Dyslexia – What to Do?

from flickr @murphyeppoon

A while back I posted about Our Dyslexia Journey, attempting to share our experience raising and homeschooling a houseful of kids with Dyslexia.  I recommend reading that post first as it coves some things that will not be mentioned in this post, including how God’s Word speaks on this issue.  I ended that post with the promise of a future post on the causes of dyslexia and the best treatment methods.  Trouble was, when I sat to write about the causes of Dyslexia, I realized that I still did not know.  

I recently had the distinct pleasure of listening to the director of our local National Institute of Learning Development (NILD), where two of my kids receive weekly tutoring, speak on the history, causes and treatment of dyslexia.  If this is an area that concerns you, you will want to read through this {fairly} lengthy post.  It is a goldmine of information!

First of all, the good news:  ALL CHILDREN CAN BE TAUGHT TO READ

Statistics show that:
  • 5% will learn to read on their own
  • 20-30% will learn to read relatively easily once exposed to formal instruction;  most methods will be effective
  • 30-50& will find learning to read to be difficult without direct systematic, explicit instruction
  • 30-50% will find learning to read to be the most difficult challenge they will ever face
  • 50-60% of kids with dyslexia have ADD or ADHD
Signs
You may be wondering if you or one of your family members have dyslexia.  There are signs and characteristics that parents and teachers can look for.

In young kids
  • articulation difficulties
  • rhyming words
  • word retrieval
  • difficulty manipulating sounds
  • sound sequencing
  • word sequencing
Visual
  • confuses letters and words with similar appearance
  • slow rate of perception
  • reversals in reading and writing
  • difficulty retaining visual sequences

Auditory

  • difficulty hearing the differences among speech sounds
  • difficulty discriminating short vowel sounds
  • difficulty with blending and segmentation
Characteristics

Childhood – Elementary School
  • difficulty expressing oneself
  • delayed learning of tasks such as tying shoes and telling time
  • inattentiveness; distractibility
  • inability to follow directions
  • left-right confusion
  • difficulty learning the alphabet, times tables, words of songs, rhymes
  • poor playground skills
  • difficulty learning to read
  • missing the order of letter or numbers while writing

Adolescence and Adulthood

  • difficulty processing auditory information
  • losing possessions;  poor organizational skills
  • slow reading;  low comprehension
  • difficulty remembering the names of people and places
  • hesitant speech; difficulty finding the right words to express self
  • difficulty organizing ideas to write a paper
  • poor spelling
  • inability to recall numbers in proper sequence
  • lowered self-esteem due to past frustrations and failures

Causes


Children have been having trouble learning to read through the ages.  Teachers and now scientists have looked into the causes of this phenomenon extensively and theories have changed with the advancement of technology.  The current thought is that dyslexia is an inherited condition that causes interference with the processing of language.  Dyslexia is complex.  A dyslexic can struggle with auditory processing,  visual processing, or both and in varying degrees.  Of the many variables in how the brain processes information (both on the auditory and visual scales) no one factor is present in all individuals.  For this reason, dyslexia cannot be neatly categorized.
In 2000, Sally Shaywitz, author of Overcoming Dyslexia, and researcher at Yale University, did studies using Functional MRIs to look at the neural pathways that were used by both ‘good’ readers and ‘poor’ readers.  What they saw drastically enhanced what professionals know about the mechanics behind dyslexia.   The researchers were amazed to see that the pathways of the good readers were direct:  impulses transferred directly from the eyes to the reading center of the brain;   while the ‘poor’ readers’ pathway was much more convoluted.
How you can help?

The good news is that there are steps that can be to minimize these processing issues.  You should be aware, however, that there are plenty of programs, treatments and therapies {some of them quite costly} that do not help.
Testing
The first step for anyone seeking treatment strategies for dyslexia is to have the person you suspect is dyslexic tested.  The type of test you choose is critical since it will determine the best method of help.  The tests should not just be achievement/educational in nature (i.e. how much science, history and math the child understands).  Though the testing should look at IQ, the tests also need to look at processing weaknesses;  attention, memory, visual-motor skill and organizational skills.  

