Showing posts with label Conductive Education. Show all posts
Showing posts with label Conductive Education. Show all posts

Saturday, September 21, 2013

Documentary About Conductive Education In Tuscon, Arizona With Viktoria Szolnoki

Wednesday, June 12, 2013

My Beautiful Hungarian

This photo was a life changing event for India, Marion and myself.

I had just separated from my former wife. The impact of what had happened to India was becoming clear and India was failing at an alarming rate.

The recession, among other things, had wiped me out financially. Until the year of this photo, I had paid out of pocket up to $30,000.00 per month for India’s interventions; I have a high school education only. I was now cash poor, had no substantial training to help India. It was my former wife that was trained extensively and supposed to have been responsible for using the daily interventions with India in the event we faced financial hardship; this did not happen. It was my job to do all I could to come up with the money to cover the professionals in San Diego, San Francisco, Tucson, Albuquerque, El Paso, Pontiac Michigan, Ontario Canada, New Jersey, Boston and Hungary.

So after I left my former wife and leading up to this photo, I found myself in a position of having to protect my children and in particular India whose little body was deteriorating as a result of her mother’s brutal neglect. To say I was stunned and confused would be the understatement of my life.

My ex-wife and I had previously been hiring specialists out of Hungary who are trained in something called “Conductive Education”. Of the million dollars plus that was spent on India, nothing came close to the results of “Conductive Education” which cost a fraction of the other interventions that showed little to no results other than decimating our bank accounts. We hired and flew in at least a dozen of these amazing “Conductive Educators” from Eastern Europe to work with India and other children. But one stood out in ways I can’t articulate.

This person was Viktoria Szolnoki. She and India quickly became best friends. My former wife insisted on Vikki being the only "Conductive Educator" to work with India and we flew her from Europe many times to help our child. Vikki, until India’s mothers’ actions, inactions, blocking of interventions and change of philosophy, took my child to the point of standing, walking, feeding herself and doing things most professionals said were impossible. Vikki was amazing and in very high demand. We booked her as often as possible in-between her sessions in England, Canada, Ireland, Hungary and other U.S. States.

So not long before this photo, India was in a desperate state and her future looking very bad. I tracked Viktoria down in a town called Fareham, England, just outside Portsmouth and about 2 hours from London. I updated her on the situation and she agreed to try to train me via MSN video as best she could with the basics. But the damage to India was too much and the video sessions couldn't give my child what she needed to just relieve the pain.

I realized something drastic had t be done. I swallowed my pride, called Viktoria, told her I was broke, I couldn't afford to pay her, I could however arrange payments and would borrow the money to cover her air ticket. I apologized as I asked her if she would be willing to come for a short time during the Christmas holiday which was only weeks away and help India; we were desperate. Victoria’s response was nice as she said she'd call me back. I took this to mean “no” and as we hung up, found myself slumped on the floor sobbing uncontrollably at the realization of our situation.

I was awoken an hour later from the very same spot I'd called Viktoria. I'd fallen asleep on the floor from exhaustion, the phone still in my hand. Viktoria called me back from England and her response brings tears to my eyes to this day.

As Viktoria told me that she’d be arriving several days later, I found myself doing all I could to not break down again while I was on the phone with her; this time with pure and profoundly deep relief. Viktoria had purchased a ticket from her own funds. I didn’t know until later that it cost her $5,000.00 US Dollars coach because of last minute holiday booking. Viktoria told me not to worry about paying her and that she’d stay for a month.

This is the photo of literally the minute my children came into the house and realized Vikki had arrived. This “love” session went on for over 30 minutes. The relief and excitement was like nothing I’ve ever experienced in my life. India, with her one good arm, held onto Vikki so tight, that she left dark bruising on Vikki’s skin. India’s exact words when she saw Vikki, after doing a double take, looking at me for confirmation that what she was seeing was in fact real, was “Dikki – oooohhhhhh Dikki” (Verbal - Vikki oh Vikki", with the most amazing sigh of relief as she began to sob, tears flowing down India’s cheeks as she giggled with excitement.

