Dyslexic Mom speaks to Kansas School Board

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When you finally learn the name of your child's lifelong struggle with reading, writing, and spelling is Dyslexia, you are immediately relieved. Relieved that you now know what has been causing your super intelligent child to struggle.  You are excited because you think that now that you know the name of the struggle, that there will be a solution within your reach.  

What you don't expect is the anguish you will go through to ensure your child learns to read, write and spell.  You expect to walk into the school with all the answers - because, it's actually pretty simple:

• It's called Dyslexia
• It affects  reading, writing, and spelling
• He learns different - he needs multi-sensory (all senses approach)
• He needs to learn systematically - start at the beginning and follows a logical order.
• It needs to be cumulative - each step must be based on concepts previously learned. 
• It must be explicit - all concepts must be taught - don't assume he knows the concepts. 
• A multi-sensory structured literacy approach is most effective. 

What I actually experienced is a lack of knowledge about Dyslexia that left me baffled. I thought that the diagnosis of Dyslexia would open doors to new options that would help my son. But, teachers looked at me dumbfounded when I said it was dyslexia. I heard, "isn't that where they flip the letters around?" But, that was all that was really known about Dyslexia.  

When I asked for the proven interventions that the International Dyslexia Association, Understood.org, Yale Center for Dyslexia and Creativity and countless other websites speak of, the school team looked at me like I was crazy. Either they had never heard of these Multi-Sensory Structured Literacy Programs, they are too stuck in their mindset to consider that what they are doing doesn't work, or they are unwilling to consider another alternative.  And all of those choices are not acceptable for your child with Dyslexia.

I took my plea to the top of the ladder - I went straight to the Director of Curriculum for Special Education and was given excuses.  Excuses from funding issues to we just don't have those programs here. 

I was excited when she told me if I could find a Multi-Sensory program that meets two criteria; Scientifically Researched and Peer Reviewed to meet the IDEA guidelines for funding special education programs on the Florida Center for Reading Readiness they would consider bringing them to the district. 

I had a mission!  I spent hours pouring over the FCRR website. I googled every Multi-Sensory Program based on the Orton-Gillingham method I could find. I found that the FCRR Program Reviews had not been updated for many years. Despite that, I still found two programs that fit her criteria. I emailed her my findings and waited and waited and waited. I never received a response.

With no response, I then decided it was time to go to the School Board to raise awareness for Dyslexia. So, on January 25th, 2016 - My son and I went to speak at a School Board meeting. The room was packed, standing room only. There had been an awards presentation before the board meeting - please excuse my nerves as I stumbled across the words as I started speaking.

For a PDF copy of the speech Click here 

I took my inspiration for my speech from one of my favorite Dyslexia Advocates, Dr. Kelli Sandman-Hurley from the Dyslexia Training Institute. You can find her speech to a California school board here.

Thanks! 

A Series of "Aha" Moments....Winning Dyslexia

So... you are reading "Winning Dyslexia" and you are thinking two things?  What is Dyslexia?  And how do you win it? 

First, let's tackle "What is Dyslexia?"  There are a lot of formal definitions out there.  One quick google search and you will see:

dys·lex·i·a

dəsˈleksēə/

noun

1. a general term for disorders that involve difficulty in learning to read or interpret words, letters, and other symbols, but that do not affect general intelligence.
2. 
   

Well, there you go.  But, this Mom of a brilliant 11 year old,  has had Dyslexia touch so many aspects of our lives that I feel there is so much more that you need to know to get a true feeling of what Dyslexia is. And then we can talk about how to win it! 

So let's look back. Look back at all the warning signs, that stick in my mind year after year, that I should have listened to. The signs that wake you up in the middle of the night with gut wrenching anguish, wondering how, can I solve this problem for my child? That now looking back on are a series of "aha" moments. 
  

