Well, folks, it's just about that time of year. The new school year is about to begin, and that can only mean one thing. Brace yourselves for the onslaught of moms on Facebook posting all about straight A's and honor rolls.
All you parents of LD kids know exactly what I'm talking about. Let's be honest. Sometimes we feel sad or discouraged about not having "A's" to celebrate. Sometimes I secretly want to choke the bragging "Straight A" moms of honor roll kids who read 3 years above their grade-level, and I'm not ashamed to admit it. The only "rolls" in my house go in the oven and come out wearing butter. It's hard for us moms of LD kids to not feel a smidge resentful of these proud parents of perfect offspring when our own sweet little angels open up a below grade level "easy" reader or math book and it looks something like this:
Parents of kids with Learning Disabilities may not have those "Straight A's" and honor lists to celebrate, but that doesn't mean we CAN'T celebrate the real successes, no matter how small they seem. That's why I'm asking you to join with me and celebrate your child's "YAY!'s" even if you don't have the "A's". I'll go first.
As you may recall from my previous blogs, my child struggles with reading due to dyslexia. I've had her in professional tutoring all summer, as well as working with her some at home. And by "some at home" I mean "occasionally, when the mere mention of reading a book at home doesn't result in red alert DEFCON 1 status with an imminent threat of initiating global thermonuclear war, resulting in massive casualties of apocalyptic proportions, and ending the fate of the world as we know it."
Okay, I'll be honest. That was only a slight exaggeration. Slight.
Anyway, as I've mentioned before, during tutoring we have made some small, yet important, gains. By going all the way back to the basics, she's building a foundation for larger successes down the road. This week, her tutor is out of the office so we were given a few worksheets to practice with. I decided to take a trip over the weekend to a local used bookstore and found literally hundreds of little phonics readers that were perfect for practicing the skills she's been working on this summer. They were only $0.05-$0.25 each, so I stocked up on a stack of these practice readers she's never seen before.
Typically, she reads new, unfamiliar material about like a drunk man walks: slow and wobbly just before stumbling, giving up, and falling over. So I've been helping her practice fluency by occasionally asking her to re-read a sentence, but the second time she has to do it smoothly, or I'll read it first and she "echoes" me. Today, I asked her to just re-read one sentence smoothly, and she did it perfectly. Then she shocked me. She didn't stop there. She kept right on going, carefully studying the next sentence for several seconds, silently
decoding each word in her head and then fluently reading it to me out
loud. Then she read the next sentence after that, on her own, fluently. She took control of this unfamiliar book with unfamiliar words, studying the whole sentences carefully and then reading them to me like a pro. This was me:
She ended up reading the whole book this way. Start to finish. And we high-fived and cheered together after each and every line. Then she gleefully shouted out the words, "Yay!!! I'm awesome!!" For a child that has been saying how "stupid and dumb" she is, this was a monumental moment.
I totally understand how it feels when other parents are bragging about how well their children read or how they get straight A's in everything. It's discouraging and disheartening. Just remember what is most important in your child's life isn't reduced to a single alphabet letter, or to only one skill to master. Our kids have amazing talents and things they excel at too. For us it may be music or art skills that we brag about, rather than grades. We don't get to choose what talents our children will have. We can only choose how we support them. The most important thing is the tenacity, the courage we instill in them to do their best, and to overcome challenges no matter how difficult they are. When we refuse to give up on them, they learn to not give up on themselves, and that's when you have these moments that build their confidence. That's when they begin to lay bricks on the foundation of their own success.
We are just as proud of our dyslexic kids as anyone else for their achievements. It's just that our kids' achievements look different than others. And that's okay.
Just as modern day Rome has their ancient Roman culture,
geniuses, and pantheon....modern day "Dyslexians" (well of course it's
really a word...as of right now, in fact) have an equally rich and quite fantastic mythology, complete with its own pantheon. These mysterious
people have given scientists and researchers fits for decades. Who are
they? What do they look like? What language do they speak? What makes
them so special? Where did they come from? All these questions have
given rise to much speculation and as a result, a fairly healthy supply
of mythology. Over the last 10-20 years (especially here in the past few) scientists, researchers, and
experts have answered many of those questions, and yet mythology still manages
to take precedence among the general public.
