Remembering a dyslexic classmate, 30 years later

I remember this kid from my fourth grade class. Jack was his name, I think, or at least, that's what I'll call him here. He seemed bigger than the rest of us, maybe he had been held back already. It was widely known that he was a trouble maker. Didn't try. Didn't care. The teachers regarded him with unmasked frustration and hostility, and their assessment of him was not lost on the rest of us. I mean, how stupid were you, if you had made it all the way to the fourth grade (perhaps having even repeated a grade or two along the way) and you still couldn't read?

I also remember that Jack was good at fixing things. Taking them apart and putting them back together again. Ballpoint pens in particular. Fourth grade was a seminal year for this, because the great privilege of being a fourth grader was that you sometimes got to write with a pen instead of a pencil. But with this privilege also came the frustration of pens that would every so often stop working, and you'd circle and circle on the page, waiting for the ink to come out, but it never did. Jack could fix your pen for you. He did this for me one time, as I had been seated next to him in art or music class. I'd regarded him somewhat suspiciously, and with a bit of fear. He was supposed to be a bad seed, the kind of kid you didn't talk to, a bully.

But as he sat next to me and dismantled my pen, he hummed a bit. And I realized, I couldn't think of one single instance when he had actually caused trouble or done something wrong. All I could think of was teachers yelling at him or punishing him for things that wouldn't have even caused so much as a raised eyebrow if some other student had done it. All I could think of was how, whenever he was called upon to read a passage out loud in class, he would stumble over the words, getting many of them wrong. And the rest of the class would snicker, at best, or laugh outright in his face.

He wasn't the bully. He was bullied.

He was dyslexic.

With a smile, Jack handed me back my pen, and it worked just fine. I wondered why everyone thought he was such a bad kid. I wondered how you could be in the fourth grade and still not be able to read.

That was almost thirty years ago. And the truth is, precious little has changed for dyslexic kids. My son would be Jack if I had listened to the piece-of-shit teachers who told me what a challenge he was, how he needs to try harder, how all we can do is wait and see. My son would be Jack if I had been gaslit by the piece-of-shit principal and school reading specialists and counselors who told me I was being unfair and unreasonable, who have cornered me and ripped me to shreds, who have done everything in their power to get me to shut the fuck up about dyslexia. My son would be Jack if I allowed myself to be intimidated by these overgrown middle school mean girls, by family members who deride me for being too "negative." My son would be Jack if I were anything other than stubborn as fuck. He would be Jack if I hadn't found Ms. V, if we hadn't had the means to pay thousands of dollars (with no end in sight) on dyslexia tutoring.

I thought about Jack the other day, and I wondered what ever happened to him. I'm not sure if I remember him being part of my class beyond grade school. I hoped to god he didn't blow his brains out or overdose, having spent his whole life believing he wasn't worth a damn. I hoped instead he invented something amazing, became a CEO or a stop motion film maker, or a software engineer.

I hope that my son makes it through, but unlike neurotypical children, who have every opportunity handed to them without question, Will has no such assurance. For dyslexic kids now, thirty years ago, sixty years ago, it's still the same: the very people whose job it is to help you succeed in life only sabotage you every step of the way.

Thanks for reading.

What it's like being a dyslexia mom

Everyday, you send your child into harm and trauma.

You send him to people who are violating the federal laws set up to protect him.

No one believes you.

Your friends and family look at you blankly and assure you that the people harming him are HEROES. You are just being Melissa, overreacting like you always do. You are unreasonable, unfair, crazy.

You don't sleep at night because you are so fucking terrified about what will happen to him after you die.

You are all alone, screaming into the void.

You can't do it anymore, but the cost of your failure is his life.

Days since last panic attack: 0.

Eres una madre muy valiente

Leda is one of the smartest people I know.

She went to a one-room school in rural Nicaragua. About the time she would have she graduated from high school, she had her only child--a son. She was a cleaning lady at the field station where Rob and I lived for a year when I was doing my dissertation research. Leda washed sheets and scrubbed toilets. Her life couldn't have been easy.

Leda didn't speak any English, but we never had trouble communicating. She was perceptive and could read my body language, and somehow she always knew what I meant even if I didn't use the right Spanish word. She was distant kin to Simeon, the volcano guide who sometimes helped me in the forest.

She never asked me for anything, except some batteries for her flashlight so that she could safely walk home from work one evening. It starts getting dark in Nicaragua by about 6pm, year round. And it is not like there are street lights, or streets. The "road" through the village is more rugged than some of the trails I run here in the foothills of the Rocky Mountains. You'd want a working flashlight if you were walking on them past dark. In sandals.

