Roughly 1 in 5 Massachusetts kids maintains an Individualized Education Plan (IEP). And for those 1 in 5 parents, this year has been especially unsettling. I speak from experience: My fourth-grader, a budding comedian and devoted guinea pig parent, is dyslexic. His dyslexia isn’t severe, and he gets plenty of support at school (I hope) and at home (with tutors, which we’re lucky to have).
And yet. As a remote student, he’s not receiving the full scope of services. I consider myself a pretty low-stress parent overall, but I worry: Am I doing enough? Do I need a doctorate to decipher his IEP? Am I advocating properly — assertive without being pushy; polite yet firm? Will he arrive in fifth grade not knowing what hit him? Will his confidence suffer? What’s he doing in his bedroom all day, anyway?
Usually I shoo those concerns to the corners of my mind where Zoom passwords and dentist appointments live, but when he was asked to enter a writing contest, frustration hit. His ideas were advanced, as his teacher predicted, but he just couldn’t get them on the page.
He worked assiduously on his own and with his tutor on the piece, sometimes tearing up in frustration. I tried to help and morphed into the mom I swore I’d never become: “How about a period there? Why not a comma there?” I’d urge, nearly biting off my tongue.
I know I’m not alone. Dyslexia affects 20 percent of the population, the most common of all neuro-cognitive disorders. It’s especially frustrating for parents who notice that their bright child struggles with skills that seem so automatic for other kids.
“This is an unexpected difficulty in reading in a person who has the intelligence to be a much better reader,” said Sally Shaywitz, M.D., co-director of the Yale Center for Dyslexia & Creativity and author of the newly updated “Overcoming Dyslexia,” a landmark text in the field. It affects a person’s ability to speak, read, and spell — leading to the misguided belief that dyslexics aren’t smart.
After one particularly frustrating day with my son in tears after missing classroom trivia for reading instruction (“Why do I have to miss the fun stuff?”) and me researching private schools that I’d need to sell my house to afford, I contacted Dean Bragonier, director of NoticeAbility, a Cambridge-based nonprofit that helps kids with dyslexia build self-esteem and identify strengths with enrichment curricula and instructor training programs. Bragonier, his wife, and his son are all dyslexic.
His note made my eyes well up. He started with, “Congratulations on your son’s dyslexia diagnosis.” Congratulations! We’d been told everything from “I’m so sorry” to “Don’t worry, he can still go to college” (never doubted that, but thanks) to “Steven Spielberg is dyslexic!” (inspiring, but E.T. is truly not applicable when your kid is sobbing over missing animal Bingo for the 100th time).
After talking to Bragonier and with Yale’s Shaywitz, I took some notes — ones that I hope will help other dyslexic parents who feel completely helpless during this unusual year and beyond.
Create structured, deliberate opportunities for your child to shine. Maybe your dyslexic kid will never adore reading or write in a diary for fun (or maybe he or she will, but don’t force it because it’s what you did as a kid or because it’s what intelligence looks like to you).
“I think that students with dyslexia in particular need the need the opportunity to find out what they are good at and what they are passionate about. For example, if a kid is outside building forts and you’ve got to call him back in because dinner is cold, it’s a clear indication that he is engaged in something that he is so profoundly passionate about that he’s literally losing his sense of time,” Bragonier said.
Seize those moments and make more of them.
“Students with dyslexia [need to be] able to hang their hat on a source of inspiration where not only are they passionate about something, but they’re likely either good or going to be very good at that particular thing. When we find something that genuinely intrigues us, we want to throw all of our mental assets into it, because it’s finally something that we click with,” he said.
It’s crucial to find avenues for those strengths, especially if traditional school feels like a chore. Create outlets for your child that have nothing to do with the classroom, whether it’s drawing or Legos.
“We need to allow them to counterbalance the narrative that they’re being fed in the classroom, which is, ‘Everybody else has read the chapter. Why didn’t you?’ which is clearly cultivating just a feedback loop of negativity,” Bragonier said.
Bragonier remembers being pulled out for special help as a kid — “the first walk of shame we do as human beings”— and how embarrassing it is. He advocates for pullouts that focus on positives, such as entrepreneurship, one of NoticeAbility’s classes.
This reframes the pullouts as a positive, not a punishment.
“Now all of a sudden, everybody says, ‘Why do you get to do that!? Because you’re dyslexic!’ The idea is that, if we can highlight what students with dyslexia do well for themselves, they’ll be able to start to contradict what they’re hearing in the hallways and in the classroom about what they can’t do,” he said.
Don’t compare your child to a dyslexic celebrity. Go to any dyslexia website, and you’ll see a laundry list of famous achievers with dyslexia. Pick your spots. This is inspiring but condescending if trotted out at the wrong time.
