Tag Archives: nonfiction

Annuals and Perennials 

 

Every year it comes, the dreaded annual. 
Living with a child with disabilities, the grief comes in waves. No matter how long you live in acceptance, milestones come that usher in fresh reminders of what your child cannot do, and the grief floods in again.  Another child’s success, a failed outting, the annual doctor’s visit.  
Savannah’s annual visits are my downfall. Every year I am reminded not only of how far away she is from her peers, but how far away she is from where she used to be. There is a review of skills she may have lost or that she is having trouble regaining. Annuals are a reminder of what is not blooming. 
This year Savannah is thirteen. Thirteen is a whole new level of development. The teen years have begun, and my teen still can’t bathe herself. But this year, there are things my child can do. 
In the past twelve months (really just the past six), Savannah has gone to the theatre for the first time; she is getting 80’s-100’s on modified AR tests; she is following directions; she is controlling her anxiety; she has pet, more than once, both dogs and cats; she can type her first name without help; she will spontaneously use her AAC device to communicate; she has eaten in more restaurants; she helps with the dishes; she is wearing eye shadow and lipgloss.  
The doctor sat there stunned at my words of new things and lost skills that Savannah is now able to do. Moreso, the doctor was stunned by Savannah. She teased the nurse and listened to the doctor. She showed the doctor her eyes and nose and mouth and ears. She remained engaged. It was obvious that Savannah was blooming. 
Savannah is blooming. 
Five years ago, and every year before, Savannah’s weight remained in the 10th percentile. Five years ago, Savannah wore a 7 slim.  Four years ago, I could hardly squeeze her into a size 18. Medications had created an insatiable, obsessive hunger. Her weight had grown dangerously into the 95th percentile. Food had to be measured and proportioned.  It was hidden in the basement in tubs and re-measured and re-stocked in the pantry each night. Calories were calculated in a notebook every day, every meal, every snack. Sneakers were bought for walking, which turned into running. And now, after four years, the calorie notebooks are being thrown away and new running shoes have been bought. Savannah is officially in the 55th percentile. We will keep the healthy lifestyle, but we will no longer struggle. No longer worry. No longer obsess over food. The days of food rationing are over. 
This year the dreaded annual was a celebration. This year, it was a perennial. 

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.


Imaginings

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Today an old friend said to me, “I can’t even imagine having an eleven year old non-verbal.”

I love that type of friendship. That type of honesty. That ability to lay the poison right out in the open. In actuality, it’s a healing poison. It’s nice that, although years have passed, the intimacy of honesty is still there. I understand that those friendships are quite rare. I also understand that God has incredibly blessed me with both family and friends who fall into that category. Honestly, how is it possible to face each day without knowing those blessings are there?

I consider myself to be quite open when it comes to Savannah. Maybe I’m not, but I hope to be. I don’t consider myself easily offended, but then who does? I am offended when people without disabled children claim judgements about things they can’t possibly understand. Or when people who have seen Savannah only a few times have the answers, and yes every family has those. Every single family. But I am never offended by a question. Truthfully, I’m thankful for them. What greater compliment than someone who cares enough to ask. To search out answers. To desire more information about a disabled child, my disabled child. What greater compliment than honesty.

After the long distance text, the question lingered. It followed me around, haunting me, consuming me, a poison pulsing in my veins. I couldn’t imagine it either. I can’t. I tried, but I can’t. Sometimes, I look at the tall girl before me with breasts and everything else that buds when womanhood approaches, and I don’t recognize her. I can’t see the silent child with so much potential who I cradled in my arms only a few years ago. Other times, I look at childhood pictures of an adorable little girl, and i don’t remember her. I don’t remember the big blue eyes and innocent smile that brought me so much hope. I can’t wrap my fingers around the hope at two or four or even six years old. The hope that words would return, school-by definition-was inclusive and even the possibly of college.

At eleven, the hope is deflated. There is no more imagining. There is only doing and loving, as you slip forward into twelve and thirteen and fourteen and the terrifying future you’ve tried to change. The future of hormones and education biases and program gaps and legal loop-holes and autonomous desires and living arrangements and special needs trusts and the undeniable, unacceptable future after you have passed. And one day, you will pass. I will pass, and then what?

Eleven and non-verbal. It is unimaginable.


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


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