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Befriending Dyslexia - Co-authored by Bonnie Ditlevsen & Sarah Olson

It was a couple of years ago at the neighborhood school bus stop when I first met Jane and her only child, Michael. He and my older son, Adam, were both starting second grade, and it was the typical morning routine of sleepy kids lined up, traces of breakfast on some of their faces, others with backpacks half zipped, waiting for the big yellow diesel bus to come chugging up to the stop. Moms or grandmothers stood nearby, steam curling from their mugs of coffee as a light rain fell.


Maybe what I first noticed was that Michael was acting like a kid who’d just been let out of school, rather than a kid about to start the day. He broke from the line after two minutes and scurried up the angled trunk of a tree that sloped sideways from a small hill thirty feet away. No other kid all last year had initiated that action, to go up along that trunk and see how far he could balance himself on it. But there Michael stood, crouching, arms out and hands splayed, steadying his balance like a surfer in a gray hoodie and clean, crisp school jeans, his coolness an invitation to all the other kids to replicate his feat. He commanded all of our attention; I thought I could hear a collective, unvoiced motherly sigh: 
Oh no—now all of them are going to want to climb that tree. Why’d he go and start that? 

“Michael! Cut it out and get back in line!” Jane yelled, the herbal tea in her mug tilting precariously to the left. 

“Mom! It’s great up here,” he yelled back. I looked over at him, happy up there on that trunk at that bold height, all the other kids now surrounding him like he was the Pied Piper of Naughty. 

 “Adam! Ian!” I yelled. “The bus is coming!” It wasn’t, of course. The street was still empty, and my boys didn’t heed me. I realized how uncool, and parental, I sounded, but still, I didn’t want kids getting their clothes cruddy or getting scraped up before school. My reflexes told me that this Michael kid was different, some kind of freedom-seeking instigator. 

Naturally, Adam and Ian became Michael’s loyal friends and constant neighborhood companions that year; as they did, I added other descriptors to my mental file of Michael’s traits: 

Leader: Michael, unlike my two sons, had a natural knack for arranging people and directing games. It’s these guys against those guys and the mission is this, that and that, he’d tell the other kids playing with him, and they’d all fall in line and the game would commence. 

Natural-born sculptor: “We’re making spears, Bonnie. Look!” he said, and demonstrated for me what he’d shown the others, how he cut a groove into the end of a large stick, wedged a shard of bottle glass from the storm drain into it, then secured the glass in place just so with twine from his dad Carl’s toolbox. “Presto,” he’d say, “a spear, just like real cavemen used to use!” The three boys would climb up trees and sit there for an eternity, hooting and grunting Neanderthal threats to dog walkers and passing cars. 

Assembler of toys, no directions required: Michael and my sons would get Lego sets as gifts, and it was clear that while Adam and Ian knew to unpack the bags of bricks in numerical order, following the instructions in linear fashion, Michael’s process consisted of ripping open all the bags at once, studying the color picture on the Lego box, and doing his thing. 

“You’re not following the instructions,” I once heard Adam chide. 

 “I don’t care,” Michael said. “I’m building it my own way.” 

And he would. Contrary to my expectations, Michael seldom loused up the making of a Lego troll fortress, fighter plane, boat, or Batmobile. Sometimes he actually improved on the look or functionality of something. And my sons would sit there, having dutifully just done what the Lego instructions told them to, amazed that Michael could arrive at the exact same outcome minus the manual. 

Deeply unhappy schoolchild: Little did I know at the time, because I didn’t yet know Jane or Michael very well, but that first moment on the tree trunk was a kind of proclamation: Look, everyone, at how cleverly I can spend my free time. Because you don’t see that after the bus comes, my freedom ends. 

