Sunday, October 30, 2011

Chapter 10: - Slippery Slope



During India’s 11th year, she began to show signs of chronic hip pain.  We could visibly see that both of India’s hips were dislocated.  All of the activities that she’d loved were becoming more and more difficult to do.  Her condition became progressively worse over the next twenty-four months.

The fact that India was going downhill was in sharp contrast with the fact that up until the year 2008 I did nothing else but pay exorbitant amounts of money for more therapies than I could count.  Veruca regularly took India to Detroit for intensive physical therapy for weeks on end at a time, several times a year.  We spent a year in Canada in a conductive education camp and we employed several of these teachers privately to work with India at home.  What was missing?  Why did India develop complications of inactivity?

I will never forgive myself that I didn’t see through Veruca’s conduct until it was too late and India’s chronic pain couldn’t be avoided any more.  During our marriage I was so blindly trusting Veruca, I was so sure that she was doing the best possible research into therapies, interventions and what was best for India, that I couldn’t see how abnormal Veruca’s approach to India had become.  Back then I didn’t know that nobody takes their child to $2500 a week intensive therapy programs for 4 months out of a year, only we did that.  Instead, parents are supposed to learn the techniques during the 2-3 week therapy camp and once video, written and verbal instructions given, the average, regular parent would incorporate the stretches and exercises into their child’s routine every day.  For Veruca, who was a stay at home mom with a maid and respite care at hand, this would have been a breeze.  But Veruca always found an explanation why she was “relaxing” in front of the TV and the computer the whole day, every day instead of making sure India got off the couch and did something just for a short while. What I didn’t realize until it was too late was that Veruca completely passed over the job of raising our daughter to therapists and teachers, and while she would occasionally change India’s diaper—later not even that—she explained to herself that a parent is not supposed to do anything with or spend any time with their disabled child, because that’s what the “experts” are for.  Once back from the therapy camp, India did absolutely nothing for a couple of months until the next therapy camp, and once we couldn’t afford the therapy camps, India did absolutely nothing any more whatsoever.  With a mother like hers, India’s only chance to avoid the pain of dislocated hips would have been to permanently move into a therapy camp.

There is, of course, no reason for a disabled child to move into a therapy camp for good.  Mothers other than Veruca understand their role as a parent and make sure their child has a childhood, a fun but active childhood with or without disability.  I have to explain here that India did have another lifeline, and this other lifeline wasn’t constant therapy, wasn’t even frequent therapy: the conductive education teachers we employed gave plenty of reasonable and outright fantastic advice about how to raise India for her to become an active person who’s willing to try and help herself.  For example, India didn’t have to be forced to practice walking at home like she was in the therapy camps.  Instead, the teachers taught Veruca how to get India active throughout her day using really simple and common sense measures:  for India to get out of the wheelchair and walk to the door when the school bus drops her off; walk with India in the garden and look at the bunnies, etc., etc.  As the conductive education teachers explain, this is not therapy, this is just life.  There was never a need for the excessive therapy camps, India could have just lived her life as one of those disabled children who uses a walker at home to get from point A to point B, and the regular, daily activity—standing, walking, weight bearing—could have contributed to prevent the terrible deformity India developed in her hips. 

India was going downhill simply because she wasn’t upright enough throughout her life.  No therapy in the world is enough for a disabled to be upright enough, and being up and doing things doesn’t have to be therapy.  The great effort and expense I put into bring in the teachers to explain this to Veruca went down the drain because according to Veruca, this was all bullshit.

Well of course it was.  Assisting India to walk to the house from the bus—an approximately 50 foot distance—would have taken at least half an hour of Veruca’s time every day to spend with her daughter.  There was no way for Veruca to spend all that time, or God forbid more than that, away from the TV or her computer games.  As long as India’s “care” consisted of Veruca to get out of town, live in luxury hotels, drop India off at therapy and have someone else do the job, she supported the idea of India being active.  Once the activity meant that Veruca was supposed to assist India at home in any way, she deemed it all bullshit.  It was completely my fault that I didn’t see this, and when I finally did, in the year 2008, we were in the middle of the recession and India’s hips were already grotesquely destroyed for good.

I moved in with my second wife, Viktoria in the summer of 2009.  Viktoria and I did everything we could to prevent the problem from accelerating, but once India slid down the slippery slope, there was no way to climb back.  It added to the problem that I only had 50% of custody time week on week off, so when India was in her mother’s custody, she remained in her chair or on the couch as usual for the entire week.

India started middle school in August 2010 and this meant that we put her into her wheelchair at 8 in the morning and took her out of there at 4 in the afternoon.  She did spend a little time on the floor on a mattress every day and she did have some minimal amount of physical therapy every week at school, but that didn’t come close to India’s need of being up and active, using her body and weight-bearing on a daily basis.  A few months into school she started complaining of hip pain, and by December she was crying the whole afternoon, every day at school because she was in so much pain.  She was begging staff to take her out of her wheelchair and she wanted her aide to hold her in her lap, but such measures were against school “policies” and there were never two adults available to lift India out of her chair. 

India's pain rapidly became unbearable; every movement came with a grimace and moan. This was crushing for me as her father, to watch my child in so much pain and not be able to take it away. She’d wince with every move, often bringing a scream to her mouth or tears to her eyes.  I’d regularly have to hold India in my lap, while I tried to sooth her.  She’d sit there holding onto me with her one good hand saying “owie daddy – help me”. 

We visited India’s  local Pediatric Orthopedic Surgeon.  She had multiple x-rays taken and the results were chilling.  The tops of India’s femurs had grown almost perfectly straight versus the natural angle placing the ball into the hip socket.  There were no hip sockets and the balls of femurs were worn down to virtually nothing; just jagged edges. 