This is Andrew.  Andrew was my first born and he was an exceptional baby. Ahead of the curve on almost all things. He was walking at 10 months old. He was even speaking clearly by 10 months - I mean multi-syllable words and sentences. I remember coaching him to say Chewbacca and he could spit it out so clearly, he didn't miss a beat. By the time he was 3, we turned him loose at preschool. He loved the social aspect, loved being around other kids. He could carry on conversations like a school aged child and had an insatiable curiosity for everything. Questions non stop 24 hours! 

Looking back now, the first "Aha" moment was during his first year in preschool. His teachers told us that he hated to do anything with a crayon. He hated to draw and would fight them when they asked him to color. The had to set a timer and have him try to work for at least 5 minutes before heading off to do something else. Not so worried about this, I blew it off as "he's a boy and a busy one at that! Who cares if he sits down to color."  

Then came Kindergarten. Andrew could not recognize his ABC's all of the time. One day he would know his letters, the next day he would not. He had trouble with rhyming. His teacher gave us examples like: when given the word "cat" to rhyme he would say "dog." Given the word "sun" he would say "shine". No matter how hard we worked he could not grasp that the letter sounds at the end of the word needed to sound like the other word. Teaching him to tie his tennis shoes was a nightmare - we finally learned in 2nd grade. 

Kindergarten was also the  year he began getting Reading interventions. He was identified through DIBELS (Dynamic Indicators of Basic Early Literacy Skills) that he needed intensive reading support.  In Kansas, the schools use a Multi Tiered System of Supports (MTSS) to support kids identified with reading or math needs.  The MTSS has 3 levels - 

• Teacher led small group support in classroom, 
• Strategic - pulled out of his class for "Reading Group" once daily for 30 minutes
• Intensive - pulled out of his class for "Reading Group" once daily for 1 hour.  

In parent teacher conferences, I would be bombarded by acronyms and words I had no clue as to what they meant: DIBELS, DORF, WPM, phoneme, grapheme, nonsense words, phonemic awareness, etc. I of course, listened attentively, concerned with all that I was hearing and yet confused at the same time. How is it possible that my overachiever in almost everything was struggling with the basics of ABC's, letter sounds and rhyming? 

Poor on the inner guilt, if only I would have read more to him.  Maybe I should have spent more time on the ABC's. Why didn't I make him practice writing more? When expressing my concerns, teachers did their best to smooth it over and they seemed to feel confident that he would get it. I remember hearing phrases like:

• Don't worry Mom, he'll get there! 
• He's a boy, boys always take longer to get reading than girls.
• They always get it by the third grade, don't stress. 

In the meantime, the years started to stack up and he was still struggling. And along with the reading struggles, comes spelling, handwriting, and written expression struggles. 

By 3rd grade, instead of teaching kids to learn to read, teachers are teaching them to read to learn. The homework became overwhelming. He had hit the brick wall. With two pages of math, one of language and a reading comprehension sheet too. We were spending upwards of 2 hours working on homework which did not count the nightly spelling practice and the pulling of teeth as we tried to read 20 minutes each night. I remember asking the teacher who said there is no way that his work should take that long. But it did...it always did.

We would work every day after school on spelling words. We made flash cards, matching games, wrote them on dry erase boards, wrote them in sugar (that was fun, as he licked his fingers every few minutes), we would write them on the bathroom mirror to read while brushing teeth, we played games on Spelling City,  you name it we tried it. And then we would get his test results the next week, only to see that after all the hard work, he still wasn't passing but maybe 50% of the words. 

Reading each night was like pulling teeth.  I would read a word, he would read a word.  "Sound it out"  I would say. Not sure who was more frustrated. We would butt heads. There was so tears. So many tears! At first, I thought he was reading the word backwards - he would read was as saw. I even remember telling his 1st grade teacher, that it is like he is seeing the whole word at once rather than reading the letters left to right.

Then I thought maybe he just needed glasses, He would read words very similarly wrong. He would read the word fur as fun, for example. Maybe he wasn't seeing the extra little line that makes an r an n.  So, we had him tested and he had only a slight discrepancy but we still got the glasses. Trying anything to make sense of what was going on. 

