Dyslexia – The “Invisible” Disability?

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I am a special education teacher of 30 years. I have taught every category of students with disability, including autism.  But it seems now that autism is everyone’s main focus. Lobbying groups are huge – they receive everything.  On the contrary, these same advantages are not enjoyed by the dyslexic population of special ed.  Dyslexia is the invisible disability.

The “D” word is often not allowed in schools.  Children are not tested specifically for it and rarely treated. Parents are told their children with receive “accommodations.” No one bothers to remediate them. Or, worthless goals and objectives are placed in the IEP for a “reading disability”.

Students with dyslexia can be completely remediated with the proper multisensory training.  Once they are taught to read by the proper method, they can do anything.  Unfortunately, I have seen these students relegated to “learned helplessness” by systems who just push them through.

You speak our language. I am dyslexic.

I was remediated for two years, one on one, hour a day, 5 days a week, using strict Orton-Gillingham, by Diana Hanbury King,one of the world’s best.  Many years later, Diana founded Kildonan School (http://www.kildonan.org).  In the summer, I attended Camp Mansfield, founded by Helene Dubrow, one of Orton’s disciples. There I was tutored by Roger Saunders, past president of the Orton Dyslexia Society, i.e., now the International Dyslexia Association.

I had intensive remediation from two who are now considered to be the best in the world.

In the early 70’s when I was a juvenile probation officer, I did several presentations at the national conferences of what was known at that time as the Orton Dyslexia Society and the Association of  Children with Learning Disabilities. I discussed the relationship between Dyslexia, LD, and Juvenile Delinquency.

A Shift in the National Trend

Today, Wrightslaw’s Special Ed Advocate, has over 81,000 subscribers. Easily 80% of the emails we receive about our newsletter and website are from parents of children with autism seeking help, in crisis, or asking questions.  The autism cases are far greater in frequency and number than dyslexia cases.  A shift has occurred.  It was not that way 10 years ago.

In the early 80’s most of my cases were labeling and eligibility issues.  Mid 80’s through early 90’s, cases shifted to tuition reimbursement for private placements of children with dyslexia or LD into private day or residential schools.  My cases pretty much tracked the national trend.

After my US Supreme Court Carter case in 93, tuition reimbursement cases continued. With Lovaas and ABA now being reimbursable, these cases began to increase in number to a virtual flood of litigation that surpassed dyslexia/LD reimbursement cases in great numbers.

Parents in Crisis

More and more of our conferences are organized by parents of children with autism.  We have noticed that parents of children with autism are more obsessional, more driven.  Reason? Our belief is that often their kids were developing normally. Somewhere between 18-20 months of age, within a 2 month timespan, these children lost communication skills, became inward, withdrawn, perseverative, etc. and the parents “lost” their child.  The devastation is incredible.  Parents are driven to “recover” their child.

Parents of children with dyslexia and/or LD may notice speech delay, then reversals, then sequencing and sound/symbol relationship problems. It is slow and the child’s personality is still there.  I know, it happened with my oldest son.  Before he was two, I began with intense speech language therapy.  With both of my sons, I became their Orton-Gillingham tutor.

Bottom line, I agree with your observations. But the reason it may appear there is more focus on autism than dyslexia is because more parents of children contact us because they are in crisis or they want us to do our Wrightslaw training program. Legal cases with autism are more frequent than those involving dyslexia.

  1. Lori-
    Ask for, in writing, a meeting to refer your daughter for special education eligibility. Bring any and all documentation from doctors that specify the disorders. The school cannot refuse to test her.

  2. My daughter has been diagnosed with OCD, ADD, Processing disorder and a math disability. She did not read until the 4th grade and has 3 siblings that have been diagnosed with dyslexia. Her IQ is fairly high At least 126, but she struggles with gifted work because of the amount of time it takes her to read and process this information. She has three times been denied a 504 because “She is smarter than 90% of her classmates. She may have to leave her gifted classes because she is unable to handle the workload since everything takes her 3 to 4 times as long as her classmates. In every meeting it is agred that she has disabilities and has a hard time, but is denied because she keeps decent grades. Please help, if I can’t bear to walk in her bedroom one more night at 3:30 AM to her crying and begging me to keep her awake so she can finish.