School meant reading and writing. Michael floundered, yet no specific-enough testing occurred to identify his learning issues. He was popular, after all, healthy, and well looked after. He played ice hockey and even golf. In expressing himself in words, even the misspelled ones on paper, Michael was in fact extremely fluent, and enjoyed the encouragement of being an author so much that his second grade teacher chose him as the sole class member to take part in a special writer’s workshop one Saturday, taught by a children’s author. 

Jane tried to maintain open communication about Michael’s academic progress every year, but each passing month of second grade seemed to bring on worsening behavior on his part, something the release valves of PE class and recess couldn’t lessen. Very often, Michael refused to go to school in the mornings. 

“Circle time is hell for him,” she once remarked, when I asked her why he hadn’t been at the bus stop one morning. 

“How so?” 

“He’s the only one who can’t stay in the circle. We’ve talked about it— Just sit on your hands, Michael, is what I say. He can’t do that. So he kneels, but then his knees start to hurt. He winds up with his legs stretched straight out in front of him. Everyone else is ‘crisscross apple sauce,’ so Michael is being distracting to the circle. It’s driving Mrs. Anderson crazy, I’m sure.” 

“Circle time. Sounds like being in one of those circles of hell from Dante’s Inferno,” I chuckled, though it wasn’t funny. 

I felt sorry for Michael. Was this just a “boys will be boys” issue, ants in one’s pants? Or did he have an attention deficit? I wondered what it would it be like to be him, to find it so agonizing to have to sit still with legs bent, listening to someone going on and on. To see everyone else in the group sitting quietly, listening, while his attention had long since moved on to something different, something his body then couldn’t help but follow. 

“He doesn’t want to read. And he doesn’t want to be read to, either. Like his mother. I was in remedial reading. Even now, you can barely get me to read a book.” 

This was true about Jane, though I’d never before considered it. My downstairs was filled with bookshelves that teemed with not only kids’ books, but also my own favorites: Toni Morrison, Tim O’Brien, Mark Twain, and anthology after anthology of prizewinning short stories. Her living area featured gorgeous glass art, beautiful framed photos, stylish furniture, and only a couple of handsome coffee table books on display. 

Then she said, “I talked to Carl, and we’re going to have Michael tested for dyslexia.” 

“Dyslexia? Do you think he has that?” 

“Yeah. I do. I have it, and I think he does, too.” 

“Were you diagnosed?” 

“Never officially as dyslexic. My parents had their suspicions as early as my kindergarten year, but I didn’t get tested until second grade. The diagnosis they gave was rather vague…not dyslexia, but a ‘reading disability.’ So I was just shoved into remedial reading groups. I was retested in ninth grade and by then, they found that my situation was far worse than they’d previously thought.”

“Man.” I thought about how neither Jane, nor Michael, looked like they had anything out of the ordinary going on. They appeared the complete opposite of people with “disabilities.” In that moment, I realized that it was the invisibility of their experience that seemed so ironic, and cruel. Their teachers and administrators couldn’t see this vast thing going on, so…how could they empathize? 

How could I, their friend—and my kids, Michael’s friends—begin to understand, and empathize? 

Jane continued. “I squeaked by in all the assignments where a lot of reading was required. I hated it. When they did ‘round robin’ reading of paragraphs in class, I always made sure to excuse myself from the room right when my turn would come up. You know, if I hadn’t been sociable and popular, school would have been pure hell. For crying out loud, it took me until age 27 to figure out theretheir and they’re! And now that I see Michael showing these exact same signs that I did in elementary school, I want to do something for him.” 

I started to look for Michael’s dyslexic traits after that. Sure enough, whenever he came over to our house, which was often, and Adam or Ian felt like reading something, Michael would urge them instead to grab jackets and head outside to the pine trees, or engage in Nerf warfare on our staircase. Sometimes my boys would comply, but at other times when they’d tune in to a book they liked, I saw that Michael would quickly get upset. 

“Why don’t you each take turns reading sentences of the story out loud?” I once suggested. Their collective eye rolling was my cue not to attempt teacherly-type interventions like that again. 

