Grab the handle....and follow along our ride!

 

Ever think about pushing a little red wagon down the street....or better yet up a hill....and the first thing that comes to mind is how the wheels go astray and the handle bends. The wagon then flips over, dumping all the contents inside... out onto the pavement. Some of the items that have tumbled  can be picked up and placed back...but others seem to be a little harder to retrieve along the path. This is kind of how learning to read, write and process the written language is, for many children and adults living with Dyslexia. Please join and follow me along our red wagon ride.

        When my kids and I started our homeschooling journey five years ago...it was the middle of November and our neighborhood schools were suffering terribly at getting my kids to where they needed to be, or even recognize that we had a bigger issue on hand. Me as their parent, knew in my heart that something wasn't right...had not been right. All of my questioning over those past 4 years with my oldest, and over that year with my younger one, was all for good reason. My research and my gut, told me it was Dyslexia. The educational system said it was immaturity, lack of reading at home and plain laziness.  As a parent you have to wonder when you send your kid to school all day, you pay for private tutoring and are involved..... then why are they still  screaming to get out of the car.  You have to question when a paper is passed to you at parent teacher conference and the teacher says, "can you explain why he would possibly be writing like this?" I'm thinking...really....I'm not the professional.  I am a college graduate though...I have taught in our public schools, as a substitute teacher;  above everything, I know my children are intelligent.  Knowing my children more than anyone.... my guess was, we had a problem. The biggest battle wasn't that my children had a learning challenge....but that I was the only one that seemed concerned about it....or even giving it a name. I was the only one saying....now what? If I was questioning why there was a disconnect between performance and intellect....what about the kids who's parents didn't have the ability to do their research, who weren't the overly "involved" type. What about the other kids who had no voice advocating for themselves. In our particular school district, there were many low income families with little education themselves. It was often assumed that any child who lacked the ability to read, write or speak clearly, was the result of lack of parental involvement. When you start getting questions like: "how often do you read to your child?"..."are you sure your studying the sight words we sent home?" and "has the child seen a pediatrician recently?".  At that moment...I knew I was alone. I knew that I was their only voice...and I knew then....that this was the moment to bring them home for their education. The reality of dyslexia, is that it effects those from all walks of life. It is still hereditary whether you are from a wealthy background or the lowest income. It targets both girls and boys. Dyslexia hinders 1 in 5 children, in a classroom.
                      My intuition told me it could possibly be dyslexia, a few years prior. We had been living in VA at the time, and in a supposedly great school district. My Oldest son, who is now 14....had started off Kindergarten like any other child. Eager, energetic and enthusiastic to learn. He was a constant inquisitive child...with a vocabulary that often left people asking how old he was! If I thought he'd suffer from anything in school...I thought it would be boredom. Despite the fact that he often had me pulling my hair out with his own way of thinking and constant need to explore and figure things out...to his "spirited" personality, that lasted beyond the toddler years. I feared he'd suffer from discipline issues being around 30 other loud school kids each day, not issues of learning to read, write or process language. After all, he had completed two years of preschool without any problems...learned his ABC's, to count and how to write his name. He hated art class and would often like to sit upon the snack table during circle time, as he put it..."he had a better view of the book pages". At bedtime he'd let me read to him story after story...but when it came to nursery rhymes he didn't get the "rhyming" part, and failed miserably when we sang silly things like "kyle, file, wacky silly tile...his name is Kyle". He looked at us like what are you talking about... I now know, most kids at that age are enamored with rhyming, and singing. He'd comprehend stories that were read to him, and knew exactly if we left out a page or two. To say the least, he was a very sharp little man. After several weeks of Kindergarten though, the teacher pulled me aside and recognized his need for movement and figuring things out...but lack of interest in wanting to write, or spend time during reading hour. She was fresh out of teaching school, and had many great ideas up her sleeve for Kyle.  Things that offered him the ability to not sit at a desk all day. We figured it was just a long day, for a little boy. No naps, no play yard with little trikes and an all day curriculum schedule. I thought at the time, it was just that school today, is no longer what it used to be when I was a kid. Learning disability had not struck a chord with me yet.   He graduated kindergarten, meeting his benchmarks with some concern... but again, I thought what they expect out of kids now is a whole lot more. I did notice that he was writing a lot more letters backwards, and confusing his "b's" d's and P's and 9's a lot. I was told that it was extremely common for little boys to do this. In fact, many of my teaching friends told me not to worry, that they all did this. I'd always question, because with some of the other things that he did, and his possible energetic self(ADD)...his inability to learn to tie his shoes, his huge vocabulary but lack of ability to legibly read his writing. Was this still the norm?....I'd find myself still asking.  "Oh he will be fine", was the response I always got. 