Years later she asked me for 20 dollars when I saw her in Managua and she needed the money to buy life-saving medication. She was very ill. Rob and I bought her dinner that night too, but she didn't feel much like eating.  She understood me better than I understood her-- I'm still not quite sure what was wrong, and I didn't pry.

She recovered. The last time I saw her, she was healthy and well.

Leda is one of the reasons why my life was never the same after Nicaragua. I remember coming "home" to a strange world of cars and grocery stores and microwaves. I remember watching the laundry spin round and round in the washing machine at our house in Urbana, while tears streamed down my face. What would Leda think of this? She washed bedsheets by hand, on a washboard, in a sink made of concrete.

Leda figured out how to use a computer and type. She figured out how to get a Gmail address and a Facebook account. She figured out how to use Google Hangouts and Facebook messenger. We have kept in contact for more than 10 years.

Shortly after the election this past year, she texted me, asking in Spanish if my family and I were safe. I replied that we were. Leda and I had never talked about politics or religion before. I could tell she wasn't sure where my beliefs fell on the political spectrum, and I also couldn't tell hers. So I asked her what people were saying in Nicaragua about the results of the election. Her reply was something like, we are afraid many will suffer. I said, it is the same here. Then, because I was pretty sure we were on the same page, I told her, "I voted for Hillary." She replied with a thumbs up and smiley face emoji. I wondered if both of us had just been placed on watch lists. I figured it was worth it. She continued, saying that she did not have much, but if my family was ever in need, she would share with us all that she had.

I guess she never forgot that 20 dollars I gave her for medicine.

Leda also read my Facebook posts that described William's struggles with dyslexia. She looked up "dyslexia" (dislexia in Spanish) and learned about what it was. This is more than any of Will's teachers at school have done. She wrote to me and said she was so sorry for our difficulties and that she wished only the best for Rob and me and Will. I told her thank you. She wrote, "Eres una madre muy valiente."

I sat there with the phone in my hand, reading over her words again and again to make sure I understood what they meant. I was ugly-crying before I even knew it.

William had just gotten home from school and was playing with some cars next to me. "Mommy, what's the matter?" he asked. I tried to explain that Leda had written something very kind to me and it had made me cry.

"What did she say?" he asked. I showed him the phone, and I read the words in Spanish. "What does that mean?"

I told him, and then he smiled the sweetest little smile and crawled into my lap. He pressed his face against my face and whispered so that I could feel his warm breath in my ear. "She's right," he said.

*****

A lot of people have called me a lot of things since this whole dyslexia fight began. It hasn't always been kind. Those who are supportive tend to say things like Leda-- they tell me that I'm brave or strong for choosing to fight. I appreciate this, I really do, but I don't feel that it's true. 

I am the least brave or strong person I know. And I did not choose this fight. I am backed into a corner and my child's life is on the other side. I will eviscerate anyone who stands in my way, even if it kills me.  And it will kill me. This isn't what I want. This isn't what I spent my whole life working for.  But I have no other choice. 

A few weeks ago, I contacted a local dyslexia parent support group and told them that I was considering going to speak at a school board meeting about the lack of appropriate intervention in schools and the life-long negative impact this has on dyslexic children. A few other mothers said they would go too. One of the mothers mentioned our intention to the assistant superintendent, and the reaction was very swift. Several school district officials offered to meet with us and discuss our concerns immediately. Better to keep these comments in a private room, I suppose, than in the publicly available minutes of the school board meeting.

We took them up on their offer, knowing we could always approach the board afterwards, particularly if our meeting with them did not go well. Several parents attended. I did not smile at any of school district officials. I couldn't. These are the people who are directly responsible for throwing my son's life away. These are the people who are throwing away the lives of as many as 6,000 children in the school district. Dyslexia is real, and it affects 1 in 5.

The assistant superintendent was at least somewhat receptive, which is a vast improvement compared to anyone else I have dealt with in the district. He seemed motivated by the possibility that our school district could do better than Boulder, which initiated a pilot program offering Barton instruction to 100 dyslexic kids in school. Our district currently does nothing but deny that dyslexia exists. He seemed intrigued that by providing appropriate instruction, we could lower the appallingly high drop out rate and epidemic of adolescent suicides in the district (depression, anxiety, dropping out of school, and suicide are all higher in unremediated dyslexics). He said he would get back to us within ten days. The clock is ticking. The lives of thousands of children hang in the balance.

After the meeting, the other dyslexia parents stood around, rehashing and decompressing, and marveling at how similar all of our horrifying experiences have been. There may be no other human universal. Dyslexia is the great equalizer.

