Tag Archives: intellectual disabilities
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.
Transitioning into the Francis Building wasn’t easy, but it was the smoothest bumpy road we’ve ridden. The Mayo Clinic’s St. Mary’s Hospital has everything a girl could want. Disney movies on demand, Mac ‘n Cheese and nurses to accommodate. Without the incredibly attentive support staff, I don’t believe the EEG would’ve been successful, but would have instead fallen into the discarded pile of our failed EEG attempts.
I held my breath when the EEG techs unwrapped her head to attach and verify the leads. I was certain they wouldn’t get her head wrapped again. Savannah wasn’t pleased, but astoundingly, she let them probe her head and re-glue what needed to be done. Although, I think it helped that one of the techs knew Larry, the giant stuffed cucumber laying in Savannah’s bed. It’s always good to have a friend in common.
Then we got down to business and changed from the horrible hospital gown into a very stylish, very comfortable, very hot pink swimsuit. What else would a fashionista wear for a hospital stay?
With A Bug’s Life on the hospital tv, Mickey Mouse Christmas on our portable DVD player, Larry and friends in bed and comfortably dressed, there was only on thing missing. Mac ‘n Cheese.
I felt a bit foolish when ordering the food. (Yes, St. Mary’s has room service. You are given a menu when shown your room.) My first order was for Mac ‘n Cheese and two orders of French fries. I’m sure I looked like the conscientious mother. What the voice-waitress didn’t know what that the fries were also for her bored brother, who had been a trooper on the sidelines for the day.
Shortly after the food arrived, so did the giggles. I can’t say I’m happy about the food I let her eat during our stay (2 helpings of Mac ‘n Cheese, two sugar cookies, fries, a chicken sandwich, angel food cake and a muffin). I’m not sure if it was to keep her compliant or out of guilt from the circumstances, but twenty-four hours of gluttony is minor compared to a lifetime of having those EEG results.
St. Mary’s staff was amazing. Within the first few hours, two EEG doctors visited to be certain I knew what to expect and that the goal was to get the EEG. They would do whatever they needed to keep Savannah happy and compliant and all nurses had been made aware of this. An extra nurse was assigned to Savannah as a “sitter.” The sitter could be either in our room or right outside the door, it was my preference, in case an episode hit.
Which it did.
Savannah decided it was time to leave. Of course, we couldn’t. Hence, the episode. It started as anger, then a melt down, then I pressed the panic button. I was wrapped in the EEG cables with Savannah trying to push me to the door, but actually pushing me into the bed and floor, screaming and crying all the while. The nurse, again I wish I could remember his name – Mike, maybe – came rushing in. He calmed her while I unraveled me, then he placed her on the bed, which had been padded in anticipation. We both talked to her, but she screamed and cried and continued to beat her head against the padding. Once she realized the padding was secure, she began to punch at Mike, but he took it and continued to talk to her, no more fazed than if a feather had drifted into him. Then she found the part of the bed that had not been padded. She leapt for it head first, but Mike’s hand was already there, waiting to catch her forehead. I handed him a pillow, and he caught her head with it each time she lunged. Over and over with her barbaric yell, he never flinched. After roughly ten minutes, she left her head on the pillow. Her eyes filled with water that trickled down her nose and cheeks. He continued to cradle her head until the sniffles had passed, and she had regained herself.
Everything after that moment was surprisingly easy. Child Life came in with crafts tailored to her preference and ability. Favorite Disney and Pixar cartoons ran back to back. There were sticker crafts and coloring pages and puzzles and selfies with Larry, until she finally drifted to sleep.
The sitter came in and watched over Savannah so I could sleep. I figured I wouldn’t be able to sleep, especially with a stranger sitting in the room. But maybe that’s why it was so easy. I honestly couldn’t stay awake. It may have been the strenuous drive there. It may have been the stress of the day. It may have been the knowledge that I was off duty. If Savannah woke screaming or laughing at three in the morning, there was someone to take care of it. I may have easily slept just because I could.
Of course Savannah decided to sleep an unusually typical eight hours. She woke sweetly and giggly. There were a few tears when she realized the leads were still on, but they were quickly alleviated with cuddles. We ordered muffins for breakfast (yes St. Mary’s room service even has gluten-free muffins!) and played educational matching games. The moment Savannah became anxious to leave, the nurse answered her request for a red Popsicle, and the morning continued smoothly. Nurses with Popsicles are awesome.
Savannah had just started her red Popsicle when the doctors arrived. Both EEG doctors came in for the results. They were thorough and addressed every concern, yet it didn’t take them long to deliver the news: The EEG was normal. There were no seizures haunting her dreams, and the episode had nothing to do with brain activity. Her EKG was also normal. The irregularity was confirmed as a reaction to the sedation.
Savannah looked good.
I could feel the huge sigh of relieve escape, but despair quickly filled the space. It was another non-answer.
Our Thursday appointment with Dr. R had been moved up to that afternoon. We were released by 10:00am with instructions to return at 1:00pm to meet with the great medical detective and discover which path was next.
My daughter is so brave.