That's what I'd like to share with you in this week's blog, Dyspelling Dyslexian Mythology. So grab a cup of coffee or tea, and enjoy the ride through time and space in our Magical Myth Debunking Machine.
Introduction to Dyslexian Mythology
Why is all of this important to me? Well, I'm glad you asked!!
Now, I could be wrong, but I bet you know someone with a dyslexic child, and they have no idea.
Or maybe you have no idea that YOU are actually the parent of a
dyslexic child. Or perhaps, you're a teacher, wondering why sometimes
you get a kid in your classroom that doesn't seem to "get it" when it
comes to reading, but because they seem so brilliant you have no idea
why it's so hard for them to read. You have no idea, because you
don't know what dyslexia really is....or even (...yikes!...) that it
really does exist. Maybe you have no idea why you're still reading
this, bless your heart. But I can tell you that dyslexia is real, it
affects 1 in 5 of the population, and it is my personal goal to raise awareness. Let's start with the Dyslexian pantheon, shall we?
Dyslexian Gods & Goddesses
These
guys and gals aren't REALLY gods & goddesses, of course, but they
are some of the most successful, brilliant, creative, and famous people
in the world. Artists, geniuses, authors, CEO's, celebrities, athletes. They all
have one thing in common: they wear the title (notice I didn't say
"label") of "Dyslexic".
Cher, John
Lennon, Whoopie, George Washington, Woodrow Wilson, Agatha Christie,
Anderson Cooper, Steven Spielberg, Walt Disney, Richard Branson, Thomas Edison, Alexander Graham Bell, Nolan
Ryan, Muhammed Ali, Leonardo da Vinci, Picasso, Keira Knightley, Orlando Bloom, Vince Vaughn,
Jim Carrey, Jay Leno, Steve Jobs, Ozzy Osbourne, Henry Winkler (the
"Fonz"), Brendan O'Carroll, Patrick Dempsey (yes, ladies, Dr. McDreamy himself)....and the list goes on. Not one of these
people gave up on their dreams just because they were given the title
"dyslexic."
Actually...
I take back my previous statement. I just realized I have friends that
absolutely do consider Cher to be a goddess.
Popular Dyslexian Myth & Folklore
Now we will get to the bottom of some of the most common misconceptions...and I promise in doing so, I'll try my best to
use as little mumbo-jumbo as possible. Because, if you're like me - you
probably get totally lost in all the statistics, jargon, and
science-speak. Let's just cut to the chase.
The "Backwards" Myth
Hey, I know what dyslexia is....it's when people see things backwards, right? Many
people have misconceptions about what dyslexia is, and this is by far the most common. And the answer is No. First of all, dyslexia is on a spectrum ranging from mild
to profound...and although each child shows similar warning signs, not all dyslexics are alike. One of the
most well known symptoms is reversing letters such as "b", "d", "p", and
"q" which does give the illusion of seeing things backwards. However, if you really look at those letters, you will notice that they're
really all exactly the same letter....just pointing in different directions.
Obviously, a dyslexic won't see a cow in a field standing on its head
rather than on its feet, because dyslexia is not a VISUAL problem. And indeed...no
matter what angle you view it from, a cow is still a cow.
On the other hand, if you
start with the letter "b" and flip it horizontally, it's no longer a "b", it
becomes a "d" which has a totally different meaning...flip it vertically and it becomes a new letter with a new meaning, and so on. We call
this a "directionality" issue. So you
see...it's not that they literally "see" things backwards...their eyes
see the same thing that you and I see, it's just that their brain
processes that information differently, which can be very frustrating
for them. These kids also have a hard time grasping concepts such as left vs. right, before and after, front and back, and the
cardinal directions without visual prompts, cues and the like.
Bonus mom tip:
the cardinal directions are easier to remember with a mnemonic device like the one we use - Never Eat Shredded
Wheat (extra points for learning that this is a "clockwise" direction), and to remember left vs right, our left thumb makes an "L" for "left", and so on.
