Tag Archives: writing

B-A-B-Y doesn’t always spell Baby

Savannah was an early talker, but more impressively, an early reader.  I’m certain I wrote it in my obsessive list of Savannah’s accomplishments, but my memory only places it around very, very early.  I am certain, however, that it was at Super Target, during a time when we lived in a dingy apartment.  We had one car we divided between us, so errands were run in the evening, after a day of baby care and a sleepless night.   I was exhausted and spent, trying to pinch pennies and calculate coupons.  Savannah sat in the basket listening to me ramble, describing everything around us, everything in the cart, everything we needed and couldn’t afford.

“Bay-bee!” Savannah interrupted.

“What are you saying?” I asked, the way any parent would  It is the automatic relex that kicks in even when you’re half asleep.  It replies and encourages without demanding any thought on the parent’s part.

“Bay-bee!”  Savannah demanded thought.  She reached and squirmed in the basket for an object behind me.  I began to back the cart up to find the interesting object, to stop the squirming.  We weren’t close to toys, and I found my curiosity piquing. Then she snatched it, dragging it off the hook and into her chubby little hands.  It was a small black purse with a chain shoulder strap, a chain draping across the front and silver charm letters which hung ever few links:  B-A-B-Y

Months later, while looking through a Clifford book at Barnes and Noble, waiting for the weekly story time, it happened again. Whle I read the words circling around Emily Elizabeth, Savannah yells “Ahh-Choooo!”  They were the letters arching over Clifford’s sneeze on the next page, blowing the fall leaves in his path.

A few months later, it happened again, with a most annoying book about busy bees. The book hummed the bzzzzzz of the bees with each page turned.  She opened the book to the first page, “Biz-beez.  Biz-beez.”

And then it stopped.

It has been years since those spontaneous readings.  It was a skill she lost after losing speech.  A skill that gave us hope her speech would return, until it was gone as well.  Now, she has a closet full of purses.  Pink, purple, black with fur.  Yellow, blue and green quilted.  Velcro-able with PECS, knitted and woven, laced and lined with glitter and sequins.  What she doesn’t have, is the ability to read B-A-B-Y.

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All That Glitters May Be Bronze: Area 3 Special Olympics

20130513-104122.jpgI remember listening to my aunts voice. My amazing aunt who faced intellectual disabilities in poverty, during a time when knowledge and opportunities were scarce. I was nine years old, and her voice was distant and metallic, echoing over the answering machine, crackling into the air. Crooked letters stumbled on top of each other, creating long indecipherable slurs, but the elation was evident. “I got a silver.” The words were charged. They popped like fireworks made of glitter and trickled through the air until they faded leaving behind currents of sparks for me to breathe.

Friday was Savannah’s forth Track & Field with the TN Area 3 Special Olympics. When the day started with giggles, and the clock whimpered, “4:00,” the air was already electric. It pulsed and thrived with a charged excitement that made my flesh tingle, as i fumbled to make coffee. Whether bowling, bocce or track & field, Special Olympics days usually begin at 3:00am. There’s too much excitement to stay wrapped in dreams. Friday, i was fortunate enough to sleep until 4:00.

Savannah’s first special Olympics proved to be overwhelming, for both of us. There were athletes ranging from eight years old to well over sixty. There were athletes in wheelchairs, unable to move their heads; athletes that barely met the mental cusp; athletes, like Savannah, non-verbal and in need of a constant aide. Every athlete there, from Down Syndrome to Autism to Cerebral Palsy, brimmed and overflowed with the thrill of competition and impending glittering medals. Chatter filled the auditorium, accompanied by excited squeals and the squeaks of wheelchairs. Sweaty palms and pounding hearts echoed off the steel dome and wood-clipped floor. We were shuffled and shifted and caught up in the current of intensity which left us physically exhausted and emotionally drained with two bronze medals of courage in tote. Savannah had been confused and overwhelmed, standing at the 50 meter dash and then later running the dash at the softball throw, but at some point through the chaos, the current of excitement soaked through her flesh, poisoning her blood, causing her skin to glow. It wasn’t until a few weeks later that I discovered how much of the event she had actually understood. Before bed one night, I slipped into her room for one last blanket-check. I found her well tucked, sleeping with her lips curled into a soft pink smile, her fingers tightly clinging to a bronze medal.

Four years later, we were veterans. The electricity and excitement serging through our veins. Savannah held her aide’s hand during the Parade of Athletes, stopping to smile for pictures. Flashes refracted of her pale skin, causing it to shimmer. Anxiously, she pulled and dragged us to her first event, the 50 meter dash, twenty minutes before the event. The year before we had practiced every evening. This year it had rained the month before. “Go!” Rang out, muffled and stifled by cheering. Amazing athletes ran on either side of Savannah. She stood in the middle lane, her head buried in her arms, her eyes squeezed closed. Her aide encouraged her a few steps, but her eyes and head remained hidden. After the other athletes were finished, after they were congratulated and given their times, Savannah’s aide was still walking with her down the lane. Savannah finally crossed the line, never once looking up. She stood stoic on the risers, receiving her bronze, refusing to smile.

As soon as we returned to the other athletes on her team, the giggling began. The weight of bronze resting against her heart had charged it. It was irrelevant she hadn’t run. She had finished. She had been overwhelmed, but more importantly she had overcome. The other athletes had run faster, but Savannah had worked harder for each step, and now there were fireworks vibrating within her.

