Thursday, September 22, 2016

The 2-minute conversation with my son that changed everything

Since the moment Will walked into school on the first day of kindergarten, our experience in the education system has been horrifying and unforgivable.

I never realized, until then, that he wasn't like the other kids.  I mean, I guess I sort of always  knew, but I didn't realize, how really, really different he was.  And I had always thought it was a good thing, for him to be like this.  He just always seemed to come up with different solutions than other people would.  And he did things on his own time--which was often far later than the "experts" said he should-- and in his own terms.  

For example, he never crawled. Ever.  People told me that was my fault, because I must not have done "tummy time" enough with him.  Or people told me it didn't matter, he would crawl when he was ready.  But he never did.  We had hardwood floors when he was little, and one day--determined to get him to crawl--I put a blanket on the floor and set him down on it, on all fours.  I put a toy at the other end.  He wanted that toy.  He looked at that toy.  He studied that toy.  And then he took the blanket and pulled it towards him until he could reach the toy.

I thought, how creative.

Then I thought, he's going to have a tough time in school.

And he did.  Kindergarten was when I realized the other kids could do things he couldn't do.  The other kids all learned how to read in kindergarten and William didn't.  He was so frustrated.  His teacher labeled him as the "bad kid," and she treated me like I was some kind of meth addict because I was audacious enough to have a 5-year old who couldn't read.  By February, he cried every night and told me he hated school and he hated that everyone thought he was bad, and he begged me to homeschool him.  I don't even know where he learned the word homeschool because I'd never used it around him before.  My last conversation with his teacher ended with her crying, and not too long after, she quit her job.  I don't know if I had anything to do with that.  I no longer regret it if I do.

I thought, the education system is ridiculous.  Teachers have the emotional maturity of middle school mean girls who couldn't think of anything better to do with their lives.  Common core is bullshit.  These people are making way too many demands of little children.  William is a whole year younger than most of the other kids in his class, because we started kindergarten "on time" (he turned 5 just a week before the first day of school), and so many other parents wait until their kids are already 6, so that, I don't know, they'll be the biggest, toughest ones on the football team by the time they get to high school.  Parents are ridiculous.  

I thought, William will learn to read when he is good and ready.  Why should I expect him to read at age 5?  He's never done anything "on time." Recall, he never crawled.  He didn't walk until he was 16 months old.  He didn't talk until after he turned 2.  But he walks and talks just fine now.  He will read when he is ready to read.

On the last day of kindergarten he got to pick out a book to bring home with him.  He chose a very long book-- a chapter book-- about the Apollo 11 mission to the moon.  We read it to him when we celebrated the beginning of summer by camping out in our back yard. There was a full moon that night, and we looked at it.  William began to love space.  We went to the library and checked out every single book they had on space.  We read them again and again. William learned so much.  I learned so much.  We built models of the solar system.  We listened to podcasts about space. We watched videos about space. He could tell you every planet in the solar system, and how many moons each planet had, and all the names of the larger moons.  He could explain The Late Heavy Bombardment.  He could discuss the Kuiper Belt and Oort Cloud.  He could describe the life cycle of a star.  He worried about what would happen when our own Sun died (several billion years in the future).  He could tell you why Pluto used to be a planet, but wasn't considered a planet anymore.

I clung to his obsession with space. This was his thing. And this was my lifeline.  He was just a late bloomer. He wasn't a bad kid who failed to meet the basic expectations of kindergarten. He was a misunderstood genius.

He went to first grade, and his teacher wasn't a horrible person.  I volunteered in the classroom sometimes, but I had to stop that by the middle of the year because it killed me to see how far behind Will was compared to the other kids.  They whizzed through hundreds of sight words like it was nothing.  Will never got past the first page.  At his parent teacher conference, his teacher said, William really likes math--he would do math all day long if I would let him.  But his reading scores were very low.  Very very low.  The big words BELOW AVERAGE were all over his evaluations.  How could I argue with that?  Those were his scores.  How could I say, no you must be wrong--Will is a misunderstood genius.  There's no way he's BELOW AVERAGE.  How could I question his teacher on that, like I expected my kid to be smart just because I was high school valedictorian and have a PhD?  There it was, plain and clear, on the evaluation forms.  His teacher didn't seem particularly concerned about it, it was just a fact, he's BELOW AVERAGE.  Meaning, YOUR KID IS STUPID.  Here are the test scores.  These numbers don't lie.