Vikki has been put through absolute hell from every direction and in ways that I can’t bring myself to write about. This includes horrific actions from my own family, ex-wife and friends that have left us in a constant state of fear and disbelief; all from the moment Vikki arrived to help my child.

Vikki is still here and still enduring the unimaginable from those very same people and more. Yet every single day, she puts her wings over all the children, myself included, to protect us from the incomprehensible that we have yet to understand. She does this for no other reason than she loves us.

Vikki doesn’t have to be here yet here she remains. And the beauty of this incredible woman isn't limited to her. Vikki’s family makes regular trips across the world to help, at their expense while my own family doesn't so much as call after a single and horrifying seizure where India is rushed to the hospital in an ambulance while her lips turn blue from lack of oxygen. Not to mention a “how is India doing” email or call after one of India’s many surgeries.

So I knew the minute India said “Dikki – oooohhhhhh Dikki” that I’d been blessed with something some call an Angel, or Miracle but I now prefer to call my wife and mother of all my children.

In closing, if you’re wondering why Marion is left out of this story, it’s intentional. Marion’s story of this same timeframe deserves equal attention and will take several chapters if not a book. I put ink to paper as often as I can but these are very hard events to write about.

This is my beautiful wife Viktoria

This is our beautiful son Nikki

This is our beautiful daughter Abbie

This is our beautiful daughter India

This is our beautiful daughter Marion

This is a very upset Vikki when her new husband farts in the car as he is driving and locks the windows shut.

Monday, September 5, 2011

Our Day In Hell Part 5 - Bonk

It seemed like every day we faced new challenges we never could have expected, both big and small.  One that really stuck with me was when we decided to take India on a walk.  We put her in her stroller and set off towards the local park.  Just after we headed out, India started whimpering, then crying, then screaming.  To save our lives, we couldn’t figure out what was wrong.  We re-positioned her, held her, tried to feed her, adjusted her straps and finally gave up our walk and went home.  When we arrived back at the house, we undressed India so we could change her diaper and to our horror found a sharp sticker from some sort of weed embedded deep into the skin of her buttock.  Somehow this damn sticker found its way into the stroller and ended up penetrating her delicate skin. 

Although my little girl was old enough to communicate verbally, she couldn’t because of her Cerebral Palsy.  The only thing she could do was cry in the hopes we’d figure out what was wrong.  This was very rough for me because I was unable to understand what she was trying to tell us. It was especially hard because I felt so sorry for the frustration my little girl must have felt at not being able to communicate. 

Veruca and I pushed on, getting up every morning, putting on our shoes, taking that first step and doing the best we could.  Fortunately, after a couple of years my business began to take off.  I started to push Veruca to up the amount of therapy for India.  I truly believed that the more therapy our daughter could participate in the better; and since we didn’t know which therapy was beneficial and which one wasn’t, we just decided to do all of them in unprecedented amounts.  We began to travel around the United States and Canada for services.  I would rely on Veruca to find the services and I’d find a way to pay for them.  Our daughter did begin to progress as a result of the therapies, but I still wish I knew then what I know now. I wish I’d known that simple lifestyle changes with good routines and plenty of activities at home truly had the potential to help India’s progress and have a lasting effect, rather than twenty different types of therapies away from home. I didn’t know this then—I didn’t know how to create a stable home and beneficial routines, or how to encourage India to be independent—I thought I’d get all the answers from therapies. They did help somewhat though: India began to gain muscle tone and to sit with her legs crossed for short periods of time unaided, and she developed some strength.  She started eating better and clearly became happier.

We were ecstatic about these improvements; we thought she was beating the odds in a huge way.  So over the next nine years, we put absolutely everything we could into India’s care and rehabilitation.  *The list is long and reached costs of up to $250,000 per year.  If we had the money, we’d pay cash, otherwise we’d max out our credit cards and use a second mortgage on our home to cover the expenses.  The intensive regiment of interventions and therapies kept India, Veruca, and at times our second daughter on the road for the better part of each year, including almost 12 consecutive months in Canada.