The "Dumb and Lazy" Myth
Oh, whatever. There's nothing wrong with these kids, they're just dumb and lazy ....This misconception breaks my heart the most, because it is such an injustice to brilliant, creative minds. They are forever thinking,
exploring, creating, visualizing, analyzing, inventing. Their brains
are so engaged, they have little use for the written language,
unfortunately society makes mastery of it a requirement for academic
purposes. It typically just gets in their way and holds them back because they are
thinking on a totally different plane, out of the box.The research shows that Dyslexia and intelligence have nothing to do with each other, anyone of any IQ can be dyslexic. Remember that guy Albert Einstein? He was dyslexic. They thought he was stupid, until he changed the world.
The "It's All My Fault" Myth
If I had only just read to little Johnny more when he was younger, he
wouldn't have these problems with reading or hate it so much. Well,
it's natural I guess for us parents to blame ourselves for our
children's shortcomings. After all, the rest of the world does a pretty
good job at pointing the finger at us whenever something goes wrong.
But the truth is, dyslexia is neurological in origin, affects 1 in 5
people, and is generally considered to be genetic. Which means you had
as much control over little Johnny being dyslexic as you had over
whether he'd be born with boy parts or girl parts (and, by the way, that
wouldn't matter either, because there are just as many girls with
dyslexia as there are boys). And don't
worry - many kids with dyslexia and other learning differences do go on
to become excellent readers (with lots of hard work and effort) and many
grow to love books. Rest assured, you didn't cause your child to become dyslexic. Oh, and in case you're wondering, it isn't caused by vaccines either.
The "Hooked on Phonics" Myth
Can't we just get "Hooked on Phonics" to fix our problem? Dyslexia
is a language processing deficiency, and remember I said already that
it is on a spectrum, so many dyslexics understand what letters make
which sounds. The struggles often come in the form of the application of phonics to written words
(also known as "decoding"). There are many subskills that need to be
mastered before "phonics" makes any sense and decoding can take place
for successful, fluent reading. For many kids, these skills come more
naturally but to dyslexics, not usually. For example, a dyslexic may
recognize the letters "d", "o", and "g" and the sounds they make, if you
show them individually on flash cards. Where we typically run into
problems is when you put those three letters side by side and ask the
child to blend them together, you get anything from blank stares to the
word "doll", "door", or "dish" (because they stop at the first or second
letter and guess the rest of the word).
This is a hallmark sign of dyslexia, and it is referred to as a lack of
"phonemic (pronounced: foh-knEE-mick) awareness" - understanding the relationship between the sounds
the letters d/o/g make and those sounds blended together in the form of
written letters to make the word
"dog". Add in the possible directional issue with the letter "d" in
this word, and we have really got a confused kiddo on our hands. Bless her heart.
Bottom
line: Phonemic awareness MUST be mastered before phonics will make any
sense. So increasing phonics instruction won't necessarily help unless
it teaches the student how to APPLY the
phonics to decoding words accurately and fluently.
Orton-Gillingham, Lindamood-Bell, and similar multisensory teaching
methods do just that by catering specifically to children with dyslexia and other learning disabilities.
I have also seen parents decide to become certified as OG tutors themselves....what a
great way to improve your child's education as well as others in your
area that need help too! You don't have to be a teacher to become
certified as a tutor, though it does take a lot of proper training, understanding, and patience.
The "Labeling" Myth
Would you just stop it already?? I don't want little Susie to be labeled, it will damage her self-esteem! We teach our kids from infancy that
it's okay to be different and that a world with everyone the same would
be boring...and yet we insist on ignoring rather than embracing those
differences when faced with difficulty. When it comes to the "labeling" dilemma, school
psychologists are just as bad about this one as parents are. I suppose
their hearts are in the right place though - they seem to believe it may
damage a child's self-esteem to be told there's something "different"
about them that makes things more difficult. But let's be honest, that's
exactly what is going on. There IS something different about them, and it
makes things more difficult. So what happens if you don't
identify the problem as dyslexia and label it as such? Little Susie
will continue to label herself. She will label herself, as so many do,
the "dumb, stupid kid that can't read 'cause she's dumb and stupid."
