18 May Overcoming Severe Dyslexia: A Live Case Study with Weekly Updates
Meet Maddie, a 10-year-old who has been diagnosed with severe dyslexia, moderate dyscalculia, ADHD, and low IQ (low 80s). People who have evaluated her have said that they have never seen dyslexia as severe as this before. Her parents have been told by more than one professional that Maddie will probably never read, and that they should try to find things that Maddie can be successful with outside of academics, because she will never be successful in academics. Her mom, Kimberly, refused to accept this and has worked tirelessly to try to help Maddie, with little success. “At this point, I have tried so many different things with little to no success that it is hard NOT to believe the professionals telling me that she is just never going to be able to read,” Kimberly told Edublox.
Below is a video of Maddie reading unprepared from a book, a Second Grade Reading Word List, as well as a Third Grade High Frequency Word List.
We have been touched by Maddie’s story and have chosen her to be a live case study. Starting on March 12, 2018, we will post at least one update per week on our Facebook page, and also copy that update on this page.
Below you will find
- Maddie’s story, as told by her mom, Kimberly
- Maddie’s assessment results (she was assessed twice)
- The Edublox program that Maddie will be following for the next 13 weeks
- Maddie’s Diary (progress updates)
A shortened version of Maddie’s story can be found here.
Maddie’s story, as told by her mom
Maddie was in public school for kindergarten for two years, but because her reading was so low she was retained. The school offered her no additional help, and most certainly no specialized help, so I pulled her out of school to homeschool. My theory was that they just weren’t teaching enough phonics, and if I taught her phonics, she would be able to read. That obviously did not work out, so I tried a different program, **** (name omitted). This program did not help at all, so I eventually took her to be tested for learning disabilities. Her results obviously showed severe deficits, and she was subsequently diagnosed with dyslexia.
We were recommended to use an Orton-Gillingham-based program, so I did my research and found what seemed to be the “gold standard” for home use, the XXXX system (name omitted). I purchased the system, and I immediately encountered many problems. The developer offers unlimited free phone support for anyone using her system, and I was calling every day with some new issue that had popped up. I think she got quite tired of my calls, and most of the time she told me that in all her years of working with dyslexic children and adults, she had never encountered many of the problems that I was having. She eventually recommended that we work with a specialized tutor who could better address our needs. So, I found a highly qualified NILD educational therapist who specializes in severe dyslexia and uses the system.
We have been working with her for over a year via Zoom on the computer. Maddie is now able to sound out words, but she does it slowly and painstakingly, and even though we work on fluency every day, she has very little to no fluency, even with simple CVC words. She continues to guess at words, even when reading words that she knows phonetically how to sound out, so she makes a high percent of errors when reading. Even the educational therapist seems baffled by this. Only a few days ago, she told me that she had never had another student whose fluency did not improve with her tutoring. Also, there has been very little improvement in directionality issues, BDPQ reversals, naming problems, and overall language, vocabulary, and verbal skills, despite the specialized tutoring, speech therapy and visual therapy.
She has severe issues with naming, with almost everything, even just in daily life. For example, we were making chili for supper the other day, and she kept calling it spaghetti. She quite frequently mixes up the words for SOUP and SPAGHETTI (and apparently chili looked enough like soup that she mixed that up too), though I have no idea why. She also mixes up the terms “minute”, “hour”, “day”, “week”, “month”, and “year”. She might say that she needs to cook something in the microwave for two hours instead of two minutes, or she might say that Valentine’s day is one month away instead of one week. Another example is bodies of water: she might call the ocean a river or vice versa, which makes it very difficult when studying geography, history, etc. Another example is mixing up the terms “street”, “town”, “city”, “state”, “country”, and “continent”. If asked what state she lives in, she might say the name of our town or the United States of America instead of our state. These severe naming issues make daily life very difficult, because it is hard to understand anything she says. She has severe difficulty describing anything, instead she frequently says words like “thing”, “stuff”, “it”, “that”, or “you know” because she can’t think of the words she needs to describe something.