        First grade came and went with the same scenario...this time him being sent to the title 1 program, with the reading specialist. I started to see some improvement, but questioned her about possible dyslexia. "Oh my goodness no....we aren't dealing with that at all...and even if it were...there are no testing that can be done until after the third grade". I did notice that while he had the reading specialist, his reading started to improve some....but then he'd start to confuse his math problems, dyscalculia and his writing was like chicken scratch,Dysgraphia. Still, they refused to think it was an issue. "Just keep reading to him," was their constant reply to my concerns. "Good readers come from being read to"...was all I'd hear. How much more could a mom read to her kid...my goodness, if I read anymore to him he might be swallowed by a book.  The reading specialist left the school...questioning Kyle's drop in progress, I was then informed she had left, and he was seeing a para professional(teachers aide). In this particular school district the para's only needed a high school education, and a simple test. I had to have more to substitute teach, back home in CA. I thought, if my kid truly has a learning problem... he needs a professional trained in reading. I asked what activities or therapy they had been working on during his 30 min a day he left for title 1....and I was told they read in groups. Come to find out, title 1 is only a temporary intervention program for kids that lag a little in reading...possibly ones that had a lot of illness during the year and had gotten behind...possibly ones that come from homes that reading isn't encouraged etc. None of which Kyle had in his background. 
       Moving on to 2nd  and then 3rd grade...I watched as he became further behind in his studies. As the homework increased, Kyle's frustration increased...and as he started to lag behind more in school during the day...his homework load started to increase each night. He suddenly started to misbehave more in class, and refused to get out of the car each morning. When I would question why he had such a large homework load each night, and why he was being denied recess time during school hours...I started to be flooded with "he isn't getting his work done... he puts his name on his paper and turns the paper in blank". He wasn't copying things off of the board like he was supposed to, and drawing on his notebook instead. Multiple choice test were coming back with several missed problems....despite the fact we had studied, and he knew all the answers, just that morning. Spelling words were all wrong when he knew them perfectly on the ride in. What was going on? By 3rd grade, we were now in WV. A new school district, new town and new life.....he was in a class with an experienced teacher who had taught in the school system for many years. Upon realizing that we were studying at home, that he came from a concerned family and that I had concerns from the start of the year, she kept an eye on him. When I mentioned dyslexia, she honestly told me that she didn't know much about it, wasn't a trained professional in it...but that she would try to figure out what was going on with Kyle. She offered adapting his curriculum and his day, to meet his needs at a minimum (or to what the school would allow her to do, without an IEP). At the time, I wasn't aware of what an independent educational plan was, or the nightmare scenario workup that I've come to learn happens in our school system, to obtain an IEP.  I had heard people talk about it, but typically only parents of severely disabled children. I guess I didn't realize at the time, the ability for an IEP for even learning adaptations like speech or even the GATE program, is the normal process that needs to be taken. This was never offered though. Instead, this caring teacher would offer to give Kyle his test orally, either after school or at the start of his recess or lunch break. He started to get 100 percent on his test. When she read to the class...Kyle's hand was the first in the air, to answer questions. When Kyle was called upon to read...he'd refuse. 
