Sunday, April 15, 2012
Tuesday, April 10, 2012
Saturday, April 7, 2012
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 naïve, 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 Therapy: New
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-Peds: Michigan (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 Therapy: Canada,
Michigan, New Mexico and California. PRICE VARIES – RELAXES HER AND MAKES
HER FEEL GOOD.
Chiropractic Treatments: Canada,
Michigan, New Mexico and California. PRICE VARIES –INDIA ENJOYS IT, MIGHT
HELP A BIT, CAN BE DANGEROUS.
Physical Therapy: Michigan
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 Integration: New
Mexico CAN BE AFFORDABLE – NOT SURE ABOUT THE RESULTS, BUT FUN.
Behavioral Therapy: New
Mexico CHEAP – EXCELLENT RESULTS.
Swim Therapy: New
Mexico CHEAP – EXCELLENT RESULTS, GREAT ACTIVITY And GREAT FUN.
Music Therapy: New
Mexico CHEAP – GREAT FUN.
Craniosacral Therapy: New
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.
Rolfing: New
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 Wild: San
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.
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