All year, he was in a special reading program at school.  Sometimes he would get pulled out of the classroom when the other kids were doing fun stuff that he would have loved to do (like an engineering project to build a little house).  During the second half of the year, he wasn't progressing as far as they thought he should, so he brought home an extra hour of reading homework every night.  AN EXTRA FUCKING HOUR. OF READING HOMEWORK. EVERY NIGHT.  Maybe they thought it would take him 10 minutes.  But it didn't.  It took an hour.  He hated it.  He cried and got frustrated and we yelled at each other.  He would run and hide to try to get out of it.  But the teacher said he was BELOW AVERAGE and this extra homework was the thing he needed to learn how to read.  I had to sign a form saying that I had done the homework with him, in order to prove I was a good mom.  Because the default assumption when your kid is in first grade and can't read is that you must be a meth addict.  Will told me again that he hated school.  He hated first grade.  First grade was too hard, he said.  He hated that he worked so much harder than all the other kids, but he still didn't get it. He hated feeling like he was stupid.  He begged me to homeschool him.

The summer after first grade, I thought, okay.  We're going to figure this out.  I have a PhD, I teach college.  I am going to freaking teach my kid how to read. 

Except I couldn't.

Books that I'd already read to him, he could get through on his own just fine.  He memorized whole pages.  He could recite stories flawlessly. He could read, but only if he wasn't looking at the words.  Whenever we tried a new book, it was the inevitable breakdown of frustration and tears.

Camping was what saved us that summer.  We slept in our van in beautiful places on 25 nights between Memorial Day and Labor Day.  Out in the wilderness, there were no test scores or homework or elementary school teachers saying they were doing everything they could, he just wasn't that bright.  I wished it could be like that all the time.

On one of our trips to the Never Summer Mountains, we met up with a bunch of friends, and it was great. Will and the other kids ran and ran. We roasted marshmallows and made Smores.  The huge snowcapped mountains were all around us.  Will named the stars as they came out.

The next morning, I was talking with one of our friends at the campground.  She's a special education teacher in a different school district.  I was wary of her, because she is a teacher.  But she seemed almost as skeptical of the education system as me.  She asked me how William liked school, and I didn't sugar coat our experience.  I told her that it had made me so angry.  We sat in the van while the kids ran and I said, "I'm surprised they didn't hold Will back, to repeat first grade."

She cocked her head and raised her eyebrow and gave me an Oh, honey look.  She said, "They'll never tell you that.  They'll never hold him back.  If you think he needs to be held back, you need to go in there and demand it."

I was shocked.  I said I didn't know if that was the right thing to do.  How was I supposed to know if that was the right thing? They're the teachers, isn't that their job to determine his educational needs? What if I demanded that he be held back, and that wasn't what he needed, and it ruined his life? He was brilliant with knowing things about space, but he just couldn't read, at least, not when he was looking at the words.  Maybe reading was like walking and talking. One day he'd just be ready and do it.  Maybe, hopefully, that day would be soon.

She asked me about his reading.  She said, "Can William sound out words?" 

"Well yes.  Some words.  Like the words can and cat."

"But what about longer words?"  

"No."

"Can he tell apart b and d, or p and q?"

"Well, sometimes," I hesitated, because rarely was a better answer.

She looked at me and said, "Melissa, he's dyslexic." 

I shook my head, slowly at first, then faster.  "No," I said.  "It can't be. His teacher never said that.  He went to a reading specialist at school, and she never said that.  They just said he was below average and gave him extra homework.  Wouldn't they have told me if they thought he was dyslexic?"

She gave me the oh honey look again and shook her head.  "No, they will never tell you that. They aren't allowed to tell you if they think he's dyslexic.  They won't even use that word."