“Students with dyslexia have above-average intelligence. We have a terrific BS detector. We’re very quick to identify when people are giving us artificial explanations or trying to prop us up by saying, ‘Well, Einstein was dyslexic!’ You know what, I’m not Einstein. I’m not going to be Einstein,” Bragonier said, laughing. “I’m not saying that I’m not intelligent, but don’t compare me to the world’s most renowned, intelligent human being on Earth.”
This feels like a reach — and can even feel insulting when a kid is struggling just to get his thoughts down on paper the night before homework is due.
Disentangle dyslexia from intelligence. Shaywitz has found that IQ and reading diverge over time for dyslexics. A dyslexic child can be exceptionally bright and also struggle to read. For those kids, it isn’t automatic — it’s hard work. But while dyslexic kids might be slow readers, they can also be speedy thinkers.
Shaywitz originated the “Sea of Strengths” model for dyslexia, wherein weaker skills like decoding, spelling, and working memory are cocooned by a sea of positives, ranging from creativity to vocabulary to intuition and critical thinking.
“At the center is a weakness in getting to the sounds of spoken language, and that interferes with decoding, reading fluently, et cetera. But that weakness is surrounded by a sea of strengths in higher-level conceptual thinking, creativity, critical thinking, and problem-solving,” she said.
This might sound like placating, but if you’re worried about your dyslexic child’s future, take heart: Shaywitz’s 2020 Yale Outcome Study analyzed outcomes for dyslexic and non-dyslexic Yale (Yale!) alums, concluding that “when intellectually able and motivated students with dyslexia are given academic opportunity at a rigorous institution, they can succeed academically, professionally, and personally.”
It’s a finding she called “unexpected yet reassuring,” with dyslexic respondents highlighting how their experiences made them more hard-working, determined, and creative.
“Dyslexic college graduates did not differ from typical graduates in college and the workplace. Parents of dyslexic children often ask about their child’s future. These findings should reassure those professionals (including pediatric neuropsychologists, school psychologists and pediatricians) that dyslexic students can be successful in school and go on to succeed and thrive at selective colleges,” she concluded in the study.
Give your child a role in the family. Bragonier recommended making your child’s neuro-diversity a “secret weapon.” Highlight what your child does well thanks to dyslexia — maybe it’s higher-level mechanical understanding or cooking — and assign him a role in the family. Your child might be the family problem-solver or chef.
“The idea is that your child’s ability to figure something out is a coveted asset within the family unit, that he’s got a reliable, sort of mystical, source of problem-solving that makes his perspective so valuable,” Bragonier said.
Have a comeback for concerned observers. If you have a well-meaning but nosy relative who wonders why your child isn’t reading yet or isn’t getting all As like his brother, be honest and flip it with a positive.
“Well, he’s struggling with reading — but have you seen his art project or lemonade stand where he just netted $150 after a day?” Bragonier said. “Correlate the fact that he’s good at those things because of his dyslexia.”
Make your teacher an ally through transparency. So often it can feel like administrators and parents are at odds, right down to those ultra-formal IEP meetings that seem like an episode of “Judge Judy.” Work collaboratively with your child’s classroom teacher; let him or her know that you’re on the same side, and be transparent about what you perceive as your kid’s strengths and weaknesses.
“Identify yourself as somebody who is shoulder to shoulder with the teacher, wanting the best for your child — as they do for your child as their student — and try to familiarize them with some of the very easy classroom adjustments that they can make, if they’re willing. Use a rhetorical approach: ‘Here are some things that would really help my child, and we as a family would be really supportive of you and want to help you in any way, if you could see a way to implement these things,” Bragonier said.
These don’t need to be stipulations enforced by an IEP, but smaller requests: Don’t ask the child to read in class or put him on the spot in front of peers, for instance. (Bragonier recalled a teacher reading his son’s essay aloud as an example of what not to do.) Instead, let the teacher know what your child is really good at — art! teamwork! — and ask for an opportunity to showcase those gifts in class, whether as the art assistant or classroom helper.
School is temporary; intelligence is forever. If you’re mired in stress right now, keep in mind these words from Shaywitz, who has studied and tracked dyslexics for generations: “When dyslexic children are in school, it is the weakness that is noticed,” she said. “It’s important to know that as children mature, it is the strengths in thinking that become more prominent and define a person.”
Yesterday, my son had a breakthrough with his writing contest. His punctuation and paragraph structure (pain points) might not work as a story, but they worked perfectly as a screenplay, without any pesky periods. Instead of fitting into the traditional box, he did what worked for him. He found a solution. He played to his strengths. He was really proud and read his movie aloud to his grandparents that night. And, Steven Spielberg, he’s available for rewrites.