India’s Orthopedic Surgeon prescribed pain killers, and told us that our only real option was to open up each of India's femurs, saw of the tops and stuff the void left behind where the bone was removed with soft tissue  to try and prevent the remaining bone from piercing through her muscle and skin.  This invasive procedure would have taken up to a year for India to recover and there was no guarantee that the pain would be gone. . In addition, my little girl was so fragile; I didn’t think she’d have good odds of surviving this surgery.

My wife Viktoria and I truly believed that there must be something else, another option; we decided to ask for a second opinion.  Taking India to a different doctor in the area would not have made too much sense, as India’s condition is relatively rare in our not very densely populated state.  I was sure our area is not where the most highly educated and experienced doctors are hiding out.  Viktoria and I did a massive amount of research to find  the finest physicians out there,  and we came to the conclusion that the greatest experts in pediatric orthopedics were located on the east coast of the United States.

Once I found the exact physician whose credentials, published material and reputation on parents’ forums all suggested that he must be our guy, I immediately called to set up an appointment and arranged for him to meet India.  India and I flew across the country to meet with this cutting edge physician and his team and get the long yearned second opinion.  . The team  suggested 2 different  procedures that were relatively non-invasive and outpatient.  One of the procedures was lengthening India’s tendons at several areas in her legs to stop her stiff muscles from constantly make her bend curl up; the other procedure was to kill one the nerve that was signaling the horrible pain to her brain using ethanol.  These altogether sounded nothing like sawing away bones, so I booked  India’s surgeries on the spot for the following month.









































Sunday, September 11, 2011

Our Day In Hell Part 8 - Neglect


We were home again after another viciously traumatic seizure, walking on eggshells and praying that this episode would be the last.  We watched India constantly, looking for any sign of damage.  After several weeks, we began to relax, realizing that she was no worse for the wear and just needed time to recoup her strength and stamina.

We knew that we had to make India stronger, healthier and as far away from seizures and illness as possible.  We dove back into our routine of frequent intensive therapies.  My wife would take India out of state for 3-5 week periods up to 5 times a year to participate in intensive physical therapy programs, each costing up to $2,500.00 per week. While they were away, I always made sure my wife and daughter stayed at the best hotels possible and lacked for nothing.  During this period, Dementor was duped into believing that India’s brain would somehow ‘recover’ if she slept under a powerful magnet overnight at a special facility in Michigan.  This ‘treatment’ cost an additional $7,500.00 a week.  I was minting money at the time and I was desperate to help India so I didn’t question a thing.

When Dementor wasn’t away with India, we were commissioning Conductive Education teachers from Budapest, Hungary to come stay at our home for a month at a time to work with India.  These teachers were incredible; they seemed to achieve things with India I never thought would be possible.  I’d walk in one evening and India would be sitting at the table on a chair, feeding herself dinner.  I assumed before that India would never be able to feed herself.  The next evening she’d be walking out of the room stepping, and loudly singing while the teacher was holding her arms, it was amazing.  Unfortunately, I was always working so I didn’t find out how this was all happening.   As it later turned out, this would have been very valuable for me to have learned and understood.  Nevertheless, I had to come up with tens of thousands a month so that I could pay for the therapies, the cost of the Conductive Education teachers and whatever other therapies Dementor came up with (see the list in the previous chapter).

I believed we were providing India with everything she needed and beyond.  We were too afraid to allow any significant gaps in her therapy routine because when we did that in the past, she’d regress at an alarming rate.  I thought that the excessive amount of therapies India was doing was an absolute necessity and that we were doing the best we could.  I took pride in being able to come up with the costs of this odd therapy-lifestyle, which by the year 2008 had reached over a million dollars.

I also felt that I was supporting Dementor as best I could.  During or after an extended period away from home, Dementor would want a break.  So off she’d go to Cabo San Lucas, San Francisco or Las Vegas while I put my work on the backburner so that I could watch one or both of our children.  This was something that I questioned in my own mind, as her time away with India wasn’t necessarily stressful or strenuous, it was for the most part quite the opposite.  But I went along with her wishes.

As will be with life, everything changed in the blink of an eye.  It started with my business.  Major transactions that I’d put together began to disintegrate rapidly.  I watched as my “cash cow” walked off into the sunset.  Meanwhile, there I stood with not only my general business overhead, home budget requirements but also a $10,000.00 to $20,000.00 per month tab for all that India was being provided.  I was terrified.  To be honest, the thought of losing all my material things and the hit that my ego was about to take wasn’t very pleasant.  But what really turned my world upside down was thought of the potential impact on India.

Dementor and I had come up with a backup plan in the event that just this type of situation came to fruition.  Earlier in India’s life, Dementor and I agreed that she would be in charge of all therapies and I’d be in charge of coming up with the money to pay for them.  She would not only make sure that India attended the best facilities and worked with top notch specialists on an ongoing basis but she would learn the how and what to do in the event our cash flow was interrupted for whatever reason and we could no longer afford paid services.  We purchased tens of thousands of dollars’ worth of equipment for our home, much of it the very same that was used in the professional facilities.  Dementor compiled reams of printed and illustrated instructions from the physical therapy camps showing how to do the essential daily stretches and exercises.  She was trained and certified in Yoga for children with disabilities. She attended an “augmentative and alternative communication” conference, which gave her a mountain of knowledge that she could use with our daughter. Dementor spent weeks upon weeks with the Conductive Education teachers who taught her literally everything about what would benefit India.  Dementor went as far as videotaping dozens of hours worth of footage during the therapy and Conductive Education camps to use as visual instructions at a later date.

So here we were, preparing to initiate our backup plan for India’s care as we helplessly watched what was eventually going to be called “The Great Recession” change our lives forever. I made an attempt in vein to swim against the current and save what I could.  I began to work ungodly hours, which kept me away from home for the better part of each day.  It was during this time that things under my roof became unrecognizable, a living nightmare.