While all of this traveling was taking place, I also had to run my company, which was booming.  I often had to do this from wherever India was, remotely.  I was constantly in an airport, hotel, hospital, restaurant, or intervention facility with my laptop and cell phone, working away.  There was even a time where India was yet again on life support and I was forced to work while sitting by her side, but more about that later.

Almost two years after India was born, we had another little girl, Harriet.  As Harriet grew, she became best friends with India.  Harriett didn’t see anything wrong with her sister; she treated her like any other kid.  This included screwing with her big sister.  Harriett could execute guerrilla warfare on India, attack and run.  Of course India couldn’t pursue Harriett, which made the game all the more fun for India’s little sister.  There was one day that Harriett’s guerrilla warfare came to an end and I’m happy to say that I was fortunate enough to witness it.

Harriett must have been about 4 years old and had gotten her hands on a long tube from a roll of gift-wrapping paper.  She was running in big circles around the living room, whacking India’s head with the tube every time she passed her.  India was furious, yelling profanities in her own way after every whack.  What I didn’t notice at the time was that India was intently watching her sister’s every move, waiting to strike.  The moment finally came during one of her sister’s whacking raids.  India had patiently waited for her sister to become complacent, to get too close.  Harriett came in for another attack on her sister, and as she approached India, raising the long cardboard and preparing to drop the bonker on India’s cranium, India shot out her one good arm, grabbing Harriett’s hair.  Before I knew it, India was yanking her sister’s head back and forth.  Harriett was shrieking at the top of her lungs, India’s eyes were wide open, a smile from ear to ear as she performed her well earned payback.  I’d never seen India look so satisfied ever in her life. She was in control.  Harriett was screaming at an octave high enough to shatter glass, India was laughing at the top of her lungs, the dog was howling, the cats had run for cover, and there I stood, sipping a cup of coffee watching the mayhem in my living room, happy as a father can be.  My daughters were interacting just like other siblings do around the world, for the first time.

India was empowered after the whacking event, and she had much more confidence, not to mention respect from her little sister.  India began to tease Harriett as often as she could.  One of her favorite things to do that just drove her sister crazy was to mimic Harriett when she was talking to her mother.  You see India at the time really couldn’t talk.  She could however open and close her mouth at whatever speed she wanted.  Whenever her sister was talking to her mother and her mother’s back was to India, India would open and close her mouth at the same rate her sister would while speaking.  This would infuriate Harriett, she would turn bright red and yell, “Stop it, India!”  When the girls’ mother would turn around to look at India, India would have stopped mimicking her sister and would give her mother an innocent look.  India couldn’t ever keep the innocent look on her face though, she would curl up and giggle in a beautiful high-pitched laugh from deep inside her; it was heartwarming. 

As India became stronger and gained more control over her body, she learned to maneuver her manual wheelchair by herself.  She would wheel that thing all over the house using her one good arm.  This was a new sense of freedom for India.  The first time that India actually was able to move the wheelchair from one part of the house to another was an evening to remember.  Veruca and I were in the kitchen talking as dinner was being prepared.  We had put India in her wheelchair back in her room.  Until that point, India could only rotate her chair in circles.  Veruca and I were deep in conversation when we heard India yelling “eewww, no Gary no, eewww,” followed by a loud squeaky laugh.  As we spun around to see what was happening, we saw India in her chair, parked just outside the bathroom, watching the dog drink out of the toilet.  India had figured out how to wheel her chair out of her room, down the hall, and position herself in front of the bathroom door so that she could watch the family dog have a refreshing drink of toilet water!  India made a point of telling the story of her dog drinking toilet water as best she could to anybody who’d listen for many months to come.  It made her laugh like a loon each and every time she told her story.