I began to view Michael through a different prism now that he was in the pipeline for dyslexia testing. Here was a kid attending a public school since Day 1, and having difficulties both behaviorally and academically, yet the school itself offered him nothing except a pull-out remedial reading program that only aided him in a minimal way before he “plateaued.” Jane told me Michael’s dyslexia screening would cost several hundred dollars and would involve documenting their family medical history, interviews with the parents, and hours of testing, something Michael might find unbearable. “I know he’s got it,” Jane said. “How could this NOT be dyslexia?” 

“The report will help you get the right help from the school,” I offered. 

“I can only hope.”

Sure enough, the results came back in August: Michael’s dyslexia was classified as moderate to severe. In spite of Jane’s instinctively correct guesses about her son’s condition, she told me that the news devastated her; a lot of tears flowed. Armed with the thick, detailed report, Jane approached the school administration about creating a 504 plan—the 1973 federal Rehabilitation Act mandating special accommodations for students like Michael. First and foremost, he would receive school counseling guidance about understanding his dyslexia, including fielding his questions about whether someday it would “go away.” 

He would no longer be required to take notes from the whiteboard, do spelling tests, or complete certain mathematical tasks without a calculator. He would be opted out of the reading portion of state standardized tests for not reading at grade level, and for all math testing, he would get a private testing area and have test items read aloud to him. His team of teachers would be briefed about his learning differences and unique needs; his accommodation requirements would be on file, at the ready for anyone unfamiliar with how to teach him. 

On our summer vacation to New Jersey my family fell in love with Bananagrams, the competitive, Scrabble-like table game. We returned to Portland with our own big set of the letter tiles. “Let’s play Bananagrams with Michael!” Ian said. 

I stopped him in his tracks. “Uh, let’s just skip the Bananagrams when he comes over, Buddy.” 

“Why?” 

How was I going to explain this? 

It was time. I wanted the boys to understand Michael’s dyslexia in order to better play with him in his time away from school. I wanted them to begin to understand his learning differences just as I was beginning to understand them— that for Michael, according to Jane’s description, printed words bounced. Letters, well, they literally bounced on the page. For Jane and for Michael, black text on white paper was distractingly glaring. And something like practicing for a class spelling bee was anxiety inducing far beyond what was healthy. 

How to explain this to my kids, who picked up a book without a second thought, who laughed at all their quick, clever crossword creations in Bananagrams? How to tell them that Michael had been diagnosed with something that is for life—that sometimes, wrongly, is thought of as a handicap, a disability, but is actually a learning difference? That when Michael’s cartoon bubbles were riddled with first-grade-type spelling errors, it was not intentional, and it didn't make his stories any less in terms of quality? How to help them appreciate that Michael was in fact just as capable academically as anyone else, and that he could have a bright future even though he hated their school? 

“Boys, I want to explain to you that we now know that Michael has dyslexia. A game like Bananagrams won’t be any fun for him, at least not the cutthroat way you like to play it. You see, words— the sounds, and spelling, and writing of words—cause a bit of trouble for him. Maybe you can find other things to play, things that don’t revolve around jumbled letters and the spelling of words.”  

Ian and Adam wore faces of concern, like Michael had developed some sort of terminal disease. “Dyslexia?” Adam stammered. “Will he get better from it?” 

“Boys,” I said, smiling, “you misunderstand. Dyslexia isn’t a disease like leukemia, or a brain tumor. He’s simply been found to have a different wiring of his brain than a lot of other people. He takes things in differently than you or I do. Jane has dyslexia, too, and it’s likely he inherited it from her. He has to learn school stuff from now on in a different way than most of the other kids in class do. Michael’s fine. He just had this testing done over the summer to figure out why he’s been wrestling so much with reading, spelling and handwriting. Trust me, he’s fine. Finer than fine.” 