We entered the Mayo Clinic’s St. Mary’s hospital early Monday morning. We rode the shuttle from the hotel with a suitcase, a purse of toys, an iPad and a giant stuffed cucumber. We were admitted and taken back, past the oil-painted nuns,up the east elevators and to the prepping room in Joseph. She was anxious and edgy, but we made it through the waiting. She did try to escape a few times, but we made it.
She has had two other MRI’s, both with sedation, but I doubt she remembers them or if she does, I doubt she correlated those experiences with this one. I wonder what she thought as we forced her to change clothes and refused her her red shoes with polka dots. I made promises to stay with her until she was asleep and to be there when she wakes, but how comforting does she find that? I told her they were going to help her take a nap with medicine that would give her wonderful dreams like Alice in Wonderland with smoking caterpillars and vanishing cats, but she only anxiously hummed as she was wheeled down the chilled labyrinth corridors. Not having eaten, she begged me for dum dums and red apples, and I promised her all of those as soon as she woke from her nap, never knowing if there were red apples at hospital.
St. Mary’s was incredibly accommodating, allowing me back during sedation. They cooed over her iPad case and polka dotted shoes (which they decided to let her wear). She resisted the mask but once on, quickly breathed her way into a deep sleep.
We were told to expect to wait three to four hours, but after getting a pager and eating lunch and moving rooms, after two pages to the desk for phone calls from nurses and finding the monitor to watch her progress and borrowing a joke from the jar with her brother, it took no time at all.
She was restless but mostly drowsy. The sedation hung heavy around her, clinging to her flesh. Moments after I told her I was there, she surcommbed to the drugs and drifted back into the fog. Her head was bandaged, an attempt to protect the EEG leads. I knew they would be there but wasn’t prepared for how terribly tragic it would actually look. Her entire head was bandaged, her lips pale and trembling, her skin frigid to touch. On occasion, one eye would part and aimlessly roam the room before shutting again, only to let the other eye repeat the action a few minutes later.
She continued to kick the heated blankets off, but her body trembled mercilessly. “Her temperature was down to 35 (95 Fahrenheit) when they brought her out, so we’re trying to keep the blankets on her,” a nurse informed me.
Not only had her temperature dropped unexpectedly low, but so had her heart rate. With all of her sedations, there has never been a complication. I remained perfectly calm, as I held her hand and spoke with the nurses, but my heart thudded against my sternum. A cardiologist was called in. He had already come by a few times to check on her, and continued to monitor her by phone. One thing I have learned about the Mayo, there is never time for a patient to want. Phone calls and texts are made as soon as a need arrives, expected or not. Even though her heart rate was increasing (it was up to 50 by the time I arrived), the beat was irregular. By the time the decision was made for an EKG, Savannah was awake and irritated. She tugged at her finger monitor, grasped at her I.V. and clawed at her bandaged head, fighting to sit up with an animalistic whine.
It was a nursing student from Indiana, interning at Mayo, who had the brilliant idea to fetch an iPad. I wish I was better with names. I wish I could thank her properly. I wish I could give her the credit she’s due. I can, however, be thankful that Savannah’s MRI occurred during her ten weeks with Mayo.
Drowsily, Savannah pushed the nursing student out of the way and began to rummage through the apps. She fussed and hummed and distractedly swatted at the EKG tech, like a bothersome bug, but she sat through the EKG focused on an app, except for the occasional disgruntled look.
With her finger monitor removed, a team of nurses and the iPad still on her lap, we headed up the elevators, back through the labyrinth, down to Francis and our new room for the next twenty-four to forty-eight hours. She had done it. Savannah had made it through the MRI, not fully understanding, at least I don’t believe she fully understood, it was just the beginning.
Another year. Another new joy. Many new joys. Easily overshadowed by the challenges, but there all the same. New joys and old joys slipping in unexpected, hiding in the moments, waiting to shine.
Another year. Another Joy Prom.
Weeks before the event, I received a phone call to see if Savannah would like to try on a donated dress. I could only laugh. The previous year Savannah had a “fancy” dress. Bright pink and puffy and crinkly. She giggled and squealed and wore it for days. Until the day of Joy Prom. That day it was vehemently thrown to the floor and replaced many times over until a common cotton house dress took its place to the formal affair.
Fashion is Savannah’s thing. She puts things together I would never consider and wears them better than any model. Winter boots and mini skirts. Glitter and plaid. Sparkles and joy.
Sure. We could try some donated dresses, but I had no expectation of her wearing one. Little did I know there was a dress waiting for her to find it. Waiting only for her. A soft pink dress, with golden sequins and a brown bow. A dress that would look amazing with knee-high, thick-heeled, clunky black boots.
And it did.
Like every year before, the night began with the magical red carpet entrance. Savannah entered, escorted by her Dad and Grandaddy. The flashes popped. The crowd cheered. The princess smiled. She buried her head in her arms, closed her eyes, and began to shine.
