Confession: My Child is Dyslexic... #1in5

 #1in5

"Have you considered that your daughter could be dyslexic?"

I had to look it up...I honestly didn't really know what that meant other than reversing letters like "b" and "d".

Summer 2013 I received an email pointing me to a support group of parents forming in our area to discuss dyslexia in regards to their children's education.  Two days before that I'd been on campus at MTSU (I was a full time student there) and happened upon a building I'd never seen before...the Center for Dyslexia. At the time it grabbed my attention because, well I wasn't sure why. It just did. Then I receive this "random" email two days later suggesting dyslexia as something I should look into. 

There is no such thing as coincidence.

Let me start from the beginning.  In the Pre-K years...K was always super smart and well spoken. Even at 3 and 4 she was highly articulate and had a well developed vocabulary.  Essentially, there was nothing wrong with her communication skills.  She just couldn't write her own name. Big deal, I thought.  She's only 4.  Then it was struggling to recognize the sounds the letters of the alphabet made. She couldn't write the alphabet from A-Z correctly to save her life, but by George she could sing it til you were reaching into the closet for duct tape.

OK, so she's not writing short stories at 4 years old, we haven't even made it to Kindergarten yet.  What's the big deal? Well... as a mom, you just know: Something isn't right. When your child is very intelligent, thoughtful, creative, and articulate, there shouldn't be any issue with learning how to read...right?  She was relatively interested in books at the time, she loved it when I would read to her.  She liked holding them, turning the pages, looking at the pictures.  She just couldn't read them, wasn't interested much in trying, and resisted my efforts to help her sound out simple words like "cat" and "dog".  She's young....give it some time, I would tell myself, and decide I wouldn't push her too hard and risk ruining what interest she did have in books.  She'll learn in kindergarten because they'll teach her, right?  Seemed reasonable to me.  So, trusting the system to do its job and teach my child how to read, we forged ahead into Kindergarten.

That year will always be referred to as the "Wasted" year.  We wasted an entire school year gaining zero ground, and making things worse.  Not only did little K not like school, she hated it.  And she let it be known that she did not want to be there. She didn't just balk at learning...she rebelled against it.  No amount of moving her clip down to the red zone had any effect on her.  I was receiving phone calls from the teacher, the principal's office, and the guidance counselor on a fairly regular basis.  She's not a bad kid....so I was completely befuddled.  Everyone seemed to agree that she seemed young for her age and still immature (remember, at this point she's 5 years old).  And it seemed that 90% of the bad behavior was taking place at the same times, every day: reading, and math.  At home, she dug her heels in and refused to have anything to do with books at all. 

Everyone seemed to think that it would just go away if we kept trying different punishment and reward systems. Nothing worked.  The problem was that nobody would listen to me when I insisted that there must be a reason why she was creating such a raucous during reading class and fighting me at home trying to practice reading skills.  She was not making any progress at school in her reading though the rest of her grades were normal.  The closer we got to summer, the more difficult it was to even get her clothes on and to the car.  She didn't just "not wanna go to school"....she hated it.  She would scream and cry the whole way to the car.  She hated school.  Kindergarten.  Not high school where boys dump you at the prom and best friends stab you in the back.  This is kindergarten where you learn about colors, shapes, numbers, letters, play games, take a nap, and sing songs.   We finished the school year with a massive sigh of relief that it was over.


Over the summer I started to learn about dyslexia and had a strong gut feeling that was what we were dealing with.  That was when I realized my fears, concerns, and "gut mommy feelings" were justified, and there was a name for it.  A direction to go in.  People that could help me.  Support me.  Teach me how to navigate these muddy waters.  I cried.  And cried.  And cried.  Such relief.  I'm even getting misty-eyed all over again as I remember and write my story.

