Fighting for my Dyslexic child’s rights

I first realized my son was falling behind in reading when he was 5 years old and in Kindergarten. Simple three letter sight words where never mastered. He could tell me the sound of each letter of the alphabet but when the three letters were put together into a word his mind couldn’t read it as a word. He would read words one day that were fresh in his mind but two days later wouldn’t know what they were anymore.

“He needs to practice reading,” the teacher would tell me.

“He needs to work on his reading to raise his reading grade level,” the progress reports would tell me.

“He is a sweet little boy and a joy to teach…keep working on his reading!,” I would see on the report card.

And yet, even with the special reading group they put him in 2 hours a week, and all the time I added to the other homework time in the evenings to read with him, he still missed words such as, like, cat, dog, and the.

Halfway through 1st grade I felt a nagging feeling that we were not dealing with a child who just needed to practice reading. Something else was going on.

I sat through IEP meetings about him, listening to their account of my son and the challenges he was having. I was the first one to bring up the word Dyslexia.

“Do you think he is Dyslexic?” I asked them. And yet, I didn’t even really know what Dsylexia was. Well, I knew what it was, but didn’t know much about it, other than it meant someone couldn’t read, or had a lot of trouble reading. And something to do with flipped letters. That was the extent of my knowledge.

My question was blanketed with a smile and the statement that they (the school) do not use the term Dyslexia but instead like to refer to the problem as delayed reading comprehension. They also felt that his speech was affecting his understanding of letter sounds, therefore making it take longer to understand how to read, and spell.

“Work on his speech sounds and that will help him on his spelling tests!,” I was instructed.

Close to the end of his first grade year, after I kept throwing out the Dyslexic word, the school brought in a school psychologist and academically tested my son.  The results did not surprise me. His IQ was good, math skills were good, but reading comprehension was at the pre-kindergarten level. However, I had faith in the teachers and felt as if they would do everything they could to get him ahead. My son continued meeting with his speech teacher, continued going to his special reading group each week and continued falling farther behind.

“Keep working with him at home,” they told me.

And the school still did not use the term Dyslexia.

I knew in my heart that he was not being taught to read in a way that would teach him to read. I started reading about Dyslexia and it didn’t take me long to realize this was exactly what my son was dealing with.

I felt a sense of relief wash over me but at the same time a sense of unease. What did this mean? Would he be able to learn well enough to be successful in life and take care of himself? What do I need to do? Who will help us? With a school system that didn’t like to use the term Dyslexia, and kept insisting he just needed to read more, I felt alone. And frustrated.

He didn’t need practice. He needed a different way of learning.

I knew what I had to do. I wanted more for my son than for him to be grouped into a general term labeled as having reading comprehension delays. I wanted the term Dyslexia to be spoken and acknowledged. And then I wanted my son to be offered instruction specific for the needs of Dyslexics.

“We are a small school without the funds or means to handle special classes for him,” I was told. “There are other schools more equipped for special needs children that he may benefit from.” I was told.

Before I approached the school, I needed a diagnosis. If he indeed was Dyslexic, I wanted it in writing. I had my son tested through a 3rd party psychologist who specialized in Dyslexia and LD children.

Even before the psychologist evaluated the tests, he told me there was no question in his mind that my son was Dyslexic. After the formal evaluation was documented, he was diagnosed as Double Deficit Dyslexia – with inefficiencies in both orthographic (visual memory) and phonetic (decoding) processes.

I felt relief. Now I had something to use in my fight to get him the help he deserved. My plan of action was to meet with the IEP team and his second grade teacher before the start of school to develop a different method to help him grasp the understanding of words. My son did not need to be sent to another school different from his siblings. He needed to be taught in a way he could learn and all schools are required by law to provide that for each student.

And then my world was rocked. In my mailbox was my son’s final report card. I opened it, skimmed over it, and quickly read his grades.

“No surprise there…yep – I figured that one would be low –  YAY, his math grade is good!”