The only time my husband and I ever fought would be about Andrew's reading, homework and study habits. We fought whether Andrew was trying hard enough. Maybe he wasn't taking it seriously. That he needed to do better. That until he passed his spelling tests, he could not have his electronics.  I finally remember yelling "Not every kid can get straight "A's", maybe Andrew just can't do it.  Maybe he will be one of those kids that never will make an "A"". Maybe we will have to settle for "C's".

Wow!  looking back on that argument kills me every time. Why would I ever settle for my child to make a C when obviously he was super intelligent? Why would we hold him accountable for not trying hard enough, when obviously he was.  Why wasn't I looking for the reasons of why he was struggling? He was trying a lot harder than most kids his age - 3 hours longer anyway! Bad Momma moment right there.   

And with all of this came the agony. The lying awake at night wondering what I needed to do. Why this was so hard? Was it this hard for everyone?  I remember crying into the phone with my family, what should I do?

About this time my younger daughter began reading. It was like nothing I had ever seen before.  She picked up the book and boom was reading sentences. She would get stuck on a word and would know exactly how to sound it out. It was amazing. That's when the realization sunk in...reading should not be that hard. For most kids knowing letter sounds is easy. For most kids hearing sounds in words is easy. It comes almost naturally.

When Andrew was in 4th grade, I couldn't control my need to understand what was going on with him and began to do more and more research.  Trying to learn tips, tricks, and ways to make it easier.  Why couldn't I could just take it all away? His teacher and I were in constant communication, back and forth, to try to come up with new ideas that would work for Andrew. It was this year that I finally gave up on Spelling Tests.  I didn't care anymore. The hours of studying for a test, that he may or may not remember next week the correct way to spell, was just not worth the torment it was causing my son (and me). And, in the long run we had bigger issues to worry about.

Crying into the phone one night to my brother, he reminded me about his Dyslexia. That he was even held back in the 1st grade, because his reading skills were "nonexistent". About the same time HBO was airing  The Big Picture: Rethinking Dyslexia.   I set up the DVR to record it and on a rainy Saturday afternoon, I told my then 9 year old son that we were going to watch a movie about what it was like for his favorite uncle to learn in school.

Throughout the entire documentary Andrew had tons of questions.  Finally, at the end of the movie, he asked if there was a test for Dyslexia? "Yes, there was.  Why do you ask?" I answered. "Well Mom, reading is hard for me, and writing, and spelling is too.  Do you think I should get tested for Dyslexia? Do you think that is why it is so hard for me. Why I am so different than everyone else?"  Andrew said. I asked him, "Would you like to get tested for Dyslexia?" And then in a rush of words he spouted out, "Yes, I think I should. I want to know if this is why everything is so much harder for me." 

Okay, that was it - time to get him tested. But, where? I started google searching, but it wasn't very clear where or who to go to. I called my insurance carrier - they had no idea. I finally called my son's pediatrician. She didn't have a definite answer either, but told me she would figure it out and get back with me. I waited for a week and finally the phone call came. It was from a local Children's Hospital. The speech and hearing clinic called me to set up an appointment per my pediatrician's referral. This was January of his 4th grade year. I asked for the earliest appointment, but they could not get us in until JUNE! Ugh! More waiting! 

By March, it was time for another parent teacher conference. I remember talking with Andrew's fantastic, supportive teacher and telling her, that we were getting him evaluated for Dyslexia. As wonderful and as caring as she was, this new teacher, only 1 year out of college, really did not know much about Dyslexia and said she needed to do some research.
I also asked her to check with the school to see if they had any evaluations for Dyslexia, because waiting for June to get here was such a long wait for the answers we so desperately needed.  

His reading support teacher was working with him an hour a day. He was still in intensive reading support, she was attempting to teach him to read faster, more accurately, and fluently.   I asked her "Could his struggles with reading,spelling and writing be dyslexia?"  I mean she is the reading support teacher. Reading interventions were her expertise - surely she would know if it were Dyslexia.  She looked at me and responded with a little grimace as she said "Oh no," shaking her head  "we aren't even allowed to say the D-word."

