April 26, 2018

My Son Has Dyslexia

A few weeks ago, my son Grayson was diagnosed with dyslexia. At long last, I had a name for the daily struggle my son faced in kindergarten and beyond.

Parenting a child who is “different” in any capacity has it’s challenges. Well to be honest, all aspects of parenting can challenging at time!  This is just a challenge I didn’t foresee in my path of parenting.

For the parent who is facing the daunting prospect that their child may have something about them that is so different, it’s characterized as a “disability,” well it’s like staring down the rabbit hole of fear, worry and anxiety.

The “what if” downward spiral doesn’t even begin to describe this experience because it’s also confounded by guilt.  Did I cause this?  What could I have done differently?  Is he this way because of something I did?

And then I ride that “what if train” directly into the future and disembark directly into the “will he ever?” trap. Will he ever be able to go to college?  Will he learn how to read?  Will other kids understand or will they make fun of him?  Will he be successful?  And who really measures success anyway?

Okay now that I’ve poured out all of my worry and fears to you, I want to share my experience with Grayson.  And stress to you as a parent, that no matter who your child is, it is up to YOU to advocate for their best interests.

I posted a few months ago on Facebook saying I worried that Grayson may have a learning disability.  I figured I would get a bunch of comments and responses, some friends tagging other friends whose kids have experienced this, and then conversation and learning from talking to these parents.  That’s why we share these topics on Facebook, right?

So I was shocked when my post was largely ignored, people not even wanting to give it a like or a comment, but my direct message folder filled up with responses.  Friends and people I knew wanted to share stories and experiences, but not publicly.

Why?

Why is this something that has to be shared privately, quietly, out of the watchful eye of others?  Are we embarrassed that our kids have a learning disability?  Is there shame in admitting this on a social network?  Or do parents not want to label their kids (and perhaps spare a label on them as well)?  Or is it to keep a child’s personal life private? But with everything else shared on social media, why not be honest about challenges our kids are experiencing?

Last year I shared that I decided to hold my son back to repeat kindergarten as he was too young and immature to move to first grade.  With his summer birthday, quiet demeanor and immature personality, he just wasn’t ready.  Grayson has amazing abilities in physical skills, empathy, caring, sweetness, has amazing interpersonal skills and loves to help others.

But I saw at Back to School night two weeks after school started that he was in the chicken scratch phase while the rest of his class was color in the lines and making letters.

I struggled mightily at the beginning of this decision as I could be a career student.  I love to learn, excelled in every class I took, was Salutatorian of my middle school, had the top grade in my class at the end of 9th grade, took every AP class I could and passed them all, went to an amazing school where I passed out of many requirements.  I then had a major and two minors, traveled all around the world while studying and went to law school with an LSAT score of 164.

I went on the pass the bar on my first try, and honestly, didn’t find the test that hard (it was grueling though over three days.  But I was prepared for this test!).

Having a son who may need to repeat kinder raised all sorts of issues deep inside me.

But then I realized, these are my own issues, not his.  At the end of the day, he was just too young for kindergarten, and would benefit tremendously being in a class with true peers at a time when he was ready for the curriculum.  This decision was simply based on maturity, readiness, helping him become a leader, more confident, and go to college as an 18-year old instead of a 17-year old with a more developed cerebral cortex.

Looking back, it was the best decision I ever made as a parent, and I share with parents now this decision should not cause you stress and anxiety.  You know your child and you know what’s best for them.

But this new challenge, this actual diagnosis, this is different.  This is not just a Speech IEP to help him pronounce letters better.  This is an actual learning disability that will be with him the rest of his life.

He can overcome it by learning alternate tools to read, spell and write, but he will never be able to be cured.  It’s how his brain works.

And I remember thinking when I was a child that kids with dyslexia were weird.  I assumed they switched letters so an would be na and therefore reading would be hard.

While that may be a symptom of dyslexia, that it not the definition of this disorder.