We have also reached a point in the XXXX system where there seem to be SO many rules, that I can’t even keep up with them all, so how can I expect my child to be able to learn to read while trying to remember so many rules. There are rules about spelling, rules about syllable division, then there are exceptions to the rule, then exceptions to the exceptions. We are not even halfway through the system, so I can only imagine how many rules there are left to learn, and we are already feeling overwhelmed by them. If I had to learn to read that way, I would never be able to read, and I’m afraid that is what will happen if we continue on this course.
I have been quite intrigued by reading through all of the information on your website. I had thought myself quite well-versed in dyslexia, but the more I actually look into the theories on dyslexia, the more I realize that there really is no consensus about what it is or what causes it. As you have so aptly described in one of the articles you referenced, you cannot cure something if you do not know the cause. I had thought all along that the root cause was a disability in the way the brain processes language, as well as a deficiency in phonemic awareness. Most programs try to remediate the phonemic awareness and expect that this will remediate the reading, but that has not worked in our case. I also find the studies comparing the brains of poor readers with and without dyslexia and comparing dyslexic readers to younger readers at the same reading level very interesting. I had never thought that these differences in the brain could be merely a result of poor reading rather than the cause.
I had recently found the book Equipped for Reading Success and ordered the book and read it over a few days. I was quite interested in his description of orthographic mapping and his methods to improve mapping and thus improve fluency. His theory is that there is no such thing as dyslexia, only children who have poor phonemic awareness and poor orthographic mapping because of this. So his theory, and the whole book, is that if you remediate the phonemic awareness, the dyslexia will no longer exist. At first, I was quite excited by this idea, but the more I thought about it, the more I realized that this couldn’t be. Here’s why: the symptoms of dyslexia that Maddie has are so much more vast and pervasive through all areas of life, not just reading, that it is impossible that remediating only the phonemic awareness would “fix” everything. It makes much more sense to me that the problem would be much broader than just phonemic awareness, and your article on understanding dyslexia reflects this idea.
I thought you might be interested in seeing some samples of her writing.
She also wrote this story a few days ago. I had her correct all of the mistakes, so I will just type what she originally wrote:
The mom cheetah (I spelled that for her) and her cud (cub) is going on a hunt. they are going to hunt for mise (mice). The cud (cub) has fond (found) a mase (mouse). She is going tor (toward) it. She is going to ete (eat) it. her mom is qrod (proud) fo (of) her cud (cub), but she must len (learn) hou (how) too (to) rely (really) hunt.
And here’s an example of Maddie’s math work:
A shortened version of Maddie’s story can be found here.
Maddie’s assessment results
The first testing was done in September 2015, after Kimberly had spent about a year trying to teach Maddie a phonics-based reading program at home. The second testing was done after about seven months of using an Orton-Gillingham-based program at home.
First assessment, September 2015:
Maddie was administered ten subtests of the Wechsler Intelligence Scale for Children – Fifth Edition (WISC-V). She achieved a Full Scale IQ score of 87, which is Low Average.
Maddie was also administered the Wechsler Individual Achievement Test, 3rd edition (WIAT-III) to assess her current academic achievement. Her results are reported below:
Maddie was diagnosed with a reading disorder.
Second assessment, September 2016:
To evaluate Maddies overall intellectual capacity, she was administered the Wechsler Abbreviated Scale of Intelligence – Second Edition (WASI-II). On this test, Maddie achieved a Full Scale IQ score of 81, which is in the Low Average range and above approximately 10 percent of her same-aged peers.
To examine Maddie’s visual-motor integration and visual perception skills, the Beery Developmental Test of Visual-Motor Integration was administered. Compared to others her age, Maddie obtained an overall standard score of 85 (16th percentile), visual perception standard score of 96 (39th percentile), and motor coordination standard score of 84 (14th percentile), all of which fall in the Low Average range.
To evaluate phonological processing, the Comprehensive Test of Phonological Processing was administered. The scores are calculated by comparing Maddie’s performance to a group of individuals her own age.