Our Day in Hell Part 4 "Feed Me".

Our exit from the hospital came with a lot of conflicting information.  Some doctors told us that India would be just fine and would have no serious residual issues.  Other doctors told us she might be terribly damaged and might not survive long.  As parents, we gravitated towards the positive prognosis.  We couldn’t imagine the other, brain damage.

Home was different when we arrived.  Actually, home wasn’t different, we were different. We’d all been brutally traumatized, and in India’s case, physically. We settled in as best we could but it was hard.  Despite the love and help from family and friends, we couldn’t really get our bearings and  it quickly became clear that India had substantial problems.  This was terrible for me to accept.  I’d look for any sign of normalcy but these became fewer and fewer. 

I can remember sitting with India, looking at her little hand that was already retracting into a fist, a symptom of Cerebral Palsy.  Her tiny body was clearly damaged.  There was no muscle tone and she was like a ragdoll.   She cried all the time, constantly.  We were stressed, damaged, terrified of seizures, and couldn’t sleep.  In addition, I had to jump back into my new career and find a way to come up with unimaginable amounts of money for insurance deductibles, non-covered expenses, living expenses, future expenses and God knows what else.  It was an impossible time.  If my memory serves me correctly, we quickly found ourselves $130,000 in the hole and I was bringing in a meager $19,000 per year.

Every step of every day was difficult.  India would choke, she’d scream, she fell further and further behind in every imaginable way.  She’d often become ill, get dehydrated and have to be hospitalized.  Our lives became unrecognizable.

As new issues with India unfolded, we did everything we could to counter them.  We began to research and learn about every possible intervention that might make so much as the smallest improvement in our child.  In all fairness, I’m giving myself a bit too much credit at this point.  During India’s first year of life, I was spending the majority of my time trying to earn enough money to cover the bills.  Veruca was incredible; she did everything she could for our baby.  I heavily relied on her to figure out what the hell we needed to do.

We were literally bombarded with ideas, therapies, medicines, equipment, and on and on and on.  The problem was that we had no real idea what was worthwhile and what was useless. We relied heavily on “professionals” for guidance but if I only knew then what I know now. 

One of the “professionals” who was influential to us at the time was a young physical therapist.  He seemed knowledgeable and level headed.  What I didn’t know was that he practiced an outdated version of physical therapy.  According to his version it wasn’t recommended to allow children to make certain movements unless they had reached the developmental milestone that normal children reach prior to making that movement.  Thus, a child would not be allowed to stand up unless they mastered independent sitting and so on.  I now understand how harmful and destructive this approach is, but back then I didn’t know any better.  This physical therapist’s influence on us, especially on Veruca, was horribly damaging to India.  The following paragraph highlights just one event that happened as a result of this misinformed professional disgrace. 

I was outside with India one day.  As I was holding her, she was pumping her legs as if she were walking.  I put India down on the ground in the standing position, supporting her arms.  India began to take one step after another.  It was amazing.  She walked the entire width of our yard.  I called to Veruca to tell her what was happening. My heart was pumping so hard I could feel each beat in my temples.  Veruca came outside, frowned, and told me to not allow India to walk because she wasn’t able to sit unaided yet.  I was shocked and confused.  Here was our little disabled girl walking!  India was doing what I knew was a good thing.  There could be nothing bad about this!  I argued with Veruca, I told her that it was common sense that we should allow India’s natural instincts to take their course right now!  Veruca insisted that she was correct and that I didn’t know what I was talking about.  Veruca dismissed all of my pleas for continuing to support India’s walking.  Every bone in my body told me to continue, but Veruca was the master of belittling others’ opinions and knowledge and did her utmost to make everyone wrong at all times.  She had opinions about everything one can imagine and she continuously forced her opinion on others.  Unfortunately, I was new in this marriage, didn’t know Veruca very well, and had no concept how to enforce a boundary, much less stand up to an aggressive spouse.  I gave in, I stopped helping India walk. I will regret this for the rest of my life.  The damage that was caused that day by stopping our daughter from walking can’t possibly be calculated. 
Over a year later, Veruca admitted that her opinion about India’s first steps came from the young physical therapist.  She acknowledged that this was a terrible thing to have said.  However, the time that had passed was just too long for India and when I put her to stand again, she wasn’t taking steps any more. 

