October 17, 2018 was a very special, proud day in our lives: THE FIRST TIME I SAW MY SON READ independently and voluntarily. It was the graphic novel "Ghosts" by Raina Telgemeier. My son was 9 years old and in the beginning of 4th grade.
Only a year earlier, when he was beginning the 3rd grade, he was virtually illiterate. I had to read everything to him: signs, menus, toy labels, and his homework. We never got past the first "Bob" book. He received 0% on virtually every single weekly spelling quiz in 2nd grade, no matter how hard or long we studied for it. They refused to excuse him from the weekly quiz as he did not have a diagnosed learning disability yet. They did modify it slightly, but it made no difference.
We hired different tutors, but saw little to no progress. None of his teachers could help him, or understand why he could not learn to read. The vast majority of teachers at both public and private schools are not familiar with dyslexia or its symptoms--or believe the incorrect myths that it has to do with seeing or writing letters backwards. These teachers included his own mother--me--a high school teacher--were clueless.
During the 1980s, U.S. schools switched from using the extensive, systematic phonics system that most of us grew up with, to the newer "balanced literacy" and “3 cueing method” used today. After this switch in literacy instructional approaches, the rates of diagnosis of dyslexia increased notably, because kids with milder forms of dyslexia can learn to read in the gen-ed classroom using the former intensive phonics system, but not using the new cueing and balanced literacy system.
Some teachers suspected vision and hearing problems, so we had him screened for these. We wasted money on six months of an ophthalmologist's treatment for "visual convergence insufficiency". His expensive hearing test did not identify any hearing problems. Dyslexia is not a problem with either vision or hearing, but rather with weak auditory (and perhaps visual) processing—something that occurs in the brain even when a child has perfect vision and hearing. We tried so many things, but every single one failed, and the clock was ticking ever louder and faster.
We were fast approaching the end of 3rd grade, which I knew as a teacher is when brain plasticity, and the brain's ability to learn how to read fluidly and with automaticity, plummets. Studies have found that 75% of children whose reading help is delayed to age 9 or later continue to struggle throughout their school careers (Vellutino, Scanlon, Sipay, Small, Pratt, Chen & Denckla, 1996).
There came a point when I seriously feared that our son might never learn how to read.
None of his teachers over the years, nor my husband and I, were familiar with Dyslexia--despite me being a teacher--so we missed the HUGE RED FLAGS indicating he had dyslexia: he had very weak phonological and phonemic awareness. Children who lack phonemic awareness are unable to distinguish or manipulate sounds within spoken words or syllables. For example, our son could not distinguish between the sounds of the 5 vowels--they all sounded the same to him--and he could only "hear" one of the sounds in blended sounds. So no matter how slowly and exaggeratedly I enunciated, the word "BRING" sounded to him like "B-vowel-G". These challenges do not come from deficiencies in hearing or vision, but rather in phonological processing, which occurs in the brain.
Dyslexia is a neurobiological difference characterized by a weakness in the part of the brain that processes the sounds of written language—particularly phonological and phonemic awareness--the very foundation of decoding. That region sits above the left ear, at the junction of the brain's temporal and parietal lobes. A “phoneme” is the smallest unit of sound in a language. Dyslexics with poor phonemic awareness will typically struggle with distinguishing phonemes (like how my son couldn’t distinguish the different sounds in the word “bring”), as well as with manipulating phonemes: What word would be left if the /k/ sound were taken away from cat? What word would you have if you changed the /h/ in hot to /p/? (Chard & Osborne, Reading Rockets).
Right before the beginning of 3rd grade, we paid for private neuropsychological testing and they diagnosed him with moderately severe specific learning disability in reading, and moderately severe ADHD. By then he was 2.5 years behind grade level and reading in the 3rd percentile, so his new public school granted him an IEP in about a month. They started him with 7 hours of pull-out instruction, including small-group work with the Special Ed instructor on Wilson Reading System.
But we felt that since he was only 9 months from the end of 3rd grade when brain plasticity and the ability to respond to "structured literacy" programs starts to drop, and given that he had not responded to anything else we had tried, we decided to act more aggressively. “Since dyslexia is a neurobiological disorder and brain plasticity decreases through childhood, it takes four times as long to intervene in fourth grade as it does in late kindergarten (Lyon & Fletcher, 2001)” (Consortium on Reaching Excellence in Education®). My husband took on a lot more work hours, we tightened our belts, and paid for FOUR weekly after school sessions with one of the top reading specialists in the DC metro area. The photo was taken in their waiting room. Their services were expensive, but we still feel this was perhaps the most important investment of our lives, one that will continue to pay huge dividends all his life. His structured literacy specialist there was the one who told us she thought he had Dyslexia. I had to look up "Dyslexia" on my phone because I had NO idea what it was. It was never mentioned in my Teacher education program or in any in-service training.
