Tag Archives: Mood Disorders

Let the Joy Begin

Joy 2015

It has started, and this year it is already so much more. More joy.  More dresses.  More excitment.  Joy Prom is seven weeks away.

Our church, the creator and host of Joy Prom, has dresses and tuxes at no cost for the honored guests. So, on a joyful Tuesday evening, Savannah and I met up with Ms B and Ms D.  Ms B is the large-hearted woman who co-ordinates not only Joy Prom but the special needs ministry at our church, and Ms D is Savannah’s personal angel who makes personalized lessons every Sunday just for Savannah to learn the greatness of God. They are our blessings.

We arrived at the church for Savannah’s personal fitting. Like some upscale store catering to a movie star, dresses were brought in and shoes were laid out and accessories were bountiful and pop-tarts and VeggieTales were there on demand.

For over an hour, Savannah was Joan Crawford, Grace Kelly, Betty Davis. She tried on purple dresses, black dresses, pink dresses of one shade and then another, Dresses with sequences. Dresses with layers. Dresses with many colours. The child with sensory issues wore bracelettes and rings. Eventually, she settled on an off-red, one-strapped dress with flowing scarf, accented by silver sparkly three-inch heels. Her first pair of heels. She chose, out of all of the shoes showered at her feet, her first pair of heels. I took my little girl to try on dresses and an hour later left with a beautiful excited young lady.

Savannah left that evening with a new dress, a purse, jewelry and of course shoes. More importantly, she left happy, confident and feeling both beautiful and loved.

Seven weeks before prom: let the Joy begin.


Back to Better

20130930-063141.jpg
We finally caved when Savannah’s boot breezed past my face, the heat of it tingling my lips. We drove the rest of the way home with her screaming and banging on the glass, trying to escape. She repeatedly smashed her head into the window and her fists and her knees. Fears of cops filled the gaps of the anxiety laden air. We had to make it home, but we were hours away, and had found traffic.

The next day we sat in the doctor’s office. Our regular and fantastic pediatrician was on vacation, so we were seeing his partner, Dr B, for the first time. Purples, blues, pinks and greens tainted Savannah’s beautiful fair skin. The bruises and knots and scrapes started in the center if her forehead and littered one cheekbone and her chin. They covered her arms and legs and torso, even the tips of her feet were tarnished. The deepest stains were on the sides of her hipbone, from punching herself; the tender length of the outside of her arm between the wrist and elbow, from slamming her arm on the floor, the table, the chair; and above her Achilles’ tendon, from repeated beatings into her footboard.

My bruises seemed minor only to hers. They fell across my skin, down my arms and legs and back and hips and shoulders. They were from punches and kicks and bitings. My muscles ached, and my flesh was tired. My body seemed fueled by adrenaline and fear. The fear coursed through my veins, making me jittery. What if Dr. B didn’t believe her bruises were self-inflicted? It did seem unbelievable that this beautiful little seven year old child could inflict this on herself. The fear we could be blamed was poison. I held my breath and bit my lip.

As we talked with Dr. B, it hit. A full blown, albeit short-lived, episode. She lunged and screamed and threw her head into the wall. John tried to pick her up. She scaled him, still wailing and kicking and beating and biting, until she finally passed out. The doctor turned to me. “You realize this is not normal?”

I exhaled. Dr. B understood, and the process of pediatric psychiatrists to medicate for self-abuse began.

It’s been four years. Medications have helped, although it fluctuates. There are always adjustments to be made and tolerance levels change. Some days are great, others are as difficult as before. As I sit and look and the recent bruises staining my thigh and as I ice my wrist, I remind myself it’s just one day. This used to be everyday. I cling to the hope or prayer or whatever it may be, that tomorrow is back to better and not the beginning of a decline that tells us its time to change medicines once again.


the Joys of Joy Prom

20130609-174403.jpg

The excitement starts hours before, picking dresses and ties and painting toenails. We are fortunate enough to live in an area where our church annually hosts a prom from special needs individuals and their families and caregivers. One Sunday, years ago, a teen girl with Down Syndrome mentioned she always wanted to go to prom, but no one ever invited her. That was the mustard seed. It took root. It sprouted. It took over the hearts of hundreds of volunteers and grew into the most anticipated formal event of the special needs community in Northeast Tennessee.

It was the birth of the Joy Prom.