I broke down crying.  I thought of a student I had in one of my classes one time.  Early in the semester, he gave me a note from the campus learning center, explaining that he was dyslexic and was allowed to take exams at the testing center and have extra time.  He was a brilliant guy, really.  One of my favorite students ever. He could fix computers, and he was enthusiastic and engaged, and he could explain concepts so well in class.  But when I read his written work, even when he had extra time to finish it, there was something about it that made me think, he knows the answer to this question, he just can't write it down.  I wondered if that had something to do with dyslexia, but I wasn't sure.  I thought dyslexia meant you saw things backwards.

We got home from our camping trip and tried to continue learning how to read.  My mom had sent Will a package, with a book from the movie, Finding Dory.  Will was very excited.  Even with all his trouble reading, he has always loved books.  He loves looking at them and he especially loves books with very bright pictures.  He loves making up stories to go along with the pictures. Who cares what the words say anyway?  His stories are often so much more interesting than the printed text.

The book was for pre-schoolers.  It was mostly pictures.  It had one sentence on each page, maybe just five words long.  It was a book he had never seen before, and he couldn't read it.  Just. Could. Not.  I got a burst of hope when he successfully recognized the word "fish" on one page, but a page later, when he saw the word, "swim," he couldn't read it. His eyes darted around and looked at the pictures. I got frustrated.  "Look at the word, William," I said, and pointed to it.

"Ssssss..." he said, and his eyes darted to the pictures again.

"Look at the word," I reminded him.

"Sssss..." he said again.  Then, "Set," he pronounced.

"No," I shook my head, kept pointing to the word.  "Sound it out."  I was so frustrated.  Why couldn't he do this? Why didn't he try harder?

"Ssssss," he said.  "Smile."

Now he was just guessing, in hopes that he would randomly say the right word and this could be over.

"No," I said.  I felt like I was going to be sick.  This book was something pre-schoolers were supposed to be able to read, and he couldn't do it.

I thought about what my friend had said on the camping trip.

"William," I asked him gently, "what is it about reading that makes it so hard for you?"

He shrugged.  "I don't know the words," he said.

"But can't you sound them out?"

He shrugged again.

I pointed to the word swim.  "Can you see all these letters?" I asked.

"Yes."

"What are they?"

"S-W-I-M," he spelled out.

"Yes!" I said, encouraged.  "Do you know what sounds each of those letters makes?"

"Yes," he was confident.  And he made each of the sounds.

"Yes," I said. "Swim."

"Swim," he repeated, looking at the word and understanding it now.

"Right," I told him.  "You've got it.  So what makes it hard for you to sound out the word on your own?"

He didn't even need to pause to think.  "I can see all the letters," he explained, "and I know what sounds they make.  But when I try to read a word, I can't make the sounds go in the right order."

That was it.  Right there.

I had to let it sink in for a minute.

"Did any of your teachers in school ever ask you what made reading so hard for you?"

"No," he said.

Of course they didn't. 

"Did you ever tell them this, what you just told me now about the sounds and the letters?"

"No."

"How come there are some words you can read just fine, and other words are hard?"

"Well, the words I can read are the ones I memorized."

"Do you sound out any words?"

He shook his head.

"So all of the words you can read, it's because you've memorized them?"

He nodded.

"Your teachers in the reading lab, they said you had worked so hard and your reading had gotten better." At the end of the year he was still considered below average, but he was at least up to the lowest possible reading level for his grade.

"Well, sometimes the other kids read first, and I memorized what they said."

"And you just repeated it?"

"Yes," he grinned.

"So you tricked the reading teachers into thinking you could read?"

He grinned even wider.  "Yes."

I wrapped my arms around him and pressed my face into his blonde curls.  He smelled like stardust and sunshine.  Here was my kid, who never crawled, but figured out he could drag the blanket towards him so he could reach the toy.

I realized at that moment how amazing and beautiful his mind was, how he saw the world completely differently than I did, how most people do.  The education system had spent the last two years trying to turn me against him, convince me that he was stupid and it was my fault, but none of that was true.  What he described, using his own words, in those two minutes--that's dyslexia.  

