Chapter Five- The Return to the Trenches

                    First of all I apologize for being away for so long.  I have a list of all of the typical excuses and business of everyday, but really I let myself fall into a false sense of security and accomplishment.  I failed to acknowledge that while I may have won the battle, the war is many years and battles from over.  I failed to make my voice (figuratively)  loud enough for Keaton's help to stick.  I failed my son. 
                    After discovering Keaton's limitations regarding his vision (see Book Four), and obtaining a 504 plan and intervention, and his teacher going above and beyond, and his reading improving, I allowed myself to be lulled.  I, in a fit of denial, let myself believe we were on a road straight to Keaton's hidden potential.  Then we came face to face with our most recent adversary- the second grade!  What I failed to realize and where my biggest misstep lay is in letting the 504 become my security blanket.  I have been clinging to this piece of paper, this trophy, this hard won prize.  I let my guard down.
                  Tonight I am riding the wave of the pity party I am throwing for myself and my failings as a mother.  Tomorrow, I hop back on my horse and ride back into the fray.  I want to play the blame game.  I desire a public forum in which I can point the finger at each person I feel has let my child down, pushed him aside, left him behind.  I know it is unproductive.  I know it is immature.  I know it won't make Keaton's road any easier.  I know it won't help him, but for tonight reason does not live here.  Tonight, I want to throw myself on the floor much like my three year old and kick and scream until someone makes it all better.  I have no sage words, no inspiring story, no hero, and no answers. 
                I have no shortage of educators in my family - Aunts, cousins, my mother, I , myself, am considering a return to school to enter the education field, I have nothing but respect for the profession- the calling- to educate others.  It is not an easy road and each year brings a class full of new challenges.  Funding and time and accessibility - bureaucracy- throwing roadblocks in front of what should be simple.  It hurts that I feel I am at a point where I have to look at them as the opposition.  It tears me apart that I feel backed into a corner.   What hurts worse however was the look on my sons face  when he casually picked up the progress report I had been so carefully keeping from  his view and after all of his hard work at home and school, seeing English grades that do not reflect his progress.  Watching his resolve shrivel, his determination topple, and his confidence disappear. 
                So nearing the end of my drowning of sorrows I must steel my resolve, place my determination to the sticking place, and muster every ounce of confidence I can and enter the arena.  "Once more into the breech dear friends" !!!! I have to leave tonight behind. Squeeze out or abandon all the bitching and whining and tears.  I have to regroup and refocus because it is upon me- The next Battle has begun and I have no intention of losing.

Chapter Four- And the EYE's Have It

Did you know there is a difference between eyesight and vision?  I do now.  Two weeks ago I was of the assumption that they were the same thing- synonyms if you will- of each other. As it turns out eyesight is only a part of vision as a whole.  Eyesight is what they measure when you sit in a dark room staring at a projection of letter charts and answer the question - 'Better or worse' over and over again.  Vision is, as it turns out, a number of eye functions any one of which can go haywire.

In the past I would have used these words interchangeably and not have any idea that while I have gotten Keaton's eyes tested every year and replaced any number of pairs of his broken glasses that his eyes could be a major culprit in his duel of the written word.  The past week has educated me however.

Test One- We went the first day and the good Dr ran Keaton through a number of average eye tests.  He found the basic muscle functions to be in working order (sigh of relief), but from his observations and my description of Keaton's troubles with words he suspected there very well could be a visual problem.

Test Two- Keaton sat with the tech who ran him through a number of tests mostly visual a couple auditory, mostly to help rule hearing issues out, while my mom and I watched through a two-way window pressing our ears to the glass to try and figure out what was happening.

Results Day-  Today as I waited to find out what all the testing was about I didn't know whether I wanted the Dr to tell me everything was great and no problems, or whether I wanted to hear well we found something- because it would mean we had an answer.  The Dr walked in and said 'Oh this is a easy one'- and I just thought 'crap back at square one and i am running out of Dr's to take him to'. 

As a result of Keaton's array of testing, I am currently of the opinion that there is a supreme level of brilliance behind those innocent (deceivingly so) eyes of his.  In three of his tests he scored withinn normal range, in one slightly higher than normal range, in two tests he scored years ahead in development, and in one he got the highest score you can get.  Hey Einstein couldn't even talk until he was what 6 or something! 

So not to burst your bubble folks, sadly here is where we reach the BUT in our happy tale of high test scores.  In the final test he scored a developmental level of a 7 month old- not years- MONTHS!  This was the eye movement test.  Meaning his eyes bounce around the page and around everything else - basically he'll never pass the pen test, even stone cold sober. The first thing we learn in the English language is that you read from left to right.  Bouncing eyes make that practically impossible.  Imagine follow the bouncing ball on speed! 