While the Joy Prom starts months beforehand with food organization and seating arrangements and live band confirmations and nail polish donations and formal wear fittings and online reservations and volunteer trainings, the actual night starts with a red carpet. Outside of the mega-church with the massive heart runs a red carpet and a pulsing line. The line stretches from inside the door and down the sidewalk with mountains of excited, anxious party goers, each one dolled up for a night on the town. If you took away the wheelchairs and walkers and oxygen and protective head gear, it would look like a night at a famous Hollywood club with patrons just hoping to get inside.

At Joy Prom, everyone makes it in.

After the wait, once you are second in line, and you can see excitement and balloons inside, that’s when they verify your name and the name of your escort. Then, as you become first in line, as your feet step through the door, your name echoes over the speakers, off the balloons, up from the red carpet beneath your toes. The crowds on either side of the carpet cheer and flashes pop while you make your way down the carpet like the star that you are.

Everyone is a star.

A map waits at the end of the red carpet. It holds the answers not only to where your reserved table is but to all the events the community has donated. Of course formal wear fittings are provided before the night of the event, but tiaras and shoe shines and makeovers and manicures and crosages and boutineres are available the night of, ensuring everyone is laced with glitter on their nails, their dresses, their eyes. Professional photographers have booths set up, hoping for a chance to immortalize each shining star. There are Wii games and fuse ball games and air hockey. On the other side of the church, two stunning horses, stolen straight from a fairy tale, wait to pull patrons in classic white carriages. In the auditorium, music vibrates from the stage. It drifts from the singers and the surrounding speakers, colliding with itself mid-air and raining down upon the patrons, kissing their cheeks and hair as it falls. After eating, tables and chairs are moved to the walls opening up a dance floor that’s crowded before its officially open. The dancing continues until the doors close and everyone leaves, not thinking they are special needs but knowing they are special.

It’s how God created them: special, not special needs.

For Savannah, each year Joy Prom has given her something new to enjoy. The first year Savannah wore a pink dress, pink faux pearls and her hair pinned up with a clip. Fascinated, she ran to the large white horse and carriage. When she was three, savannah went to a birthday party and rode a pony. Months later, enrolled in a magnificent north Dallas Montessori school, she again had the opportunity to ride a pony. She loved it so typically that we would pinch pennies just to take her on occassional pony rides. After moving to the Tennessee mountains, we decided to try equestrian therapy. Four years later, when her name arrived at the top of the waiting list, she had discovered a deep fear of animals, including horses. But at Joy Prom, she ran to them, fascinated with their size and beauty, basking in the slight breeze as they pulled her around the church parking lot like the princess she was meant to be.

It was her Cinderella moment.

The second year, Savannah repeated her Cinderella moment.  Twice.  But most impressive and memorable was taking our first ever professional family portrait. We meandered over to one of the many professional photographers who had donated their time. The goal was to have a picture taken of the kids together. Joseph was dapper in his black on black suit with purple and white tie. Savannah was beautiful in her matching black leggings and white dress with purple polka dots. The photo of the two of them was amazing. Both smiling. Both looking at the camera. Both genuinely happy. The photographer decided to look the gift horse in the mouth and insisted John and I hop in the picture. We were polite enough to obey, but shared the knowing glance that it would never happen. We were wrong. Our outfits don’t match with the kids, but its unnoticeable behind all the smiles and laughter.

The joy of our first professional family portrait.

The excitement of Savannah’s third Joy Prom started when the invitation arrived in the mail. She pointed to it repeatedly. “Prom. Prom.” A few weeks later she picked her prom dress, only to change her mind three times moments before we walked out the door. This time Savannah was escorted not only by the three of us, but by her grandmothers as well. This year’s Joy Prom held even more firsts. While Joseph had his shoes shined, Savannah took advantage of the manicure station, insisting, “Red!” By the time she arrived at the horse drawn carriages, a tiara sparkled in her hair. The girl, who hates her head touched, walked, rode and ate with a prickling, glittering crown upon her head. And then she danced. She danced with me. She danced with her grandmother. She danced with her other grandmother. She danced until her tiara fell off.

Then she danced some more.

Every year at Joy Prom, the anticipation and excitement grows. Every year, it brings new achievements. Every year, it brings more joy. Every year, there is a night that lets Savannah shine, from the tiara on her head to the glitter inside her striving to get out.

I cannot wait to see the joys of Joy Prom next year.


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.

Untitled-1


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.

 

20130513-104114.jpg

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


%d bloggers like this: