I recently got booted out of Facebook’s ‘Dyslexia’ group. It was a daily parade of funny, sad, pointless, and heartbreaking stories. I’m going to miss it.
In their universe, dyslexia is an incurable medical or genetic disorder affecting 20% of kids. Dyslexics are encouraged to use different strategies to cope. Reading instruction remains the school’s job, even if the school lacks resources, even if the child is failing. Dyslexics have special gifts and abilities, lack normal organizational skills, and learn in different ways.
The moms of ‘Dyslexia’ (always mom) are embroiled in epic battles for securing school accommodations and special services from heartless and feckless schools. The arcane language of 504’s and IEP meetings is dissected and shared. Moms swap advice on obtaining and updating evidence of officially-recognized disabilities, and how to get their child formally labelled with learning disabilities like dyslexia (reading), dysgraphia (writing), and dyscalculia (counting). They debate whether to wait years for a free school evaluation or pay an outside psychologist. They know the laws that protect their child, and the cases that made it to court.
Strangely, they understand that their school has no resources, interest, or skills for helping their child become a strong reader and catch up with their peers. The idea of “helping the child become a strong reader” is almost missing from ‘Dyslexia’. No one asks ‘How do we fix this?’ ‘What works?’ What worked for your child? Who succeeded and how? How many hours, which lessons, what cost? What does the research say?
My offense was disputing with a mom about the effectiveness of Orton-Gillingham (O-G). After three years of ‘intensive’ interventions, her dyslexic daughter still struggled to read and write, still required accommodations and special treatment at school. I suggested it was time to try something else.
O-G has a cult following on Facebook, in spite of teaching phonics ‘rules’ that are obviously wrong, and syllable-types without basis in the English spelling system. It is beloved for using ‘multi-sensory’ techniques unsupported by any cognitive theory or research. O-G programs run the gamut of wildly different quality, including a notorious one that avoids phonological processing completely. Some of these ideas are harmless, and good tutors ignore them or find other ways to help the child. But others can quickly turn a poor reader into a disabled reader.
I had pointed the ‘Dyslexia’ mom to a meta-study of 12 intervention studies (read it here) that found small-to-zero effect sizes for O-G, in spite of tutors and students on their best ‘being watched’ behaviors, and in spite of numerous methodological concerns (read: thumbs on the scale). The authors basically threw up their hands in disgust.
I’ll take a closer look at O-G in a future blog post. But ‘Dyslexia’ is a massive echo chamber. It isn’t the place to point out what the research really says, and even though I did it gently, this mom was incensed. Like many of the militant ‘Dyslexia’ moms, she was fully invested in dyslexia, in demanding services and accommodations, and in protecting her disabled vulnerable child from every conceivable form of bullying and embarrassment. She had informed herself about dyslexia, was generously sharing her knowledge on Facebook, and anyone who disagreed with her was not just wrong, but hateful and offensive.
And out I was booted. Quite correctly, I shouldn’t have been there in the first place.
Still, I’m going to miss the daily drama of ‘Dyslexia’. Especially the moms asking for advice. How to sue the teachers, sue the school, sue the district, sue the state. Whether health insurance covers dyslexia assessments. Whether the school has to accept a private assessment. What to do about kids too tired for homework following after-school football practice. And the shocked moms of teenagers who suddenly discover that their almost-adult child can’t read, looking for where to turn for advice (hint: not Facebook).
I’m going to miss the rants about teachers. Everything is their fault, both by law and by measures of common decency. They must prepare daily individualized (read: simplified) workplans for the dyslexic child, but are vilified when that child falls behind the rest of the class. They are castigated for calling on the child in class or not calling on the child, for sending homework, for not sending homework, for allowing the child to be bullied, or stigmatizing him by isolation. They can’t do anything right.
I’m going to miss the snake oil treatments. Coloured filters that help a dyslexic child read better (but somehow are never quite the exact shade). Special fonts that help a child understand text that he can’t decode. Modelling words in clay. Tossing balls on a balance board. Headphones with filtered classical music. Exercises designed for astronauts. Brain foods that fight dyslexia.
I’m going to miss the endless lists of famous people with dyslexia. Einstein is the poster boy for dyslexia, it seems true that he was an indifferent student although there is not a shred of evidence he had a reading deficit. But if Einstein was a poor student, well, just imagine my little guy…
I’m going to miss the ’20 Traits of Dyslexia’ lists, especially the ones unrelated to reading, such as difficulty tying shoes, sensitivity to foods, lacks depth perception. And ’20 Things to Know about Dyslexics’, ’20 Things only a Parent of Dyslexics Know’. It’s almost all click-bait from the same reliable publishers that promote ’20 Child TV Stars that Got Insanely Fat’.
Well, I’m guilty of click-bait too. To promote this site on Facebook, I once plagiarized “12 Myths about Dyslexia” from a British website, and added a photo of Einstein that only shows up if you post it into Facebook (try it). It’s easily the most-visited post on my site.
I’m going to miss the wag who posts inspirational graphics with dyslexic affirmations, but always mangles a spelling, grammar or punctuation (“you’re dyslexic child is special..”). I can’t tell whether he’s brilliantly subversive or just oblivious. My favorite was “Give a man fire, and he’ll be warm for a day. Set him on fire, and he’ll be warm for the rest of his life.”
In a way, ‘Dyslexia’ inspired me and kept me going. Facebook is an addictively cheerful place, no one ever shows the pain of failure, the despair of job rejections, the humiliations and shame. It’s not at all like what I see in the clinic.
The dyslexics who participate are very high-functioning, often writing books or keeping blogs. They were the most fun, I’ll miss their gleeful tips on how to swim among the ‘neurotypicals’ and ‘muggles’. But the poor kids who can’t read, or who read with memorized words and guessing, they are only represented by their moms. They won’t be posting on Facebook anytime soon themselves because, well, because they can’t.
So goodbye ‘Dyslexia’. But I will miss you.