But they looked unconvinced. When Michael dropped by later on, I saw Adam go to the dining table with his most recent cartoon strip and start reading the text of it out loud for Michael—a bit too loud, as if this newfound dyslexia also meant he was hard of hearing. 

“We can all hear you, Adam,” I called out from the living room in a cautioning tone. I wondered whether my attempt at explaining things had helped, or if I should just have let sleeping dyslexic dogs lie. 

Fall rolled around, and once again, the three boys lined up, now taller and lankier, at the bus stop. Jane was excited about the year to come, because she’d conferred extensively with the principal and the counselors. Empowered by the report, the 504 plan, and everyone’s heightened awareness, Jane crossed her fingers that Michael’s teacher and classmates would show him just the right empathy. 

The demands of the third grade program, though, were such that in a matter of a month, Michael was once again miserable each morning. For a popular boy who showed such excellence through physical activities, painting, sculpture, and the creation of his clever albeit misspelled cartoons, it seemed unbelievable that he would not want to go to school. Weren’t these supposed to be the “golden years” for a kid? 

“Homework that might take Adam ten minutes at your kitchen table?” Jane lamented over midmorning tea. “It’s World War II at my house.” 

“Trenches of France?” 

“Yep. He cries, he storms off, he fights me at every turn. I’m having Carl help him with some of it, and trust me—it’s no picnic for him, either.”

“Does he get everything done?” 

“No. Not after an hour and a half. After that, Carl or I just write Mrs. Griffiths a note saying we can’t finish. What bothers me is that she’ll send home whatever Michael couldn’t complete during class time, like we have time for that in addition to his weekly homework.”

“What about the 504? Isn’t that supposed to be the magic bullet to stop all this madness?” 

“Well, if I had a dollar for every time I’ve called the office to talk to Guidance or the principal, I’d have the money to send Michael to private school.” 

“Wait. Wasn’t getting testing, and then the 504, supposed to bring everyone on board with how Michael learns differently, and how they’re supposed to accommodate him?” 

“It’s in his file, Bonnie. But that doesn’t mean people do what’s recommended in there. Just last week, a sub made him take notes from the whiteboard, and when he complained, she threatened him with losing recess.” 

“Well, I’d march right in there and—

“Oh, I march. I march. But when he goes to another room for science and that teacher admits she’s never read his 504, and she yells at him for his behavior and marks him with bloody red ink for spelling, I feel ready to throw my hands in the air and give up. I've told Michael that from now on, his progress reports from that school will mean absolutely nothing to me, and he can get all zeroes and F’s in that place from now on, because nobody there will ever understand him.” 

Her change in attitude worried me. I’d truly thought that the 504 paperwork would give this boy a whole different school experience. All of Jane’s newfound courage and confidence seemed to quiver and shake right before my eyes. 

“It’s the system, Bonnie,” she sighed. “It feels as though all of these teachers and other people aren’t really up to date with what they need to know about dyslexia. Dyslexia is recognized on the state level. And they have recommendations in place on how to go about teaching a kid like Michael to learn to read. I just wish the school were really in the loop.” 

“Yeah. I mean, it’s the teacher with 26 kids in the room who has to deal with his failures and frustrations all year. Wouldn’t it stand to serve everybody to have the latest and most updated training, along with the full screening information about a kid? I’d certainly want to know exactly whom I’m working with all year, and how best to. Don’t you think?” 

“Of course. I’ve tried. I’ve done the testing, and gotten him the 504. He hates school. So Carl and I will have to come up with the money to send him to a private school, if we can find one.” 

“So…you can lead a horse to dyslexia-awareness water, but you cannot make him drink.” 

“Pretty much,” Jane frowned. 

In December of Michael’s fourth grade year, Carl and Jane took him to visit a private school 30 miles away, one exclusively for students with dyslexia. Michael was thrilled to be there, to see kids with his learning difference sitting on bean bag chairs, some with headphones on, others learning at a table in small groups.  “I went to a school where everyone was just like me!” he told us that evening, beaming. 

But the cost was too prohibitive for Jane to pull him from public school, so there he stayed. In January, on the heels of a series of classroom frustrations, he created a short graphic novel-type comic book about a day in fourth grade where he took, and completely failed, a scheduled spelling test. The cartoon Michael, on page 4, sits spacing out at his little desk, concentric black pencil circles of surreal confusion swirling out to the edges of the page. His cartoon-character victory at the end? Celebrating a zero out of 12 grade with his paper raised in triumph, the cartoon bubble saying I finished. I was so, so happy. As I compared them to the answers, I got them all wrong. Yay, yay, yay, yay, yay! I smiled at this little pencil booklet, a heartfelt message to other dyslexic kids just starting out their spelling careers: Don’t fear the failure to come. Embrace it, laugh at it even, because school can be a pretty nutty place, a place where they expect you to do things you can’t. 

On the last page, a parting shot: Just to let you know, don’t beat yourself up. Go up to your friend and say “I bet you can’t get them all wrong!”

He spoke his truth in that comic book. 

Yet I felt for Michael. His situation was unlike so many other cases of dyslexia families where teachers and administrators have kept a child’s needs close to heart, where the parents, the child and the school all gain a steady understanding of what it takes to work together for the best possible outcome. 

There is also a danger in believing that by changing schools, by opting for private education, a child with dyslexia will be better served. There are indeed private schools offering specific, targeted dyslexia services by appropriately trained staff. But a lot of private schools are in the same boat with public schools; across the board there is a lack of specific training to properly address dyslexia. Teachers in all schools need the benefit of more training and education. 

I think that in the world of education, both public and private, people need to “toot the horn” of the dyslexic person’s actual experience a lot, lot louder. More people need to realize more fully what dyslexia looks like. I know I had a steep learning curve just being a caring friend to a family with this invisible learning difference. It takes a lot to be an educator, or to lead a team of educators and support staff in a building. I can’t begin to imagine the pressures at the district level to be all things to all people. There are numerous special interests at stake. How to prioritize? Dyslexia awareness is steadily growing, so how can we do even more to raise consciousness on everyone’s part? How can we prevent the kind of school week happening that causes a kid to write a comic book like Michael’s? 

My own two boys did not need to be dyslexics themselves for me to begin championing better dyslexia education for all, especially for a child’s playmates and classmates who would perhaps tease, ridicule, or think badly of a richly bright, capable boy like Michael. Most importantly, the friends, family, and educators of a dyslexic learner need to understand that progress can and will take place over time, even though no magic pill or diploma will bring an end to someone’s dyslexia. Carl, Jane and Michael have a difficult journey ahead of them but there is great hope. I feel it. I see the change in my boys’ consciousness and hear their almost nonchalance when they talk about their friend. 

Adam and Ian describe it like this: “Our buddy Michael has…dissLEXXiiaahh…that’s when you have problems reading and spelling stuff. Words kind of give him a hard time. But he’s an author! He writes comic books! His brain is just wired differently than some other people’s.”

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—Originally published in the Oregon Branch of the International Dyslexia Association, TimberLines Volume 2011, No. 2, May 2011

 

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American writer and editor of Penduline Press, Bonnie Ditlevsen is a parent to two boys and a dog. She studies Renaissance and Baroque vocal music and performs regularly as a soprano with the Bach Cantata Choir and the Trinity Choir in Portland, Oregon. In her free time she volunteers at an animal rescue organization. 

 

 

 

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Sarah Olson was born in Invercargill, New Zealand, one of the southernmost cities in the world. Her travel-enthusiast parents took her to many locations abroad, ultimately settling in the United States. She is a graduate of the Art Institute of Portland. Sarah is the Art Director at Penduline Press. 

 

 

 

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1 comment

  • Comment Link rocky Tuesday, 28 November 2017 14:48 posted by rocky

    Whoa! What a wonderful article! Truly, it left me thinking!

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