        Kyle was now in the 4th grade, across town at the intermediate school....and thrown into an entire new system of changing classes. After falling behind very rapidly and me having concerns from day one...I was told it was just an adjustment to the new class arrangements, having now multiple teachers.  Now I had to get all of his teachers on the same page. I asked for meetings with each one of them, only to be bombarded with the same scenario we always had..." he must not be putting an effort", "Kyle is a brilliant little boy that is capable of so much more....looks like a case of the lazies". I saw a little boy completely frustrated and shutting down. A little boy that feared going to school, because he was not turning in his work; being punished for his inability to finish assignments and confused why his test scores indicated far different, then the amount of hours we spent studying each night. A little boy who had such low self esteem....that he hated himself and everyone that crossed his path. All I could think in my head was, I'm aware of what is internally happening to my child, what about the kids unlike Kyle, who don't have aware parents. If the school system isn't helping them...than who is? I tried to enlighten his teachers on his adaptations that were made by his teacher the previous year. I was asked if he had an IEP???...at this point I understood the IEP process, and told them no...but if that was what it took to get his adaptations, then that was what we needed. I was immediately shut down,"We are sorry Mrs. Walters, but IEP's are only reserved for a child that needs them....Kyle is far too intelligent and would never produce results that would allow for special services". The conversation went everywhere from let's give him incentive programs on his desk with stickers, to sitting closer to the teachers desk, so he didn't get distracted. Never once were they asking...could he possibly have a learning issue.  I asked why he was being punished because he didn't copy things from the board and not finishing his work...punishing that would leave him the only one in his class sitting out of school assemblies and missing his recess. Why wasn't anyone understanding that his inability to complete his assignments, was a bigger problem....his illegible writing or dysgraphia, often paired with dyslexia wasn't just because he was a messy kid....but the cause of something greater.  From one suggestion to the next ...I was shut down. They were insistent because my child showed average to above average intelligence, that he couldn't possibly have a learning disability, that he was only being defiant and lazy.
         Across town, my youngest son at the time was in first grade. He on the other hand, was not the loud energetic type, as his older brother. He was always well behaved and very quite. I never truly knew "how much" he was learning in preschool, because he kept to himself. When he finally started to talk at the age of 3...I was relieved that he could speak. We were always just told he was a shy guy...and that his older brother was over powering him. In preschool, he was the model student....hands folded in his lap during circle time...making the most beautiful paintings during art. He was athletic and loved to run and jump, kindly playing with others. He was soft spoken and loved to count! He was slow to learn his ABC's and to write his name. His first month of Kindergarten though, he was the only one in the class that could master his alphabetical order of his words...indicating to his teacher that he was in fact capable of learning. Instantly the attitude turned into he just wasn't ready for school yet because he was intelligent but not able to keep up.  He had trouble sounding out sounds ....and when he mastered one set of sight words and was introduced to a new set...the old set seemed to suddenly vanish from his memory. He was very well liked, a teachers helper and great at following directions. He could cut and mastered many tactile task. My shy boy soon took off and became a class chatter box, I thought the rest would follow. We continued to work with him, hired a tutor for him... but still his progress wasn't matching up.  Some things he seemed terrific at, while other abilities were significantly below grade level. His intelligence & talents along with his ability to read, write and speak--- didn't coincide with one another.  It was recommended we send him to summer school...and he'd read one night, and the next day it had completely left his memory. What was going on? 12's became 21's and b's,d's and P's were always mixed up. He still said some things as if he were a toddler, like when he needed to speak with the "th" sound he used "F" and he couldn't for the life of him, remember the days of the week, the months of the year or even what month Christmas fell in. If he was sent upstairs to fetch three items...he was sure to only return with one. He'd tell stories and use words that I knew he couldn't read or write, but he knew the full meaning of them. We were always told he was a bright little guy with great thoughts and ideas, but not meeting his benchmarks. He was unique, quirky and creative. I started to inquire about possible testing and sending him to the school reading specialist.. once again,I was shut down. First it was they didn't offer services to children at that grade level; then it became we feel he needs to be held back. A January birthday, I was not going to hold him back, as he was already 6 years old. I knew the ramifications of retaining a child anyway...but an older one and a boy at that, just was not going to happen. Psycho educational research indicated everywhere that this was the worst thing that could be done with a child, especially one with a learning disability. Oh yeah....they didn't want to even consider a learning disability.   As I suggested before with my older son, I stressed dyslexia...I was repeatedly told, " In WV, we don't recognize dyslexia"! 