Dyslexia is neurobiological in origin and is characterized as an unexpected difficulty in reading and spelling in children and adults who otherwise possess average or above average intelligence and whom have received adequate classroom instruction. Phonological processing weakness is the core, definitional deficit in dyslexia. But deficits in rapid automatized naming (RAN) and working memory can both also play a part. Dyslexics often struggle with rote memorization, sequencing, and directionality (e.g. confusing left with right). Dyslexia can be thought of as a “menu” of these common symptoms, with each child having different levels of each symptom, with the principal commonality always being the deficit in phonological processing.
Our son's interventionist teaches dyslexics and other struggling readers to read using "structured literacy": an explicit, systematic, cumulative, and multi-sensory literacy approach that focuses on phonological awareness, word recognition, phonics and decoding, spelling, and syntax at the sentence and paragraph levels. By contrast, the literacy methods used by the vast majority of K-3 teachers and even most reading tutors skips over phonological and phonemic awareness as these develop fairly automatically in non-dyslexic children, and so it is just assumed that kids already have these skills. When teachers/tutors who don't use "structured literacy" attempt to teach dyslexic students how to read, they are attempting to layer more advanced literacy skills on top of a shaky or non-existent foundation of non-existent or very weak phonological/phonemic (pre-literacy) skills. If a child lacks phonological or phonemic awareness, they will have difficulty learning the relationship between letters and the sounds they represent in words (Phonics), as well as applying those letter/sound correspondences to help them “sound out” unknown words (Chard & Osborne, Reading Rockets). Imagine trying to build a house of several stories on a foundation of sand... exactly: the walls and columns keep falling down.
Over a single calendar year of these 4x weekly "structured literacy" sessions with his reading specialist, our son quickly progressed from essentially illiterate to slightly above grade level. I should note that my son's case is a bit of an outlier, and most students need THREE years of such instruction, depending on the severity of their dyslexia and their age. Although the pace of my son's progress is unusually fast and so his case is a bit of an outlier, the radical progress he made with structural literacy in a very short period of time--after years of little to no progress under traditional literacy methods--attests to the potential power of appropriate, early intervention with structural literacy.
Dyslexia is unique among learning disabilities in that its effects mostly target early literacy skills. Thus dyslexia only poses a significant challenge in the remainder of a dyslexic child’s education to the degree they do not receive early, adequate early intervention. The brain is very malleable or “plastic” before the age of 8, and so many dyslexics who successfully receive intensive, quality dyslexia intervention before the age of 8 or 9 years old, go on to successfully access the rest of the general education curriculum with minimal support. Our son is expected to test out of his Special Education IEP within the next year, less than 4 years after he was granted it.
In fact, researchers have found that MRI scans demonstrate that the brains of dyslexic children who receive at least 100 hours of "structured literacy" instruction, at least three times a week (frequency/intensity is KEY) by a certified instructor, when the child is relatively young, appear to have actually RE-WIRED to overcome their reading challenges. Dyslexics whose brains have re-wired in this manner can read almost or as well as non-dyslexics, albeit using a different part of their brain than non-dyslexics use. However, they still have dyslexia, and will probably still struggle with other, non-reading symptoms of dyslexia such as writing and rote memorization.
Another interesting thing to note that even in the year and a half AFTER he STOPPED receiving reading lessons from the reading tutor (or the school), he independently progressed another two and half years in reading and now reads 1.5 years ABOVE grade level and is the strongest reader across both 5th grades in his school. This appears to be because he now has a stronger foundation in literacy than his classmates, who were taught to read using "balanced literacy". In total, since he started his structured literacy lessons, he has progressed 7 reading grade levels in just 2.5 years.
Another thing that might have contributed to the remarkable rate of his progress was that his other, non-decoding reading skills--verbal vocabulary level, comprehension skills, analytical skills, etc.--were all 2-3 years above grade level. As I mentioned, I was a teacher. Around the beginning of 2nd grade I finally accepted that he was facing a significant reading challenge, that nothing we were doing was helping him, and that it might be awhile before we could find him someone/something that could teach him how to decode. So I changed gears. I stopped trying to help him decode, stopped helping him study for the weekly spelling tests, and I threw away the useless sight word flashcards the teacher assigned. Instead, I switched to helping him re-discover a love for books and reading, building his vocabulary, teaching him Latin & Greek roots, how to understand figurative language and literary adages/sayings, how to analyze allegorical meaning, and break down the meaning of complex sentences and passages. And I introduced him to great young adult literature, both classics and more recent novels with diverse protagonists. I read to him for 1-2 hours, very single day-- before bed and during our Uber rides. These read-aloud sessions were hands down our favorite part of the day, and we both looked forward to them every day. I stopped several times a page so that we could define vocabulary, look up definitions and pronunciations and maps, ask questions, and discuss the plot, make predictions, and make connections. He also insisted on creating a quick on-the-spot skit and "acting out" the new vocab words, which it turned out, helped cement them in his memory (multisensory methods help dyslexics remember!)
So that is why, as I explained earlier, while his decoding skills were 2-3 years below grade level, his other, non-decoding reading skills were all 2-3 years above grade level. He was just missing those darn phonological awareness and basic decoding skills! So once the structured literacy sessions helped him develop those, it all clicked together and he was off to the races. His decoding levels quickly caught up to his other non-decoding reading skills.
