetic images, carved angels, “a stone, a leaf, an unturned door.” Look Homeward, Angel became my obsession. I carried the book like a medieval monk gripping the Book of Prayers. I even chose Thomas as my confirmation to the consternation of my parents and the Bishop. Of course, I know this makes me a total geek, as well as a devoted book lover. In my defense, I was a well-rounded geek. I was also a mathlete in high school – you know, feverishly solved math problems in tense competitions with nerds from other schools. But books were still my first love.
In college, I majored in English, following a brief phase as a philosophy major. After two semesters, my father pleaded with me to choose a major that might actually lead to employment some day. Apparently positions as philosopher kings are increasingly rare and don’t pay off college loans. So it was back to the novels and plays, and I continued my love affair with tortured artists – it all seemed so romantic to me. Dramatic lives, full of such heavy sighs and fading sunsets.
Then, life happened, as it does to all of us. I graduated from the grassy knolls and endless intellectual discourse of college to join the “real world.” After a bumpy start at several boring desk jobs, I eventually found my career as a teacher. My first job was teaching in middle school. It only took a few weeks of cajoling twelve year-olds into reading to realize that teaching in middle school is not about books; it’s about children. That year my feet touched the ground, and I found I liked it. The chubby, awkward, often too candid characters in front of me every day proved more compelling and complex than any character in a book. Reading To Kill a Mockingbird (still my favorite book of all time) with them became a chance to hear their stories of siblings and families configured in unusual ways. Every day was a revelation.
Then, life happened again. I became a mom – maybe the most “real world” experience a person can have. Oh, did I fall in love, like a crazy person! First with Lizzie, my brown-eyed baby girl, all serious and contemplative, like a skeptical little Buddha. And then two years later with her sister Caroline, my smiling party girl, all energy, mischief, and hugs. Never did I think there was anything unusual about my girls. They were just delightfully original, quirky and sweet. But when Lizzie was five, her nursery school teacher advised me to have an evaluation done with a developmental pediatrician. Lizzie was shyer than other kids, more intense. Having Caroline in tow the day of the appointment proved profound. The doctor evaluated Lizzie while Caroline lined up blocks on the brightly colored rug. I could see him watching Caroline out of the corner of his eye as he asked me questions about both girls. After a lengthy evaluation, the doctor pronounced Caroline with autism and Lizzie somewhere along the spectrum between Pervasive Developmental Disorder and Asperger’s. I was devastated. What would this mean? Why had just been eliminated from their futures and mine?
So I did what seemed wisest: I turned to my old friends, the books. Not novels this time, but parenting books, books on autism. The first books I found were grim, hefty tomes, describing therapies and struggles, or scary experimental interventions to be followed like a devout religion. They would not work for me, so I kept reading. I decided to become an expert, if not on autism, on my girls. And in ten years, I read everything I could, and talked to every teacher, therapist, doctor, and parent I met. And now at 13 and 15, my girls are nothing short of miraculous. Are they still “on the spectrum?” Yes. Are they in any way diminished people? Not one bit. I learned that a diagnosis is not a prophecy and autism is just a word to describe some things that might be harder for them to learn. But with opportunity and work and unconditional love, amazing things are possible. Today, Lizzie participates in her school’s musical theatre productions, and has earned straight A’s all freshman year. And Caroline still has autism, but she plays the trumpet in her school band, and she is learning algebra. Lizzie has perfect pitch, a remarkable feel for music, and a lovely voice, special gifts from Asperger’s. And Caroline is funny, does uncanny impressions of friends and neighbors, and is a virtual palm pilot of dates, times, birthdays, and holidays. Her gifts from autism.
So, I finally wrote my book. Not the novel I had once aspired to write. But a true story, decidedly less glamorous, to share my girls’ stories, along with my evolved understanding of autism and the irrelevancy of the word disability. We all have our struggles, don’t we? Some have labels and some don’t, but they are within us nonetheless. The “characters” in my book don’t attend fancy parties, nor do they stare glassy-eyed at lights across the sound. They don’t lament the emptiness of love, nor the surprising disappointment of success. They are my girls and the many amazing children like them who keep trying even when the whole world seems to say give up. I realized finally that writing a book isn’t about metaphors and angst; it’s about having something to say, something other people need to hear. You just put it in words the best you can.
So I end back where I began when I turned the first page of Charlotte’s Web. And like that insightful spider, I find miracles in the ordinary. I write so all of the world can see that my girls are: “Some girls!” and “Terrific,” but most of all they are “Radiant.”
No comments:
Post a Comment