I kept the soiled socks that India wore that day for years.  I kept them even though it hurt me to look at them.  She didn’t walk again for many years and when she did, it was never again like the first steps she had taken.  Her body had been too ravaged by that point.

We didn’t dare let India leave our sight.  We were terrified of her seizing or choking while in someone else’s care, so we were constantly monitoring her.  But after much persuading by concerned family and friends, we finally agreed to get some help.

Because of India’s disability and our low income, Veruca and I qualified for state sponsored “respite care.”  This meant that we could have somebody from a state qualified agency,trained in caretaking and emergency medical procedures, take care of India for little to nothing for about 20 hours a month. 

When our first respite date came, we were beyond nervous.  The thought of leaving India alone with somebody else was overwhelming.  Veruca and I decided that there was no way we could be far away from our daughter, at least not on this first respite visit.  So we decided to just walk around the block, which was as far as we could be from India.  The respite caretaker arrived, she was a very large rosy-cheeked lady who seemed nice enough and as if she knew what she was doing. We talked with her for about 30 minutes explaining everything she needed to know for the care of our daughter.  Then Veruca handed the caretaker a baby sling to carry India around the house.  Veruca asked her if she knew how to use it, the respite caretaker said yes, and she ushered us out the door.

We walked around the block several times, holding hands.  It was nice to get out.  The sun was setting, the temperature was nice and cool, and this alone time was just what we needed.  It was the first time in awhile that we’d been outside, just the two of us, and I felt almost human.  After about 30 minutes, we decided we’d been gone long enough.  I was feeling a sense of rejuvenation, like the dark cloud had been lifted and I could handle another day of this new life.  As we walked in our front door  that nice feeling evaporated instantaneously.

The first sign that something was wrong was that the respite caretaker was very red and her face was wet with sweat.  I stood there staring at her trying to figure out what the hell was going on.  Then I saw my daughter, or rather, I saw my daughter’s foot.  It was sticking up from the top of the sling.  The respite care provider had put my daughter into the sling upside down.  What I hadn’t realized was that I had been so shocked with what I was seeing that my hearing was literally muted; I was standing there dumbfounded.  As the volume of my surroundings elevated, the next shock hit me; I could hear my daughter’s muffled screams from the bottom of the sling. 

Veruca ran over and pulled India out of the sling and away from the respite caretaker.  India was discolored and sweaty from a lack of oxygen and the heat.  The caretaker was clearly flustered, became defensive, and blamed everything on the device rather than her lack of common sense.

Without saying a word to each other, Veruca and I both knew that we wanted this human train wreck out of our home and lives as quickly as possible.  Veruca rushed into our bedroom to get the checkbook, and came right back out with the check filled out plus a generous tip included.  I felt a massive sense of relief when my wife handed the woman her check so she could leave.  But to my surprise, she didn’t get up off the couch. She leaned back, put one leg over the other, and started watching TV!  Veruca and I stood there flabbergasted, almost as if we had been transported into an episode of The Twilight Zone.  Veruca finally got up the nerve to say, “Well, thanks for the help, I think you better go now.”  The respite caretaker looked at Veruca with astonishment and said, “You’re supposed to feed me. I’m hungry so you need to feed me before I go, it’s our agreement.”

You could have heard a pin drop in my living room. The caretaker sat there staring at Veruca, Veruca stood there trying to absorb what this woman just told her, and I found myself wanting to crawl under the coffee table, insert my thumb into my mouth, and curl up in the fetal position.