To evaluate Maddie’s levels of achievement across a variety of academic tasks, she was administered the Wechsler Individual Achievement Test, Third Edition (WIAT- III). The WIAT-III measures current academic skills, including reading, mathematics, and oral language.
- Specific Learning Disorder with Impairment in Reading, Severe
- Specific Learning Disorder with Impairment in Mathematics, Moderate
- Attention-Deficit/Hyperactivity Disorder, Predominantly Inattentive Presentation
Maddie’s Edublox program
The program below has been customized to address Maddie’s deficits. Kimberly will be working with her for 2 hours per day, 5 days per week X 13 weeks. Part of Kimberly’s work will be to supervise the Edublox Online Tutor Reading exercise. An Edublox tutor will teach Maddie via Skype for 30 minutes per day, 5 days per week X 13 weeks, and 40 minutes per day, 5 days per week X 13 weeks will be spent on the cognitive exercises of Edublox Online Tutor — Maddie will do these cognitive exercises on her own. After the 13 weeks the amount of work will be reduced to one hour per day. To improve Maddie’s vocabulary a language exercise will be implemented, which does not require any active time.
Below is an outline of the 13-week program:
Edublox Reading Tutor: exercises numbers 1, 2 and 3 of a sub-world.
Edublox Reading Tutor: exercises numbers 4 and 5 of a sub-world.
Development Tutor: exercises numbers 1, 2 and 3 of a sub-world.
Do Counting exercise 3 every day for 5 minutes before starting the math exercises.
Topics must be introduced in the following order:
Flash reading/spelling exercise by a live Edublox tutor
Our first official day of the Edublox system, and Maddie really enjoyed it! Her favorite parts were the online system and learning new words! She said learning the “new, hard words” was fun. Her least favorite part was math. She said it was “really hard”, but I liked it because I could tell that it was really making her think.
I love the directionality exercises and the bdpq exercises. We have done some similar to these in vision therapy (which we did for almost a year), but not to this extent, and they never reached the point of automaticity that we will be achieving here.
The exercises are very well designed, they are multisensory, and I am very hopeful that they are exactly what we have been missing. I am SO excited that we have finally found something that I think is really going to work after having tried so many things that have failed!
Today went even better with all of the activities and exercises. Maddie is really working hard, and it shows. She has been interested in reading EVERYTHING today! She is even trying to read over my shoulder as I am typing this and that is a first! She was recognizing words all over the place when we went shopping today.
The only problem is that she is still not attending to small differences in words. For example, she noticed the word “Women” and was really excited, but she read it as “woman”, which is one of the words she is working on. She also noticed the word “vegetable” but she read it as “vegetables” for the same reason. I pointed out the difference between the word and what she read it as (and I told her the correct word), but I am concerned that she did not notice the difference herself. Later today, she noticed the word “oranges” and read it correctly, and she was very excited as she pointed out that she could read it.
Our first week of Edublox has been an adventure! We are trying and doing new things, and they all seem to be just what we needed. So far, I haven’t seen any huge results, but Maddie does seem to be a LOT more interested in reading. She also is noticing the words that are all around her, and have been all of her life, though she has taken little notice of them. Most of the time, when we are driving or walking through stores, she takes no notice of signs or anything, but this week, she has been interested in so many of them. I have been very surprised! A lot of them she has been able to read, though some she has needed help on. I think that it is just a confidence and awareness that maybe she COULD read those words now, whereas before, she felt like there was no use in trying.
Maddie has always been a hard worker, and she is working very hard at all of the exercises in Edublox. She LOVES the computer portion of the program, and she loves how supportive and encouraging it is. She is always telling me the nice things that it told her about how well she was doing, and I think it really boosts her confidence to see how much she is progressing from day to day. She actually seems to enjoy almost every portion of the program, but I think her other favorite part is when she is learning new words with Susan. I would say that her least favorite part of the program is math, but she still works hard and does her best, and she loves seeing how far she has come and how much she is learning!
Our second week of the Edublox program has gone well, though this week has been quite hectic. We were having some construction done on our house this week, so it has been a little bit of a struggle with all of the noise and commotion going on. Despite the distractions, we have been progressing in all of our exercises. This week we added subtraction for math, and that went quite well. In fact, though Maddie thought she would have a lot of trouble with the subtraction facts, she actually did better than she did with the addition. She has also progressed to the next step in the counting exercise, the directionality exercise, and the beanbag exercise. She actually really likes doing these exercises and is always trying to see if she can do it better in order to progress to the next step.
I am starting to see some improvement in her BDPQ confusion. She has not written any of these letters backwards this week! She also made much less mistakes in reading these letters as well. In her sessions with Susan, she is up to 100 words, in just two weeks! She has also been more interested in reading this week. She picked up a comic paper and started reading it one day, and she also started reading the book we were reading at bedtime, because I was taking too long, and she got tired of waiting on me to read it. Though she did make some mistakes, overall, there seems to be some improvement in her reading, and especially in her interest in reading. We have also started the language exercise this week as well, and I am already seeing some new vocabulary that she has picked up just in a few days of doing the exercise. We are looking forward to learning more and excited about what this next week will bring!
Our third week of Edublox has gone well. This week we started a new spelling exercise that went surprisingly well! We also added multiplication to our math program this week, and it has gone better than I expected. We are progressing in most of the other exercises as well. I am also still noticing an increasing interest in the written word, and she quite frequently tries to read things that she would never have tried before. Also encouraging is that she is also increasing in accuracy when trying to read these things. She is also advancing in most of the EOT program, and she still enjoys this part of the program the most. Maddie is working very hard, and she is looking forward to all of the new things she can learn!
Compare the “before” with Week 3, when taught by her live tutor:
Somebody asked me this week about the differences between the Edublox program and Orton-Gillingham. They are very different, like night and day really. To be honest, it has been a little scary stepping out and trying something so drastically different from what I am used to!
Edublox does a lot of work on all of the underlying issues that cause dyslexia, while Orton-Gillingham focuses on intensive phonics and phonemic awareness only. Orton-Gillingham is very explicit and systematic in teaching phonics, to the point of an extraordinary number of rules (and all of the exceptions to the rules), while Edublox just teaches very basic phonics, and seems to focus on building visual memory, auditory memory, visual spatial ability etc. through multisensory exercises, repetition, and building a foundation of skills that are practiced to the point of automaticity, not just until the child is able to do the skill.
There is very little repetition built into the Orton-Gillingham program, though we did quite a bit of repetition due to difficulties in retention and lack of fluency. Though, looking back after starting the Edublox program, we did not do anywhere near the amount of repetition as we are doing now, and we were trying to do too many words at once. In just this short time of doing Edublox, she has already forgotten the rules that she learned doing Orton-Gillingham, even though she has known many of them for over a year! I thought some of them were automatic by now, and thus stored in long-term memory, but obviously they weren’t. So I guess that shows that it takes a lot more to get to the level of automaticity (and long-term memory) than I thought. I think that is the key in the Edublox program. We don’t just practice something until she can do it, we keep going until whatever we are working on is automatic and effortless, which takes much more practice and repetition than I ever thought!
On that note, this week has been mostly working on building this foundation through lots of repetition. We did not advance on most of the parts of the program this week, though we did add a new spatial exercise and she did advance in one exercise of Online Tutor that she had been unable to before this week. We also advanced on reading and did a lot more work on spelling this week, and that went well. We are continuing to work hard, and we are looking forward to next week!
This has been our fifth week using Edublox, and we seem to be at a plateau in most areas of learning. We have been drilling a lot of the same things this week, but I am hoping that we will start seeing more rapid progress soon. She is progressing in the Edublox Online Tutor in some more areas that she was having difficulty with, so I am hoping that more progress in those areas will start to show more in her reading, spelling, and math.
She did start a new reading exercise with Susan this week, and she has done really well with it. Not only that, but she also thought it was a lot of fun! She also seems to be improving some on BDPQ confusion. This week, if she wrote any of them incorrectly, she caught them herself! I also think that I am seeing some improvement from the language exercise, because I have noticed several new words in her vocabulary recently from the language exercise. Overall, it has been slow progress this week, but hopefully we are laying the foundation for improved learning in the future.
