The Problem with Dyslexia (It's Bigger Than You Think)
I'll never forget the day I was told never to speak the word dyslexia by a colleague with whom I was about to endure a particularly difficult parent meeting. Our student*, a sixth grader, was experiencing an enormous amount of difficulty reading and writing the sorts of things the majority of his classmates were breezing through. According to the results of the assessments he'd been given, he did not qualify for special education. His mom had finagled a diagnosis of ADHD out of her son's pediatrician, but I knew that his attentional issues failed to tell the whole story. He didn't particularly like to read and write--in fact, he made a beeline for the bathroom pass every time students began their independent work. I didn't particularly blame him--but I was at my wit's end.
"Whatever you do," my colleague warned me, "don't say the d word." She raised her eyebrows for emphasis.
It hadn't occurred to me, actually. Wasn't dyslexia about reversing one's b's and d's, anyway? I hadn't really noticed my student doing that.
Many years later, in graduate school, I would discover that there is far more to dyslexia, and in thinking back on it, can now understand why my colleague, who taught in the special education department, had suspected that my student was dyslexic.
Unfortunately, her warning--to refrain from even saying the word dyslexia--stayed with me much longer. I drank the colloquial Kool-Aid; in meetings with families and colleagues, I used a variety of surrogate terms, treating dyslexia like the Voldemort of educational terms:
Specific learning disability.
And then the state of New Hampshire, doing what New Hampshire does best, passed a "Dyslexia Law" last year that requires every public school to screen students for dyslexia and provide intervention services, along with progress monitoring, for those "who [are] identified as having characteristics that are associated with potential indicators or risk factors of dyslexia and related disorders" with very little guidance and zero funding. (Many of the suggestions or "evidence-based strategies" provided in this resource guide for helping students with dyslexia succeed are laughable at best.)
Yes. Relegating the word dyslexia to something profane is, without a doubt, the wrong move. It creates more problems--and heartache--for students and their families, as this NPR segment explains. However, the problem with dyslexia is not its name, but the way it is dealt with in public education.
Often referred to (inaccurately) as the "invisible" or "hidden disability," dyslexia is a neurobiological difference in the way a person learns language that most frequently manifests itself as "a weakness in phonologically-based skills in the context of stronger cognitive and academic skills in non-reading related areas" (Shaywitz, 2012). It is not an issue that is in any way connected to one's intelligence, vision, or hearing.
Although recognized as a specific learning disability by the Individuals with Disabilities in Education Act (IDEA), states and even districts have the ability to determine who does or does not "qualify" for special education. For example, a district may determine that only a student with a processing deficit qualifies as having a specific learning disability, who in turn may then be determined "eligible" for special education, despite the fact that the assessment results of many individuals with dyslexia (which--again--the IDEA recognizes as a specific learning disability) do not demonstrate a processing deficit.
This creates a devastating conundrum.
What are public schools to do when a student is clearly dyslexic, but does not qualify for special education? Many point to the "great in theory, but not in practice**" RTI model, which can provide opportunities for a wide variety of students who are not eligible for special education to work with trained specialists over a period of time. The problem is, research has shown that in order for this tiered intervention model to be effective, it is recommended that students receive these tiered services in addition to their core instruction. This means that for someone who is dyslexic, who (best case scenario) should be receiving 1:1 instruction by an Orton-Gillingham trained educator, a school must:
Have the highly-trained personnel available to provide this individualized (Tier 3) instruction;
Have the physical space available in which to provide this instruction;
Have the trained personnel available to also offer Tier 2 (small group) instruction to this student in addition to his Tier 3 instruction;
Have the funds to provide its trained personnel with the resources they need to offer the kinds of intervention needed;
Ensure that none of this impacts the student's Tier 1, or core, instruction.
If that weren't sufficiently mind-blowing, consider the fact that a student who is dyslexic but who is not deemed eligible for special education will not, under the law, be necessarily protected or guaranteed to get what he needs if his family were to move, if he were to enter another school within the district, or if his highly-trained interventionists suddenly decided to quit and go work at Starbucks.
Clearly, our system is broken. Special education professionals and literacy specialists are, in many cases, working parallel, rather than in conjunction, with one another. Schools in states who have recently passed dyslexia laws, such as New Hampshire, are struggling to follow the law while also dealing with an astonishing lack of funding or guidance. Educators who have been told for too long to never utter the word dyslexia are now grappling with how to communicate effectively with families. Families are being forced to shoulder the burden of providing their children with appropriate intervention due to the schools' lack of resources and qualified personnel.
And our students with dyslexia are being left in the proverbial dust.
*Identifying characteristics have been altered to protect the student's privacy.
**Applicable to most widely-mandated educational initatives. See also: New Hampshire's PACE program.