  3. My daughter has dyslexia, she has been on an IEP since 1st grade and is currently in 7th grade. They have allowed her modifications which have helped and her teachers have always tried to work with her and I have appreciated that. But now, thanks to Common Core, she will not be allowed the modifications on the required yearly test. She took the test last year with accommodations, and it stated that she should be allowed accommodations again this next year, but since Common Core will be fully implemented, no accommodations will be allowed. I hate fighting for accommodations on her IEP when it’s not going to matter if they won’t allow them due to Common Core. What can I do?

  4. I need someone to review my child’s proposed IEP and the bogus annual measurable goals the school wrote. I need recommendations for specific goals related to dyslexia, what scientifically based programs and how to accomplish it and how they will measure it. Can anyone give me names of people in Ohio? Our child was recommended to have an academic coginitive tutor (with training about dyslexia), but the school thinks the intervention specialist is that person. It is obvious she doesn’t have training nor understands dyslexia! What are we to do?

  5. I am a parent with PDD-NOS on the autism spectrum and severe dyslexia. Trying to get an ed plan that addresses both of these diagnoses is impossible. When people can’t see disabilities they have less compassion and understanding. Also dyslexia is now losing its classification under the dsm -5. They want to put it under the sld umbrella. Children with dyslexia are already being ignored, socially promoted and not given the proper remediation to succeed. what are parents to do? we just allow school districts to push our kids thru or do we keep pushing for change and make schools recognize and remediate this deficit properly to give these bright kids the opportunity to succeed?

  6. First, my dyslexic child has had some great teachers who advocated for her. Many of the teachers did not have the resources or training to understand or even recognize dyslexia, but they tried. As I am ending another year in the public school system, I may pull my highly motivated child out of public school and pay for her go to a private high school that specializes in working with dyslexic high school students to fully prepare her for college. Indeed, the public school can provide FAPE and supportive help. Every year there has been a teacher who does not want LD students in the classroom and are not willing to educate himself/herself on LDs nor work with case managers. They are tenured and not held accountable. I am not giving up-just looking at the reality in some public schools.

  7. I work with autistic kids several times weekly tutoring, using Aba. I have a son who is dyslexic and I would love to have the $20K that is available to the autistic children’s parents. Why is there not a movement for this? Dyslexic kids are right brained learners. They can learn just differently. I think it is absurd that we have teachers with degrees and certificates and have NO CLUE how to teach these kids. What is even more alarming, is the special education teachers don’t have a CLUE either. How is this possible in this day and age?

  8. Google Eaton Arrowsmith school- my son has LD and ADHD. We just started here. It is cognitive therapy for learning differences. It is helping!!

  9. I have a 28 year old son that was not diagnosed with dyslexia until the 8th grade. We pulled him from public school after two weeks of kindergarten in favor of home schooling him. He would have slipped through the education cracks and to this day thanks me for tutoring him at home. He went on to join the U.S. Army .. driving a tank .. he overcompensates his LD by being a over achiever.

  10. Contact the state department of special education. Meet with them, take time off from work to do anything that needs to be done and get an advocate, contact advocacy groups in your state. It can make a difference. If you must, pay for an independent evaluation. Pray, ask others to pray but do the research and act now. You have a few more years in school and with assistive technology, specialized reading help, etc., your daughter will be able to read better. Why wait? I have been up at 3am doing research, writing letters, arranging meetings, and it is working. Do everything and leave no stone unturned. Check out: http://www.childrenslearningcenters.org/about/about.html

  11. I am proud to say that I am a Dyslexic teacher and agree that if identified and re-mediated correctly with a multi-sensory approach all dyslexic students can learn, not to mention EXCEL in the world.