The results of the testing will determine the next step – choosing a treatment.
Treatment

When my oldest kids were younger, not as much was known about the cause and treatment of dyslexia.  There was a common misconception that these kids were ‘late bloomers’ and that they would outgrow their reading problems.  This is no longer believed to be true and it is now understood that early intervention is critical.  Remember the indirect pathway that the ‘slow’ readers had?  Direct, explicit teaching of language concepts results in neural reading pathways changing, improving and staying that way – a successful treatment.  The earlier you get started, the quicker the child learns to process language reasonably quickly, avoiding the social stigma and emotional issues that so often accompany being dyslexic.

Some therapies focus more on one particular issue (i.e. phonological awareness or phonics instruction) and not the broader processing issues at the root of the problem.  Over the years, we have tried many things to help our dyslexic kids (that is 5 of our 6 reading-aged children!).  The best treatment we have found by far is the National Institute for Learning Development (NILD).    Local therapists can be located and more information gleaned at  http://nild.org

From the NILD web site. NILD Educational Therapy® was developed to treat assumed, underlying causes of learning difficulties rather than simply treating the symptoms. It is a true therapy in that it aims the intervention just above the student’s level of functioning and raises expectations for performance. Students are trained to view themselves as competent, confident learners. The goal of NILD Educational Therapy® is to help students develop tools of independent learning in the classroom and in life.”

Our two children in this program have had unprecedented successes since starting with NILD.  After using several other dyslexia treatments, our then 12-year old was still unable to pick up a book and ‘just read’.  After one year at NILD, he improved 5 grade levels in reading ability.  It was not easy, as the therapists are focusing their attention on the child’s underlying weaknesses.  He stuck with it and is now in his second year of educational therapy building in accuracy, comprehension, fluency and spelling every week.  He is able to handle most of his 8th grade curriculum on his own now.  

Our 8-year old has been in the early intervention program at NILD, called Search and Teach, for going on 2 years.  At 8-years old, I am amazed to say that she is able to read on her own at just under grade level.  Her reasoning skills and auditory and visual memory have vastly improved.  In the past, we used to review phonics rules ad nauseum but she is as quick (if not quicker) than her 7-year old sister (who is not dyslexic!).  

I know that this post was super long but the complexities of Dyslexia are such that there is no other way to explain it accurately.  Please see the Resources below for further assistance in determining if your kids have a learning disability and what you can do to help.  

Please feel free to ask me any questions here in the comments section and I will answer them to the best of my ability.


Resources:
My new web site:

Marianne Sunderland

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Comments

  1. Thanks for sharing.

  2. Ingrid Fiedler says:

    Bull’s eye! Eric hits nearly every item on your list. The exception is that he very organized. I have read countless books on autism, learning disabilities, and other disorders. Thanks for being both concise and precise. Left a message with Ramona today. I think Nathan might have issues too.
    Ingrid

    • Marianne says:

      Ingrid – so gald that the blog was of help. NILD is the best we have seen at strengthening the processing speeds. Call me!

  3. Marianne- I’ve been meaning to read your posts on dyslexia for quite some time now and glad I just sat myself down to finally do so!

    I found your journey fascinating, more than likely as I’ve interacted with your first born on many occasions and can see that he’s doing just fine. Hearing (reading) the back story about the struggles when he was younger is interesting as really, who would know upon meeting and engaging with him?

    This topic is something very close to my heart as my husband is dyslexic. He got it from his mother, who got it from her mother, and on and on it went. Well, our daughter Becky ended up with it, DESPITE all my desperate praying while I was pregnant with her that it would skip the impending genetic hand off. Funny thing is, joke was on me as I was so incredibly worried that she would “just” have dyslexia, she inherited a whole lot of other problems associated with dyslexia, “cousins” of it if you will. Like Verbal Apraxia and Synesthesia. Two major genetic bombs that affected our lives so profoundly, I never would have imagined that dyslexia would play such a minor role in her learning processes.. that it would become “just” dyslexia.