The other parents all had children older than Will, and their concern was mainly about their kids entering middle school in the next year or two. Even though Will is a bit younger, it occurred to me-- none of the changes we proposed would in any way benefit him. We asked for mandatory kindergarten screening and at least one dyslexia specialist in each elementary school. I specifically demanded Orton-Gillingham instruction for every child identified who could benefit from it. 

Even in the extremely unlikely scenario that any of these proposed changes would be put into place during the next school year, Will would be in third grade. And we've already paid thousands of dollars in private dyslexia tutoring to save his life. The effort would be put towards identifying the younger kids and providing them with intervention. Will would be past it. Shit out of luck.

I realized at that moment, I wasn't doing this for him after all. It is too late for him. I'm doing this for the other kids, for the other dyslexia moms, so that they never have to go through what I have. 

It took a minute or two, for all of this to sink in.

There's this ethos among special-needs moms, or maybe all moms, or maybe all women in general, not be be seen as complaining. I've lost friends and made enemies for speaking up about what the schools in our country do to dyslexic kids. Nobody wants to go through this, to be seen as such a negative person. We'd all rather believe that schools are good, and teachers are heroes. It's easier that way. It prompts us to silence, but silence is acceptance, complicity even. And it makes every single dyslexia mom have to reinvent the wheel. We've known for decades what instructional approach dyslexic children require in order to learn, but schools simply refuse to use this. The stories dyslexic people tell about their experiences in the 1950's, 1960's, are no different that what is happening today. We've lost generations of brilliant people who were never taught how to read, and it is time for that to stop.

I'm not strong, I'm not brave, and I absolutely can't do this alone. Who is with me?

Selling my soul to get to Javelina

I sold my soul to the devil at least six times just to make it to the start line of Javelina 100.  Each time I sold a soul, I wondered if I'd had any left to get me to the finish.

Remember how I vowed, or maybe just hoped, that I wouldn't spend August injured after reaching a new mileage high in July (as has happened for the past 2 years)?  Right.  I got injured.

The sharp, shooting pain in my knee began 2 weeks after Howl, when I was trying to run this local event called 24 Hours of Towers. I had no intention of going 24 hours. But I did want to attempt Towers 3 times (1,700 feet of gain each ascent) because the most I'd ever done before was twice. My quads were still sore from Howl the whole time, but on my second Towers descent, there it was, bright and white hot, screaming, searing pain on the outside of my right knee.

There was no point in worrying just yet. Javelina was 2 months away. I would get myself down the mountain, and this would pass.

Upper right: This was Will's first Towers summit. He said it made him feel tired and proud and hungry. Lower Left: Me, smiling at the top of Towers, feeling good for the last time in what would be a very, very long time. 

It would not pass.

The pain was really only there while I was running. I would take a few days off and then try it again, and sometimes I would make it 2 miles before the pain returned, sometimes only a quarter mile.  I tried everything. Rest, ice, ibuprofen, KT tape, strengthening and stretching, rossiter. I made an appointment with a knee specialist who couldn't see me for another 2 weeks, at which point, I hoped the injury would just be better.  But the pain always came back. Sometimes I could manage as much as 6 miles, by running a half mile at a time with a quarter mile walk break in between.  This felt abysmal and terrifying. I was always waiting for those daggers of pain to return, and they always came back, at some point during the run. I stayed on a miserable 1/2 mile dirt loop right by my house so that at least when the pain started, I wouldn't have far to get home.

Days passed, weeks passed. I became a very unhappy person. It killed me to see other people posting their long, long training runs and happy smiling faces. I took a leave of absence from podcasting with my friends about our journey to Javelina.  I knew I had to accept that there wasn't enough time, I wasn't going to make it there.

School started again, both for Will and me.  One of the classes I had worked very hard preparing got canceled, because whoever was in charge of putting it on the registration website had forgotten to do so, and therefore no students had known about it or been able to sign up. I guess I should have made sure that other people were doing their jobs, but I didn't check until it was too late.  Unlike real professors, when one of my classes gets canceled, I just don't get paid.  Maybe that doesn't really matter. I get paid so little anyway.  I would have said my life felt like a joke, but really it felt more like a waste.

Second grade started off somewhat promising for Will, because he seemed to like his teacher, but it was only a week until he cried when he got off the bus and asked me, "Mommy, am I dumb?" The education system tests children to within an inch of their lives (sometimes even beyond that), and Will knew that he had been placed into the lowest "reading level" of his class.

"No," I assured him, referring to the two minute conversation we'd had over the summer that changed everything. "You are not dumb. You are dyslexic."

