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.