While he technically reads a year and a half above grade level, he strongly resists reading traditional books that are not graphic novels unless required to do so for a class or homework assignment. We do not know why, but suspect that it might have something to do with his three-year delayed start in reading. I do not want to force him to read something he doesn’t want unless he has to, as I don’t want to have a negative association with books. The good thing is that he LOVES reading graphic novels, and he LOVES for me to read to him. So I make very active use of the public library’s Online book reserve system, and make sure that there are always several new exciting graphic novels that he won’t be able to resist, lying around the house, and that there is always a book for me to pull out of my purse to read to him in the Uber ride and waiting room, in addition to before bed. I am hoping that in a couple of years, I will be able to take another photo like the one above, but with him voluntarily reading a traditional (non-graphic) novel.
After that one year of reading sessions, our son transitioned to 1x weekly WRITING sessions with the same specialist (1.5 years of those so far). Dyslexia often also affects writing, spelling, and rote memorization. His WRITING skills have improved notably over the last 2 years, although not as quickly as his reading skills did. He still struggles with writing, but we hope he reaches grade level in writing within the next year.
Although my son’s brain has been re-wired with respect to reading, and we HOPE he will be up to grade level in reading within a year, dyslexia is a lifelong neurological brain difference with no cure, and it is more than just a reading (and writing and spelling) disorder. Aside from reading, writing, and spelling difficulties, dyslexics often struggle with rote memorization of non-meaningful facts, directionality issues (e.g. confusion between left and right), sequencing steps, memorizing sequences, telling time on a analog clock, organizational difficulties, taking notes, and copying text. Again, dyslexia can be thought of as a “menu” of symptoms, so different people will have different degrees of difficulties with a different group of these symptoms.
I find that the challenges with rote memorization pose a particular challenge in the classroom. My son excels comprehension, analytical and conceptual thinking and even computation, but struggles mightily to memorize math facts, science facts, and history facts. But because I am a teacher, I have often been able to come up with compensatory and work-around strategies for rote memorization and other dyslexia challenges. In fact, my son's Gen-ed & Sped teachers often find these strategies so useful that they teach them to the rest of the class! I am working on writing up these strategies so that I can share them with other students, parents, and teachers, including this group.
A disproportionately high percent of dyslexics also have ADHD, dysgraphia (difficulty with handwriting & other fine motor skills), and dyscalculia (difficulty with math). Our son has moderately severe ADHD, and while I have never had him tested for dysgraphia, he finds handwriting very uncomfortable. If he has to write more than a paragraph, his teachers allow him to type it.
And even though our son is almost completely remediated in reading, writing, and spelling, I still have to spend many, many hours helping him be successful. There are so many different symptoms of dyslexia, and they manifest in so many unexpected ways, and there is little practical information for how to deal with these difficulties. I find myself researching and problem-solving each challenge as it presents, finding strategies and solutions, and then teaching those to my child. His SpEd teacher figured out that the reason he was unable to answer the open-ended reading comprehension questions was not because he did not understand the passage, but rather because he had forgotten the details by the he had to write them down. Last week I had to explain to the same Special Education teacher that he totally bombed his formal writing assessment NOT because he refused to write anything, but rather because his mind goes blank when faced with an extremely general writing prompt (“Washington DC”). The other day I spent the evening looking for Youtube song videos about the months of the year and about measurement conversion facts, because he is only able to memorize facts through songs. He just learned the order of the months in the year—he is 10 years old.
But, STILL. I am definitely NOT complaining. Learning to read was a GAME CHANGER. I am painfully aware that the vast majority dyslexic children will NOT reach grade level reading, or may not even learn to read. The vast majority of public schools in this country cannot provide this instruction, and the vast majority of parents cannot afford private structured literacy instruction (particularly as most students will need THREE years instead of just one year)--- nor should they have to.
The stakes are very high. Dyslexics who do NOT receive adequate dyslexia intervention usually cannot access the curriculum without substantial SpEd support throughout their entire education. They experience significantly higher rates of bullying, behavioral problems, absenteeism, high school dropout, early pregnancy, drug abuse, mental health problems, suicide, unemployment, and criminal justice involvement. In fact, two studies of major state prisons found that about half their prisoners had dyslexia. To these devastating consequences on individuals, we must add the costs to the community as well as taxpayer costs.
This why I work with "Decoding Dyslexia DC": to advocate for changes in laws and funding of DC's public and charter schools so that every family might also experience this same priceless moment of SEEING THEIR DYSLEXIC CHILD READ FOR THE FIRST TIME.
The Dyslexia bill, “Access to Reading for All: Addressing Dyslexia and Other Reading Difficulties Amendment Act of 2020,” B23-0150 consists of professional development, universal screening, and "science based reading" instruction and intervention for all reading difficulties – explicitly including dyslexia and other reading disabilities – in both DCPS and public charter schools, permanently. It was passed by the DC Council's Education Committee this past Tuesday. Next we have to get it passed by the whole Council, not vetoed by the Mayor, sufficiently funded, and fully implemented.