WHAT? I remember going home that night with my husband and we both felt stunned.  I'm thinking why would they not be able to say it?  Can they say ADHD or Autism?  What's the difference? This started the downward spiral of my faith in the school district. 

The teacher got back with me and told me that the school district did not have an evaluation for Dyslexia and that I would have to get the outside evaluation done. So we waited and waited for that June appointment with the Speech and Hearing Clinic.

June finally arrived and we had our appointment. It was a 4 hour appointment. They covered everything. I remember watching through the one-way glass as my son sat there and plugged away at question after question with the interviewer. He had rapid naming tests, questions designed to test his vocabulary, spelling tests, writing tests, tests that had him follow verbal directions and then try to do the same thing with written directions, reading tests, etc. I still remember sitting behind that mirror - on the one hand hoping he would answer all the questions correctly to prove how darn smart he was and then on the other hand hoping he would fail the tests to prove he was Dyslexic. That we could finally put a name to these struggles. He was a rock star! He did his best, kept his cool and pushed through the hours of tests.  

At the end of the tests, they took us into an office and went over the results. We found out right there and then. He was Dyslexic. Finally! We knew what it was. He wasn't stupid or dumb. It wasn't that he wasn't working hard enough, in fact he was working way harder than we could ever imagine. It was because his brain is wired differently than normal readers. 

Sally Shaywitz, M.D., of the Yale center for Dyslexia and Creativity, defines Dyslexia as an unexpected disparity between intelligence and reading ability, particularly reading fluency." (For more info click here) And now that we have an answer as to the "what" it was, it should be easy to get him help at school! I mean wouldn't you think?

Riding in the elevator down to our car, Andrew let out a huge sigh. I asked him what that was about and he answered, "I'm just so glad I am dyslexic. That explains so much. Now I know why school is so hard for me. I'm not stupid." Wow! Almost brings tears to my eyes just typing this. I reached over and gave him a huge hug and told him I was excited too. 

When we got his report from the evaluation it showed that he had an excellent vocabulary.  Andrew would be entering 5th grade in just a few months an he had the vocabulary of an 8th grader.  The reading on the other hand showed that he was more on par with a 2nd grader. How could there be such disparity between how he speaks and how he reads?  It showed that his phonological memory - the ability to recall something was not strong and was proven by his slow rapid naming of numbers and ABC's.  His spelling was purely phonetic. Almost every word was spelled wrong.  Here are a few examples:

• friends was spelled frens
• Queen was spelled kween
• farmer was spelled frmr
• stop was spelled spot 

He had numerous letter reversals while writing and reading.  For example, b's and d's, p's and q's, g's and j's, m's and w's.  Anything that could be turned in a different direction and look the same he would misread or write incorrectly.  You see for a dyslexic that letter is just a picture that can be manipulated, so why would the name change based on which direction it was facing. This picture is a good example:

At the beginning of his 5th grade year, we took the diagnosis to the school and asked them for their support with Andrew. I had spent most of my summer reading and researching, but was still not very well versed in what we needed for him.  I thought the school would have a process for Dyslexia.  It seemed pretty common, I found in my research that nearly 1 out of every 5 students are Dyslexic. So surely with something this common, they would know what to do.  

One of the first things you learn while researching Dyslexia, is that your child will need a Multi-sensory Structured Literacy or Language Program (MSLP) approach for learning to read.  Margaret Byrd Rawson, a former President of the International Dyslexia Association (IDA) says it well...

“Dyslexic students need a different approach to learning language from that employed in most classrooms. They need to be taught, slowly and thoroughly, the basic elements of their language—the sounds and the letters which represent them—and how to put these together and take them apart. They have to have lots of practice in having their writing hands, eyes, ears, and voices working together for conscious organization and retention of their learning.” Teachers who use this approach help students perceive the speech sounds in words (phonemes) by looking in the mirror when they speak or exaggerating the movements of their mouths.”

