“The gate for research, the opportunity for research, is so wide open” – Ashley Roberts
On April 24, 2023, Ashley Roberts of The Dyslexia Initiative joined us on our expert webinar series to talk about her experience as a parent of a student with both dyslexia and dysgraphia.
Ashley told a heartbreaking story about her son’s initial diagnosis and told the audience, “We brushed [the dysgraphia] aside because he absolutely could not read at all, and we focused on his dyslexia, thinking, we've got plenty of time to come back to his handwriting. I mean, it was an interesting decision to make, knowing what I know now. But given the information that's been available about dysgraphia, it was the only guidance we had, which was, oh, you have plenty of time to address his handwriting. And so here we are 2023 and we're on a new road…”
While detailing her and her son’s journey, Ashley discussed the importance of explicit writing instruction and suggested resources that she has found to help. But the discussion came back to the clear need for more knowledge. “The more research that we create, the more it’s going to serve the greater community as a whole.”
During the webinar, we heard loud and clear from the conversation in the chat, that many other parents are struggling to advocate for their kids with dysgraphia. They want to understand what is happening and how to help. They also feel lost and frustrated.
“I am having a hard time finding resources to help my 12 year old with writing. It’s his main source of anxiety.”
“I recently found that my 6th grader was never taught how to write an essay. I know that his dysgraphia plays into this being hard, but I still am having a hard time believing it never was a part of the curriculum!”
“I want to understand instruction for dysgraphia and not just accommodations. Our dysgraphia experts focus on accommodations, but I want to know what can be done with instruction/skill building.”
“I don’t know how to deal with the school when they just keep saying your child is performing too well to qualify for services. They just don't need help because their grades don't show a need.”
The questions and challenges raised by Ashley and the webinar participants highlight why we need research and also why focusing on the lived experience of people impacted by dysgraphia (students, parents, educators) is a critical piece to advancing research.
To ensure that research is designed to answer the most critical questions, we must focus on family-centered outcomes and compare different interventions and approaches to each other to establish what works best for people with dysgraphia. This type of research – known as PCOR/CER for “patient-centered outcomes research/comparative effectiveness research” – can answer the questions most important to the people impacted and help inform family decision making.
A huge thank you to Ashley for sharing her story with our community and for helping highlight this critical need. Dysgraphia Life intends to be a driving force promoting more research that takes into account Ashley’s experiences and the experiences of all of you in our community. Learn more about our efforts here.
Dysgraphia Life's expert live webinar series is free to our community and happens throughout the year. Our next webinar will be "Testing for Specific Learning Disability of Written Expression: What Parents Need to Know" on Wednesday, May 24th, 2023. You can view the schedule and archive, plus register for upcoming webinars here.
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