I'd given his teacher a full week into the school year, which seemed like enough of a grace period. It was time to find out what the education system could do for a dyslexic child, and I knew, even as I tried to hang onto a modicum of calm and strength, that I was doubling down for the biggest fight of my life.

What I found out, as I went into the arena, was that it is actually possible to black out from rage. Like, literally pass out from anger at the response you get from teachers and "reading specialists" who don't do a fucking thing for the 1 in 5 dyslexic children in schools. These people often don't even "believe" in dyslexia, and they just look at you, blankly, showing you test scores that assure you your child is "below average" and then suggest that you sign him up for an after school homework club.  Sometimes, as an added bonus, they stress the importance that you make sure he keeps up on his 20 minutes of reading each night--completely ignoring the fact that he can't read because he is dyslexic and they are doing nothing to help him. 

To say that this fight has taken a toll on me is a drastic understatement. For two years I've had to listen to elementary school teachers tell me that my child is basically stupid and they can't understand why he doesn't improve with more of the same. I had to find out on my own what dyslexia is, that my kid has it, and what to do to get him help. It has been a long, long, long and very expensive road, and I am only on the beginning of it. For several weeks this fall, there were nights I went completely without sleep, days I went mostly without food, and I became a husk of a person-- feeling like I was only keeping myself alive so I could continue this fight.  In every way, I am shredded and empty.  

Outside the tutoring center. We will spend thousands and thousands of dollars on private dyslexia tutoring (not to mention, an official diagnosis) because the education system doesn't have enough money to follow the law and screen for learning disabilities or provide Free Appropriate Public Education to all children, even though this is required by the Individuals with Disabilities Education Act. (A school reading specialist who hasn't been trained in the methodology that dyslexic children require is not Free Appropriate Public Education, but having someone called a "reading specialist" is apparently how they get around it).

Near the middle of September, Rob ran the Black Squirrel Half Marathon. After the race, I talked to one of his friends, who had also had an IT band injury, and he gave me the contact information of his physical therapist.  Her name was Teresa, and she used a technique called Dry Needling.  "I've never had an injury she couldn't fix," Rob's friend told me. And I thought, maybe this is it. Maybe I could still salvage the absolute shit show my life had become and make it to the start line of Javelina 100, the race I registered for last May when I thought that everything was going to be fine. I'd been injured for nearly a month, but I had six weeks left to train.  If Teresa could fix me right away, maybe I could make it, and maybe my life would mean something again.

I sent her a text. She replied. Her first available appointment was just a few days away, on that coming Tuesday, during the time when I had set up a meeting with Will's teacher and the school "reading specialist" who doesn't even know what the Orton-Gillingham method is. (Note: the Orton-Gillingham method is how dyslexic children must be taught in order to learn how to read. It was invented in 1930).

Rob offered to go to the meeting alone.

I sold my soul to the devil and told Teresa I could take the appointment.

Teresa lives in the mountains.  Way, way up in the mountains, like a 50 minute drive away from our house on the absolute edge of town, and she sees people in her home.  The last 10 or so miles of the drive are on a dirt road so steep that my Prius started rolling backwards at times.  She doesn't deal with insurance, you pay her in cash.  You sign a waiver saying that she's explained to you the risks of what could happen if she nicks an artery or nerve with the dry needles.  Each appointment costs more money than one of Will's very expensive sessions with his Orton-Gillingham certified dyslexia tutor.

And Teresa is worth every penny.

Sunrise on the long drive up to her house.

She spent nearly 3 hours with me on that first visit.  She figured out that my knee hurt because I have scoliosis. I've always known I had scoliosis and that my back is completely messed up, but what I didn't know was that this messes up my hips, which makes my piriformis pull on my greater trochanter, which pulls on my IT band, and I end up with pain on the outside of my knee.  She stuck needles in my piriformis so that it would relax, and she didn't hit any nerves or arteries.  It didn't hurt as bad as I expected, but nonetheless, I almost passed out. On one of the sticks, my muscle contracted so strongly that it bent her acupuncture needle.

The day after my appointment, I ran 5 miles.  And the day after that, I ran another 7.  All pain free.  None of this shitty half-mile run, followed by a quarter-mile walk.  I was running. For the first time in almost a month, I began to believe I had a chance to make it to Javelina.

My knee started hurting again that weekend, but I made another expensive appointment with Teresa for Tuesday. To hell with all the money we were bleeding out on dyslexia tutoring and physical therapy.  I would sell my soul to the devil six times over just to show up to the start line of this race healthy.

I managed a 27 mile trail run that weekend, 5 weeks before the race. I climbed up the thirteen switchbacks on Howards, and then I stood on Westridge, overlooking the mountains and Teresa's house somewhere below.  I sobbed.  I screamed.  I was so, so angry at what my life had become, at my meaningless PhD, at the future my precious child might suffer because the language processing areas of his brain work differently than that of neurotypical people. 