India began to have serious chronic pain for the first time and it came on fast.  I would have to get up in the middle of the night on a regular basis to comfort her, usually with a leg massage, then a long snuggle until she fell asleep.  Then I’d have to get up about 6:00 am, bathe, dress and feed India, get her on the bus and get myself to work for another long day.  Dementor rarely helped in the mornings, she was a night owl and liked sleep in.

India’s pain progressively got worse, her arms and legs began to stiffen terribly and now there was a new problem that I had to wrap my head around.  When I’d come home at night, India would be on the couch with the TV on.  When she’d see me, she’d start giggling and crying at the same time, seemingly frantic for my help. Often when I’d arrive, she’d not only be soiled but our couch would be soaked with urine.  To my surprise, when I asked Dementor what was going on, she told me to mind my own business, she was in charge of the home and I was in charge of work.  The day after I’d asked Dementor what was going on, India still was on the couch frantic and soiled.  The only difference now was that Dementor kept several folded towels under her to soak up the urine.

It’s hard for me to describe the fear, panic and helplessness that I was feeling now.   Earlier that year, I was on top of the world, providing my daughter with absolutely everything I possibly could.  Now, I was watching everything fall apart, including my child’s little body.  And to make matters worse, there were so many things happening that I didn’t understand.

Early one morning, well before the sun had come up, India called for me.  She was in pain again and needed my help.  I gave her a massage, we snuggled and she eventually went back to sleep.  Afterwards, I wandered around the house aimlessly.  I eventually ended up in the room where we’d give India most of her therapy.  I sat down at one of the tables to reflect on everything that had been happening, that’s when I noticed it.  The tens of thousands of dollars’ worth of therapy equipment that we’d stockpiled for our child’s use had not been used.  What gave it away was a thick layer of dust covering literally everything.  I sat there in disbelief with what I was seeing, there had to be an explanation.

I began to go through the house, room by room with my eyes wide open for the first time in years.  I found pieces of a “communication book” in the garage that India was supposed to be using.  I realized this was the communication book (a book filled with picture symbols that would’ve allowed India to converse with people) that Dementor started making several years ago; it had never been finished!   We had spent thousands of dollars on the software to assemble this book and had sent Dementor to a conference so that she could understand how best to integrate communication methods into India’s life.  It hit me that Dementor hadn’t bothered to provide our daughter with this means of communication, but why?   She had all the money, knowledge, equipment and time to be able to do so!

Then I remembered India’s computer, it dawned on me that I never actually witnessed her using it.  When I took a close look at the computer, it was the same as with the therapy equipment, completely unused.  This computer had a specialized keyboard and joystick so India could operate it.   This device was meant to help open up the world of communication and education for India.  What the hell was going on?  This is a helpless little girl who relies on our help!

As I looked further, I found more.  There were unopened, factory sealed hip abduction “Swash” devices in a range of sizes; I purchased each for over a thousand dollars and their use was critical.  India was supposed to wear these often to prevent the malformation of her hips.  All of a sudden, it became painfully clear to me why my little girl was in chronic pain. I stood there as the sky began to lighten with the coming sunrise in complete disbelief and shock.

You see, both Dementor and I knew better, we understood the terrible consequences of inaction with India; we’d seen first hand how quickly she’d backslide.  We were painfully aware that when someone has cerebral palsy and doesn’t weight-bear on their legs and keeps their legs crossed all the time, their hip joints never develop properly.  This, over a relatively short period of time can and will cause painful hip dislocation.  This is the horrible side effect of not moving enough.  We knew that India’s hips had already started showing serious signs of dislocation and deformation.  As a matter of fact, to this day I still have the x-rays showing India’s hips beginning to dislocate and clear signs of deformity.  This is exactly why I purchased the equipment, to help prevent my child’s hips from getting worse and her little body experiencing terrible pain.  This is why I sent Dementor and India to the high-cost therapy camps where she would stand and walk for hours on end.  We knew what had to be done and up to this point, I thought that we both had dedicated our lives to this little girl.

Despite our agreement and exhaustive preparation, Dementor never used the equipment I purchased or the extensive training she received.  She did virtually nothing for her own child once the recession reared its ugly head.  I was incredibly blind and na├»ve, I trusted Dementor so much that I didn’t see what was in front of my own eyes, but all was so clear to me now.

Dementor was a stay-at home mom, a kept woman.  She had no other job or responsibilities in her life but to take a good care of our children and to make sure they did well.  I have to mention that we had a maid up to three times a week so Dementor didn’t have to clean, we ate out at least 4 times a week and we had plenty of child care; Dementor wasn’t in danger of having to do too much.

When she’d take India to a therapy in or out of state, it wasn’t a difficult task at all.  She would only have to make sure India arrived on time and was picked up when the sessions were done.  After that it was a plethora of shopping, fine dining and other exciting adventures, I have the receipts to prove it.  Because of Dementors extensive travels with India, we were Platinum Preferred Guests with Westin Hotels, Platinum Card Holders for Marriott Hotels and had built up enough American Express points so that we could fly to most destinations around the world for free.

You see, Dementor had a tendency to pontificate on occasion, well that’s not exactly true, she’d step up to the pulpit pretty much every day.   But up until now, I thought she knew what she was talking about and that she’d do anything for our child.  Now I was realizing that Dementor’s continual orations about her deep and profound knowledge of what our daughter needed were just absolute bullshit.  I’d always know she had chronic verbal diarrhea and I often wanted to put a diaper on her mouth to stop the flow.  But until now, I followed her blindly.  And now I was realizing that my unquestioning and passive support of Dementor had lead to the preventable, dismal state my daughter was in.

Here was a woman, the mother of my children, who put forth to the world that she was the ultimate authority as to what our daughter and other children with disabilities needed.  She’d constantly tell other parents what was best for their children.  She’d always painted the picture to the masses that she was working her fingers to the bone, sacrificing her body and soul for our daughters benefit.  And what I was now grasping was that she was just plain lazy.  So long as it was nice hotels, new cars, unlimited lines of credit, daily shopping and fine dining, she was as happy as a pig in shit.  So long as we could pay for others to do the hard physical and mentally draining work with India, Dementor was super-mom.