    Verbal Apraxia knocked us on our asses- (pardon my language) Becky’s receptive language worked just fine, her brain was hooked up so that she could understand everything we were saying without a doubt— it was her expressive language that was “broken”. Like Abby, she didn’t speak, but not because she could and didn’t chose to, because she literally couldn’t. She never babbled as a baby, never said Mama or Dada… just grunted and pointed. We knew something was wrong by age 3 and took her to specialists where we lived up in Northern NV. She was diagnosed and we immediately started communicating with her through sign language. She made up most of her own sign language, and we lived that way for over a year. We got her in early childhood development classes, were blessed enough to get her with some great teachers and then she took off, finally started talking. The dyslexia showed it’s ugly head once she was finally writing, but it was so minor compared to the battle that we’d just conquered, we really didn’t care.
    So now, fast forward…Becky will turn 14 this week. She’s been on an IEP with our public school system from the age of 3 when we initially enrolled her, up until TODAY, when I just signed off on the paperwork to finally end the need for an IEP in the school system. We just recently discovered she has synesthesia like her father and her grandfather, which can be explained (better than I can explain it) in this article here: http://faculty.washington.edu/chudler/syne.html
    It makes things interesting for her when she is trying to do testing, but she gets through everything somehow. It just takes her longer.

    Thank you for sharing your journey with us. You never know WHO in your immediate realm is going to be touched by what you write as we don’t really know what people have gone through, and/or are going through, now do we? (I bet you never would have guessed I’ve had these struggles in my family!) I am constantly in awe of how my husband and daughter both overcome their genetically “altered” brain wave limitations and excel despite the fact that they are there. I’m so proud they’ve accomplished what they have and will continue to be their cheerleader as I watch from the sidelines.

    Blessings to you mama!
    -Steph

    • Marianne says:

      A great deal of Becky’s success is most likely related to your passionate advocacy, Steph. Unfortunately, most schools just are not equipped with the right tools to help these kids. Because dyslexia has so many variables, treatments cannot be of the cookie cutter variety. You do never know what others’ experiences are. You are such a prolific writer – I never would have guessed that dyslexia or any other learning struggles were in your story. I am reading an amazing book right now called The Dyslexic Advantage. It basically is looking at the flip side of dyslexia. Dyslexics are very talented (in areas besides reading and spelling). The book looks at successful dyslexics and their life stories. A fascinating read! Blessings to you too!

  4. Thank you for this information. I am going to come back and read the rest of it too.

    • Marianne says:

      Hi Christi,
      I’m glad you found the info useful. Feel free to ask any questions.
      Blessings to you!
      Marianne

  5. I realized my older daughter has dyslexia when she was in 3rd grade. After a few months of trying to work with her school we decided homeschool is the best option. We’ve gotten great at finding the good parts of dyslexia and adapting material for her. However, now I am trying to teach my 1st grader how to read. This is new territory for me, as my older daughter already had muddled through the basics in regular school. She knows letters and sounds and definitely also has dyslexia. Can you sugest something?

    • I really like the All About Reading Curriculum. It is hands on, multi modal (uses sight, sound and touch) and is systematic. It is reasonably priced and easy to use.

      Here is a link to their site.

      Also read alouds are very good. We now use a lot of books on CD from the library or downloaded from various places on line. Any more questions, feel free to ask!

  6. In your earlier post you described my 8 year old son to a tee! We have done many months of visual training and it has helped him tremendously, but he struggled. Last year a our old school they finally listened to me and got him extra help in phonics, I said he wasn’t grasping The sounds and wasn’t able to blend them. Now we are at a new school and he has progressed with his reading, but still struggles. I know he will struggle throughout his life as his dad has severe dislexia. He has not been officially diagnosed with dyslexia and I fear at his new school I much more convincing that he has his struggles. They are wanting to cut back on his special Ed time. I told them no. We have his IEP meeting coming up and, of course, we will talk about it more.

