Showing posts with label Physical Therapy. Show all posts
Showing posts with label Physical Therapy. Show all posts

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.

Our Day In Hell Part 5 - Bonk

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

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

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

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

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

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

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

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

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