  12. I have an 11 year old with dyslexia. School district is refusing to recognize it, they say by law it is not a learning disability, even though I have showed them the IDEA 2004 information.. Three years under IEP and he is now failing reading. Their goal is to push him through no matter what. They refuse to even say the Dyslexia word even though we got an independent eval at our expense. We hired an attorney and planning on due process later this month. I plan to fight as much as I can. I am tired of the useless IEP and resource specialists who fail to help my child. He is reading at a first grade level in sixth grade.

  13. I have a son who is 9 and dyslexic with all the other issues that go hand in hand with it. We used the Barton program for over a year (it is wonderful) now the school has placed him in a private school for kids with language based learning differences. The really great news here is that after 3 years of fighting I have become somewhat of an advocate and have helped 3 family’s get help. The last parent I helped the school offered to use an Ortan Gillingham program in resource. I still can’t believe that they are doing the right thing and am waiting for the floor to drop (hopefully not) The point is if we keep screamimg it out we will force them to do the right thing and teach our dyslexic children! Remember when I say scream I don’t mean to yell just be firm, fair, friiendly but loud! It does work. Good luck to all of you.

  14. d salwtiz-Student does not need both an IEP and 504. Section 504 already covers students with IEPs. The converse is not true though. Can you document lack of progress? Use the schools own assessment scores. Use things such as evaluations and/or standardized tests given to all students. What reading program is being used? Does it address the student’s deficits? Is there data that demonstrates the program is effective? If you feel your son’s IEP is “useless” you will need data to back up that assertion. Present that data to the IEP team.
    ·Wrightslaw books
    ·Overcoming Dyslexia, by Sally Shaywitz
    ·Adequate reading instruction, anything by Jeanne
    Chall and Louisa Moats
    ·Contact you state’s parent training and information center

  15. pete
    Thank you for that insightful comment. My son suffers from dyslexia and also has a useless iep plan for reading. It also includes numbers as well so math is now becoming a problem. What more info can you give me for our upcoming iep meeting and should I inquire about a 504 plan for my child. Thanks

  16. Melanie-Depends on the curcumstances. Was there a weapon involved or serious bodily injury? Is this something that happened one time or several? Did the school hold a manifestation determination meeting? If the kid has an IEP, this should have been done. Contact your state’s federally funded Parent Training and Information Center or Appleseed Legal Justice. I have seen schools arrest then expel for a fight, because of the SC Distrubing Schools Law, that was not actually written for kids, but for others who may disturb a school.

  17. Tia – Just because the school is telling you they don’t know what Orton Gillingham is doesn’t mean they are off the hook to teach your son. There is a great book called “Overcoming Dyslexia” and you can get it at the library. It is a great help on the different reading programs available. The school should research the reading programs but you will probably have to do it and bring the information to the IEP meeting for them. Once you do that they should have no excuse to put together a program for your son. If they refuse they have to put it in writing in a document called a “prior written notice”. You always can get an attorney if things really get bad.

  18. Heather – To start, read everything you can on the disability and connect up with local support groups (learning disabilites association or read some of the books that Wright’s Law puts together. They are very good. Learn as much as you can. Don’t be afraid to ask the school for what you think your child needs and if they refuse they need to put it in writing on a document that is called “Prior written notice”. Make sure you get copies of the IEP ahead of time so you have a chance to read it and you don’t have to sign anything until you are satisified with what they are doing for your child.

  19. Mom of Dyslexic – My son was going into 9th grade as a nonreader and we had had the school perform a multifactored evaluation which clearly proved that he was making no progress. You can get your child’s reading scores from his evaluation. If you do not understand the scores they are supposed to explain it to you. You can ask for grade level equivalents. If you do be prepared for resistance since most schools do not like to do this but you can insist on it. We have and have gotten this information. I contacted the IDA (international dyslexic assocation) and got a list to tutors and there was one in our area that taught Wilson reading and Alphabetic Phonics. We were in a position that if we went due process we believe that we would prevail so the school agreed to hire and pay for this outside tutor and to transport my son as well.