Onward and upward to 1st grade, that will be the year I refer to as the "Year of Tears."  In the beginning of 1st grade, I hit the ground running.  I started the diagnosis process with MTSU's Center for Dyslexia and the IEP process with the school. I insisted that there was something wrong, and I suspected dyslexia.  I was met with blank stares and question marks.  I didn't realize that I was the only person in the room that knew anything about dyslexia - a learning difference, that affects a child's ability to learn how to read - and I'm not a teacher. I don't even play one on TV.  1 in 5 of the population is dyslexic, and a majority of our teachers know NOTHING about it.  How to recognize it, how to screen for it, what it is, and how to teach a child with dyslexia.  I brought an advocate with me to attend the IEP meetings to help me through the maze of requesting evaluations, interpreting the results, arguing, negotiating, and persuading.   This is a 1st grade child's education we're talking about, not a 2006 Honda Accord.  

Note: To be fair, the Tennessee Department of Education makes no secret about strongly discouraging the practice of "over-identifying" students as LD and make no qualms about proclaiming their goal to reduce the number of IEP referrals. However, I'll reserve my opinion piece on that topic for another day.  Now, back to the story.

Things quickly went from bad to worse after Christmas holiday.  Homework that should've been finished in 30 minutes or less would take up to an hour or two, screaming and crying the whole way.  There were nights when I finally had to say enough is enough and we didn't finish homework that night.  When I picked her up from school, she would be sad, tell me she had a bad day and say things like, "Mom, I don't like school.  I'm the stupid kid.  I'm the kid that can't read, and everyone else can."  I couldn't even respond to her right away because I didn't want her to hear it in my voice and know I was crying.  My heart broke for her over and over again.  School had transformed from playground to battleground, and right then and there I decided I'll be damned if my daughter was going to be a casualty.  There are few things in life that can shatter your heart to pieces like the sound of your child giving up on themselves.  My daddy always said he could fix anything but a broken heart.  Turns out, he was right.

Two months before school year ended, and thanks to the help of my advocate (whom I affectionately call my "bull dog"), I finally won a small gain and she qualified for an IEP in Reading Fluency.  Oh yeah, I cried that day too.  Anyway, that basically meant she was able to receive accommodations and 30 minutes of specialized instruction per day.  No progress was made, because by this point the school year was ending in less than two months.  K's self-esteem and her confidence were at an all-time low, and she didn't care anymore if she got in trouble.  But she understood that everything she was going through....all the testing and evaluating and stress she was under...was so we could all find a way to help her.

The last week of school, I received the official, professional diagnosis from MTSU:  K is dyslexic.  After putting her through countless evaluations, tests, observations.  I finally had it in black and white what I'd known all along:  that my child was different than other kids, that she struggled in a different way, she learns in a different way, and she needs extra help from someone trained in the art of teaching dyslexic kids.  I cried, tears of relief. I found a tutoring company that fit the budget and offered the exact program that MTSU recommended for intervention. I cried some more.  The tutoring so far over the summer has made a difference, we've made small - but important - gains.  She still balks at reading at home, but her tutor told me last week that K said she's excited about going back to school.  I waited til we got home, and I cried.  I never thought in a million years I'd ever hear those words again.

I've always been a fighter, but there's something about fighting for my own child that nearly bested me.  I can remain unemotional and unbiased about anything and any issue in the world, except for this one.  Having a support group of other parents, bringing an advocate with me to the school meetings, and being part of a larger movement for change and support through founding Decoding Dyslexia's Tennessee chapter in 2013 with other parents just like me... has made the difference in my small successes.  I honestly couldn't have come this far for my daughter if it were not for my DDTN friends and fellow parents.  I don't know how I would've done it without them. 

Please....if you think your child might be dyslexic, reach out for support and help, and know that you are not alone.  1 in 5 children are.  They are some of the brightest, most creative, visionary people you'll ever meet - in fact, many of the world's most famous and successful people are dyslexic.  This child I have been blessed with is one of the smartest, most creative kids I know.  Recently, we were at our favorite restaurant, and she sat quietly at the table for hours enjoying the live music and making a "picture" of a person walking a dog on a leash, with a second person dropping a trail of dog treats...using nothing but paper straw wrappers.  The only time she became frustrated was when she ran out of wrappers.

Dyslexia is nothing to be ashamed of.  The shame is in knowing there's a problem, and doing nothing.

1 in 5.