I am not asking for advice.  In fact, please, do not give me advice.  If there is one thing I hate, and absolutely do not need right now, it is untenable solutions. 999% of my energy is focused on getting Will what he needs.  What I am doing might not be what you think I should do, but I am doing the absolute best that I can.

You can't "cure" dyslexia, but there are ways to manage it, so that these kids learn to read.  It hasn't been easy for me to find help for him, but I did, and it hasn't been within the education system. Dyslexia requires specific, explicit intervention.  The gold standard is called the Orton-Gillingham approach.  It isn't sophisticated or expensive to implement, and it has been around since the 1930's. It involves using multiple sensory inputs to help the brain make the kinds of connections it needs to in order to recognize words.  Plus, it's fun.  It makes reading like playing a game.  William adores his dyslexia tutor and the very expensive sessions I take him to twice a week until he learns how to read, or we run out of money.

I have not spoken favorably about our experience in the education system, and I know this may be shocking or hurtful to friends who are teachers.  In fact, many have assured me that what I've described is highly unusual--an example of a particularly "bad school" or teachers who are not doing their jobs.  This is not true.  William's school is consistently ranked one of the best in the district, and the district is one of the best in the state.  And these teachers are absolutely doing their jobs.  Nothing more, nothing less.  This experience is happening in every school, in every classroom across the nation.  

Research indicates that as many as 1 in 5 people have some form of dyslexia.  At Will's school, that means there are about 100 dyslexic kids (I'm pretty sure about this--I had William do the math).  These kids are being told they are BELOW AVERAGE, and they are going to the reading lab to work with reading specialists-- like Will does, now twice a week.  By law, this is what the school has to provide.  But the reading specialists are not trained in specific methodology for dyslexia intervention, nor do they use these methods.  Dyslexic children will never learn to read this way, but they may develop coping strategies that trick the reading specialists into thinking they can read.  This type of approach is called an RTI (Response to Intervention).  It exists so schools don't have to designate so many children as qualifying for special education, and it saves them money.  It exists so that schools can act like they're doing something, when they're actually not.  What it does is set up dyslexic kids to fail, and then blame them for it.

I could see through all that, and I found a way.  Other parents don't, and their kids don't get help.  Think about that. There are a hundred kids in Will's school alone who aren't getting help.  One of these kids might have become a research scientist who found the cure for cancer, if only he or she had been taught to read.  

During the first week or two of school this year, the children were tested and placed into reading levels.  Will told me that he was in the lowest reading level of his class.  "Am I dumb?" he asked me, shame tinging his voice.

"No," I said.  I hugged him tight and breathed in his stardust-and-lemon-cookie scent.  "You work harder than the other kids, and that makes you stronger."  I thought about the amazing connections that his non-neurotypical brain can make, and the way that he thinks about things and processes information completely differently than most people do. "You're smarter than the other kids too, because this stuff comes easy to them, but you have to work hard to find way."

The world needs people like William.  "You have dyslexia," I told him.  "And it's a gift."

4 comments:

angelmurf said...

You are a great mom with a great kid.

Pat said...

I hope a lot of people read this blog, because, you might have just helped so many parents recognize what is going on with their child. Makes me very dad about the school system and how it works.

Anonymous said...

WE LOVE you and SUPPORT you and wrap our arms around precious WILLIAM!!! He will achieve whatver he wants as he fights thru the system of pitfalls!!! Stay strong and be the wind beneath his wings!!!! LIfe is not always fair and it is sad William, is learning that at auch a young age ! He is a bright and shining star in OUR galaxy for sure!!! Wrapping you all in our arms !! Luv pawpaw and grama nan. ~~~ and pat meant sad not dad 😉

Anonymous said...

Lis, Your gift of writing makes this the best ever ... You have the power to make it a 'best seller' and change the lives of every person who faces the challenge of dyslexia -- whether it's a student, a parent, grandparent or educator. You have the power to access the system that labels a brilliant child as 'below average'! AND you have the power to not only give Will the opportunity to read but to make sure parents and children everywhere hear your story!! We'll get it published and Will is going to be famous!! And he can become an astronaut or whatever he wishes because his mom paved the way for him and others!!! Count me in as one of your Dyslexia advocates!!
Love from Auntie