Sunday, December 14, 2014

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

Saturday, November 29, 2014

Coming December 1
Click to order!
My new book, "The North Side of Down" will be available in just a couple of days. This is a bittersweet time for me, as this is my sister Amanda's story, and it involved a lot of heartache for both of us.  Amanda has Down's syndrome and she lost both of her parents within the space of 3 years.  As if that wasn't bad enough, she became enmeshed in a belligerent guardianship dispute between two siblings.

"The North Side of Down" tells how Amanda bore the pain of this era, this life-changing state, as she was hurtled through funerals, fights, being moved from one home to the next, court cases and isolation.  She managed it all without losing her dignity and in fact, came out smiling.

As much as I am horrified by the behavior of our siblings, I marvel at Amanda's elegance.  It's unfortunate that, due to more legal red tape, I was unable to keep her name on the book as my co-author.  But this is her story, heart and soul.  She will still get 50% royalties and I still expect her to attend events and book signings with me.

Our hope is that this story will give others a heads-up to get affairs in order.  You may grow up with someone, but you may not really know them until the chips are down.  At that point, you will find your true hero.


Thursday, November 6, 2014

I'm a Believer

Clifford makes his stage debut this Saturday as Lord Farquaad's trusty steed in the Community Theatre of Howell's version of, "Shrek the Musical."

This wasn't my idea, despite the fact that I fell in love with the movie.  Hard.  I was so in love with, "Shrek," in fact, that I saw it on the big screen no less than six times. 

That's excessive, even for me.

I also bought the soundtrack and played it in my car until I wore it out.

When my friend, director Ann O'Reilly, first contacted me asking if Clifford could step in as Farquaad's horse, I didn't hesitate to jump at it.  But my first reaction to the idea of a musical play was to wonder how it could ever measure up to the dynamic genius of the film.  The answer, as with most good plays, is that it doesn't try.  It has the same characters, or some variation of them, the same story, and much of the same dialogue.  The music is different.  The acting and dancing and special effects all fall upon the mercy of whatever company is producing the effort.

But Howell is doing it right.   Mark Mazzullo's Shrek is a giant, green, bumbling behemoth.  Fiona, played by Annelise Hoshal is a flaming-haired goofball with a mean set of tap shoes.  Kevin Rogers' Donkey has the comic timing demanded of someone dressed in a suit with floppy ears.  The dancing, the music, the colors, the lights!  With the flash and glitter of the headdress of the formidable Dragon, the mighty Melinda Towns has a voice that could rival Adele.  And as Lord Farquaad, performing the entire two hours on his knees as a tiny little man who "overcompensates", Chris Salter is stealing the show.

Clifford has attended two rehearsals and, as I expected, is reveling in the glamour and attention.  His role is mercifully short -- he is to carry Farquaad down the aisle between the seats, deposit him on the stage, wait while he proposes to Fiona, and then deliver him back up the next aisle and out the back doors.

One of the most impressive things about Chris is that he is not a rider, but he is making it work.  "Cliffy, come to Daddy," he croons, as Clifford sidles a step away from him.  I realize this is one of the great things I miss most about live theatre -- the quick thinking, the ability to improvise during the inevitable unexpected moments.

Clifford is handling everything just fine, despite Farquaad's struggle to negotiate with the fake legs.  The hardest part for me will be getting through it with a straight face.


Thursday, August 28, 2014

Are You a Retard?

Amanda saying, "Hmm..."

Today I would like to address the label, "Retarded."  I have heard this misused twice in the past three days.  In both cases it was applied to my sister Amanda, who has Down's syndrome.  In the first instance, the word was used by a cousin (in-law) in a flustered attempt to define Amanda's "condition." She finally finished with, "Well, there are a lot of names you could call her, but she's a child!"

My response to that was, "There are a lot of names I could call you, too.  But she's an adult."