But as I found out, the minute our coffers went dry and hired help went away, Dementor retreated to the bedroom where she’d engulf herself into mind numbing activities, leaving Harriett to her own devices and India to sit in her own waste.  Dementor wasn’t super-mom; she wasn’t even a good mom.  As a result of Dementors actions leading to this point and her subsequent actions, I’ve come to the concrete understanding that Dementor is a lost, insecure, mentally ill woman who won’t think twice to hurt her own children if it suits her own agenda.  We’ll talk about this more in the next chapter.

I’ve always looked at the world and the people in it as an endless space with uncountable bubbles.  Within each bubble is a family, group, person or environment.  Enlightened people understand that each bubble is different, some healthy, some not, they can jump from bubble to bubble as they please, living a happy and healthy existence.  Some people forget that there are other, happier, healthier bubbles out there that they can jump into, leaving their toxic bubble behind.  Because I’d been so caught up in the care of India as well as coming from a very damaged background, not understanding boundaries and what the definition of healthy was, I’d not known that my bubble had become the Chernobyl of all bubbles; I was withering away along with my children.

Because of the toxicity of my environment, friends and family kept their distance during my marriage to Dementor.  It happened slowly over a period without me realizing it.  People would bite their tongues and keep their input and opinions to themselves.  But when I did exit bubble Chernobyl, I was overwhelmed with information from those who had kept their tongues in check all those years.

When I found all the dusty and unopened equipment, I already had a good idea of what was, or wasn’t going on.  Then I was given some jaw dropping information from a friend, a former roommate who was staying with us for a few months.  He told me what I already suspected. Dementor had been placing India on the couch early in the morning on no school days and leaving her there all day long, helpless, in front of the television.  She’d do the same to her after school.  Dementor would only come out from her bedroom on occasion to hand her a bottle of water or a hastily put together meal.  When I heard this, I felt like the USS Enterprise of Star Trek when it comes out of warp drive to an abrupt stop.  I sat there, nothing else in my mind, complete moment of clarity.  I now understood why India would be frantic when I’d come home from work to find her in shambles on the couch; she was being neglected.  Then my heart began to pound.  India’s increasing pain that kept both she and I up at night wasn’t from growing pains as her mother told everybody, she was in pain because her mother not only wasn’t doing the necessary stretching and therapies but she was attempting to hide her actions or lack of!

I felt sick to my stomach as my old friend detailed everything he witnessed.  I pulled my knees to my chest and tried to absorb what I was hearing.  My friend went on to tell me that he felt huge remorse for not coming to me sooner but he was afraid of the backlash from Dementor.  I’d always known Dementor was intense but this was one of the first times that I realized that people were actually afraid of her.  So there I sat, listening to my friend who by the way was a reformed career professional bank robber who’d spent over 12 years in prison tell me he was afraid of my soon to be ex-wife.  I was still trying to push away the realization that this woman, who I’d put all my faith and trust in had abused India.  I was trying to wrap my head around the foreign concept that a mother could do this to her own daughter.  I was shaken to the core of my soul and to this day, I still have a hard time with this.

The next revelation I had involved Dementor and India’s younger sister, Harriett.  I’d noticed that if I came home for whatever reason in the late morning or early afternoon, Harriett would always be in her pajamas, just her underwear or sometimes naked, regularly snacking on a dry block of Ramen noodles.  Dementor was always in the other room sleeping, watching TV or playing video games.  You see, two years earlier, we made the decision to home school Harriett.  Because of all the traveling we were doing with India and the bad experience we had with the local public school system, home schooling seemed like a great idea.  Turns out, Harriett, at the age of 8, was left on her own to do as she pleased while I was away from the home.  She had been completely neglected and was left to be raised by the wolves, no parental guidance whatsoever.

As with India, I was given the entire story by somebody who’d spent an extended period with us in our home.  My brother had lived with us for many months and also graphically detailed what he’d witnessed take place with my daughters.  He went further than my bank-robbing roommate in his descriptions on the goings on within my household.  His words hit me like a ton of bricks.  It’s true that I’d rarely seen Harriett doing any schoolwork whatsoever, but now my stomach started sinking as my brother described the absolute anarchy of her life.  From the time Harriett got up until late afternoon, she was left to her own devices.  She’d feed herself dry noodles from the pantry, would rarely eat anything else, she wouldn’t bathe; she’d just entertain herself and do as she pleased.  The short study periods with mom were generally limited to mom coming out of her bedroom and instructing Harriett “do your homework”, but Harriett struggled doing anything because she never got any sort of instruction and guidance.  I can only speculate that when Dementor realized homeschooling was just too hard for her and/or she didn’t feel like doing it, is when she  passed the job off to my office manager or our maid from Mexico.  Occasionally Dementor would even have the professionals who we hired for India at great expense from Hungary do Harriett’s home school work with her.  These professionals told me years later that they wouldn’t know what to do when Dementor instructed Harriett to write 10 sentences about a topic and then she went back to her bedroom; only for the teacher to realize that Harriett didn’t know the alphabet and couldn’t even spell her own name.  One of the teachers ventured to ask Dementor what happens in the state of New Mexico if a home-schooled child doesn’t advance in academics with the required pace; in Europe the authorities put the child back to school but unfortunately this is not the case in our state.  Dementor was free to leave Harriett completely uneducated.

Until this very day, as I write this chapter, I’ve continually been contacted by teachers, administrators, therapists, old employees, family, friends, counselors, doctors, attorneys and on and on and on who all have blood curdling stories about Dementor; I was oblivious to who she was, the damage she caused and how she was perceived.