Savannah shined in the horse drawn carriage, shined as her nails were painted in sparkles, shined in the flashes of the photo booth. The sequins of her gown shimmered and glowed, as her boots carried her through the crowds. Her inner princess shining through. One high school boy, a personal crush of hers from the summer, took a double-take, turning and watching her walk by. True to tradition, his mouth fell open a bit. The sequins and the boots and paparazzi atmosphere had transformed her from disabled to unattainable.
Then came the new challenge: the Carnival Games. Savannah approached the carnival area hesitantly. Her skeptical eye and nervous pace answering each plea and coax to convince her to enter. Until finally, with trepidation looming, she did.
The joy she found surprised us all.
She was first greeted by an orange balloon poodle, made just for her, the girl terrified of dogs. And she loved it. She loved the horrid bright color that clashed with her dress and the smooth rubbery feel between her fingers. Most of all, she loved the way he looked as he tumbled from the sky each time she helped him become airborne with a squeal. Savannah carried him with her to the corn hole games (which she surprisingly won!) and to walk the cake walk (which she thought was great!) and to the parachute play (which she insisted he ride on!). The orange balloon poodle never left her. Weeks later, he is still sitting next to her favourite chair, half-deflated, waiting for her return from school.
The night ended in style with Savannah’s first limo ride, around the church parking lot and to our car. Night was falling, the church was emptying, and yet Savannah could have kept partying. She had stayed the entire Prom.
Another first. Another challenge overcome. Another joy.
Each year Joy Prom brings Savannah something new. New challenges and new joys. New friends and old mingled together, becoming inseparable, loving her stronger. It gives her the opportunity to dress up and be noticeably gorgeous instead of noticeably disabled. It gives her memories that can sparkle through her dreams for years to come. It gives her a chance to shine beyond her limitations.
I’m not one to watch daytime talk shows, but then Katie Couric had an episode on mental illness. I knew I had to watch. Usually, when a talk show addresses a disability (Autism and ADHD are popular subjects) it’s to draw in an audience, make a statement and, to be honest, rarely is accurate. So, holding my breath and with great skepticism, I watched Katie.
I can only say thank you.
Okay, I can say more. Living with a child with mental illness, the sometimes violent, aggressive and too often self-injurious kind, I can say how much I appreciate the bravery of the parents on national television, the realism of the professionals and the honest decision of Katie Couric to shine more light on a subject no one wants to face. The show exposed the horrid and ugly truth of living with mental illness and alternative reality of everyday life.
Everything the parents, Jeff and Sarah Blalock, mentioned resonated within me. They could’ve been talking about my life. “Watching your son change right in front of you”, “he’s a good boy, but he can go off just like that. We don’t know where it comes from”, “it could happen in the grocery store or over dinner.” All are statements that describe life with Savannah, but the one who that hit me the hardest was, “There are moments where all you can do is cry and pray tomorrow will be a better day.” I have lived that sentence countless times. Every mother I know with a special needs child, whether mental illness or physical defects or developmental delays, has lived that moment over and over and will continue to. It’s a moment that ebbs and flows, not like a gentle tide but instead a massive tidal wave, drowning you in sorrow and desperation until somehow you can breathe again.
“We live a dangerous world,” Sarah says, and its true. Living it everyday, I easily forget this is not the norm. Most families do not worry about leaving two children alone in a room together to play. Most families don’t regularly patch holes in their walls or keep pillows in every room for easy access in case a self-injurious head flies in the floor, the chair, the wall. When was the last time my neighbor had to restrain their child just to keep them safe? I have an eight year old son who still gets up in the middle of the night to come sleep with me. I’m sure he is too old, but how can I say no? This is a child that has been woken up by being hit or shoved or to the beastic screams and thuds of a neighboring room. How can I not let him sleep somewhere he feels safe?
Jeff and Sarah talk about the effects mental illness has had on their neuro-typical son. It’s tragic that the person usually most effected by a child’s disability is the one most often overlooked. I tell people, it’s not a special needs kid, its a special needs family.
But that’s another blog for another day.
Jeff and Sarah both stress how deeply they love their child. I’m certain that is the hardest part. You cradle a colicy baby full of love, knowing it will pass and hoping for future triumphs and dreaming of years of fun and laughter. Somewhere along the way the fun and laughter turns into coping and surviving. I have replaced couches and repaired walls. Savannah has given me bites and punches and kicks and one concussion. But she is still the baby I held. We still have fun. We paint our toenails and work puzzles and giggle at cute boys. But when she sleeps, most often after one of her bad days, when she lays sleeping after the banshee screams and self-abuse, that’s when I see the sixteen month old girl who loved to dance, the two year old with a contagious laugh, the three year old that played drums at three in the morning.
It’s the love that makes it so hard, and I think that’s something Katie Couric’s show exposed.
If you would like to take 15min to watch Katie’s recent show on mental illness, it can be viewed for no cost at the links below. I highly recommend letting it expand not only your knowledge but your compassion.
Jeff & Sarah Blalock: http://katiecouric.com/videos/parents-of-a-child-with-mental-illness-share-their-story/
Professionals Dr. Harold Koplewicz & Muriel Jones:
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.