A daunting journey, but profoundly rewarding

Parents of children with reading difficulties learn to be diligent and willing to advocate.

This article was originally published in The Notebook. In August 2020, The Notebook became Chalkbeat Philadelphia.

Parents of struggling readers come from all walks of life, but they all have one thing in common.

That moment when they realized that something wasn’t quite right.

“He just wasn’t getting it – and I couldn’t figure out why,” said Erica Fields, a mental health caseworker from West Philadelphia.

“He’d say, ‘It’s all a bunch of letters, and they’re not coming together,’” said Tine Hansen-Turton, a nonprofit executive from Gwynedd Valley in Montgomery County.

“It wasn’t until we had our second son that we realized, ‘Oh,’” said Jo-Ann Rogan, a musician in Wissahickon.

The moment may arrive in kindergarten or 1st grade, when a child starts acting out or falling behind. Or a few years later, when coping mechanisms like memorization finally fail.

But whenever it comes, that moment is confusing and stressful, and it marks the beginning of what can be a grueling journey for the entire family.

At first, “it was almost a sadness,” said Deborah Lynam, a former graphic artist from South Jersey. “I was watching my neighbors, my friends. Their kids were reading. They liked going to school. And it was very clear that my son wasn’t making benchmarks.”

Lynam’s moment arrived when her eldest son was in 2nd grade in Haddon Heights, Camden County. He’d had issues for over a year, but she still hoped the school’s various interventions would eventually work.

But then one day, the boy’s teacher finally said, “I’m not sure if anybody’s really telling you, but … he’s not just ‘behind.’ He’s not reading.”

It was a blow. After Lynam’s sorrow came anger – mainly directed at her school district. But that ended when she started to work with other parents. The problem is everywhere, she discovered, and schools of every description struggle to address it.

“Is it an emotional toll? It’s terrible. Terrible,” said Lynam, who went on to help found a national advocacy network called Decoding Dyslexia.

“But it’s hard to stay in that angry place when all of a sudden there are 12 other parents dealing with the same problem, or worse.”

Never take no for an answer

With the right diagnosis and intervention, these families have found, children once swamped in confusion can make tremendous strides.

But getting there requires their parents to become informed, relentless advocates.

The stakes couldn’t be higher, Lynam said. Dyslexia – a term covering a wide range of reading disorders – affects as many as one in five students nationwide. It’s no accident that levels of dyslexia among prison inmates are much higher. One study in Texas found that almost half of its inmates are dyslexic.

“We have to start talking about this,” she said.

Any number of other disabilities and environmental factors can have the same effect. A parent who has discovered a learning deficit must respond quickly – and get results.

“You have to do your homework – and you have to be willing not to take no for an answer,” said Fields of West Philadelphia, whose son Mikal struggled in his neighborhood school before finding success in a specialized charter.

The landscape that families face is daunting: expensive tests and tutoring, vexing bureaucracies, uneven resources. Underfunded districts can be overwhelmed. Even prosperous districts and pricey private schools can be unprepared. Students find themselves changing schools. Siblings feel ignored. Parents may quit their jobs.

“I had to give up my career and go back to bartending,” said Rogan.

Was it worth it? Absolutely, she said. Her son Ryan, now in the 6th grade, is “doing well, and he’s happy.” Gifted with a high IQ, but diagnosed with a handful of learning and motor-skills disabilities, Ryan is now at Education Plus, a charter for students with “learning differences.” In two years, he went from being 3½ years behind grade level to just half a grade behind.

“To me, that’s incredible,” Rogan said. “He’s being treated with respect and loved and listened to.”

That’s a major turnaround from Ryan’s early years. A promising start at his neighborhood school, Cook-Wissahickon, turned sour by 2nd grade. A key special education aide left, a strict new teacher arrived, and Ryan was soon foundering in the classroom.

“They sat him in the back under the pencil sharpener,” Rogan said.

Feeling singled out and berated, unable to do his work, he began acting out, and the family was soon embroiled in draining battles over harsh discipline and the details of Ryan’s Individualized Education Program (IEP). At one point, the family was spending entire weekends on homework. Rogan was exhausted, and the boy was traumatized.

“It was horrific,” Rogan said, her voice cracking. “And he was in 2nd grade! He was little!”

Erica Fields’ son Mikal doesn’t have Ryan’s specific disabilities, but he too struggled; slow to pick up the basics, he suffered academically and socially.

“The other kids didn’t want to play with him,” Fields said. “He was the outcast.”

Mikal left his neighborhood school, Daroff, and he, too, landed at Ed Plus, where extra attention and a phonics-based curriculum helped him get over the comprehension hump.

“Now he’s getting it,” Fields said. “At home, you’ll say a word, and he’ll try to spell it out. He likes books with a little sense of humor.”

Ed Plus’ future is uncertain, due to a dispute with the state over its hybrid cyber/brick-and-mortar model. But for now, Fields said, Mikal is happier, more confident, and “has learned how to make friends.”

An elusive, unfamiliar problem

Success for families means finding the right resources. Every school and district is different.

But the first and perhaps hardest step, parents say, is to fully commit to grappling with an elusive, unfamiliar problem.

“You’ve got to give up control – or the illusion of control – and realize that your child is going to do their thing,” said Hannah Rhodes, an engineer living in Point Breeze, whose daughter Abi is dyslexic. “Who she is is very different from who I am.”

Rhodes’ son, two years older than Abi, started reading on his own. His sister eagerly tried to imitate him, but by 2nd grade, it was clear that she was wired differently.

“She had the interest, but also the roadblocks,” Rhodes said. “She did a lot of guessing.”

Faced with the prospect of holding her daughter back a year at Independence Charter School, Rhodes instead pushed for a better diagnosis. The school psychologist uncovered an ocular condition (strabismus) and got Abi an IEP with a simple program of instruction and eye exercises.

A summer program at the Springboard Collaborative gave her an extra boost. Abi, now in 3rd grade, is cheerfully “cruising along,” Rhodes said – closing in on grade level literacy.

Rhodes feels grateful to have found quality support close at hand. “Everybody’s like, ‘We can fix this!’” she said. “She doesn’t have to have an IEP forever.”

But she also knows not everyone is so lucky. “I was treated as an asset and not as a liability, which is huge. But I had to trust these people.”

Be ready to collaborate – and fight

Accepting the problem isn’t easy.

“You fight it,” said Tine Hansen-Turton, whose dyslexic son struggled in both a suburban public school and a private school before settling in happily at the private AIM Academy in Conshohocken. “You’re somewhat in denial, until you recognize, ‘Oh my God, I’m actually harming the kid unless I do something different.’”

But once a family commits, parents say, the keys to success in any situation are diligence, collaboration, and perseverance.

“You have to be your own case manager,” said Lynam. “And you need to work collaboratively with the school.”

And if that doesn’t work, “be prepared to fight,” said Rogan, who doesn’t know what she’ll do if Ed Plus shuts down – she only knows she won’t send Ryan back to his neighborhood school. “Get a lawyer. This is your kid. You don’t get a second chance.”

It’s a marathon, not a sprint, they caution.

“You’re not ‘cured,’” said Hansen-Turton, whose son is now college-bound, while she sits on the Ed Plus board. “He’ll always have issues.”

But the rewards of success are profound. It lightens parents’ hearts to see their children thrive, relieved of the lead weight of feeling “dumb.” And they’re delighted to turn their attention to more normal family activities – like taking the kids on tour with mom’s punk rock band.

“I was able to take him across the country and back – and he did amazing,” Rogan said. “He reads himself to sleep every night.”