  20. My 9 year old son was diagnosed this summer by a private evaluator. He has been in a Child Study/Student Support team since 1st grade and has been “pushed” through because he is at grade level. The reason he is at grade level is because I work extensively with him at home, I will not let him fall through the cracks nor will I allow his self esteem to be lowered. The school has been supportive but when I mentioned dyslexia they didn’t want to hear it. His writing and spelling is horrific. We meet next week to discuss his diagnosis. I know he needs Orton- Gillingham tutoring but no one in our school district knows what it is, or can give me any help. Can I ask the school to pay for parental tutoring so I can help him at home?

  21. I’m not sure why people want to set up one group against another. Just because parents of kids with autism are fighting for services it doesn’t mean that they’re taking them away from those with LD.

    I say rock on to all parents of kids with special needs, whatever they are.

    I have one son with dyslexia and one with down syndrome. I fight equally hard for them, and believe me, the battles are very different.

    Let’s stick together.

  22. yes i just came across your website and im very interested in what you have to say. My daughter is in Special Ed fulltime and she has Dyslexia along with being ADHD. She is in the 4th grade she is trying her hardest with school and im trying my hardest with her too. I also have a son that is also ADHD so there are times that i feel like i am working against a looseing battle. If there is any kind of help you can give me please do.
    Thank you

  23. Sharon, My son is currently in 9th grade, already held back one yr. He has NO reading program currently and last year they had him in a regular education class room for reading as well. I wish I knew then what I now know regarding his special education rights since he has LD/ADD/Dyslexia. I asked about the possibilty of Dyslexia when he was in 4th grade. I cannot even get an answer as to what his current readling level is since it is not stated anywhere on his IEP. How are we as his parents suppose to know where he is and if he is even making any gains. He actually went backwards in reading level last school yr, started at 6.9 and left 8th grade at 5.9. What more can we do as parents, we are frustrated enough as we have already seen one of our children fail in this school district?

  24. I think this post is very astute. This statement pretty much sums it up:
    “the child’s personality is still there”
    My oldest has dyslexia and ADHD. Autism literally stole my younger son from me. It pervades EVERY little area of his development. Autism made my child have the intellect that is normal but the judgment of a toddler, therefore he must be watched 100% of the time, or he could literally die.
    Special ed in general does not know what to do with kids with atypical development: kids who have normal or even above average cognitive abilities (I’m speaking about LD and autism here). Old model special ed says same but slower pace, my kid just needs something different. Neither of my disabled kids are adequately being educated by the SD. So don’t think that autistic kids are stealing services from LD kids- no one gets anything.

  25. MomofDyslexic – Do you have any hard evidence that the school said “no” to you regarding your son having dyslexia? if so I would consult an attorney and get a meeting with the team and attorney to discuss all the options. It would appear to me that 1) how can they decide if a child has dyslexia or not since a professional not an educator can make that call and 2) if your child now has a diagnosis of dyslexia the school needs to provide the proper services to make up for the lost time. Our son has dyslexia and the school did not provide him FAPE. We proved that to them and they paid for an outside tutor that taught my son to read and write because they did not have anyone that could teach him. His tutor used alphabetic phonics as the reading program which worked for him and the school paid.

  26. Melanie It is hard for me to believe that the school expelled your son for a fight but since I don’t really know what happened it is hard to comment. I would highly recommend legal advice here to be sure that the school followed proper procedure. If it is discovered that they did than you can have your attorney help get you more services. It is required by law that if a child that is expelled and on an IEP that they must continue to get education services. My son when through this and got 2 hours per school day of tutoring services and it was in all classes. It wasn’t the best education but it was something. In the meantime we filed due process against the school and prevailed and was able to get him back in school before hte 90 days were up.