In the second, the label was used by the producer of the shows my dogs perform in (more accurately now described as, "my ex show producer") in an attempt to hurt my feelings and insult me.  The phrase was, "You're retarded, just like your sister."

My response to that one was, "Thank you."

Ignorance is found in all walks of life and in all professions.  I have experienced the gamut of reactions to Amanda, but the most offensive ones often are from people who I thought would know better. One Michigan library director said, "We have a coupla Down's Syndromes who work in the cafeteria." 

 Uhmmm... A couple of WHAT?  Excuse me?   And you work WHERE?!  I think the title of my next book should be, "I Am Not My Disability!"

I have friends who, when joking around, will say someone is, "retarded," or, "such a retard," and then they catch themselves, look at me and apologize.  The funny thing is, when it is used in this way, it doesn't even bother me.  I have never been hypersensitive about the label, "retarded."

The actual definition for "retarded" is, "Occurring or developing later than desired or expected; delayed."

To me, this would more accurately describe someone with a learning disability.  For instance, I could say that I myself am mathematically retarded.  Ironically, my cousin-in-law is apparently emotionally, certainly socially, and perhaps intellectually retarded.  The show producer is intellectually, emotionally and socially retarded.  And both, in terms of understanding disabilities, are suffering from educational retardation.

Amanda, on the other hand, has an extra chromosome.   She is academically as advanced as her chromosome collection will allow.  She is not "late" or "delayed" at all in her emotional, social and intellectual development.  Therefore, I can state pretty accurately that she is less of a retard than the three of us.

So, before you take offense to the word, "retarded," remember that it does have its applications.  The question is, is it being used correctly?  To muddle it over seems a good idea, because it might save you a knee-jerk reaction.  Or better yet, to use one of Amanda's catch phrases, "Think again!"


Tuesday, August 26, 2014

The North Side of Down

"There are two powers in the world; one is the sword and the other is the pen. There is a great competition and rivalry between the two. There is a third power stronger than both, that of the women."
- Muhammad Ali Jinnah
It has been a rough couple of years:  Rougher even than my divorce, or the subsequent foreclosure of my home.  What made the past few so difficult was the loss of my parents, magnetized by the suffering of my poor sister, Amanda.  She has Down's syndrome and became the object of a feud between two siblings vying for guardianship.  Amanda had made her choice, but the entire family was still dragged through an excruciating legal process that lasted for nearly two months, immediately following my Dad's death.
During these weeks I devoted nearly all my time attempting to comfort and reassure her.  Though terribly depressed, grieving, confused and scared, she handled the situation with tremendous dignity.  She handled it better than I did.  I was furious.
Amanda is in her forties.  She spent her whole life living with my parents in the remote Northern Michigan village.  She was their buffer, their companion, their servant (often unwilling), and their endless source of entertainment.  Amanda is a brilliant wit and, since she is universally underestimated, her snappy one-liners can ambush the innocent bystander.
For instance:
Me: Did you have a good birthday?
Amanda: Yes.
Me: I would hope so. THREE birthday cakes, jeesh...
Amanda: Yeah. Tomorrow it's back to normal food. Snickers and Milky Way.

One thing Amanda and I have in common is that we both love to write.  During those terrible weeks in 2013, we found solace in sharing our thoughts, and putting words on paper.  Even then, I saw the start of a book happening.  We were living it.  Every day that we were together, we made notes.  Often Amanda would initiate these sessions by saying, "Let's work on our book."

It brought tremendous comfort to both of us.  Now I am finding that most memoirs having to do with Down's syndrome are about babies, written by the parents...  People reeling from the reality of how their life will never be the same, and not in ways they expected.  But Amanda's story is one of later years, and hopefully will serve as a warning to folks about getting their affairs in order.  I hope that this story will spring from the ashes and help someone. 

The manuscript is in the final editing stages now; our story is told.  We are searching for a publisher, but teetering on the brink of indecision, as there are so many self-publishing options available.  Please follow us on Facebook for regular updates.

