Dyslexia still haunts me
When adults share the emotional pain caused by dyslexia, and how it continues to impact them even as adults, it will give you the anger and courage needed to fight hard for laws that require early screening and early intervention.
I’m 23 years old now, and I barely graduated from high school. My fiancee and I just watched your dyslexia video, and the story you told about your nephew Ben made me cry. It brought back many painful memories. I am like Ben, but unlike Ben, I never got the right help. I would like to tell you my story, and then I’d like to ask you a few questions.
In kindergarten, I had to walk home. It was only about three or four blocks, but I would often get lost. Also, I still remember getting criticized by my teachers, classmates, and even my own parents when I was falling behind in reciting my ABC’s, my 1-10’s, and even my phone number and address.
They almost retained me in Kindergarten, but my mother talked them out of it.
In first grade, I started to learn to read, but again, I was falling behind. All the way through school, I feared my turn to read in class. It’s funny how good memories are sometimes forgotten, but bad memories never go away. When I was trying to learn to read, I can still remember my father telling me that I was lazy, and I just wasn’t trying. I guess my tears and frustration weren’t enough proof for him to see how hard I really was trying.
When I finally got tested for dyslexia in 3rd grade, they put me into “Special Ed.” If you ask a child what Special Ed means, they will probably say “retarded.” That’s what my peers called me, and that’s what I thought I was.
My parents sent me to many programs, and spent a lot of money. Yet I’ve held a grudge against my parents for years; I felt they failed me and didn’t try hard enough to get the right type of help. That’s because after years of “help,” I was still the same.
I struggled all the way through high school and barely graduated. In my junior year, the state created a High School Graduation Exam. In order to graduate, you had to pass 3 tests: reading, writing, and math. You could take them 3 times, but if you don’t pass by the end of high school, you only got an “Attendance” certificate. The first time I took it, I somehow passed the reading test. But I failed math and writing.
To this day, I can’t do math. I still mess up on simple things such as adding and subtracting. I still don’t know my multiplication tables. I’ve tried to learn them for years, but I just can’t remember them. I’ll have all the fours mastered one night, but when I try them again the next day, I’ll only remember a few of them. By the following day, I won’t remember any of them.
So I switched to a vocational high school where you could take construction electricity to earn math credits. In that hands-on class, I was a super star.
But I still could not pass the math portion of the high school exit exam — or the writing part, which you had to do by hand and they graded it on spelling, punctuation, and neatness of handwriting.
Fortunately, many parents in the district (whose kids could not pass the test) fought the district and got them to withdraw the test. So I did graduate after all — with a D average.
After high school, I went from job to job, but I wasn’t happy. I needed a skill, so I turned to the military. I took the ASVAB for the Coast Guard, and once again, I almost failed it. But I scored just high enough to get into a mechanics position.
But Basic Training was a nightmare. I could not memorize and retain information, marching left versus right was almost impossible, and I still could not write down anything. In the end I had a mental breakdown, and got discharged.
That was two years ago, and since then, I’ve been going from one job I hated to the next.
But last January, my finance gave me an ultimatum. “Go back to school and try, or I’m going to leave you.”
So I’m back in school in the diesel mechanics program.
Although the Disabilities Office has provided some software, more time on tests, and a note taker for each of my classes, they are not teaching me how to overcome my dyslexia.
I still can’t spell, do multiplication (or most other math), memorize anything, tell my left from my right, or find my errors when I write. I even make mistakes when filling out a job application.
Yet there is so much I can do. Right now, I work as an assistant maintenance person at the fire department, and I’m good. Really good. I can fix just about anything.
Yet that’s not what this world wants.
I want help to overcome my dyslexia so badly. I will try anything. I just want to be like everyone around me.
If it’s too late for me, then I need to know what to do to help my children when I have them. I do not want them to feel like I do now.
Hopeless, helpless, and sad.
The problem with RTI
Many children with dyslexia will not qualify for special education services during their early school years. But these days, they almost always get put into Tier 2 or Tier 3 of RTI.
One problem with RTI is how they measure “improvement,” as this mother shares:
I am the mother of an 9 year old boy. I want him tested for dyslexia. But the school says they don’t do dyslexia testing.
Instead, they gave him a test to determine if he needed special education services. But he passed the assessments and the IQ part, so they dropped it. They concluded he was just immature for his age and recommended retaining him, which we did.
Yet he still reads below grade level. At the beginning of his second time through 2nd grade, he was reading at a beginning first grade level. We are now at the end of the year, and his reading has only improve by 3 months — to a middle of first grade level.
To me, he should have improved more, given that he has had an entire extra year of PALS plus Tier 2 of RTI. Yet the school claims because he improved, he will not continue to get RTI next year.
Parents, never accept “some” improvement as good enough. If your child is not making more than one year of gain in one year of intervention, the gap is not closing. It’s getting bigger.
Another problem with RTI is that the right intervention is stopped too soon — before a student has finished the intervention program, as happened to this student:
I have been concerned about my son since kindergarten, and I have fought every year to have the school test him for a possible learning disability or dyslexia.