    I do have a question, what are your thoughts on cursive handwriting? I worry about confusing him more because he still struggles with print and directionality. He can home with a cursive paper on Friday.

    I wish I could get him more professional help, but we moved to a much smaller town in Nevada this year. So, I am on the search for knowledge to help him on my own.

    Thanks for your post and your time to read my lengthy response.
    Kim

    • Hi Kim,
      I highly recommend you buy the book called Parenting a Struggling Reader by Susan Hall and Louis Moats. It is a terrific guide to understanding dyslexia and especially about navigating the school system, what your rights are and how best to be an advocate for your child. I don’t have any experience with the school system because we have always homeschooled.

      I actually really like cursive. It helps stop reversals and the fluid writing is good for their brains. I print up cursive pages for them to TRACE while listening to music. This gets the flow of the writing going. A little bit every day is best.

      He may struggle for soem time – he is still young. I would push the school for a research-based reading instruction program. Another good place for information on how to navigate getting your child what they need from the school is Susan Barton’s site http://www.dys-add.com/

      You will need to be assertive and push the school to give your sone what he needs. Do not let them tell you that he will outgrow it. If hehas dyslexia – he will not outgrow it.

      The flip side is that these kids {and adults} are very creative and have a LOT to offer. Look at my post on The Ultimate List of Dyslexia Resources for more resources.

  7. Mary Katheryn Freeman says:

    IDA – the International Dyslexia Association is a non-profit organization dedicated to helping individuals with dyslexia, their families and the communities that support them. Their research, support, resources concerning dyslexia are their main focus and an invaluable resource. They encourage Orton Gillingham instruction. http://www.interdys.org/

    Their whole focus is on dylsexia…you should really add this resource to your links.

    3 of my 5 personal kids needed intervention for dyslexia on our homeschool journey and I am super grateful for IDA and the answers we have received.

  8. Kim Royer says:

    Hi, I have reading your comments. I would like to ask you a few questions about NILD. Please email me and I will give you my number or maybe I can call you.

  9. Dorothy Molnar says:

    I just came across this site. I have a ton of questions, as at this point I’m not sure if my grandson is dyslexic.
    Please e-mail me, thank you,
    Dorothy

  10. Chrissie says:

    Hi, thanks for your info on dyslexia. We have been trying figure out what to do for our 11 year old daughter. I am pretty sure she has dyslexia. We had some testing done 2 summers ago but like you we were returning overseas about a week after the testing was done so I never got a chance to go over the results with the tester. It wasn’t testing for ‘dyslexia’ but an effort to find out what type of learning difficulty she has. I often tell my daughter she if fearfully and wonderfully made, we just need to figure out how God made her brain to function. We struggle with spelling, reading and math. I am overwhelmed and often confused at all the information I find on line. I will be reading more of your blog. Thanks again!!!

  11. Michele says:

    Marianne…..I am so excited to have stumbled on your web page! I have to ask you a rather personal question, but what are the estimated weekly/monthly fees associated with NILD? Three of my four kids struggle with dyslexia and one of the three has severe ADHD. Thank you for all of this information! It is extremely helpful!

    • Marianne says:

      Hi Michele. The price for NILD does vary with loation but our cost is $450/month. We only have our severely dyslexic kids in the program. It is a wonderful program!!

  12. I suspect my 7 year old daughter may have dyslexia. She doesn’t exhibit all the signs, but enough that it concerns me and warrants looking into. In preschool, she had trouble learning the letters and sounds, colors and shapes. She struggled through public kindergarten when friends her age were zooming through the early steps of reading. We decided to pull her out and homeschool, mostly for reasons unrelated to this, but it did play a small role in our decision. I have seen some improvement but certainly not what I envisioned. We already use AALP for reading and spelling. She’s gone through level 1 and almost half of level 2 but oh it’s a daily battle! When sounding out words (and yes, she must still sound out every. single. word.) she often will switch the beginning and ending sounds or simply forget what she has sounded out for the beginning by the time she gets to the end of the word – even short words. She excels in math, but can’t read the word problems and continues to write her numbers backwards occasionally. She also may be ADHD as she absolutely can not sit still to save her life, haha. She’s certainly a highly distractible child at the very least.
    Anyway, my question is this… how do I proceed with testing? Pediatrician? Psychologist? Online testing? I have no idea who to turn to. I want to help her but at the same time we are on an extremely limited budget. I’m scared I won’t be able to provide what she needs if it does end up that she needs help of some sort.