As you might remember in a previous chapter, Dementor and I were both horrified when a teacher abused India by neglect just a few years before.  Now it had come to light that Dementor was doing the same to both of her OWN CHILDREN.  I did try to talk to Dementor about what she was or was not doing but to no avail.  She dismissed me every time and told me “you don’t know what you’re talking about” or “mind your own fucking business”.  My relationship with Dementor had become progressively worse and worse to the point where it was now a very dark and lonely place.  I couldn’t continue living with her.

In the fall of 2008, I decided to move out and separated from my wife of 12 years.  The decision wasn’t difficult; it was actually a huge relief.  In my mind, I’d move into my own house, clear my head, have the children every other week and spend as much time with them as I could.  I would work on undoing the damage Dementor inflicted upon my children.  What I didn’t count on was the incomprehensible deep seeded destructive anger of Dementor that was to come.




Tuesday, September 6, 2011

Our Day In Hell Part 7 - Life Flight



India had a couple of really good years after my “come to Jesus” talk with the school.  It’s not that she managed to learn much at school either academically or regarding her physical skills, but she was loved, appreciated, and included in everything.  She learned to be a master manipulator; charming everyone with smiles and refining ways to avoid work.  She learned to drive her power chair by herself and she became a total celebrity at school.  In the meantime, we pulled her out of school a couple of times a year to participate in intensive physical therapy (4 hours a day) in Detroit, Michigan. She thrived as a result of the intense physical activity.  Our spirits were high as she made huge strides physically, cognitively, and emotionally.  The rewards of seeing a disabled child, your own disabled child thrive, are huge.  The only thing I can possibly compare it to is the feeling performers describe when they are in front of thousands of cheering fans.  But like in the past, our world came crashing down upon us yet again.

In August of 2004 I was in my office with two co-workers planning some new projects.  I was feeling very refreshed and happy, we’d just returned for a great vacation to San Diego, Disneyland, and Santa Monica.  It was a great getaway, probably one of the best we’d ever had as a family.  Now that we were home, we were settling back into our daily routines. Veruca, India, and Harriett were at the girls’ piano lessons.  They received lessons once a week from a really neat old guy who lived about twenty minutes north of town. Veruca regularly called me during the girls’ piano lessons so that I could hear them play.  As I sat at the planning table in my office, Veruca called.  I assumed she was calling to let me listen to the girls play or tell me about the session.  I was wrong.

I answered the phone but before I could say hello, Veruca said, “India is having a massive seizure, it’s bad, really bad.”  Up to this point India hadn’t had a seizure that we’d known of since she was a baby; we thought we were past this.  Veruca went on to say she was at least twenty minutes away from the hospital, what should she do?  By this point, I’d jumped out of my seat and was running to my vehicle. I told Veruca to go to the hospital as fast as she could, don’t stop for any reason.  I told her to stay on the line with me, don’t hang up.

I arrived at the hospital within ten minutes of receiving the call from my wife.  I raced into the emergency room and got the head nurse up to speed on what was happening, all the while listening to what was taking place in Veruca’ vehicle.  To my horror, just as I finished talking to the head nurse, , my wife’s voice raised several octaves as she screamed, “Oh my God, she’s stopped breathing!”  I could hear India’s little sister in the background saying, “Kake up India, wake up, please sissy!”  It was a horribly cold and helpless feeling as I listened to Veruca crying, calling out to India to breath, her little sister pleading for her to wake up.  All I could do was stand there and listen.  Then Veruca started to scream, “Oh my God, oh my God, there’s foam coming out of her mouth, there’s blood.”  I told Veruca to keep driving as fast as she could, and I did my best to speak to her in a calm voice, but I was panicking inside.  Here was my little girl, seizing, not breathing, with foam and blood coming out of her mouth and my wife was still five minutes away from the hospital.

Standing at the emergency room ambulance bay door with the head nurse, my stepfather came running up. Somebody had called him.  The relief I felt when he came up and put his hand on my shoulder was a lifesaver for me: I wasn’t alone anymore.  He could hear Veruca crying on the phone, honking at cars to get out of her way.  She screamed that she was stuck at a light with a bunch of traffic.  I told her to start honking the horn, pull up on the sidewalk to get around the traffic, and run the red light.  At this point I could hear the horn from Verucas’ car; she was close.

As she raced up to the awaiting medical team, I ran to the back door to get India out.  To my horror, when I opened the door, my little girl was white and her lips were blue.  There was a thick mixture of foam, vomit, and blood running down her chin onto her chest.  India’s eyes were rolled back into her head, her legs and toes were pointed straight down, and her arms were rigid in the “Archers Position,” as a slow rhythmic beat pulsated through her little body.  India’s little sister’s eyes were as wide a saucers, and tears were running down her face. She said to me “Daddy, India won’t wake up, she’s sick!”

The medical team rushed my daughter into a waiting triage room and began working on restoring her breathing and getting the seizures under control.  Immediately, the doctor ordered a dose of anti-seizure medication but it didn’t work, she was still seizing.  The doctor then ordered another higher dose, and this didn’t work either.  Then the doctor pulled out a very powerful anti-seizure medication and began to calculate the dose based on my child’s weight and age.  By this point, my stepfather had entered the room with Veruca and overheard the doctor’s calculations.  My stepfather looked at the doctor, alarmed, and said “Your  math is wrong.”  The doctor took offense to this and said she knew what she was doing.  Fortunately, one of the nurses overheard what my stepfather had said and double-checked the dose.  The nurse then grabbed the doctor’s arm and said that she’d miscalculated the dose and would kill this little girl if she gave it to her.  Another nurse then double checked the first two injection quantities given to my daughter and said that they had been miscalculated as well.  My daughter had been overdosed and was in jeopardy of having her entire system shut down.

