Heather Schwindt has devoted both her career and personal life to advocating for the dyslexic and learning disabilities communities. A certified Wired for Reading Specialist and passionate spokesperson for families, Schwindt combines her content and advocacy expertise to help families navigate the complex world of special education.
Diagnosed with dyslexia in 1979 and now the parent of two children with dyslexia, Schwindt shared her insights in an interview with Eastside Education Network.
What were some clues you noticed early on that your child might be dyslexic, or might need different/additional help learning how to read?
It’s neurological in its origin… I was the first person identified [in our family]. My husband was identified [as dyslexic] this year. And both our kids.
For my oldest daughter it was colors and letters in preschool. She could tell you what was green or yellow with long lists of words but could not come up with the word “yellow”. She also had issues with learning her letters…. [I]f you asked her to come up with a rhyming word she would give you a homophone [e.g., ‘rose’ (the flower) and ‘rose’ (past tense of rise)].
Learn more from The Yale Center For Dyslexia& Creativity: What is Dyslexia?
My son had more issues with speech. When he was three I remember being worried. I remember asking our doctor about the lack of sophistication and issues I was hearing but could not pinpoint exactly why I was worried. He would swap sounds, such as saying ‘You Nork’ instead of ‘New York’ and ‘butak’ instead of ‘attack’.
I was told he could be understood, and while he had some issues he was in the realm of normal… This would not be the last time I heard this excuse for not moving forward with an evaluation.
He also struggled with writing/drawing for what is normal for his age. His dysgraphia is more impactful that his dyslexia at this point, but I think starting writing intervention at age four and reading supports at five have made huge impacts on his trajectory.
What types of interventions and strategies worked? (formal and informal/school and at home)
Structure and explicit instruction when learning something new with scaffolds until we have mastery with something we struggle with.
Creating systems (check lists/organization system in rooms, binders, book bags, entry area) to support making some tasks habit.
Moving to schools that fully support with staff that have an understanding of their disabilities.
Always planning in more time for tasks.
Parents need to understand what they are looking for in a reading remediation program. Typically, you need structured literacy, but could also need more if it’s a language disorder.
Learn more about how to support learning for dyslexics at the William & Mary College of Education Dyslexia Resource Guide
What was it like advocating for your first clients – your two children?
I stumbled into this while trying to advocate for my own children. I was flabbergasted at how little was understood. As a dyslexic identified in Billings, Montana [Schwindt’s hometown] in 1979, I really thought Seattle in 2012 would have this figured out. I remember fighting to get my daughter’s IEP, getting poor information from the school district, some of which was inaccurate. We felt purposefully deceived in some ways.”
We hired an advocate and did a private evaluation. The result was a diagnosis of severe dyslexia and dysgraphia – this was at the end of 3rd grade. But the school would only commit in the IEP to making one year of growth, although she was much farther behind than one year.
At that point Schwindt’s family faced the choice of either hiring a lawyer or moving her to a private school [Hamlin Robinson] that specializes in helping students like her daughter. They chose the latter. The result? “There she thrived,” said Schwindt.
Schwindt appreciates most families can’t make that type of choice. And that’s why she keeps pushing for change.
Describe the challenges your clients typically face trying to get access to reading instruction that works. Why is it at times so hard? What could make it simpler?
The greatest barrier to getting student appropriately identified and supported is the common misconception that we cannot identify them in kindergarten by law. There’s a huge misconception in our state that students with dyslexia can’t be identified in kindergarten.
We have to get to a place where we understand how students learn to read. [Students need] code-based support and meaning-based support – both. [Too often the] common response from schools: “He just needs time. He’ll figure this out.”
Schwindt explained that early in the process, the team of teachers and therapists at her daughter’s school did not view her as having a ‘real’ disability.
What advice do you have for families just starting out
Trust your gut if you think something is off. If you can, get an evaluation from a neuropsychologist that has a strong understanding of dyslexia. Find a school or highly trained tutor that your student really likes and start early. Do not wait. Find other parents who understand. Share your story with teachers, administrators and legislators.
Schwindt recalled how her past shaped her present:
I was told to join the trades or join the Navy. My parents were told I was ‘retarded’ and would never learn how to read. It was questioned whether I could even go to my neighborhood school. Luckily a neighbor had a friend, a professor at a local college who diagnosed me, and I participated in his research program where I learned to read. I won the lottery for dyslexia in Billings, Montana in 1979. I’m the only one [from my 2d grade reading group] who graduated high school. My story didn’t start out well, but it ended well.
What about the role of teacher training, education schools and curriculum?
We don’t teach teachers the science of reading. We don’t have code-based curriculum.
There’s a lot of pedagogy that got put into place [years ago] that we’re still working to address. When reading is about a belief and not about the science, it’s really hard.
Read Emily Hanford’s There Is a Right Way to Teach Reading, and Mississippi Knows It
It’s a big business. Almost every district buys curriculum from one of two big curriculum providers. There’s very little structured literacy work in it. Even so-called phonics instruction, when you break it down, it’s superficial.
Most districts don’t have a standardized remediation program, so it falls on the individual school. [When a school does have a remediation program] sometimes that’s only because a parent sued, which forced the training on the school.
If we’re really going to talk about inclusion, all students need this. With structured literacy, 95 percent of students can learn how to read. We know it benefits all students. So, by not having it in a meaningful way, we’re not including all students in a meaningful way.
[It] blows my mind we have [reading proficiency] numbers like we do and we’re not outraged.