Remember, we already talked about how dyslexia and intelligence are not
correlated with each other....but try explaining that to a crying 7 year
old. Identifying and "labeling"* dyslexia is the first step in providing
answers, appropriate interventions, and knowing that you and your
child are not alone - you are part of the 1 in 5 and a large, supportive network of
adults and children just...like...you.
*Let the record show that this blogger strongly dislikes the term "label", because it seems to imply a negative social stigma, which is precisely what I aim to steer folks away from. I prefer terms like "title" and "badge of honor".
The "Helpless Parent" Myth
Ok, I know something is wrong, and it's probably dyslexia....but the school won't help me. There is nothing I can do. Hogwash!
Of course you can! I didn't give up, and neither will you. You won't
give up, because you can't. Even if the school system won't help you
get the appropriate support and intervention your child needs, there are
plenty of things you can do. Contact national organizations such as
Decoding Dyslexia, International Dyslexia Association, Learning Ally,
etc. and ask them to put you in touch with your local chapter. No local
chapter? Start one. Find a tutor that is trained in an
Orton-Gillingham based teaching method, as I mentioned before. We are
using SPIRE, which is working for us, but there are others: Take Flight,
Barton Reading and Spelling System, Wilson, and many more.
Lindamood-Bell is a wonderful system as well, that I've heard great
things about. Ask around, you may even find a tutor or company that
offers reduced rates or financial assistance for low income families to
help defray the cost. Be pro-active, your child's future depends on it!
The "Wrong Age" Myths
My 1st grader is too young to be diagnosed, though. Actually, according to the National Institute of Health, dyslexia is identifiable with 92% accuracy by age 5-1/2.
My child is already in 8th grade, he/she will never catch up. Not
true! There are many success stories of undiagnosed dyslexics
graduating and going on to college. My personal favorite story is Jovan
Haye, a retired NFL player from Jamaica whose severe dyslexia went
undiagnosed, and he struggled through high school but came out on top
with a 4.5 high school GPA and graduated from Vanderbilt University in
Nashville. I had the extreme pleasure of meeting Jovan, listening to his story, and speaking with him at a book signing event we held in Nashville this year. It's a truly inspirational story, and he is just a wonderful man. You can purchase or download his book for Nook through Barnes & Noble or on Kindle through Amazon.
The bottom line is with hard work and dedication, even a high schooler
can significantly improve their reading skills. Early detection is key,
but it is never too late!
Dyspelling Dyslexian Mythology: Debunking it Forward
Ok, so I want to help raise awareness and help others - what can I do?
It's simple, really. I challenge you to Debunk it Forward. I want each and every one of
you to pick 3 of your friends, sit down with them, and discuss with them
what dyslexia is, and what it is not. If you need help check out the
websites below for more information. Go through the myths and see how
many of them you believed too, and see the facts. Instruct each of your
3 friends to choose 3 more friends and so on, to have the same conversation,
debunking the myths and educating each other. Statistically-speaking, 1 in 5
people are dyslexic... How many friends do you have on Facebook? Think
about that for a moment.
Even
if you don't have children of your own, chances are one day you will
meet someone like me that mentions something in passing about their youngster's
struggles...and just by saying "hey, did you ever consider that your child
might be dyslexic?" you could change their lives for the better. I
know, because it changed my daughter's life. This is why I want you to help me, help these kids.
All it takes to change a child's life is just one person, and that one person just might be you.
It isn't important what we could have done had we
known sooner....the important part is what we do now that we know.
Knowledge is power, and debunking myths gets people talking. Talking
people raise awareness. Awareness brings change. Even if it is for
just one child...don't you think that's worth it? I do.
#DebunkItForward
Very Special Thanks goes to Eileen Miller with Ignite Dyslexia Awareness for taking the time to help me ensure the accuracy of the technical information contained in this blog.
For more information, here are a few sites to get you started:
"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.
