Tag Archives: PDD

Bowling Without a Safety Net

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There’s no way to know what to expect. There could be a melt down or an aggressive episode or a potty accident. On the other hand, there’s no way to know what to expect. There may be stares, judgements or ignorant words that hurt nonverbal feelings.

Every outting is a gamble. There’s no guarantee nor predictability. All I can do is consider if there’s a possibility Savannah may enjoy it and be prepared with an exit strategy.

Last night we went bowling. Not Special Olympics Bowling. Not bowling with the expectation of disabilities. Not bowling with a safety net. We went bowling. Ordinary bowling alley with ordinary kids on an ordinary Tuesday. . . Well, it was suppose to be an ordinary Tuesday. Instead, it became the Tuesday we went bowling.

Savannah’s brother is a Cub Scout, and all families were invited to bowling. All families. All parents. All siblings. And so we went.

At first Savannah was overwhelmed by the noise. We lingered in the entry way, enjoying the rubber duck collection in an arcade game. And then in happened, her brother’s den leader came over to say hi to Savannah. She visited and admired the ducks with Savannah before returning to the boys. Then the assistant troop leader came over and said hi to Savannah while trading in her shoes.

Shoes.

Once Savannah saw the bowling shoes, she was ready. Once her shoes were on, we cut through the noise and crowd and to the Scout lanes. She only bowled three frames before she was ready to leave with a large proud smile, but while there, with each throw, the Scout parents cheered. It may have only been three frames, but they were three successful frames. Three frames that taught me, we could bowl again.

There’s no way to know what to expect. There can be smiles and bravery and bowling. On the other hand, there’s no way to know what to expect. There can be acceptance and cheers and hidden blessings.


Back to Better

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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

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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.


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.


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