My Sister, the Author

Our book is published today. THE NORTH SIDE OF DOWN joins the select few books actually written by an author (or co-author) with Down’s syndrome.

Amanda has long been a writer at heart.  When she was a baby, she used to climb the stairs and sit with me in my bedroom while I wrote page after page on spiral-bound note paper.  I wrote and illustrated hundreds of pages of horse stories while my patient companion was content to just sit cross-legged on the bed near my desk, watching me or quietly coloring or just waiting.

At that time, I didn’t realize the impact this was having.  Amanda was just a baby then. I graduated, moved away to Alaska and then the western states.  In the meantime, Amanda grew up illiterate.  Finally, when she was around 20 years old, I had moved back to Michigan and was spending lots of time with her.  I sat with her in the big gold chair in the living room looking at the back of an Eddie Rabbitt album.  She was a huge country music fan.  I was reading the words to, “I Love a Rainy Night.”

She was attentive as always, and I began pointing out the letters and sounding them out.  When we reached the end of each line, we would sing it.

Perhaps it was the simplistic repetition of the song, but I thought she was catching on.

Later, watching a “Hooked on Phonics” infomercial, I told my then-husband, “This might work for Amanda.  They use music, see?”

He wanted no part of spending $200 on that program.  So, I saved my money and ordered one, and brought it home on my next trip North, along with a couple of Dr. Seuss children’s books.  Mom and Dad wisely sent the program to Amanda’s school.  It not only helped Amanda. but other kids in her special ed class learned to read, too.  When I asked Dad about her progress later, Dad said, “Yes, she is learning, but it’s going to be limited.”

I will never forget the first time Amanda stumbled through, “Green Eggs and Ham.”  I was in tears.  She was 21 years old by then, and opening a whole new door for herself.

From that point on, the household exploded with paper and notebooks.  Amanda was filling every spiral-bound notebook in sight, practicing her writing in her shaky, angular cursive hand.  She copied pages of old paperbacks.  Eventually she began writing her own thoughts; page after page.

A writer was born.

When finally she began journaling after our Mom’s death, I asked her, “How would you like to write a book with me?  We can write about our mother, and Dad, and our experiences with the family.”

She loved the idea.  We pored over our story, building it one page at a time, editing and discussing and reading to each other.  We lost Mom, and we cried and wrote.  We lost Dad, and we cried and wrote some more.  Our siblings battled over Amanda’s guardianship, and we wrote on in determination.  We were partners in a combined effort.  This was our project; our journey.  When I asked her if she was ready to become a published author, she said, “I cannot wait!  I. CAN. NOT. WAIT!”

So the little girl who quietly sat by has become a literary force in her own right.  Unencumbered by her disability, she forges onward.

“Limited,” indeed!  …If Dad could see her now.

Click to Order

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About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
This entry was posted in amanda, books, down's syndrome, family. Bookmark the permalink.

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