Following a long and often frustrating journey, we finally had a diagnosis. Our son Evan has dyslexia. What follows are some highlights of Evan’s story from a parent’s perspective. Unfortunately, the prevalence of dyslexia suggests that countless other children and their parents and teachers are struggling to understand the problem and cope with it. My hope is that our account sheds some light on understanding it and the importance of early diagnosis and intervention.
Evan completed preschool at home, as his older sisters had, and I could tell he didn’t learn like the girls, for whom reading and learning came easily. We tried games, videos, workbooks, etc., but no matter what we did, the names and sounds of letters wouldn’t stick.
His grade school years were difficult. Though he certainly was smart, he felt the opposite. Over those years, Evan underwent Title 1 tutoring, speech therapy, vision therapy, and extensive testing through the local school district. We wondered if we should test him for dyslexia, but that process was very expensive and until he was in 8th grade, no one we spoke to thought we should test him.
From Kindergarten until his diagnosis in 8th grade, all of Evan’s teachers were aware he struggled with reading, spelling, and school in general - but because he is very intelligent, they were always optimistic he would do fine. Two teachers even volunteered to tutor Evan outside of class hours. It’s difficult to overstate our appreciation for Kari Tiarks, his 3rd grade teacher, and Ann Ponath, his Language Arts teacher when he was in 8th grade, for going the extra mile to help him succeed.
In response to our requests, Evan’s teachers granted accommodations even before he had a diagnosis. By 6th grade, Evan was struggling to pass spelling tests even though he studied for them more than his three siblings combined. Accommodations included spelling tests with fewer words and additional time to take tests. While Ann Ponath was teaching and tutoring Evan in 8th grade, she suggested we consider testing him for dyslexia. The decision to test wasn’t an easy one. Each state and school district’s policies differ, and even our state’s policies have changed in the years since Evan was tested. But dyslexia assessments are not simple tests. They are time consuming, require trained neuropsychologists, and can be quite expensive. In 2018, we paid $2,400 for Evan’s assessment.
We were so excited when we received Evan’s diagnosis that he is dyselxic. Knowing why he struggled was a relief for him. Understanding that approximately 20 percent of the population is dyslexic helped him feel less alone. It also offered new opportunities for him to learn in ways tailored to the dyslexic mind. We chose the Barton system of tutoring to help retrain him to read. I was able to tutor him myself, which saved tutoring costs, though the curriculum and materials themselves were also expensive - roughly $3,500. Working with Evan for two hours a week over the course of about a year and a half, he learned a great deal and we actually had quite a bit of fun doing it much of the time. We have often discussed that time together and have fond memories of it.
In high school, we’ve tried to keep Evan focused on taking classes that will prepare him for college and life. The Learning Resource Center at St. Croix Lutheran Academy has been a huge blessing in helping him prepare for what’s next. He can get help with assignments and accommodations for taking tests when he’s in the LRC for study hall. These programs at our schools affect our kids' lives in a way I’m not sure people fully appreciate. Lorna Kapanke, the LRC Coordinator at St. Croix, has been a huge blessing to us as we navigate high school. The first time I talked to her about Evan and told her about his diagnosis, she immediately had a plan. As a mom who hadn’t always known how to proceed from one year to the next, this was such a relief!
Evan is a senior this year and will be prepared for a traditional four-year college if he wants to take that route. At the moment, his interest in pursuing a trade will likely take him to a trade school instead, but intervention and hard work created opportunities for him.
While it’s easy to look back and see how God has placed teachers in Evan’s life who cared for, encouraged, and accommodated him, it has been a frustrating journey at times. Had Evan been diagnosed early in his schooling, the intervention would have been so much more effective and school would have been much better for him. Teachers have very difficult jobs, but I can’t stress enough the importance of recognizing dyslexia, working with parents, and marshaling resources that exist to help these children succeed. Their whole lives will drastically improve when this is done. And when it’s missed, or delayed, they truly suffer. Not every teacher has the interest or ability to become an expert in special education. Neither can they afford to simply let the special education teachers find and help these students alone. Every teacher, especially in the early grades, needs to understand the basics of such a common problem and how to help. Every. Single. One. The devastating impact of failing to do so will be felt by these kids their entire lives. Thankfully, due to parent advocacy, new state laws requiring training so general educators can recognize the characteristics of dyslexia and differentiate their instruction accordingly are changing the experience of students like Evan.
Ultimately, as we look forward to Evan’s senior year in high school, we can look back at how God has blessed him through his education in WELS schools. We’re so thankful for teachers who pushed him to do his best, treated him with respect, and didn’t let him give up on himself. May God grant the same for all His children.
Written by Rebecca Valleau
Rebecca and Mike with their four children live in Maplewood, MN.
CESE would like to thank our author for sharing such a personal story. We pray that it inspires teachers and parents alike to be advocates for all children placed in our care.
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