            First grade started off alright for Kaden, as he learned to mask some of his issues....but then he started to slip. Once again a child of mine was placed in title 1. Again, I suggested all the obvious signs of dyslexia...now knowing more about it and all of the things to look for. Not only were my children both displaying similar signs....but they had a father (my ex-husband),that had struggled in school. Not because he wasn't smart...because he is very intelligent...and could often be seen cutting class in high school, to tear apart his computer and put it back together again. He was gifted in many technical ways, had a fantastic memory and a broad vocabulary. People were often amazed at what the man knew, but give him a paper and pen and he'd struggle to spell things correctly. He held government clearances, was a computer engineer and made a six figure salary....but in my heart of hearts, I knew there had to have been a reason he hated school so bad. He also had a brother that struggled in school, and often got things mixed up and backwards at times.  At this point in my research, I knew that dyslexia had a 20% more likelihood with a parent or sibling that displayed the same signs, or who was dyslexic themselves.  On my side of the bloodline....I could remember hearing stories about my genius grandfather that held countless masters degrees...who was an aeronautical engineer and a college professor. He on the other hand didn't know his left or right, and my grandmother with only an eighth grade education, proofread his dissertations for grammar and spelling errors.  My research led me to  learn that Albert Einstein, Walt Disney and many other famous individuals were dyslexic, as well as  modern day success stories like Whoopie Goldberg, Henry Winkler, Tom Cruise and even the the owner of Virgin Atlantic airlines. Smart, creative, innovative leaders, politicians, writers, actors and scientist....all with tremendous gifts...but all with one thing in common, they struggle to read,write and process our written language.
           Everything that I was reading, was pointing in the direction of dyslexia. Every time I'd mention this...I was filled with the same responses, "they will outgrow this"... "very common until 3rd grade"...  and even, " dyslexia is not a real thing". WHAT!!!!....this was exactly what my research told me I'd encounter. I just couldn't fathom that in America, this could really happen. I couldn't fathom that our educational system really could be so ignorant.  Let's see, I've read to my kids since in the womb...one of my great loves in life is children's literature.  I have always had a dream of one day owning my very own children's bookshop. I was an avid reader myself growing up. I'm now remarried, and my husband and I enjoy pleasure reading, still as adults. This does not sound  like a mom who doesn't read to her kids. I've been home with my kids since I brought them home from the hospital.  I'm with them everyday, aware of their abilities, lack of abilities, as well as when they are truly being lazy.  They have the capacity to learn other things. Innovative...creative...imaginative thinkers....and filled with a vocabulary that truly doesn't match their reading or writing level. You tell me....does this sound like something normal is going on?
                 My final contact with the public schools, other than my intent to home school each year and my proof of progress each June, was a fall day of 2008. I knew that where I was not trained as a professional teacher or reading specialist, I could give my kids at least what our schools provided them....and then some. I knew that outside of a traditional setting I could provide the adaptations they needed to complete their work...and at an individualized pace according, to their abilities. I knew that I could maximize their self-esteem each day, rather than diminish it, as our public school system had already proven it could do. I had already been told that an IEP was not going to be possible to achieve in the school system.  Testing could be done... but not for "dyslexia".... and that the results of their testing, would not show an indication for services, based on my children's intelligence level. I also knew that even if I had gotten an outside test(which were costlier than I could afford), that the school had informed me, that even with such results...they did not have the means to provide the resources, for services in our county.  The fact that they were encouraging my homeschooling, rather than trying to provide me with a solution, was an indicator to me, that they really didn't have a clue or a desire to help my children reach their potential. I've been told that I probably could have sued....but truthfully, I only had the fight left in me to protect my children... to be their voice... and to build back their self esteem.  I knew a legal  fight would be long and hard and exhausting on our family and finances. At that point, my only fight I wanted to take on...was one to find new ways to educate my child myself, and to make their voices heard. Their voices and their struggles made aware by sharing our story. Sharing to the general public, family and friends....politicians and teachers and those setting standards for education reform. It isn't an impossible fight....because there are several states that allow for dyslexic testing and intervention and require it by law. It is often in those states.....like Texas, a leading state in the fight for dyslexia, where politicians have had a story of their own....and made their voices heard. It has to be a collaboration of individuals....from parents, to legislators, educators and those setting forth education policy reform, physicians, insurance companies and public figures...all working as one...to make a difference....to make change.