Compare the “before” with Weeks 3 and 5, when taught by her live tutor:
This week, Maddie has gotten over the plateau that we were on last week. She also read a book this week just for fun, the first time this has every happened! She needed help with the big words, but overall she did pretty well. It was a book about lions, so she enjoyed learning about one of the animals from Africa!
Lately I have been contemplating all the difficulties and challenges of having a child with severe dyslexia. When Maddie was first diagnosed, I was relieved to finally have an explanation for her struggles, but at the same time I was worried, anxious, and disheartened by the difficult journey ahead. There were several people telling me that she would probably never read, that she would need special assistance for the rest of her life, and that I should try to steer her away from career choices that involve success in academics. It was hard as a mother, who had wonderful visions of her child’s future, to think that it might not be possible, to think that her options were diminished due to something as seemingly simple as reading. Now, I am not a quitter, and I don’t usually give up on things, so I resolved that this would not be the case with my daughter. I resolved that I would do everything I could to help her become an accomplished reader. The problem was, no matter how great my resolve and no matter how hard we worked, we were still getting nowhere. I researched all of the best programs for dyslexia, and we diligently worked at all of them. I did everything that I could think of to help her, including speech therapy and vision therapy. With every new thing we tried, I had hope that maybe THIS one would work. However, over time, I began to lose hope. I began to doubt that anything would work, and I began to view anything that claimed to “treat” dyslexia as nothing more than a scam to take the money of a desperate parent trying to help their child. I had come to the conclusion that maybe this WAS a lifelong struggle that would never go away. Maybe they were right, and I should start steering her toward things in which she could be successful outside of academics.
If you do not have a child with dyslexia or know anyone who cannot read, you cannot imagine the feelings of hopelessness, disappointment, and desperation to find something, anything that will work. You cannot imagine how limiting it is in the life of a child to be unable to read anything, to be surrounded by the written word and it being forever out of your reach. Think about all of the things around us that are in written form: signs, pamphlets, instructions, cereal boxes, recipes, sewing patterns, worksheets, movies, electronics, the internet, the Bible, board games, birthday cards, schedules, the buttons on household appliances (such as dishwasher, washer, dryer, oven, etc.), and the list goes on and on. We live in a world that revolves around literacy, and those without are so limited that it hurts to think about it. I literally hurt for my child every day because of all of the things she is missing out on in everyday life. Think about going through life depending on others for even simple things such as reading the buttons on the washer to choose the right cycle to wash your clothes, or getting a new toy and having to wait on a parent to have time to read the instructions to you, or wanting to know more about a subject that interests you but being unable to look it up or find more information on it, or wanting to make a recipe on your own but being unable to even read simple instructions and ingredients, or wanting to do a sewing project independently and not being able to read even the simple instructions in the kids sewing book, or believing in God and wanting to study His word, but being unable to do so because you simply can’t read it.
I think about all of the times I read something, anything, throughout the day, and sometimes it makes me cry just because I know it is something, seemingly so simple, that my daughter cannot do. In fact, I am crying as I write this just thinking about it. The gift of reading is something so precious and crucial to modern life, but it is something that most of us take for granted. I desperately wanted to give this gift to my child, no matter what it took. So I started looking at the latest research on dyslexia, instead of just reading websites from “experts” on the subject. What I found surprised me. It appeared that, in America at least, there isn’t a lot of actual research going on about dyslexia. Most of the research I found was from other countries. I also found that the “gold standard” of treatment for dyslexia, which was supposedly Orton-Gillingham, actually did not have the research base that I had been led to believe. I discovered that, despite all of the information out there on dyslexia, there is actually no consensus in the scientific world on what dyslexia actually is and what causes it. There are many theories, but no consensus. My first thought was, if they don’t even know what it IS, then all of our efforts are hopeless, because you can’t treat something if you don’t know the cause. Then, in my research, I stumbled upon the Edublox website. The website seemed to have answers to so many unanswered questions, but I was still afraid to hope. When I contacted Susan, I wasn’t sure what kind of response I would get, but I never expected the depth of knowledge and patience to answer all of my questions. I am still somewhat afraid to hope about the future, but I have found myself contemplating all of this over the past week. I have inadvertently found myself dreaming again about what the future may hold for my daughter, and starting to hope that maybe her future isn’t filled with limitations, but with possibilities.