Horrified, I stood there as the head nurse pushed the doctor out of the way and began to take preventative measures.  The doctor was clearly flustered; she had no idea what to do, she was incompetent.  I grabbed one of the nurses, made her look me in the eye and asked if there was a better hospital for my daughter to be at right now.  Everybody in the room was quiet as I repeated myself.  The nurse looked around said, “This little girl needs to be at University of New Mexico Hospital Pediatric Unit in Albuquerque, we’re not equipped for this.”  I spun around to look at the head nurse and said that I wanted my little girl on “Life Flight” immediately to get her to Albuquerque, 240 miles away, as quickly as possible.  The head nurse nodded her head, made a call, and began to prep my daughter for the flight.

The emergency aircraft was too small for all of us to come along so we decided that mom would go in the airplane while I drove our youngest daughter up to Albuquerque to meet them.  As they were putting my daughter in the ambulance to transport her to the waiting aircraft, I jumped in my vehicle and headed north, only stopping to fill up the gas tank.  It was a long drive and I spent most of the time fielding questions from my youngest daughter about what had happened because she was traumatized.  All the while, I was out of communication with Veruca. I didn’t know if India was alive or dead and it was a living nightmare.

When I arrived at the hospital in Albuquerque, I found my wife in tears and my daughter on life support.  I was reliving the horror of what we experienced when she was hospitalized as an infant.  I stood there looking at my little girl who’d been so healthy just hours before not to mention all the progress she’d made over the past few years.  Would this seizure cause more brain damage?  Would she lose all that she’d gained?  Would she survive this? Would she be a vegetable?

There I was again, sitting next to my baby girl 24 hours a day, praying and hoping for the best.  I held her little hand, talking and singing to her in the hopes she could hear me and know I was there.  There are no words that can explain how I was feeling and I hope you never have to be in this position, whoever you are.

The doctors took my daughter off of life support about two days after we first arrived.  India was still non-responsive and the doctors were very hesitant to say if she would be ok or not; it was a waiting game.  Somehow, I had gotten my hands on a cute little stuffed bluebird.  I kept it next to India on her bed along with some other stuffed animals.  Hospitals are such sanitized, depressing places; I wanted some life and color around my child.

Late on the third day I was sitting next to India when she started to move.  I jumped up and started talking to her, trying to get a response.  She was clearly confused but I didn’t know if that was from massive brain damage or just her waking up after being under for three days.  I kept talking to her, even sang a song and she just blankly looked around the room. I was devastated.  I began to weep, my forehead on hers, all I could say is “I’m sorry, I’m so sorry.”   I lifted my head, picked up the bluebird, and held it over to my daughter.  Crying, I told her, “Look what I got you, baby girl, what color is it?” Before this seizure, she was able to identify and verbalize many of the basic colors.  I asked her several more times what color the bird was but she was just staring up at the ceiling with an endless gaze.  My world was crumbling to the ground and I was devastated.  I leaned over, kissed her on the forehead, placed the bluebird on her chest, and turned to go give Veruca the bad news.  I stood there for a moment, wondering how the hell I was going to tell her mother that India had lost her mental facilities, she was a vegetable.

Just as I began to walk out of the room, I heard India’s little voice say Bblue.”  I spun around to see her looking at me and ran back to her bedside just in time for her to say “blue” again.  I started crying, stroking her cheek, telling my baby girl how much I loved her and welcome back.  I held up the stuffed bluebird and this time India gave a small smile and said “blue.” I felt an unworldly sense of relief.  I lifted her up and held her in my arms, thankful that she was responsive.
It would still remain to be seen if she’d fully recover but for now, I was a happy father with my beautiful daughter.


* Here is list of what India participated in an 11 year period.  I now know that some of these were a bad choice and a waste of time for my daughter and my family, but I didn’t know anything at that time, I was just holding out hope and accepted it from everyone who offered it.  While not all items on this list are wise choices, all of them got here out of love and devotion for my daughter.

The Advanced Magnetic Research Institute “AMRI”: Michigan (provides treatments for a variety of disorders using a new device, the MME (Magnetic Molecular Energizer) which is similar to an MRI scanner). EXTREMELY EXPENSIVE – SIMPLISTIC THEORY – NO RESULTS WHATSOEVER.

Hippo TherapyNew Mexico (promotes the use of the movement of the horse as a treatment strategy in physical, occupational and speech-language therapy sessions for people living with disabilities).  AFFORDABLE – MAKES SENSE, IT’S AN ACTIVITY – FUN.

Euro-PedsMichigan (Unique and intense physical therapy treatment for children with Neuromotor disorders). EXTREMELY EXPENSIVE – WORKS GREAT AS IT IS PHYSICAL THERAPY IN A LARGE QUANTITY.

Massage TherapyCanada, Michigan, New Mexico and California. PRICE VARIES – RELAXES HER AND MAKES HER FEEL GOOD.

Chiropractic TreatmentsCanada, Michigan, New Mexico and California. PRICE VARIES –INDIA ENJOYS IT, MIGHT HELP A BIT, CAN BE DANGEROUS.

Physical TherapyMichigan and New Mexico EXTREMELY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, HAVE TO HAVE IT REGULARLY.

Occupational Therapy:  New Mexico EXTREMELY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, HAVE TO HAVE IT REGULARLY.

Recreational Therapy:  New Mexico and California AFFORDABLE – GREAT FUN.

Speech and Language Pathology:  New Mexico and Arizona (Speech-language pathologists work with people who cannot produce speech sounds or cannot produce them clearly) TERRIBLY EXPENSIVE WITHOUT INSURANCE – BASIC NEED, SHOULD HAVE IT ALL THE TIME.

Sensory IntegrationNew Mexico CAN BE AFFORDABLE – NOT SURE ABOUT THE RESULTS, BUT FUN.

Behavioral TherapyNew Mexico CHEAP – EXCELLENT RESULTS.

Swim TherapyNew Mexico CHEAP – EXCELLENT RESULTS, GREAT ACTIVITY  And GREAT FUN.