Then at the top, the words “retained” were hand written.  He had failed first grade due to his reading scores.

With shaking hands and pushing back the urge to cry, I called the school principle immediately after reading the report card. I explained that he had just been clinically diagnosed with Dyslexia and I didn’t think failing him was the answer. After about 10 minutes, I hung up the phone defeated. I was told he just couldn’t go to second grade if he was not reading at grade level. And then I let the tears, that I pushed down during the call, fall.

I knew I needed more research and facts in order to advocate for my son, so I then buried myself in researching Dyslexia, and a whole new world opened up before me.

I learned:

I learned about state laws, and misconceptions in society about this learning disability. I learned that flipped letters isn’t what Dyslexia is. I learned that Dyslexia is a neurological disorder that makes it very difficult for the brain to see grouped letters as a word.

I learned that non-dyslexic people easily see words as images. Such as, when you think of the word “cat” you see the image of that word in your head. C-A-T. You don’t need to sound out each letter. You have the memory of that word as a picture and you have learned it spells cat.

This is a skill that is very difficult for a Dyslexic. The mind doesn’t process the letters in that way. What they see may as well look like ATC or TCA. Letters, with no meaning.  The meaning is lost until they develop the image in memory that CAT means an animal that is a cat. And this takes much longer and much more effort for a Dyslexic.

I learned teaching using multi-sensory methods would help a Dyslexic’s mind hold onto the image of a word.

I learned that failing a student that is Dyslexic was not a positive thing to do. I read how doing this actually does more harm than good.

I learned about the positive affect color coded flashcards could have. And how larger printed words are easier to decode. And how a Dyslexic student needs more time to finish tests or assignments so they can decode the words that are wiggling on the page.

Shouldn’t administrators, and special education teachers know this already?  I’m just a parent who spent a few hours on Google and yet I learned all this. I am upset that (some) teachers and administrators, who are our experts, side step this learning disability with the plan of action that if they do not acknowledge Dyslexia, they don’t have to accommodate it. They can just have the student read more. In that special reading class of 5 students that meets for 1 hour, two times a week. And then write “retained” on his report card at the end of the year.

I am angry:

I am angry that parents have to do for their child what the school system should have done first. Isn’t it their job to wonder if a child could be Dyslexic and approach the parents with their concerns instead of the other way around?

“We are concerned over your son’s reading level. Keep working with him and let’s try and raise his reading up two levels this semester!”

I am angry and wondering how many other students over the years were retained due to Dyslexia and struggled through school being frustrated, feeling stupid, being made fun of when asked to read out loud in class, and ultimately finishing school scarred with anxiety, low self esteem, and no confidence.

I am angry because our kids deserve the highest education they can get. They deserve to be in a system with teachers and staff that will not hide the evidence under the rug, but instead fight for the child and do what they should do to meet the requirements of each student.

I’m angry with a government for cutting school budgets and not helping our school systems by giving them the funding they need to meet the needs of all students, and yet our tax dollars (4.66 billion a year) goes towards travel expenses for congress and their families to go all over the world on trips labeled as “Fact Finding.” Here’s an idea – They should Google Italy for all the facts they need and then send a little of that money to our teachers so they don’t have to use their salary to buy glue sticks and crayons!

I find myself angry and equally sympathetic towards our school systems, who are trying to make ends meet. Our schools need help. They need funding. They shouldn’t have to sit around the conference room table wondering how in the heck they are going to make it financially when the money coming in is far less than the money that needs to go out. Our government is not supporting our teachers and forgetting the most important thing we have. And that is, our children. It’s pathetic. They should realize our teachers are here to teach the generation that will soon take over and run the nation.

My son being diagnosed with Dyslexia has opened my eyes to a journey I see ahead of us. A journey of advocacy for my child. This is a path my son and I will have to walk together, as we maneuver through the years in a school system that may or may not give a compassionate nod our way.

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I would love to hear your thoughts. Feel free to e-mail me : debbie@wrinkledmommy.com or join the discussion on my Facebook page.