This week we have started seeing some real gains in pretty much all areas. I have noticed a great improvement in her spelling during her tutoring sessions this week especially. She doesn’t seem to just be writing down random letters anymore, and when she does make a mistake, it is usually a small one. If my count is correct, she is up to about 150 spelling words with EOT, and about 50 more challenging words with Susan. She is almost finished with the first portion of the EOT reading and spelling program. She is getting along very well in math now, and she will be ready for division next week. She seems to have really gotten over her plateau this week and is starting to plunge ahead. I am feeling great about her current progress, and I am encouraged by the improvement we have seen this week!
I am feeling rather ambitious, so I went ahead and ordered her homeschool curriculum for next year. In the past, I have usually gotten something well below her grade level, because she just couldn’t function at the appropriate level, but I went ahead and bought regular 4th grade curriculum for next year. I am very hopeful that she will be ready by the time next school year starts!
Her tutoring session on Monday was incredible! It actually brought tears to my eyes watching her spell all of those difficult words. I was so impressed! Then she actually spent some independent time studying the spelling words throughout the week for her test on Friday, and she got 100 percent correct on the spelling test. She was so proud of herself, and we are as well!
She is also improving in her naming skills, and we are working on quite a few different things for that, including her address, city, state, country, continent, and planet, as well as pertinent information about our country. She is also feeling much more independent and confident in herself as she is branching out more and doing things herself. She wanted to buy something online, and she used the computer to find what she wanted all by herself, without any help! She also stayed up late one night reading a book. We were reading a book at bedtime, and she wanted to know what happened, so she kept reading. I have wanted her to WANT to read for so long, that I just didn’t have the heart to make her stop and go to bed, so she stayed up for about an hour reading. She read more than I think she has ever read at one time. I had to help her with some of the words, but she really surprised me with some of the words that she could read. Many were words that she has not been taught yet. We are definitely heading in the right direction, and it is exciting to watch all of the changes!
Maddie writing her first spelling test!
I believe we are on week 9 of our journey with Edublox. Maddie is certainly making a lot of progress, but we still have a long way to go. We have started long vowels with EOT this week, and she has had some difficulty with it. However, she is making a lot of progress in other areas. She is progressing in the other exercises on EOT, as well as the exercises we do at home, such as the spatial exercise, the beanbag exercise, the directionality exercise, and the BDPQ exercise. She is also making a lot of progress with math and counting.
Maddie wrote a story about the broadway play Wicked that we went to see. She used the playbill to spell the names. I did not help her at all, so everything else was spelled on her own. Her handwriting and spelling has improved a lot! I had her read back through it herself after I took this picture, and she caught a lot of the mistakes herself. I helped her to correct it after that, but they were mostly grammatical mistakes because she hasn’t done very much writing at all before now. I love how she is feeling confident in her ability to write on her own, and how that confidence is giving her courage to try new things!
Maddie is also making good progress on the cognitive exercises of Edublox Online Tutor!
We thought that Maddie might be on a little bit of a plateau, so we did not add any new words this week. She is doing better with the long vowels this week, but for some reason, BDPQ issues are still giving her trouble in her reading this week. However, by the end of the week, she had improved quite a bit. She is making excellent progress with her home exercises, especially the spatial exercise and the beanbag exercise, and she is getting much faster and more accurate on the directionality exercise.
We went to the library, and she picked out several books to READ (not for me to read TO her). She couldn’t wait to read them, and actually read one in the car. It was a beginning reader, but she did pretty well and only needed help on a few words. She was excited that she was able to check out books from the library for her to read by herself!