Music TherapyNew Mexico CHEAP – GREAT FUN.

Craniosacral TherapyNew Mexico, Michigan, California (A Craniosacral Therapy session involves the therapist placing their hands on the patient, which they say allows them to tune into what they call the Craniosacral System. The practitioner gently works with the spine and the skull and its cranial sutures, diaphragms, and fascia. In this way, the restrictions of nerve passages are said to be eased, the movement of cerebrospinal fluid through the spinal cord is said to be optimized, and misaligned bones are said to be restored to their proper position).  EXPENSIVE – NO RESULTS WHATSOEVER.

RolfingNew Mexico, Michigan, Colorado and California (is a system of connective tissue manipulation based on the theory that rebalancing and realigning the body with the earth's gravitational force results in more energy, increased breathing capacity, and alleviation of chronic pain.) EXPENSIVE – NOT SURE WHAT’S THE POINT – PT DOES THIS ANYWAY.

Yoga: New Mexico and Illinois CHEAP - GOOD RESULTS.

Botox: New Mexico (Botox injection benefits include ease in stretching, improvement in child’s range of motion, tolerance to wearing braces and developmental improvements in crawling, standing, or gait changes) AFFORDABLE – FIRST IT WORKED, LATER IT DIDN’T (AS STANDARD).

Feldenkrais Method: New Mexico (the Feldenkrais method is designed to improve movement repertoire, aiming to expand and refine the use of the self through awareness, in order to reduce pain or limitations in movement, and promote general well-being), EXPENSIVE – NO RESULTS WHATSOEVER – REGULAR PT WITH A GOOD THERAPIST IS WAY BETTER.

Hyperbaric Chamber: Canada (HBO therapy is a medical treatment that uses the administration of 100 percent oxygen at controlled pressure (greater than sea level) for a prescribed amount of time—usually 60 to 90 minutes). TERRIBLY EXPENSIVE – NO RESULTS WHATSOEVER.

Orthopedic Surgery: New Mexico (Soft tissue lengthening) TERRIBLY EXPENSIVE WITHOUT INSURANCE – WE’VE DONE IT TOO EARLY, AS WE DIDN’T KNOW ANY BETTER AT THE TIME.

Conductive Education, New Mexico, Canada, California and Colorado. AFFORDABLE, NOT A THERAPY – REQUIRES APPROACH AND LIFESTYLE CHANGES BUT IT TOOK YEARS TO UNDERSTAND WHY AND HOW.  IF I UNDERSTOOD THE IMPORTANCE AND EFFECT OF SIMPLE LIFESTYLE AND ROUTINE CHANGES FROM THE BEGINNING, I COULD HAVE GONE SPENDING THE MONEY AND EFFORT I PUT INTO USELESS THERAPIES INTO FAMILY VACATIONS OR SOME OTHER USEFUL THING, AND INDIA WOULD HAVE ENDED UP AT A MUCH BETTER PLACE PHYSICALLY, COGNITIVELY AND EMOTIONALLY
India also attended some wonderful camps for children with disabilities. 

Camp at the Bay: San Diego, California (Summer camp for children with disabilities, includes: jet skiing, water skiing, tubing, sailing, kayaking, baseball, swimming, ball games, cycling and hand cycling).

Camp Wet and WildSan Diego, California (Summer camp for children with disabilities, includes: kayaking, snorkeling, surfing, crafts, special exhibits and field trips).  BOTH OF THESE ARE AWESOME, AWESOME, AWESOME FUN, GREAT ACTIVITIES.

SAzU Pine Canyon Camp: Arizona (Mountain Cabin camp for children with disabilities).

Neil Young’s’ “The Bridge School” AAC by the Bay: Hillsborough, California (Provides a summer camp experience for people with complex communication needs).http://donniebrainard.blogspot.com/2010/04/our-day-in-hell-part-1.htmlhttp://donniebrainard.blogspot.com/2010/04/picu-our-day-in-hell-part-2.html


Monday, September 5, 2011

Our Day In Hell Part 6 – A Come To Jesus Talk



India has always attended public school with the only exception being when she was away for therapy.  We’d always wanted to give her the opportunity to learn as much as she was capable of and have lots of social interaction with other children.  We’ve experienced many highs and almost as many lows with the New Mexico school system,  fften finding ourselves having to deal with the red tape and battling the mind-numbing bureaucracy and its tenured minions.  At the same time, we’d encourage and if possible reward the positive aspects of the system.  This was a full time job, not for the faint of heart. There was an event that will haunt me for the rest of my life.  It was one of the few times in my life that I actually felt violent and wanted to inflict harm on another human being.

We placed India in an old and relatively small elementary school in the town of Mesilla, New Mexico.  The surroundings were beautiful, with thousands of Pecan trees surrounding the campus and the historic Rio Grande River flowing just west of the school.  A couple of minutes to the north was the jail where Billy the Kid was kept after he was caught for the last time.

At first all seemed fine—it took some adjustment for India but that was to be expected.  But after awhile, we noticed India becoming agitated and then depressed.  We couldn’t figure out what the hell was going on.  We didn’t necessarily suspect the school was the root of the problem but we checked anyway, several times.  We’d come down to the school to see how our daughter was doing.  Every time we paid a visit, India would be out in the playground with other children or in the classroom working on a project with at least one other kid.  It couldn’t be the school.  We wondered if her depression came from a new realization of her physical condition, a chemical imbalance, or something else that we couldn’t see.

The school year finally came to an end, summer was upon us, and India was back to her old happy self.  We were relieved and went on with life and had a great summer.  We spent several weeks at the beach in San Diego, went to the mountains in Colorado, and watched more movies than I care to count.  But as summers do, this one came to an end.  It was time to brave the long lines at the local store and stock up on the new semester’s school supplies.