    • Hi Amy. Your daughter does sound like she has dyslexia. Many kids with dyslexia are also ADD to some degree. I let my wiggly ones sit on a large exercise ball while doing school. It kind of drives me nuts to have them nearly bouncing to the ceiling while I’m trying to teach them, but it really does help them to focus. They need to move to activate their brains!

      To find a tester near you, you can contact:

      International Dyslexia Association (IDA). Call the IDA at 410-296-0232 or e-mail them at info@interdys.org If you give them your zip code and e-mail address, they will send you a list of professionals nearest you.

      Academic Language Therapy Association. Call 866-283-7133 with your zip code and phone number. They will call you back with a list of providers.

      Association of Educational Therapists. Call 1-800-286-4267 with your zip code and phone number.

      Your daughter may be more severely dyslexic and need extra help of a tutor. Several of our kids see a tutor at NILD
      It has been extremely helpful for them (and me!). SOme of our kids are able to do well – although delayed – by working with me at home.

      I hope this is helpful. Let me know if you have any other questions.

  13. Christina says:

    I just happened upon your blog while searching dyslexia information and have been enjoying reading it. Thank you for sharing so much helpful information!
    I have a question for you. You mentioned your two most severely dyslexic children are in therapy. Could you give me more information on what you do at home with the others? Is there a resource you would recommend for parent-lead treatment ideas at home? My son has not been diagnosed but it seems very likely he is dyslexic.
    Thank you in advance for any advice!

    • Marianne Sunderland says:

      Hi Christina. Welcome! It depends on how old your kids are and at what level they are reading. If they are still young, say under 10, I use All About Reading and Spelling. If they are older, I would use Reading Horizons Elevate. It is a computerized program that teaches reading very systematically. Let me know if you have any other, more specific, questions!

  14. What do you know about Davis Dyslexia and its effectiveness if anything? Thanks so much for your blog.

  15. Hi! Our DS has undiagnosed dyslexia… he is 10 and is reading at about a beginning 2nd grade level. Right now I am using Explode the Code (book 2) to make sure he has his blends down. Not sure if I will continue with ETC or move to Primary Phonics. Anyway, we are 1 1/2 hours from the nearest NILD evaluator/tutor listed. My question is would it be better for me to contact the evaluator or just purchase on OG based reading program? If you suggest the latter, is there one you would suggest over another? Thanks!

    Faith

    • Marianne Sunderland says:

      Hi Faith. At 10 years old I would be beginning to think more seriously about getting some tutoring. We have used Explode the Code for practice but not for our primary mode of instruction. Does Primary Phonics use an Orton-Gillingham approach? I would purchase an OG based program and see how it goes with that instruction. Keep your eyes and ears open for a good OG-based tutor (doesn’t have to be NILD – could be Barton or other). If he is still not making good progress by the end of this year, I would consider tutoring because of the emotional burden not being able to read can place on kids. Hope this helps!

  16. I am at a place where I need to have my 7 year old tested. I want to know where I can look for appropriate diagnostic testing? Do you know if these places are required to report their results to the state? I am a little hesitant to have my child labeled with an official diagnosis. I would love to keep things private, but I also want to make sure that my child is getting all the help she needs.

  17. You mentioned programs that don’t work. What is your experience/understanding of the Susan Barton Reading program and Lindamood-bell program for kids who have diagnosed dyslexia and dysgraphia? I am also looking at an NILD therapist in our community.

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