So there the three of us sat, Veruca on a hard wooden chair, me perched on another, while the caretaker lounged on our soft couch, slowly eating a hastily-put-together meal and watching TV. She was oblivious to our presence.  As I watched this oversized woman, all I could think about was Mr. Creosote from Monty Python’s movie “Meaning of Life”.  In this skit, Mr. Creosote eats so much he projectile vomits into a bucket and finally explodes.  As I sat there waiting for this lady to explode, I realized that it would be a very long time before either my wife or I could trust anybody again to take care of our little angel. This experience screwed any chance of us having alone time in the near future and that’s exactly what happened.

Saturday, September 3, 2011

Holding Out Hope

My daughter has beaten all the odds throughout her 13 years on this planet.  She's a true champ, one of my best friends and my hero.     

Up until late 2007, early 2008, she progressed so much that she could walk, dance, stand and jump with just a little assistance.  This was due to intense interventions and therapy all throughout the United States and Canada.  In 2008 though, everything went wrong.  

India spiraled downhill before my eyes and the worst of it wasn't witnessing India's bitter disappointment as she tried in vein to make her body work.  The worst of it was the pain that ravaged her.

As a father, this is horrific to witness and the helplessness can't be properly described. Sometimes late at night, the pain gets so bad that India asks me to hold her on my chest as we are lying down.  She curls up in the fetal position while I rub her back and legs to relax her little body and hope to alleviate the pain. 

We’ve gone through a series of doctors, all of whom have good intentions.  But despite the best of intentions, some of the doctors have been very wrong.  In fact, several of the suggestions from Physicians could have caused India a lifetime of intense chronic pain and infection. 

Fortunately, I’ve been at this for 13 years now and am wise enough to know to question everything.  We did some research and found a world-renowned doctor in Summit, New Jersey who specializes in working with children with disabilities.

We recently made the trip from our home in New Mexico to New Jersey.  Our visit with this doctor was beyond belief.  For the first time in a very long time, I felt overwhelming hope and happiness. 

This new doctor was the first to not want to do intensely invasive surgery.  He explained in detail what the bleak outcomes would be if we allowed India to go under the knife and saw of the surgeons.  Keep in mind, the previous surgeons wanted to saw off the top of my daughter’s femurs and pack the leftover void with some sort of substance in the hope to keep the remaining femur from pushing its way through the muscle and skin; leaving bone exposed.  This new doctor talked about the infections and pain that would be caused from the plethora of screws and hardware that would have to be attached to India's bones. 

So he we sit, excitedly preparing and patiently waiting for September 27th, the day of the new doctors outpatient procedures.  My little girl will have what’s called an Alcohol/Ethanol Chemoneurolysis to take away her chronic pain in her hips. This is procedure where the nerves that are causing my daughters pain will be treated with a solution that deadens them.  She will then have a Soft Tissue Lengthening to loosen up her hips/legs.  And finally, my baby-girl will receive a Transtympanic Neurectomy and Chorda Tympanotomy.  This procedure eliminates her excessive drooling.  India is absolutely beautiful and currently has 2 boyfriends.  I can clearly see her embarrassment when she drools in public so this procedure should really help her self esteem.

I’m feeling like I can see the light at the end of the tunnel right now.  I’ll let everybody know how it goes at the end of this month.

On a side note, I have to admit that we are incredibly fortunate to have good insurance.  Just the doctors fee for the Transtymapanic Neurectomy is $9,000.00, not including hospital fee's.  The entire bill will exceed $40,000.00.  I feel so sorry for those parents who don't have insurance.

The following are 3 of the 4 stories of what happened to my daughter that left her with Cerebral Palsy:

India Walking On The Beach 2007

India Standing 2008

India Skiing 2009

Saturday, August 27, 2011

60 Minutes Story About What My Daughter Does Daily

My beautiful wife Vikki does what this 2004 CBS 60 Minutes Special talks about; Conductive Education.  Vikki has traveled all over the world helping children with Cerebral Palsy.