As we were shopping for the new school year, we happened to run into the teacher’s aide from the previous year.  We greeted each other and had the usual small talk; how was your summer, are you excited about the new year, when are you going to get your teaching certificate, etc.  I noticed that she looked a bit nervous as she was talking to us but I didn’t pay much attention to it.  To our surprise though, she dropped the bomb of all bombs on us very abruptly.  This young assistant almost broke down and cried, right in the middle of the store when she said, “Listen, I have to tell you something.”

She went on to tell us that she couldn’t live with herself if she didn’t tell us what had happened the semester before with India.  She said that she’d wanted to tell us during the school year but she was too afraid.  She told us in detail how India’s teacher would put her in the corner of the classroom all day in her wheelchair, the brake on so India couldn’t wheel herself back to the children.  India would have to sit there as she watched the other children do art andmusic, have snack time, and socialize.  My little girl was forced to just sit here and watch. She was not attended to or allowed to interact.  When it came time for recess, she would only be taken out into the playground part of the time.  When she was taken outside, she was placed against the wall by the door and left yet again all by herself to just watch the other children enjoy their outside time.  My daughter had been neglected and abused by her teacher and the administration of the school did nothing.  And as when India experienced the painful sticker embedded deep in her skin but couldn’t tell us, she again was in a painful situation, helpless and unable to let us know what was going on.

The aid went on to tell my wife and I that every time the teacher would  see us coming, she’d quickly make sure that India was put with a group of children and made it look like she was included in whatever project they were working on.  If it was recess time when we’d arrive, the teacher would roll India’s chair into the middle of the playground and pretend to be play with her. 
I stood there in the middle of the store, staring at this young lady as she gave us intimate details of the neglect and abuse inflicted on my daughter.  By this point, she had tears running down her cheeks.  I don’t know how Veruca felt but I was a moment away from running out of the store, tracking down this teacher and beating her to death.  I was a ball of rage, my heart was pounding, my adrenaline was pumping, and my eyes were full of tears. 

To this day, I can’t tell you what the fuck this teacher was thinking or why she did what she did; I can only assume.  It’s my assumption that she had little empathy, no compassion, and was too lazy to do her job.  I don’t want to believe that she was just sadistic.  Either way, she had and has no business being a teacher of our children, no way.

As we drove home, we didn’t say a word.  Our heads were spinning from the news we’d just received.  The only thing I can possibly compare this to is most likely how a parent feels when they find out that their child has been raped.  How the hell could somebody do this to a helpless child, especially an educator and the trusted administration?

That very day, we filled out the paperwork to transfer our daughter to a newer school on the opposite side of town.  We made some inquiries to ensure that the previous year’s abusive teacher hadn’t transferred to this new school and scheduled a meeting with the new teacher, her aid, the entire administration, and the heads of the school district.

On the day of the meeting, I felt calm and focused as I put on my best suit and tie, placed my recording device and legal pads in my brief case, and headed out to have a “come to Jesus” moment with the Las Cruces public school system.  By this time in my career, I was very well known in the community and had acquired quite a bit of wealth and power.  As a matter of fact, the new school was surrounded by my development projects and the entire area was plastered with my real estate signs.

We convened the meeting at the new school’s conference room. Every seat was taken and a few people were forced to stand.  Veruca and I sat there as we listened to the administrators give us their canned and legally sanitized speech about the benefits of this school and how India would thrive here.  It was basically what the previous school had said to us.  I really wasn’t listening, just looking at the administrator’s lips while they were moving, as she mechanically blurted out words she’d clearly used a thousand times before.  I waited intentionally until the administrator was reaching the climax of her memorized dialogue.  Then I interrupted abruptly.

“Ma’am, I think it’s time for me to convey something very important to you and the rest of the people in this room.  I also expect every person here to convey what I’m about to say to others in the school district.  My daughter was neglected and abused last year at her previous school.”

I went on to give every possible detail and the impact it had on our daughter and the rest of the family.  Every eye in the room was fixed on me, unblinking. They were caught completely off guard.  I could sense that the teachers and therapists in the room were horrified and in disbelief at what they were hearing.  I knew for sure that the administrators were getting that terrible sinking feeling as I took the time to glare at each and every one of them while I was talking.

After I described what had happened, I went into attack mode.  I started my next sentence with “My name is Nick Rank,” (everybody knew this but it was for effect) “and I need to make sure that each and every one of you know that if something even remotely like what happened at last year’s school happens here, I’ll not only sue the school district but also the teacher, assistant, and administrators individually.  My family and I have many resources and will put every last penny into making your lives a living hell if you don’t do your job and look out for my daughters’ best interests.  I will hire a public relations firm with the directive to ensure every media outlet possible in the western United States runs the story of what’s happened.”
'Before I knew it was happening, I had tears flowing down my face as I said to the room, “My children are my life and India is unable to fend for herself, she is exposed and helpless.  She didn’t ask to be the way she is.  This little girl wants to play, interact, have friends, and learn.  Mentally, she’s just fine so when she’s excluded and kept in a corner six hours a day, she processes it just like any other kid would, she just cant express her sadness verbally.  Please don’t do this to my baby again, she doesn’t deserve it, she’s not a monster.”

I looked up to see every person in the room staring at me; some had tears rolling down their cheeks.  The head of Special Ed said in a very quiet voice, “This will never happen again, I assure you.”  Then India’s new teacher, who was one of the people who was crying, said that she would look out for my daughter, love and include her in everything.  She said it sincerely and it came from her heart, I could feel it.  She is still a friend to this day, a beautiful person who kept her word and gave India a wonderful school experience over the next year.

As a final note to this chapter, I have to say that I can’t begin to imagine what I would have done in this situation if I hadn’t had the resources, contacts, and power that I did.  If I were a fry cook or had some other minimum wage job with no resources and a disabled child who was being neglected by the school system, we would have been screwed.  I see it happen all the time.  The system chews up and spits out families all the time.