The energy of the day was starting to wear on all of us by the time her second event arrived. It was time to throw the softball. For her birthday, we had given her a softball. A reflective green softball to lead her practice. To lead her to the silver, which it did after an eight-foot throw. Physically exhausted, emotionally tired, and anxious to leave the currents of electricity behind, she accepted her second silver medal.

We spent the evening physically drained and emotionally charged, with finger foods and movies and giggling. Visiting grandmothers, in town for the electric event, lounged with pride and satisfaction seeping through their flesh, secretly hoping for an early bedtime. For Savannah, the thrill carried through the weekend, as she insisted on wearing her Special Olympics athletic outfit to church on Sunday. The girlie fashionista, usually wearing pink and purple and fur and leopard print and boots and glitter, instead wore sneakers, an athletic skort and the dark blue Area 3 t-shirt. Her fashion statement screamed what she couldn’t: how incredibly proud she was of her accomplishment and, like all of us, how ready she was for next year’s fireworks.

 

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Light It Up

My daughter is wearing blue to raise Autism Awareness as part of Light It Up Blue, which is each year on April 2nd.

Currently she is diagnosed with Pervasive Develpmental Disorder – Not Otherwise Specified (PDD-NOS).  In 2013, the new DSM-V will be released.  PDD-NOS will no longer be included, the definition of Autism will be changed, and she will be considered Autistic.

People with Autism precieve the world differently, and in turn, experience the world differently.

 It is estimated that 70% of people diagnosed with Autism suffer from comorbidity (more than just one disorder).  Which means they face more than just Autism each day. (www.gel.bbk.ac.uk/index.php?page=comorbidity-in-autism)

40% of people with Autism will remain non-verbal. This does not mean they cannot say words, but they are unable to use verbal language as their primary form of communication. AAC devices (Augmentative Alternative Communication) are very helpful for those who are non-verbal to express their needs, desires and thoughts.  (www.cdc.gov/ncbddd/autism/signs.html)

 

83% of people with Autism have irregular sleep patterns. (www.healthism.com/aritcles/autism-sleep)

Yes we’re wearing blue eye-shadow.  While looking at someone when they talk is usually considered polite, for many with Autism, it is multi-tasking.  Many have poor eye contact.  It isn’t that they are not listening, but that they are listening. Concentrating on what they see and hear at the same time can be quite distracting, so by not looking at you they are better focused on what you are saying.

Like any other disability, Autism affects every member of the family, re-defining family life.

Siblings offer something special to their Autistic siblings, teaching them in a way no one else can.

There are great benefits to therapeutic animal services, from service dogs to equine therapies.  While the therapies nor service dogs are covered by insurance, they are tax deductible and Autism Service Dogs are covered in the American’s with Disabilties Act. (www.autismservicedogsofamerica.com)

i have learned more from my daughter than i have from any individual, and she continues to teach me with each new challenge and each new success.

Information about Autism is rapidly evolving due to large amounts of ongoing research.  What is true today may not be tomorrow. If you’d like to learn more please visit www.cdc.gov/autism or www.health.nih.gov/topic/Autism


Alone. Confused. Abandoned

Alone. Confused. Abandoned.

I’d beg you not to leave,

But that would only hold you back.

I’d tell you to run to her a thousand times,

If you’d be happy.

I’d sit and bask in the joy you’d have,

Yet I’d hate myself forever.

So go, my love,

Spread your wings and fly.

I will smile, with slow tears.

Alone. Confused. Abandoned.

Billie Jean Grey


Samuel, the Good Samaritan

 I’m a simple man, really.  Army Specialist.  I’ve served in the Army about three years now.  My mom lives close to the base, next town over.  My dad died when I was young.  He was a cop after his Army years.  The church helped my mom raise me.  Now I do what I can to give back.  Fundraisers, camp, monthly tithe.  I believe there is always someone in need.  Even if the need seems small, it isn’t to the one who is lacking.  Jesus said, “I came not to be served, but to serve,” and I believe we’d all do better to live by that. There are three things I live by.  Three things that define me:  God, family and country. . . and Dr. Pepper.  I guess that’s four.


Rieff, the Master

The greatest force is love.  Money.  Power.  They may seem dominant, but it is the love of money and power that actually motivate. Love is the one thing that can truly drive a man mad or keep him sane.  A prime example is Hamlet and Ophelia.  The love for his father drives him mad. His sanity returns only with each Ophelian visit. Like the great Dane, my Lady is my love. My hidden strength.  I am creating a haven for her.  Her own sanctuary.  When it is perfected, and only then, I will bring her there.  Until that time, I watch her. Her cautious movements. Her studious eyes. Her auburn flowing hair.  In silence, I love her from a distance. I feel her burning in my chest. Stealing my strength with each breath.  I watch her read alone. Eat alone. Shower alone. When the time is right, I will steal her away from her loneliness. I will give her a new world. Her own world. And then she will be mine. To borrow from the eager Hamlet, “Till then, sit still, my soul.”


Bethany, the Baby

Sweet Sixteen.  What an understatement.  It’s not just the driving, even though that is so cool.  It’s that there are so many things to do.  School, parties, football games, basketball games, baseball games, church, youth group, retreats.  Addie, Julie and I always have somewhere to go, something to do and someone to see.  Oh and camp.  I can’t forget camp.  That’s where I met Sam.  He must be one of my best friends.  He was a councilor and like twenty or twenty-one or something, but we just hit it off.  We email and IM pretty much every day.  He’s stationed in the Middle East.  Army or Marine.  Something like that.  Addie thinks it’s weird, him being so old and all, but really it’s not like that.  I’m already in love with someone else, and wow, is he a good reason to go to church.


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