  27. I have no comment. I need help.No one is listening.I have a beautiful 14 yr old that has dyslexia.She reads at a 1st grade level.The school district pushed her through.We have a iep and its not working because no one knows how to help her. Can you be of any assistance?

  28. A neuropsychologist has DX my 9 year old with Reading and Writing learning disabilities: Dyslexia, and 120 IQ. The school says he’s too smart to receive special ed. He did score in the Basic Range on Star Testing, but his math is in advanced. The testing showed spelling at the 1st grade level and reading in the high 2nd,(hes in fourth) but his verbal scores are high 5th grade. Any advice? We have an eligibility meeting soon, but at the Student Study Team, this is what they”warned”me.

  29. I have a child who is Dyslexic and specifically asked 5 yrs ago while in an IEP meeting if my son possibly has Dyslexia. The answer was a sharp ” NO”. Well 4 yrs later and an outside evaluation by a Neuropsychologist that our insurance paid for, he DOES have this and would so greatly explain why he is at a 6th grade reading level and a 4th grade spelling level. The school seems to think that this is ok to do this to us. Very frustrated to also learn that they offered to other parents the opportunity to have a teacher who is “trained” to teach children with Dyslexia was tutoring for free but then tell me that we would need to pay for the tutoring and she was already booked up and would have to wait for an opening. Frustrated as Heck!

  30. Melanie, ask for an IEP meeting. Math 1 hr/day is not FAPE. Your son needs to be educated just like any other child. An online virtual school may be a possibility, but chances are he’ll still need remediation from a special ed teacher, perhaps at the library. Also consider related services (wrightslaw has a long article on this) for things like speech/language, social skills, counseling, etc. Given that your son was expelled for fighting, it would seem that the school should be looking at behavior in general (not just 1 day).

    If your son hasn’t been evaluated in all areas of suspected disability, then you should ask for assessments in the areas not assessed. In fact, if it’s been more than a year since the last testing, ask for a comprehensive evaluation. Get an advocate to help you plan your strategy for the meeting.

  31. I have a question for anyone who’s available, willing to listen and give me some answers. I have a nephew that was expelled permanently from school and he has an IEP, we have been told that he has to be in the classroom, 6hrs. a day with teacher instructional time. He was in a fight on August 25 or 26, and was expelled for the maximum 10 days, and before the 10 days were up, the borad met and decided to expel him permanently. Now, he can go to the local library for 1 hour day day, but that’s for only one class ( I think it’s Math), what about the other classes? Can they do that to him? He’s not getting proper education like this, he’s been out of school over a month and we’ve tried to enroll him in another county, but our county here in South Carolina won’t lift it so that he can attend. Can they do that to him? Please help!

  32. I agree that dyslexic children are completely remediable.
    I teach dyslexic children 3 languages and find that they read fluently in two of them and yet are dyslexic when it comes to English. I do not subscribe to the notion that this is because they have a phonological awareness deficit. I have explained this in detail in my current article in my blog.
    Kind regards,

  33. This is a very interesting question and observation. I have a friend whose son was diagnosed with autism within the last year. It is our belief that he may have dyslexia and/or another learning disability, but the school wants to label his problems as behavioral ones related to the autism. So that may be one other facet to the conversation – kids who have more than one disability but aren’t getting properly diagnosed.

  34. Several more reasons for the increase in autism interest & a relative decrease in dyslexia interest (in your seminars, blog & website) — in no particular order
    1. Heavy emphasis on intensive early intervention for autism — parents have the fear is something isn’t done RIGHT NOW there’s some sort of window that will close
    2. Parents of children with autism tend to band together and be vocal, more than parents of children with LDs or ADHD. Our local Special Education PTA is dominated by autism parents, tho parents of kids with IEPs are much more numerous in our district.
    3. Response to Intervention may be effectively helping some struggling readers
    4. Personal observation: parents of kids who are struggling academically have more shame & more drive to hide the problem than parents of kiddos with an autism diagnosis.

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