Goodbye ‘Dyslexia’

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.

ds‘Dyslexia’ is a huge group, almost 10,000 members sharing and promoting ideas that are exactly polar opposite to the Community Reading Project.

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.

albert-einstein

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.

Posted in ReadingBlog
10 comments on “Goodbye ‘Dyslexia’
  1. Denise says:

    Point well taken. I am one of those FB moms that tells people what type of lawyer they need, what to say to this or that and probably have used the word lawsuit in more than one post. I hate to admit you may be right. You have to understand though that if people are reaching out on FB it’s probably because they have hit a brick wall with the school district. I realize that change in education won’t come in time for my son, but the school tried to label my son as lazy. They tried to make him and I feel that he was less then. They knew it wasn’t his fault he didn’t “Get it.” it makes me so angry to remember the times I have repeated the words of teachers to my son. “You’re not trying!” “you’re lazy!” I don’t think you understand the pain and the guilt that comes with that. So yes, I fully encourage people to hire attorneys, sue districts and fight for all the services available. I also think it’s important to have famous role models. You may ridicule this, but it could inspire someone and what is it hurting?

  2. tberend says:

    Hi Denise. Thanks for your comment. You ask a thoughtful question. Let me try to answer.

    I don’t think any non-dyslexic can understand the “pain and guilt”. I have been helping struggling readers for years, and I hear the stories how they put up their hand and hide in the washroom rather than face ridicule in class. I hear about the bullying and worse.

    I have also worked with a school-reform group, it was hopeless. I cheered when the Supreme Court of Canada issued the Moore decision, but it sank without a ripple. The only person who is going to help a struggling child is his mom. So I’ve focused on providing tools and support to moms that want to give it a try.

    Dyslexia really is just educational failure. There may be some small number of kids that can’t learn to read, but they have other cognitive or sensory issues as well. The rest just need a hand.

    But back to your question.

    The problem with role-models is that we are looking at the wrong angle. The important thing about Einstein wasn’t that he was dyslexic (or not), it was that he worked on the relativity problems non-stop for five years, failure after failure after failure. We skip over that. Einstein is a role model for would-be physicists. The high-function dyslexics in ‘Dyslexia’ are probably better role models for struggling readers.

    So yes, admiring Einstein is mostly harmless. Perhaps I’m a Grinch, and admiring Einstein is harmless. But the part that isn’t harmless is the word ‘DYSLEXIA’.

    There’s a fantastic book by Carol Dweck called ‘Mindset’, which talks about the ‘Growth’ and ‘Fixed’ mindset. I’m taking the Stanford University course for Math students, will blog about it when I finish. In a nutshell, they claim mindset is the critical factor in math success. There is no such thing as someone who “isn’t a math person”. If our experience and beliefs are ‘fixed’ then we will struggle with math, hate math, and fail at math. We become good at math by believing that we will improve if we work at it. This is a simplification, but I don’t think I’m doing damage to the core idea.

    And so with reading. As soon as we label a child with a disability, we have nailed the coffin shut on his mindset. I recognize that a struggling reader needs help to improve, but gains becomes impossible if the parent and the child believe – even a little bit – that the child won’t improve.

    The research is clear, that every child can become a strong reader. But that requires a growth mindset, PLUS sensible training materials PLUS some positive experiences with the training almost from day one. I put years into preparing the materials on this site (didn’t ‘invent’ them, but took the best paper-based stuff I could find and made it easier to use, and FREE). We have a track-record of success.

    But I can offer no hope if someone believes their child has a disability. There is nothing wrong with the child.

  3. KD says:

    You really are a dick. Did you really have to write suck a long post to basically say you don’t like the group and you think it’s stupid? very rude. Pointless attention seeking a- hole.

  4. Good morning Tom. I read your ‘Goodbye Dyslexia’ with great interest. I totally agree that many parents of struggling readers are too concerned with getting a ‘label’ for their child. Then, they use whatever label they have acquired to try to get the educational establishment to ‘do something’. In the vast majority of cases their children would benefit more from the parents using a structured, systematic approach to sort out the reading problem. These approaches are out there. For example, take a look at the success stories on https://www.facebook.com/groups/DyslexiaNI/ where parents in Northern Ireland are doing the job themselves.

    • tberend says:

      That’s awesome Frank. Thanks for the link, I have asked to join. Maybe groups like ours can share resources, best practices, and that rarest of commodities: hope. Thank you.