I now know for sure (well 99.9%) sure, that they are dyslexic. My children have not been formerly tested for dyslexia. The law in VA and WV,  did not allow for testing.   Now that we are homeschooling, we can adapt to our own learning style. We can take as much time on our lessons,  learning in a multi-sensory way. At some point though...I'd like my child to read....I'd like them to write. At some point, I'd like some help with the everyday burdens that this learning challenge places on our family. Not only my children and their struggles....but to us as parents. The worry and the heavy heart. Yes, there are moments that they do things, that offer us humor....like calling the carton of milk a "carnot" of milk; or saying go left when they mean right. They have gifts that the other kids their age don't have....like one with an incredible memory for detail...and always noting where my lost keys or sunglasses were left days before; to remembering the details of shows on the history or science channel from when he was little. To my other son, having an artistic ability and lots of creative inspiration.  There are extremely difficult moments as well, like when our 11 year old can't remember if his last name has an "e" or an "i", and forgets how to spell it! There are frustrating moments, like when you send him upstairs for three items....repeating multiple times before he goes fetching....only to have him arrive back with  1 1/2 items. You have scary moments when your toddler is recognizing words out in public that your older children still have to ask you about....despite seeing them all the time...and you wonder will they ever be able to drive. The nightly worry on the brain, as my day settles down and I try to close my eyes....will my children ever be able to put the pieces together and to be able to freely read, write and spell. I'm tired of the mixed stories...I'm tired of the myths...I'm tired of the comments "well isn't it just seeing backwards", or "have you heard about these glasses", or "it will just happen...the light bulb will go off". I'm tired of finding a possible solution, school or service....only to find that it has a huge price tag and isn't even guaranteed.  I know some of it comes with good intent....but much of it is ignorance on the part of society and our educational system. A system that is supposed to make learning available to all individuals, to maximize their potential. It is ignorance on our governments part....to not make services readily available to every parent, despite ones economic background. It is ignorance on the part of insurance companies, to not realize scientific research, that states it is a neurological problem. It is ignorance on the part of those offering teacher training, to not train all classroom teachers in our public school system, on  recognizing the signs, intervening, properly evaluating and offering scientifically based solutions. 
       The financial burden that the test and therapy sessions place upon families is astronomical! The cost to society is even greater though...with an individual that doesn't reach a level of reading and writing in adulthood, that matches their intellect. I've heard that something like 20% of prisoners are dyslexic. Why is that? My guess is that their self esteem was diminished too...and possibly they didn't have an advocate or a way to get their voice heard.  We are depriving our children the right to reach their full potential and to be an active part of society. We are denying them the confidence and self esteem it takes in life, to be active, informed, and educated citizens.  I imagine at some point, I will either have to fork over the money to get formal testing done....or fight with all my might to have these test paid for....through the insurance company or the school system or both. The problem doesn't lie under the responsibility of one over the other...but it's a problem that both need to address.  I guess I keep hoping and praying that awareness will become more readily known about dyslexia, and services will be provided. All I can do, is research more, make my voice heard, and pray that everything turns out just fine.  I will wait and try whatever I can...I will put forth one foot in front of the other... and grab onto their red wagon and search for help along the road.
         In my fight for my dyslexic sons....I find this blog as my voice for them. My voice to vent my concerns, my way of meeting others in their fight. It is my hope that one day....those in legislation, those educating our children in the public schools and individuals in society in general, will understand dyslexia. With something that affects 1 in 5 children in a classroom....it is my hope, that these individuals do not go unheard. It is my hope, that others take hold of the wagon handle...and help straighten out the ride. If we all pull along for those living with dyslexia....be it the children, parents or even adults themselves living with this often misunderstood learning challenge.....we can make the ride so much smoother! 
    I am not an expert in the field, I do not have special training...I'm just a mom with a heavy heart. I'm just looking for answers and reassurance, that one day my boys will be able to live a fulfilled, productive life, on their own. Taking drivers test, reading bedtime stories to their own children, and being able to express themselves through the written language.  I'm  a busy mom of five....homeschooling my older two  14 and 11... chasing toddlers 3 and almost 2...and tending to a newborn, just two months old. I'm guessing, I won't have time to blog daily...and sometimes not even weekly...but I will when I can. When I'm frustrated...inspired...informed! So come along with me, and embrace the ride....the bumpy days...the smooth days...the silly.... yes I know it's a dyslexic moment kinda day( because we have to have humor with their amazing ingenious brains).  Grab onto the handle of our red wagon and lets together try and straighten out the kinks!

Welcome to the RedWgn Foundation!
Jody