THE NORTH SIDE OF DOWN will describe, as no other book has, what life is like growing up with someone with Down's syndrome. It will show how sometimes those with the softest voice have the most to say. It will show how appearances can deceive, not only in those who seem simple, but in those who seem the most loyal. It will examine how the legal system can paralyze a disabled person in the wake of the loss of a guardian. Perhaps most importantly, it explains the concept of true forgiveness.

Sunday, June 15, 2014

Clifford Visits Fernwood Botanical Garden and Gallery

We had a whopping turnout of over 300 people to meet Clifford, pose for photos and see him sign books at Fernwood Botanical Garden and Gallery in Niles, Michigan.  The setting was beautiful and so was the weather!  You can't ask for more.


Sunday June 15

Monday, May 12, 2014

If You Call, I Will Panther

When I was in high school, my art class took a field trip to a gallery in Sault Ste. Marie, Canada, to view a show featuring some Canadian wildlife artists.  I wandered around the room looking at various paintings of foxes and wolves and loons.  They were all impressive, and I thought I could have stayed there all day, but one kept drawing me back.

It was an arctic gyrfalcon sitting on a cliff.  The thing that was most remarkable to me was the atmospheric feeling about it.  Even though the focus was on the bird and the rock, it gave the feeling that I was viewing something that was very high up in the air.

I went back to this painting so many times that my classmates started making fun of me.  "Nancy really likes that one!"

I didn't care.  I wanted to make sure I remembered the name of the artist.  And his name became emblazoned on my brain:  Robert Bateman.

That was in the late 1970's. Now everyone who is the slightest interest in the wildlife art world has heard of Mr. Bateman, and most are familiar with his dusky technique, his soft naturalistic stroke, his muted colors.  I can usually identify his work on sight.

I was even able to meet him in person one day in the early 1990's, when he was riding the crest of his fame and success.  I had stopped at a bookstore in Ann Arbor, and saw a modest sign on the door:  "Artist Robert Bateman, here today."  I could hardly believe my luck!  I went home and got the book I had featuring his work, and brought it back so he could sign it.  Like many artists, he was rumpled, soft-spoken and modest. He spoke reverently about the earth and its creatures.  I was smitten.  I was so tongue-tied that I couldn't express my admiration, or even propose marriage.  But I did hold out my hand, and he shook it and I came away thinking I'd never wash the hand again.

So when I was approached by Fulcrum Gallery to blog about their product, and they offered to send me a print, I skimmed through what they had available.  I was thrilled to find Bateman's "Tropical Cougar" in their inventory.  Fortunately, their website was easy to navigate.  I pored over matte colors and deliberated over how to frame it.  Finally, I picked a soft eggshell matte and dark wooden frame to match the understated tones in the image.  It arrived two days ago, packed securely in cardboard, flawlessly framed in the colors I requested.  It now hangs in my bedroom, designed to inspire me every morning.  Thanks Fulcrum Gallery.  Thanks Robert Bateman.  I did eventually wash my hand, but now at least I have one of your prints.

Tropical Cougar by Robert Bateman

Friday, March 28, 2014

Border Collie on Slate

My friend Barb's border collie is featured in today's slate painting. This beautiful dog has appeared on billboards promoting pet expos all over the country from Michigan to New York. She is easily one of the fastest dogs I have ever seen. I was happy to be able to paint her and I incorporated the image of the sun in honor of her name: Bryte!  About 6x8"

Feline Art

I was a little tempted to change this cat into a Somali or Abyssinian, as that is my "breed bias", but this time I decided to leave it black.  I think it works with the coldness of the marble sill, the snowy day and the blue glass.  This painting is about as close to a still-life as I get.  It is actually a study in textures.  I found it an interesting challenge to have black fur, under the circumstances, emanate warmth.

This is acrylic on 9x12" gallery-wrapped canvas.  I have prints available in my online gallery at Fine Art America.