As followers of this blog know, reading issues continue to plague me. A couple months ago, Dr. Lynda Thompson of the ADD Centre suggested I do a reading evaluation with Lindamood-Bell as she felt this would show me I don’t stack up too badly against the norms for my age group and gender. Lind-a-what?? Took me at least a week for the letters in this unusual name to make sense in my head. I made an attempt to check out their website.
I usually investigate people or institutions before I spend my money. But in this case, because I’ve been so worn down by the last two years, consumed by brain injury grief, given up on my reading, I went only as far as determining that they’re legitimate and seem to have ideas about reading that I’d never heard of — and most importantly Dr. Thompson had recommended them — before calling them to schedule an appointment.
The Toronto office doesn’t have a physical location and the online interaction is handled by their Minnesota office. After a couple of time zone snafus, the centre’s director and I spoke on the phone and arranged for an evaluation to be done over two days. She didn’t want fatigue to interfere with the assessment, and from the beginning of this awful brain-injury-recovery slog, I usually try to divide up assessments so that I can continue to function in daily life or not have to nap for days after and deal with a migraine to boot. Insurance companies aren’t too pleased sometimes with that; people who care about your health are cool with it.
I’ve had no experience with telemedicine. After this evaluation, I’m a fan. I didn’t have to wake up an hour earlier and lose valuable sleep so as to be able to commute to a clinic. I could see and hear the person really well. Not so sure about her me because my computer’s webcam is kind of old. At least she could hear me well.
I had bought a decent-sized display two years ago when after my eye surgery my new vision demanded a better monitor. That display showed both her clearly and the documents conveyed through the document camera or the words on her screen that she shared with me a couple of times. She used Apple earbuds to speak to me, and so I never heard the construction noise in the background that apparently started up midway through the test. Also, my voice didn’t blast all over her office. Privacy!
Best part of the e-evaluation: I was able to be comfortable in my own environment, dress in partly sloppy non-constricting clothes, and not worry about organizing myself to get out the door.
All my energy went to doing the evaluation.
This is huge when you have a brain injury and every single thing takes energy from you.
We launched right in with a vocabulary test unlike any I had experienced before. Usually they give you pages on which words of increasing difficulty are listed and beside which are four other words that you have to decide which one is closest in meaning and circle it. In this test, the assessor spoke the word and I was presented with four illustrations and had to choose which one represented the word.
This test was looonnnnggg. And tiring.
There were a couple of words I couldn’t understand and she spelled them out for me. Apparently, me asking her to spell out a couple of words told them something about how I prop up my reading. More later. There were also a couple of words I’d never heard of before, one of which I couldn’t even begin to parse out to decide which illustration could represent it.
Some of the next tests reminded me of Cogmed exercises I’d done last year and had continued to do in a maintenance form up until early January 2018. I also relied on my cognitive psychology lessons on memory to know how to accomplish the task given me. Chunking and pattern recognition is a great thing.
One test where I was shown for a few seconds . . . let’s say a series of increasingly more letters sometimes in nonsense words, sometimes seemingly random . . . then was asked questions on them, I knew exactly how to do. But my brain had to work SO HARD to do it, my head felt like it had exploded. We had to take a break then she gave me five minutes to put my head down while she turned off the screen. I did extremely well but strained my brain to its max because I have no automaticity in these cognitive skills. Automaticity is what happens when, for example, you learn to walk. At first, you have to focus on every aspect of it. Slowly your brain learns what to do and now, as an adult, you don’t think about starting your legs, moving your legs, you just . . . walk. I guess that’s a metaphor for brain injury. You know HOW, sometimes you can execute HOW but the fatigue cost is enormous because the injury took away all automaticity and/or broke the neural networks to execute a particular skill.
Because it was obvious I was doing well on the vocabulary, spelling, etc. tests, especially that head-exploding one, I commented that this is why people don’t believe I have reading problems. Although I have improved bit by bit, I still struggle enormously with the length of material and acquiring new vocabulary. She said that’s why they have tests for that. They were coming up and would be divided across the two days.
She proceeded to wring out my brain with stories I had to answer multiple-choice questions for. I’ve endured so many neuropsychology tests that include stories that I ace because they’re not new to me and my recall of facts of a story isn’t bad in the short term, that I was skeptical.
I read out loud the first story. She took the story away and put on the screen multiple-choice questions and read them out, one by one, and their answers as I followed along. This seemed like the usual, except that I had to read the story out loud. And she had given me a brief synopsis before showing me the story through the document camera.
The second story dispelled any idea that this was same-old, same-old. Every story was in a solid paragraph. The paragraph stories varied in physical widths, sentence lengths, vocabulary length and difficulty, and other aspects. The questions too were not same-old same-old recitation of facts. They required the kind of comprehension you need in a high school English class aka what is a character feeling or what is their motivation. I needed to be able to create a picture in my mind of what was going on. I can barely do that and hang on to a concept image for my own writing!
After I completed the evaluation, restored my brain with one of my neuromodulation devices, and napped, I thought about how the story test got at the reading skills I learned in high school and university. I remember in one class, our teacher showed us the longest sentence ever written and showed us how to read it. In another class, I was taught how to use an unusual word such that a reader who wouldn’t know it could guess at it from the context.
That test and the story one I did on the second day that had open recall questions spoken to me (not shown me like with the first paragraph test), were the first I recall doing that got at those high school reading skills. Because they jogged my memory of those classes, I can now articulate better one of the skills I’ve lost and haven’t regained all that well.
After a pronounce-these-letters-and-two-letter-combos test, I realized another issue my brain injury created in me. Basic verbal language abilities I had mastered as a young child were gone and I hadn’t noticed. I had also not had any review of those skills during neurorehab in 2000-2001 because I could speak. It didn’t matter how I spoke, the fact I could was good enough, and we focused on communication. Looking back on that, I have to say we barely got started in addressing all the communication issues either that I faced over the years.
After I got the results summary, I looked up some of these tests and, briefly, the origin of Lindamood-Bell, and I have to ask:
Why were these tests not given me in 2000 when I was told I couldn’t read?
They would have teased out where the problems lay and the team would never have advised trying audiobooks. Doing a qEEG would also have told them I have auditory processing difficulties. Failing colossally when I followed their advice to read audiobooks instead of text was probably when my self-confidence began to drop.
I have the results and recommendations from the reading evaluation. Will write on those later. I’m gobsmacked and finding it difficult to process it all. One thing I will say: restoring the brain after brain injury costs A LOT BECAUSE Canada’s universal health care doesn’t cover it. Are you aware?