I am, as usual, a bundle of emotions.  Okay well we have a starting point - we exercise the eye movement- so I am relieved for that.  Uplifted and determined because WOW he did so well on the other tests a little bit of bouncy eye won't hold him back- no way!   I am honestly just overjoyed that we can put our finger on something and say this is something that is getting between him and the words- a tangiable enemy.  Ah but there it is itching at me . . . nudging at the back of my thoughts . . . my old friend, preemie mom guilt.  If I only could have held on just a little longer made it just a little longer- he would have been a little bigger and a little stronger and maybe he wouldn't be going through this. 

I know though that feeling sorry for myself isn't going to get him anywhere and for whatever damage it may have left that ventilator kept him breathing and with me so whats a little eye movement problem. We've made it through worse and we'll make it through this no problem.  So we will spend part of our evenings looking at charts of squiggly lines and rows and rows of numbers and see how it goes. 

Now you'll have to excuse me I need to go obsessively google the term erratic eye movement - at least the guilt is productive!

Chapter Three- Our Keaton Mantra

      Sometimes inspiration comes from the strangest places, just jumps up and smacks you in the face.  Who knew that it would occassionally show up in the form of a trashy reality show.  I thought my Sunday night of mindless television would be just that.  Mommytime to watch shows that I have to put absolutely no thought into and just have a good laugh.  As usual you make plans . . .

     A portion of the New Jersey Housewives started me thinking - I know right I just said The housewives and thinking in the same sentence, crazier things have happened!  Caroline was talking about her son's departure from law school (and there was the obligatory flash back of footage)  because the school felt that he could not succeed as an attorney if they made accomodations for his learning disability. 

    I am aware looking back that I saw this footage when it originally aired, so I have a thing for the crazier members of my heritage flipping tables and not knowing who the V.P. is - no judgment allowed,  but at the time it made very little impact on me.  Frankly looking back I'm ashamed it didn't reek of unfairness that a person be denied the ability to prove what they can do because of their learning disability.  Of course it started me thinking- what if that was my son?

    Our mantra for Keaton is just because it is easier for someone else, doesn't mean you can't do it- it just means you have to work harder.  We talk about the benefits of having to work harder for things that may seem simple to others.  That poor child is probably sick of hearing the words 'we'll just work harder' come out of my mouth.

      I can see it it in his eyes though.  I can see the determination he has to do it and do it not as good as but better.  He will sit with us for hours studying sight words going over and over the same flash cards running the same words hoping that something will stick.  Spelling them making the sounds, but not being able to remember them a few minutes later.  Practicing for an hour or more a night - with a smile on his face.  I tire of hearing my own voice long before he gets antsy to go out and play.

      The idea of someone telling him he can't do something and be successful because he has a learning disability starts my blood boiling from deep within the core of my mommyness.  I know someday he will not the have insultation of youth surrounding him.  That someday the 'real world' will come calling to him.  I know that it will not often be as easy for him.  I know he may meet roadblocks that many of us couldn't imagine.  I also know that he has more determination at six years old than I have seen in many adults.  I know that he will meet those roadblocks head on.  I know he will be successful in whatever he chooses to pursue.  I can see within him such amazing potential and ability. 

      I want more than anything, as any mother does, to protect him from all the bad things and from those that would judge him for learning differently, understanding differently.  I also recognize that eventually he will have to go out without my hovering watch and that the best defense I can provide him is the strength to push through that which would hold him back.  Watch out World Keaton is comin' for ya! 

Chapter Two- Keaton's Own Personal Superhero!

      Yesterday we had Keaton's second BLAT meeting at the school.  A blat meeting is basically a learning assessment by different teachers, the school nurse, principal, guidance counselor's and other faculty. As they say it takes two to tango and you cant get testing until after your second meeting.  My mom wisely suggested I bring my Aunt along, as she had to teach her own class and my Aunt is a retired teacher.  Best idea ever!

       Aunt Sandra started teaching when she was 19 years old.  At the time there was a serious teacher shortage and schools were recruiting students from the local college to teach while they were still earning their degrees.  She continued to teach into her 60's only takng a few years off to raise her own children and get them into school.

       And pardon my french but she is one bad bitch!  Classy as can be , but don't you mess with her when she knows what she is talking about and is determined to get it done.  It used to make me chuckle to walk down the hallways at school, yes where she taught, and hear othe kids say -' Gosh that Mrs. R she's tough' because to me she was my aunt, my godmother, the place i was going to runaway to when I got mad at my parents as a little girl.  But She is precisely that - tough. 

      Back to our meeting.  It finally seemed like we were getting at least somewhere.  After a year of phone calls and our first meeting, which if I am honest felt a little like lets humor her and maybe she'll go away, there was some action being taken.  Keaton is going to get some in classroom consideration and be put on the list waiting to be put on the list for testing.  Like a starving person fighting for crumbs, I am just relived at least something more than the nothing was going to be happening. 