Basically, that the child should learn the beginning letter sounds to form a foundation and build on that foundation systematically while also simultaneously teaching all of the core reading skills - phonological awareness, phonics/decoding, fluency, comprehension, and vocabulary. You see a student with Dyslexia can't take the time to learn all of these reading skills separately. Most students with dyslexia are one to 3 grade levels behind. They simply can't afford to not learn them all at once. Learning from an MSLP approach like Orton-Gillingham, Barton Reading and Spelling or Wilson Reading system effectively closes the gap on reading by teaching systematically and simultaneously.  (To read more from the IDA on MSLP click here)

The other thing you learn when researching Dyslexia is that most parents have their hands tied in frustration when trying to get the schools to teach students with a MSLP approach for reading.  You will read about frustrated parents, frustrated that there is an answer for their Dyslexic child to close the gap, yet the schools will not do it or as in our case do not have these programs.  

The first team meeting in August of his 5th grade year was interesting. I sat down with 9 of Andrew's school support staff. I was alone and really had no idea what he needed. I went over the diagnosis and they explained my options. They explained the evaluation process to get Andrew on an IEP (Individualized Education Plan.)  From my point of view, and from what I heard them saying, as they were describing the evaluation process, was that Andrew would need to be in the bottom 20% to qualify.  I immediately went into denial.  There was no way Andrew would qualify for an IEP.  He makes all A's and B's. If he made all A's and B's, then he surely would not be in the bottom 20% to qualify. How can they not have anything to help him when obviously he struggles so much. I mean his teacher's know that he struggles and they make modifications and accommodations to help him along the way. 

Being the hot headed Momma that I am, who was not informed on the process to get my son what he needed, I stupidly shot down the evaluation for IEP idea pretty quick. They then explained the process of 504 plan.  We decided to take the first quarter of his 5th grade year, so I could work with his teacher to decide upon accommodations and modifications he may need. (Want to know the difference between IEP and 504 Plan? Look here)

The first quarter came and went.  While preparing for parent teacher conferences in October, I was trying to nail down some of the accommodations/modifications I would want to ask for, I ran across a document that was given to me in that first meeting. I had never read it before then, just tucked into some random folder. With all my dyslexia research I realized I needed to get organized, so I started a filing system and was going through all his homework I had started saving, when I ran across a Reading Intervention report they had given me at that first meeting. 

It was a report that all his reading interventions had been tracked on. It had the whens and whys they had changed the reading interventions. He had been through 7 reading interventions in 5 years.  But, still only reading like a 2nd grader. I dived into the report and ran across in the 2nd grade, someone had noted that Andrew struggles with reading are probably due to a learning disorder.  And then in 3rd grade, it stated something similar, that Andrew's continued struggles learning to read is probably caused by his lack of focus and possible learning disability.  

Holy, you know what! Did I just read that correctly?!?!  You mean they knew in 2nd and 3rd grade that his reading issues were possibly a learning disorder/disability.  How was I never told of this?! You would think that a school, with teachers and staff that are there to serve the best interests of the students, would tell a parent if there was an issue with learning. They were the experts! They were the ones that teach kids to read day in and day out. This is their job! Their field! Why in the world would they keep that to themselves and not tell a parent. Especially, this parent who would cry through parent teacher conferences, wondering what he needed!  My  head was full of why, why, WHYS? which quickly made me mad, mad, MAD!!! 

This mom was done! Done with trusting that they had Andrew's best interests at heart. Done with believing that they were the experts. Done with listening to their ideas of how this should go! We were NOT going to settle for a 504. I researched and researched and threw my hands up in prayer that I was doing was the right thing - I was going to request a complete Educational Evaluation in all areas of the suspected disability of Dyslexia.

I became an overnight fan of the Wrights Law website.  It was here that I began to understand IDEA (Individuals with Disabilities Education Act) and know my rights as a parent,to understand the evaluation process, and to find answers to what the school could and could not do.  I would stay up to 2 and 3 a.m. reading, copying and pasting, anything and everything I may need later. I went through 2 reams of paper printing anything thing I may need to make my case for Andrew! 

