Piecing together the puzzle

That mother was Margaret-Lee Thompson, who went on to start the King County Parent Coalition for Developmental Disabilities. When Thompson’s son Dan was a child in the 1980s, there wasn’t much hope that kids like hers with Down syndrome would achieve an independent life.

“She refused to send him to Rainier [School in Buckley], which was the advice then,” Burchett said. “She started teaching him to read when any other child would start learning to read. And because Dan learned that vital skill, he was able to get a job in the mailroom at Microsoft.”

It was a job Thompson excelled at — and loved — for 15 years, until his death at the age of 36.

“When Dan passed, Microsoft lowered their flags to half-staff,” Burchett said. “It’s just of such vital importance, being able to read. So before my son was even born, I realized literacy was going to be one of the keys to him really living a full and productive life.”

Groundbreaking research

Burchett has volunteered for her family to participate in The Reading Development Project, a four-year effort made possible by a $1.4 million grant from the National Center for Special Education Research, led by University of Washington College of Education Professor Roxanne Hudson and Associate Professors Elizabeth Sanders and Carly Roberts.

For the project, Hudson said the researchers aim to engage 135 area families of students in grades 1-3 with Down syndrome, Autism Spectrum Disorder (ASD), developmental delay or multiple disabilities — basically any condition that leads to intellectual disability (ID), which means they have significant needs in cognitive and adaptive skills.

They’ll also work directly with the teachers of the kids in the study, in Seattle Public Schools, Mount Vernon School District, Chimacum Public Schools, Franklin Pierce School District and Highline Public Schools.

Now in its first year, the project will study how children develop in important skills related to reading and writing, assessing their progress once or twice a year over a three year period so that the final data will reflect the reading development of students in grades 1-5. Researchers will also talk with teachers and parents to learn about literacy practices and long-term goals, both in homes and schools.

“We’re also working hard to have a culturally diverse sample,” Hudson said. “We want to include as many children of color and multilingual families as we can.”

Hudson said that while some studies have been done on children with specific conditions like Down syndrome, no U.S. researchers have tackled a study involving the wide diversity of kids with ID, regardless of the reason — especially not on such a large scale.

“We don’t know much about their development, we don’t know what skills develop in what order and what rate,” Hudson said. “We don’t know if they have a typical trajectory like everybody else but a little slower. We don’t know if the skills and knowledge that they have unfold in a different order than in typically developing kids — we just don’t know a lot of things that will be helpful to teachers and families.” 

Fighting low expectations

That lack of basic knowledge about how kids with ID learn to read has led to chronically low expectations in schools, Roberts said. And those low expectations have led to poor long-term quality of life outcomes for kids with ID.

Despite the growing research in this area, Roberts said there are still “a lot of assumptions that people make about students with ID.” Unfortunately, Roberts said, most of those assumptions are negative — almost exclusively focusing on what students can’t do.

“So this was an opportunity to try to find out what exactly is happening in schools and in homes around literacy,” Roberts said. “I think this project can highlight innovative ways that teachers and families are thinking about literacy and engaging in literacy practices. We hope to celebrate some of the things teachers, families and students are doing really well and challenge and expand traditional conceptions of literacy development.”

A spectrum of neurodiversity

“Special education came out of a history of a medical model where teachers wanted to ‘fix’ people,” Hudson said. “We [used to] think of people who don’t read and write and learn the same way as the majority of children as having something wrong with them.”

Hudson said a more productive way of looking at students with ID is by removing the lens of ableism and thinking in terms of a “spectrum of neurodiversity,” where learning differences are simply seen as different ways of doing things.

“When you take an intervention with the thought that you’re going to fix someone, it’s not very helpful to them. And it’s not very helpful to our society,” Hudson said. “Instead, it’s better to start from what they can do, what they’re good at. We have to change the way we teach, depending on who’s in front of us and what their strengths are. A strengths-based approach requires acknowledging all the things kids can do well now.”

Reading is power

“I think sometimes people just think of literacy as reading and writing,” Roberts said. “But I think of literacy as the ways we communicate and engage with the world around us. Literacy has the opportunity to open a lot of doors for students.” 

One of those doors is ensuring that students with ID are educated in inclusive environments, as opposed to the historically self-contained special education classrooms where the majority of students with ID currently receive instruction. Inclusive instruction is more than just physically being in a general education classroom, it means creating schools and classrooms that disrupt ableism and provide opportunities for students with disabilities — as well as students from other marginalized groups — to be part of a community that values them and supports meaningful learning.

“Having teachers who understand reading development in this population is a way for them to have more appropriately ambitious goals and provide better instruction — and hopefully give kids access to more inclusive environments,” Hudson said.

“When I think of reading and writing for many people with ID, I don’t think of just reading a physics textbook or other important academic reading,” she said. “I also think of reading a text from their mom, or writing a text to their friends, or writing a post on Reddit, or reading the forms from their doctor’s office or a bus schedule.

“When you have enough education, in this case reading and writing, you can choose if you want to be a plumber, or an electrician, or go to college, or into the military or whatever it is you want to do. You can have political power. You can have economic power. You can connect better with family and friends. You can make your life better.

“We’re just trying to figure out a starting spot.”