       It occurs to me now and I am almost appalled at myself for grasping at the straws I was being handed.  I feel a disclaimer is appropriate here- I want to be very clear that my son has some really amazing teachers - both in that room and in his family going to bat for him and I know an he knows that they are fighting for him to.  There are those however who have their own adgendas and in my opinion those agendas are coupled with alot of excuses as to why it is taking this long to test my child and find out what will work for him so that he can read the words on the pages of the books he loves so much.  I was being told he had to wait that this had to be signed and that had to be done before he cold get moved onto te list of childen in line for testing.

     And then Aunt Sandra, who sat quietly during the meeting taking in every response, absorbing every detail, spoke.  'How long does this mother have to wait?' she inquired  knowing that we would be lucky for Keaton to make the testing list by January.  She met her opponants at every turn , for every excuse as to why feet had been dragged on a process started a year and a half ago and still had gone nowhere- she had a bolder and smarter retort. 'And when he misses out on the whole year of help what will you do?'  'What help will you offer to him when you get a diagnosis?'  'What else can you do?'.  She became my backbone.  She could have suddenly been wearing a cape and twirling a magic lasso and it wouldn't have surprised me in the slightest. 

      When she pointed to me and questioned 'What else would you like this mother to do?  I taught for many years and you and I both know she has taken the initiative to do so much on her own?'  I felt the tears fill my eyes and I was being rescued from the lonely tower of a far away castle by my Aunt in Shining Armor.  As we left the meeting and a few thanked my aunt for standng up and saying enough with the we can't's and she was already plannig her next move in our epc battle of the book, I knew my son has his own personal super hero and she doesnt need a cape.

    There are not enough thank you's in the world for what my Aunt did for Keaton and I yesterday.  I dont know that there are adquate words to express the gratidude  I have for her.  She stood up for Keaton and I when I allowed us to be put in line.  She was my voice when I was choked with frustration.  She was our determination when I started to faulter. 

    If you are ever driving down the streets of our small suburban-ish city and you pass a house with a large marble statue of a petite italian woman wearing a cape bearing the words 'Super Aunt' then you'll know - I found a way to say thank you. 

 

Chapter One- Introducing Keaton

         I would like to introduce you to my son Keaton.  He was born March 10th 2005. He had black hair, which later fell out and turned almost white.  He had huge blue eyes we could already tell would never change color.   He was 5 pounds exactly.  He was 5 weeks premature.  He spent 17 days in the NICU.  He had to be breath with the help of a ventilator for more than two weeks.  He was fed through a tube.   He could only be reached through the doors of his incubator.  I thought that was the hardest thing I would ever have to watch him go through . . . and then he started school. 

          I don't share the story of Keaton's birth to elicit sympathy or to invoke sadness.  I am sharing it with you to put into perspective the gravity of watching my child struggle with every letter, every word a mountain the summit of which he can't quite reach.
    
       Keaton was always our 'little sweet pea' .  Just a genuinely good natured and friendly little boy.  He was our little surfer baby, laid back and often lost in what we jokingly referred to as Keaton-land.  There are so many little things that I reflect on now that we just attributed to his personality.  Forgetting what he was doing mid-task, not being able to remember my brother-in-law's name,  his most often used phrase 'was oops I forgot'.  Now these cute little quirks shoot red flags and alarm bells coursing through my brain. 

      The first day of preschool he was so excited, I was sure his little 4 year old heart was going to pound right through his chest.  It quickly became apparent that his quirky forgetfulness was more than that.  The letters of the alphabet might as well have been hieroglyphs.   His preschool teachers recommended the pre-k summer program.  Keaton was thrilled- he finally got to ride the bus like the big kids.  It was during this program that we could no longer question it- there was something wrong. 

      Kindergarten should be one of the most exciting times for a child.  Going to school for the first time, making friends, learning, starting to accumulate the memories that they will carry with them for a lifetime.  Keaton was not so lucky.  Did he have fun and make friends?  He did- a few I suspect will be of the lifelong variety.  A dark cloud hung over the year however.  He was retaining almost nothing.  I  immediately started searching and reading and trying to find the answer to why my amazing little boy couldn't remember what he was learning. 

      First we started with the Dr's appointments, we'll go into those later, I was determined to walk into school armed and prepared and ready to put a plan into place to get Keaton learning, remembering, READING.  Boy was I in for a surprise. 

      That brings us where we are today, in a nutshell.  Keaton is in first grade and we are still fighting to find a way to unlock the door for Keaton to read.  That is what I want to share.  Our ups, our downs, hopefully our break throughs. I will not stop fighting for my enthusiastic, loving, sweet little Keaton and I hope our journey will encourage others not to get discouraged when what comes easy to others is harder for them.