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Saturday, August 29, 2015

Was Someone Staring?

Another article that wasn't accepted, I share it here.
When my daughter, who has multiple disabilities due to Aicardi Syndrome, was 18 months old and we got her first wheelchair I remember feeling extremely conspicuous.  As far as I was concerned you might just as well paint me bright orange and make me walk down the middle of the street because I felt so very uncomfortable.  I didn’t want us to be noticed; to be stared at.  The physical therapist we were working with was very excited and happy about the chair, I was not.  As time went by we did get stares and those odd looks from passersby, both adult and children.  As my daughter got older and larger, so did her chairs and with each one a little part of me cried because all I wanted was to blend in with the crowd and that was getting harder and harder to do. People were looking. They were looking at us, at her, at me, at her chair.  We were unusual.  Another thing that happened as she got older was that my daughter began making noises.  Not yelling or screaming, more like grunts, groans, moans and the occasional “aaaahhh!”  Then there were noises associated with the seizures.  Always at the worst times, like during silent prayers at church, or when a child had a solo at a school concert.  Now people were really looking!  We didn’t let it stop us.  After all, (I tell myself still), this journey, this life we live, is not about me.  It is about my daughter and her journey through life.  I’m just here to help her along the way.
She is now 22 years old and on our last vacation I had a realization.  If people are staring, I don’t care. I. Don’t. Care.  Really. Another thing: I didn’t notice if anyone stared or not, and if I think about it, I can’t remember that last time I was upset because someone stared at my daughter or me, or all of us together. We go places all the time, the mall, the supermarket, fairs, parks, concerts, anywhere we please. My daughter is still the same as always in looks and noises and all of it. If people are looking I am oblivious to it and that is a nice way to be.  After all, she is a fascinating person.  I find myself staring at her when she is happily watching TV, playing with her bead toy, or just looking up at the trees because she is such a wonder.  With the deficits in her brain, and eyes, and muscle tightness, and seizures it is amazing to see how she is aware of what is around her, who is around her, and interacting with it all.  So perhaps all those times when she was young and I felt like hiding, people were staring because (at least some of them) also saw the wonder of her.  As for the rest?  Well, I guess they must have just been rude and I don’t care.

Wednesday, August 26, 2015

A Writing Exercise Story

I'm taking a little break on this one and sharing with you a  fiction/fantasy story I wrote from a writing prompt for my writers group.  One day I may write a follow up to it, what do you think?

Flora to Fauna           

Penelope hurried along the path leading to her favorite spot in the park where everything seemed just a little different. Finding the hidden break in the hedges she brushed the fluttering petals off her face, inhaling the sweetness of lilacs and lilies as she entered the cool dimness of the garden.  Birds twittered and squirrels chittered as she made her way around the huge animals sculpted out of bushes there.  The work of elves and fairies, she thought as she considered each one in turn.  Passing by the llama, lamb, cow and lion she stopped, tipping her head back to get the full effect of the elephant.  “You’re my favorite” she whispered as she sat with her back against an ancient oak nearby.  Pulling a sandwich from her bag she sighed in contentment and opened her book of poetry.  After some time the effects of the quiet garden and heat of the midday sun leaking through the gently waving leaves overcame her and she fell into a deep contented sleep, her chin resting on her chest.

             “When daylight turns to darkness

             There’s a nighttime in the noon

             No sun shines down upon us

             And neither so the moon

             Then flora becomes fauna

             And the fauna cry in fear

             That is when the world will know

             The One in charge is near.”

Penelope stirred and lazily opened one eye to murky light.  “Who said that?” she mumbled, still not quite comprehending the changed conditions.  A bumble bee hovered in front of her.  “Did you say that? I couldn’t quite hear you if you did.  Who’s Flora and why is it dark?  Who’s in charge?” Regaining some of her senses she waited for the bee to reply.  “You heard me,” the reply was almost too soft for her to catch the answer.  “Think about it, as you watch all that happens around you.”  “Who are you?” she asked the bee, “and what am I to watch?”  “You’re full of questions, be patient little one.” He said, and added as he flew off, “I am Bob.”  As she watched him zip away she heard a ripping sound, almost like Velcro when it’s torn apart, only thunderously louder.  The ground around her began to shake and the tree trembled behind her.  She looked about her through the greenish dim light terrified with the realization her topiary friends were galloping about, bumping into each other.  The elephant stood in front of her, loose roots hanging off its legs spewing little balls of dirt as it shook them as one would do after standing in one position too long.  Wide eyed and trembling Penelope looked up into the creature’s eyes which emitted an odd brown glow as it commandingly intoned, “Since you have always shown me kindness I will carry you on my back to keep you safe during the uprising.  Climb up my trunk and settle yourself securely, and hang on to my ears.”  The child, though shaking in her shoes, obeyed and did as she was told.  From her vantage point on top of the behemoth she could see that all the trees shivered and the topiary animals were spreading out through the park.  People ran and screamed in horror as loose roots and dirt pellets rained down, for when they tore free of the earth they also gained size.  As her mount picked up speed she began to relax and take in the pandemonium.  Panicked birds flew in screeching circles after being disturbed from their roosts by trembling trees. She saw dogs and cats huddling together behind boulders or running neck and neck for the nearest building’s entrance in competition with people, squirrels, and every other animal in the area.  All were whimpering in fear and just when she thought she couldn’t stand to see any more she heard buzzing and felt something land on her shoulder.  “How are you dear?” Bob inquired barely audible. “Are you starting to understand?”  Penelope, still looking at the masses crowded and trembling in the buildings entrances, sighed and murmured, “You are the One in charge.”   “Yes,” he purred, “You are perceptive, my dear. The topiary witness many crimes against nature as they stand their silent watch. Everyone must begin to change their ways and care for the Earth and all life forms, plant and animal alike. Nature out of control is a fearsome thing and hopefully this display will stay with them so they begin to change their ways. Now, time for you to rise, rise, rise!”  His voice got louder as Penelope began to float up, and then down, down, down.  The sounds of chaos became fainter and further away as she wafted as a leaf on a gentle summer breeze back to the base of the ancient oak.