This is the place where I come to scream.

I made it back to my car at the trailhead almost 6 hours after I'd begun. I learned that there is a well of raw strength inside me that is far deeper than I ever thought possible.  I had eaten peanut butter pretzels during the run to keep up on calories, but I truly believed that if need be, I could run this entire race fueled by rage alone.

Every run after that was double digits. Every day. I went from zero to 50, 60, and 70 miles a week.  I reneged on my beginning-of-the-semester promise to myself that I'd use my time wisely-- develop other courses to teach in the future, keep on top of things in the professionalization workshops I was still in charge of leading.  All I did was run, and drive Will to his dyslexia tutoring (a half hour away) after school. If I was going to sell my soul to make it to Javelina, I would sell it all the way.

The family of Will's best friend invited him for a sleepover on the last night of September, and it worked out well for training.  I made Rob go with me to Horsetooth Mountain after I dropped Will off, and we ran together for 5 hours in the dark.  When most people worry about Javelina, they worry about running in the heat of the day.  I was worried about running in the dark, since I've had problems with nausea and migraines after too many hours of that bobbing cone of light from the headlamp.  Rob and I worked out the details of battery changes and pacing.  At midnight, we stopped for a minute to turn off our lights and look up at the Milky Way. It was October 1st, the day we had met 19 years ago.

19 years ago, I never would have dreamed that one day Rob would make me run up Horsetooth Mountain in the dark.

I kept running through two more weeks of big miles. My knee held up, and it seemed like a miracle. I gradually stopped worrying and waiting for the ever familiar stab of pain to return. I felt strong and invincible. Then, on what was to be a routine morning 20 miler, there was a sudden burning in my left ankle that I feared could only be explained by a ruptured Achilles. I managed to hobble home, but this knocked me down a dozen notches. It made me remember that no matter how good I was feeling, at any moment, the circumstances could change. If this had happened during the race, I would have had no choice but to drop.

A picture from that run.

I texted Teresa, but she was out of town. I panicked.  I gave it a couple of days, dosed myself up on ibuprofen, used my last pre-paid rossiter appointment, and applied massive amounts of KT tape. By sheer force of will, it held up for one more 82 mile week. 

During my last long run of this training cycle, it was 34 degrees and raining. Of all years, this year in Colorado, winter had already begun. This wasn't the best set up for attempting a hundred mile race in the Arizona desert, but it was the best I could do. I reasoned that if peanut butter pretzels and rage could get me through the heat of the day, at least I would be well prepared for the cold of the night once the sun set.  It was time to taper.

Last long run out at Lory

I tapered as hard as I had run. My body was completely beaten up. I'd accomplished everything I'd wanted to during training, but it had been so compressed due to the time I'd taken off for injury.  I was ragged, hungry, and jagged skinny.  So many other areas of my life had been lacking in attention just to get in the miles, keep up the fight as Dyslexia Mom.  My ankle was dodgy at best, and I ran very little during the last two weeks before Javelina.

Pineridge trail, if I squint and add a filter, it looks kind of like the desert.

On the Monday before the race, I wanted to do one more night run and try out the spare headlamp (i.e., the one I'd use only if something goes terribly wrong with my real headlamp).  I felt so terrible on every step of this run. I couldn't quite figure out why.

And then, there it was, the sharp, shooting pain in my right knee. 

I made it home, but I completely panicked. It was too late now to try to get in to see Teresa, or another PT, before we left for Arizona. All of this, all of this soul selling, only to be back in the very same place with the very same pain in my knee. Why did this keep happening to me? Why couldn't I just stay healthy?

Rob and his friend Stephen tried to calm me down. Pre-race jitters. It happens every time. How many races have I run, lining up on the start line with a nagging injury, even a stress fracture, and once the gun goes off, everything is fine? All of them, almost all of my ultras I have run with an injury.  This too would pass. 

I packed my bags like this was still going to happen.  After all, the entry fee had been paid months ago.  Rob's dad had already driven 1000 miles here to take care of Will while we were gone. There was nothing left to do but show up and hope that I could run through 100 miles of pain.

We left for Phoenix. Every time we got out at a rest stop or gas station, I walked around and my IT band snapped, my knee hurt. My ankle was marginal at best. I thought, you know what, I give myself maybe a 10% chance of finishing this thing.  It had happened-- I'd sold every possible soul just to get to the start line, and I didn't have any left to get to the finish.

Thanks for reading. Part 2 to come.

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."