The launch of a new advocacy group and introduction of a grant program for schools a year ago were steps forward for children living with dyslexia in North Dakota.

Decoding Dyslexia North Dakota, a grassroots organization, formed to bring awareness and encourage children with dyslexia, said Anna Hoover of Williston, who personally has struggled with dyslexia and now serves as outreach coordinator for DDND.

“We have started in our state to have the conversation about dyslexia, about using its proper terminology,” Hoover said. “We’re in the baby steps right now.”

Dyslexia is a learning disorder characterized by difficult reading, poor spelling and writing and late speech development. According to the Dyslexic Center of Utah, 15-20% of the population has a language-based learning disability, and 70-80% of people with poor reading skills are likely to be dyslexic. Dyslexia can occur in children with normal intelligence and vision, and most children with dyslexia can succeed in school with tutoring and specialized education programs.

DDND holds virtual meetings a couple of times a year and is working on creating more supports for parents.

To observe October as Dyslexia Awareness Month, DDND conducted a T-shirt design contest. Contest winner Aubrey Kleser, 12, submitted a T-shirt quote identifying people with dyslexia as “inspiring, unique, courageous, smart, brave, creative and determined.” T-shirts are available for purchase until Oct. 21 by emailing DDND president Justine Gibbon at justineDDND@gmail.com or messaging Decoding Dyslexia-North Dakota on Facebook.

Last July, DDND paired with the North Dakota Association for Gifted Children on a joint presentation about gifted children with dyslexia.

“Dyslexia is a very complex disability,” Hoover said. “Some people are very severely dyslexic and some people are mildly dyslexic. Each child is unique in their gifts and talents.”

Rep. Michelle Strinden, R-Fargo, a parent of a child with dyslexia, sponsored state legislation last year that launched a pilot program in which school districts could apply for grants to screen for dyslexia.

As a rural state, resources are limited for dyslexic children, but private programs offering special help and tutoring for children are available in Fargo, Bismarck and Williston.

In Minot, Minot State University provides assistance to families through its Dyslexia Project. Lisa Borden-King, a teacher education instructor and director for the MSU Reading Clinic, said the project is less actively involved in research than it had been originally, but it remains engaged in consulting with parents and teachers, giving intervention advice and offering the reading clinic. Graduate students also have provided learning help to children during the summer.

Borden-King said there is concern about defining the cause of dyslexia too narrowly and trying to apply interventions that serve some children to other children who don’t benefit from those interventions.

“If you look at the research, what you find out is that there are clearly subtypes, which makes sense. But it’s hard research to wade through, and so it really needs to be a conversation that connects experts in the field with parents, with educators,” Borden-King said.

Without recognizing subtypes, schools and parents can have dyslexia definitions that don’t match, she said.

“It’s very frustrating for everybody, and also for the kid, who is already frustrated enough,” she said.

Borden-King said the value of DDND is in its ability to help break through the isolation families and individuals feel.

“It gives them a way to impact the public conversation about this, which is important, because, honestly, as parents, they know their kids better than any external official or assessor or teacher,” she said.

Parents interested in MSU’s services can contact Borden-King at lisa.borden-king@minotstateu.edu.

People can connect with DDND on social media through Facebook, Instagram or Twitter.

“We’re just trying to get everyday North Dakotans to understand what it is to be dyslexic, because it is such a hidden disability. It’s not visible,” Hoover said. “It’s always been in our schools, but we may not have used the right terminology. We may not have diagnosed it properly. You can’t tackle something you’re not aware about. So for our organization, our main goal is to just bring awareness to our state.”