            “Penelope!” she heard through a drowsy haze, “There you are dear, wake up!  Goodness, you must have been tired.  I’ve been calling you for five minutes!  Didn’t you hear me? I had to come all the way in here to get you.  The picnic is over; it’s time we went home.”  Standing up and picking up her bag she walked alongside her mother, turning to look at her friend the elephant as they passed.  “Mommy, I had such a dream!”  “You can tell me all about it on the way home, Penelope; your dreams are always so exciting.” As they made their way through the park, a bumble bee trailed behind.




Tuesday, August 11, 2015


The river flows as it must toward the sea
While its surface reflects all the feelings in me
The breeze breaks the surface in ripples and dips
The sky is reflected distorted by this
Fish break the surface from shallows and depths
While gulls, ducks and osprey dip feet and wing tips
Motor boats speed while kayaks float slow
All making waves on the surface as they go
At night all is quiet, it's smooth as plate glass
Resting and preparing for when dawn comes at last
And always, still always, the flow toward the sea
The current of the river carries hearts of poets like me.
The mighty St. Lawrence, Alexandria Bay, New York.

Wednesday, August 5, 2015

Inclusion Story

I wrote this recently in response to a writing challenge from "The Mighty", a website to which I've become a contributor.  They don't use every story submitted to them, so since they didn't use this one I thought I would share it here. 

After six years in a self-contained therapy centered special education school located several towns away we decided to bring our daughter back into our town schools for her education.  We wanted her to know that she is part of the community where she lives.  It was a scary thing to do as the class she would join had recently relocated from an elementary school to the middle school, and she would be one year younger than the sixth graders. We didn’t know how welcoming the general education staff nor school administration would be but hoped for the best, and prepared to fight for inclusion if necessary. The principal was welcoming of the class, and seemed generally supportive.   If there is one person I could credit with the success of the transition for both Hillary and our family it would be the chorus teacher.  He embraced her and her classmates and helped the other students understand how to interact with kids who were differently abled.  Even though Hillary and her classmates were all nonverbal and had a myriad of serious challenges he fostered an atmosphere of acceptance and focused on what people can do, not what they cannot do.  He stood up to the few concerned parents at back to school night who were afraid that somehow this group of differently abled students would lessen the class for their typically developing kids.  With the help of her teacher and through the use of dance routines, adapted rhythm instruments, assistance from classroom staff and student volunteers my daughter and her classmates were able to fully participate in concerts, Christmas caroling, and other music related activities over the years.  We were even able to see something we never dreamed possible in both of our girls on the stage in a concert together.  He included them in keyboard labs, and made sure he told us how excited Hillary was to be making her own music on the keyboard. He attended Hillary’s IEP meetings with positive input.  This wonderful teacher brought his other classes to my daughter’s classroom to visit and participate in special activities and for birthdays to sing happy birthday to the honoree.  Because of his attitude and efforts, Hillary was able to make friends and be known in her town as part of the community, not just the girl in the wheelchair.  When she graduated from the middle school it was Mr. D who asked us personally to please allow her to participate with her peers in the graduation ceremony, as not all the parents of her self-contained class in years past had allowed their child to do so. He assured us that we would be able to sit in the front row right in front of her so that if she had a seizure or needed us we would be right there.  We agreed and are glad we did.  Four years later when she graduated high school we invited that teacher to be Hillary’s honored guest and he gladly accepted.  I have no doubt that without such a special person acting as a bridge between Hillary’s world and other students the transition to our town school would have been much more difficult for all of us.
The results of our decision are still being felt in that when we are out and about in town or a surrounding community we generally run into someone who knows Hillary from school and approaches to say hello.  I'd say this is really a success story for inclusion.