  5. Amy says:

    I’m not sure I agree with everything you have said but I agree with the main gist of the post. I too have been kicked out of a Facebook dyslexia group. I like to think that those dyslexia mums you talk about are open to other people’s experiences. They continually talk about how their children don’t fit in ” the box” and want their children treated as individuals. Yet they will only look at options to help their child that “fit within their box” .
    I am all for treating children and people as individuals. I am also all for accomodations being made for children who require it.
    Why did I get kicked out of this particular group? All I was doing was sharing the interventions I had used with my child and the improvements he had. Yet I was told that it was placebo, or I was lying. Even that I had financial interest in what I was sharing. None of this was true. Yet some of the “dyslexia mums” running this group had their own gains for saying this as some are OG therapist/ tutors.
    While I am glad to be away from the abuse and drama that these woman create, I feel sorry for any newcomers who are not able to hear from people who have had different experiences to those that admin the group.

  6. Kirsty says:

    I agree with some of your comments. There are a lot of kids that have developmental delays and can take longer to learn to read. However a true dyslexic is more than just a poor reader that is what is focused on but it goes way way beyond that, there is sequential reasoning and memory; disorganisation and many more areas that have a day to day if not minute to minute influence on their lives. The coloured acetate is not for dyslexia (which I argued with the opticians) it is for scotopic sensitivity, it can make a massive difference to some individuals, its associated with dyslexia because you are more likely to have this condition if you’re dyslexic. I have two sons and a husband who have dyslexia, It’s not something to cure or to place blame on others failing but to encourage and to navigate through this thing we call life. Too much emphasis is put on academia I tell my sons school isn’t the be all and end all of life there is so much more out there. I’m leaving “dyslexia” on fab because it’s the same old stuff. I do feel for those mums. I know I’ve been there but mums need to educate themselves on everything and not try to fit a person who thinks differently into their idea of what they should be. Sorry if I went on there!!! Thanks for an interesting read even if I didn’t agree with it all xx

    • tberend says:

      Hi Kristy. Thanks for your note.

      We disagree about whether dyslexia is different from an ordinary reading deficit. Our experience and the research we find convincing says it is not. But I totally agree that kids learn on different schedules. Schools group kids into classes by age, and promote them whether they have learned the material or not. Some kids need extra help or more time, but there is NOTHING wrong with them.

      This website is slowly accumulating the explanations of why we think the way we do. Here’s one post that might give you pause: http://communityreading.org/wp/matthew-effects-in-reading/

      You are welcome to join our FB group and look around.

  7. Richelle says:

    I could never understand why mums want accomodations for their children. There are no accomodations in the real world ..if youre working and you write 17 instead of 71 noone is going to say ..thats okay i know you reverse letters and numbers …we should be working on obtaining the highest level of remediation possible for our children. I see mums saying all the time dyslexia is a gift …well i have 2 severely dyslexic children and my husband was diagnosed with dyslexia as a child 40yrs ago .i can tell you they dont see it as a gift thats evident by the anxiety my 9yr old son has developed as a result of being embarressed about not being able to read. My husband was mildly dyslexic .but even 40yrs ago he recieved help of one on one assistance focusing mainly on ability to cursively write phonetics and repeated exposure to the right way to say a word the spelling then followed suit…is he dyslexic today ? well he can read and write just as well as i can …is the dyslexia cured? maybe not but its symptoms and affects are not debiliating. But my childrens dyslexia is. Ive chosen to withdraw them from school to homeschool to enable 10 weeks of intensive help ….i have 10 weeks before the new school year to get them reading and doing math on grade school level. They are currently 2yrs behind …if i didnt do this they would be passed from grade to grade still not being able to read and failing all subjects …even music requires reading skills…..if mums just focused on this rather than obtaining accomodations and who they can sue and what laws protect their children well maybe just maybe as you say those kids would be posting on fb instead of their mums ..the responsibility of educating my children primarilarly is mine. I cant expect a whole governed system to change because its not suiting my child …its up to me to help them Wish me luck …i know ill be using your website to help me

  8. Joyce Shaw says:

    I got kicked too Tom for recommending the Toe by Toe reading manual for $35. We know it works, as we haven’t found a child yet that it doesn’t work for but oh no, the admin want us to spend $30,000 and wait 6 years for results. I don’t know whether to laugh or cry but time is of the essence so 6 months of doing Toe by Toe would be long enough for me and the child would be reading like a teenager.
    We welcome your input at Dyslexia NI Helps Kids Read – UK

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