I drafted a lovely two page letter requesting an educational evaluation request for my son. I made sure and sent it via email to the principal, teacher, special education teacher and copied myself. I copied myself to get a time stamp on the email. You see the school has 14 days to respond to your evaluation request. A meeting was set up within two weeks and I became crazed in my preparations for it. I felt like I was getting ready to be put on trial defending Andrew's rights to a fair and appropriate education. I would get up early, stay up late. Barely speaking to my husband or children. Read, read, read. I organized every thing into this huge file folder container. Every law I may need to reference, every thing I could find on Dyslexia that I may need to "teach" them about, every single communication between the school and I about Andrew, each page of school work - especially the one's marked up in red. 

When my husband and I went into the meeting to discuss the need for the evaluation we brought it all with us! I think the staff thought we were moving in. We were so determined. We went into the meeting and discussed our requests for evaluations to be completed on my son.  I had listed everything from a sensory processing evaluation to OT Evaluation to Assistive technology evaluation to an Intelligence Evaluation.  I wanted as much data as possible to prove that he needed more than just accommodations. 

About the same time as we were requesting the Evaluation, we started Andrew with a Barton Reading and Spelling Tutor. He started seeing her two times a week for an hour each day. Lucky for us she lived right up the street so every Tuesday and Wednesday after school he would walk up to her house and get to work learning to read and spell. It was within the first few lessons that Andrew started getting excited to go see her. When I asked him to compare his learning from his Barton tutor with his learning from school - he explained that everything just makes sense when he is at his Barton tutor. "There were rules for everything, know I know why and how to read and write these words!"

In February of his 5th grade year, the evaluations were complete! I remember sitting in that tiny room stuffed with people. I was so uneasy, I thought I may throw up. I was prepared, but what if didn't work? What if I hadn't thought of something? What if there was something I missed? What if they said he made too good grades to qualify for support? 

Every time I would speak my voice would quiver, my hands would shake, and I was on the brink of tears - there was so much on the line with this one little meeting. I often wonder if the people around that table with me understand the dire feeling Mom's like me feel, with the weight of my child's future hinging on their decision. To them this is just another meeting that is taking away from their already jam packed day as an educator. To us it was 6 years worth of anguish culminating into this one moment. 

I can barely remember much after the beginning of the conversation, the school psychologist opened up the conversation with "we are just going to start off with - Andrew does qualify for services!"  Hallelujah! Cue the trumpets! Whew - now we can relax and work on the what he needs instead of  arguing the results.  

The meeting was productive, we developed a plan, lots of accommodations and modifications.  He was going to get speech to text technology, keyboarding, access to audible books (Learning Ally), special education services to help with his written expression and spelling concerns. 

I did ask them to provide a MSLP, I would have settled for any of them, but I kept hitting a brick wall every time I asked.  So, based on their lack of programming and the success we were seeing with his tutor, we asked that the school not teach anything regarding reading to our son. That they focus on his written expression, teach him the technology, and reinforce the spelling rules and lists that his Barton Tutor provides. Andrew was doing so well with his Barton Reading and Spelling Tutor that I just did not have faith that the school could come up with any that could compare. 

It's not a perfect solution, but the time it would take to fight for a proper program for a Dyslexic was just not worth the wait for my son to close his 3 year gap in reading.  

So, fast forward to now, the middle of his 6th grade year. We have had stumbles, but we are working through them. The IEP team is on board, they do care, and I feel they do have his best interests at heart. They are eager to support Andrew anyway they can. They are eager to answer any questions and are working the plan! He has great teachers willing to try anything that might help and even offer solutions of their own! 

It's getting better, but I still feel like every time we talk about Dyslexia, deep down they still truly don't understand all that Dyslexia entails. But they are trying!

Andrew has been with his Barton Tutor now for 15 months. He is in the middle of the 5th of 10 levels of the Barton Reading and Spelling Program. He started as a 5th grader reading at the 2nd grade level. He is now halfway through his 6th grade year and on the cusp of reading at a 6th grade level!!!  Amazing right?!? He still has a lot he his working on - written expression, handwriting, speed, fluency and spelling but it is all coming together. He is one step closer to Winning Dyslexia.

And he is in great company! All Famous Dyslexics!