And not having an insight into this disability, I have grown frustrated with my son over the past few months for his inability to learn phonetics, master his sounds, move through the rainbow word list, recognize sounds I’ve taught him over and over (and over again) and even blend two sounds he knows.

Let me take a step back and explain.

In the fall, Grayson was right on class level for everything except for math, where he is very advanced.  Grayson is very bright child, learns quickly, and is very smart.  Being dyslexic does not preclude smarts and quickness.  It solely impacts his ability to read, write and spell.  He can breeze through his math homework.

During his IEP testing, he completed several tasks at the fastest rate of any kid tested at his school.  He’s amazing at solving puzzles, figuring out patterns and putting similar things together.

A dyslexic child is not dumb.  They are not slow.  They are not destined to be unsuccessful.  They will learn in the normal classroom, they just approach reading, spelling and writing differently.  This child will be pulled out of class for special sessions 2x a week, and maybe receive extra help outside of school.

But what they will do, is struggle mightily to blend sounds.  When learning the word THAT, you sound out each letter – tttt hhhh aaaa tttt.  Next up you are supposed to blend those sounds to create the word.  Tttthhhhhaaaattt… that!

It helps if your child, like Gray, already knows the word “at” and the “th” blend.  So one would think he would go thhhh attttt.  Oh it’s that.

But no.  Instead I would get ttttt hhhhhh aaaaa ttttt. ?  ?  ?  ?  Ummmmmmm Said?

WHAT?  You just said the word, slowly.  Just blend the sounds and tada, you have the word.  You read it.  Ttttthhhhaaatt.  That!  But no, he got said.

Because he struggled to blend the sounds, he used a coping mechanism to name a word he understands well, said.

He is smart, and he knows he is having a problem.  He knows he isn’t able to blend the word as I or his teacher are expecting.  He feels bad and frustrated, and wants to produce a word.  That word is Said.

In the alternative, you get a very frustrated child who will not sit still, will not focus, and doesn’t want to draw more attention to something he is struggling mightily with.  Which is totally understand, who wants to draw attention to something that everyone else seems to be able to do easily, all of your friends in class, but you just cannot do it.

Imagine how that makes a 6 year old feel.  And while kids have big feelings, they don’t always have big words to describe their big feelings, which results in frustration, acting out, bad behavior.

I’m tremendously lucky that Grayson is an extremely well behaved, sweet and loving boy.  So that has not been an issue for us, but it is very common.

For months, I felt like Grayson just wasn’t trying to read.  He seemed to approach reading with minimal effort and quickly grow frustrated. Again I was that career student and I took his behavior personally. Here I was, his mommy, trying to help him and he couldn’t even muster the energy to try?

We had many frustrated afternoons, which were also experienced by my mom who spends a lot of time with Gray and my husband.

And looking back now, I feel so guilty.  We were frustrated at his seeming “lack of trying” while he WAS trying, but had an invisible obstacle impending his path to reading that none of us could see

I will share more on the process to getting this diagnosis (a lot of fighting to convince people your kindergartener is having a problem when they seem to be doing fine).

But for now, the diagnosis is out of the closet.  I’m not just responding to someone’s facebook post, I’m putting this out there in the world so people understand there should NEVER BE A STIGMA with having any learning disability.

It’s just one thing about that person, but it does not equal stupid, dumb, problematic, or that their parent did something wrong.  It just means they need more help to learn how to read and have to work EXTRA HARD to do things that the rest of us (including me) take for granted.

This may explain why so many people who are dyslexic are so brilliant and have accomplished so much in life like Albert Einstein, Pablo Picasso, Steve Jobs, Magic Johnson, Steven Speilberg, Charles Schwab, Henry Ford, Richard Branson, Ted Turner, Tom Cruise, Jay Leno, Muhammad Ali, Jay Leno, Whoopi Goldberg, Vince Vaughn, Orlando Bloom, Keanu Reeves, Billy Bob Thornton, Andy Warhol, Ansel Adams and countless others.

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