The school finally tested him in second grade, and although it showed some struggles, they said his scores were not bad enough to classify him as having a learning disability. Yet he struggled significantly with reading (he could not sound out any real or nonsense words — and messed up the vowels), read very slowly, and had terrible spelling.
His handwriting was so poor that I hired a private OT to work with him during third grade.
In fourth grade, he was put into Tier 2 of their RTI program. He began to get small group instruction using the Wilson Reading System, which is when he finally began to enjoy reading. Yet at the end of the year, because he had improved, he no longer qualified for RTI.
Our son is now 11 and in the middle of 6th grade at a junior high school. Although he will read if we push him hard, he refuses to read out loud any more (and he does have to read a passage several times before he comprehends it), his spelling continues to be horrible (even the simple high frequency words), and he struggles in math because he still does not know his multiplication tables.
Despite that, believe it or not, he has mostly B’s and A’s on his report card.
Yet he now resists all attempts to help him, and he has emotionally shut down.
We fear that as the demands of school increase, he will not be able to survive the challenges.
Parents, if you know or suspect your child has dyslexia but their school is not (or is no longer) providing the right type of intervention, then get it for them after school . . . by either hiring a tutor who uses an Orton-Gillingham based system or by getting the Barton Reading & Spelling System and tutoring your own child.
Warn the parents
If you combine the emails I get from teachers with those I get from parents, you can see why so many students with dyslexia drop out of high school.
A caring teacher asked:
I am a first-year 3rd grade teacher.
I have one student in my classroom who is very bright. She does extremely well in all of her subjects, except reading and spelling. Her spelling is atrocious, and so is her handwriting. When she writes the required sentences each week, her sentence structure and words are simplistic and not at all similar to how she speaks.
When reading aloud, she runs over punctuation marks, and she doesn’t even try to sound out unknown words. Even when I help her and eventually tell her the word, she will often not know that very same word when it appears again a page or two later.
Parent-teacher conferences are coming up, and I was wondering if I should warn her parents about the possibility of dyslexia.
Yes, if you suspect a child may have dyslexia PLEASE mention it to their parents. They know their child is struggling because they fight the nightly “homework wars.”
If dyslexia is not discovered and dealt with during those early grades, teachers in junior high often complain:
I cannot thank you enough for your wonderful presentation I attended about 2 weeks ago at my school. I was moved to tears and then later, I became quite angry!
I am a teacher at the school that hosted your presentation. I teach 7th grade English Language Arts, and I’ve been searching for an answer to this question for years by going to conferences, holding discussions with my colleagues, and asking administrators: “What do I do with the students who read at the 2nd grade level in 7th grade?”
I will never understand our approach to education. How can it be that effective reading systems exist, we do not employ them, and yet we are expected to raise their scores and close the gap? (And we call ourselves educators.)
How much longer are we going to allow this farce to continue?
But the real tragedy is what happens to these children in high school. Their parents send me heart-breaking emails, like the following:
My son has dyslexia, he’s 17, and I don’t know what to do.
He can barely read, he can’t spell, and his special education teacher isn’t helping. He’s slipping away, yet he really is a good kid.
He is giving up. He wants to drop out of high school.
Help. I’m desperate!
Or:
I am dyslexic, but I did not know it until my 6 year old son was diagnosed with it. I suspect 2 of my other children also have it, and ADD as well.
My oldest is 16, and he’s the one I am most concerned about.
The school has always labeled him a “problem kid.” Over the years, I tried everything the teachers suggested. But when their ideas did not work and I went back to them with my own suggestions, I became the enemy. Nothing I suggested was ever tried or accepted.
He is a junior in high school, but he only has the credits of a 9th grader — so he may not graduate. His teachers give up on him and just push him through. He has very low self-esteem, has been in a lot of trouble, and I just discovered he is starting to use drugs.
I feel like I have let him down. I worry that it is too late to help him. What can I do now?
Or:
My nephew, who is 20, has dyslexia but never knew it. School was so awful for him that he dropped out.
He tried to get his GED through a local college program, but it was way over his head. One of the teachers called him “stupid,” so now he will not go back. That is the last thing he needed — as he already had very poor self-esteem.
He has always wanted to be an engineer, but he says he is too stupid to be that — or anything else in life.
I want to help him. If I don’t, he may never be able to get a job, and he will live at home with his mom forever.
All of that pain is preventable if teachers would warn parents when a student shows many of the classic early warning signs of dyslexia, and if parents then got their child the right type of tutoring.
Much to be thankful for . . .
Letters like this make all of our hard work worthwhile.
Dear Susan,
Today as I sat at the table with my family to celebrate Thanksgiving, I realized how much things have changed over the last year.
Just a year ago, my daughter cried about school and hid in the chicken coop to try to avoid going. She often returned from school with blisters on her fingers (from gripping the pencil too hard due to her dysgraphia), and she was soooo frustrated by reading assignments and spelling tests.
Needless to say, it was a very hard time for our family.
Fast forward a year. We are now homeschooling using the Barton System, and she is happy.
She draws her chickens and writes poems about them. Her poems don’t always rhyme, but not all poems need to rhyme. 🙂
She feels successful in her reading assignments and in her ability to spell the words in the lessons. There are no more tears and no more blisters. She is happy and making progress!
I deeply appreciate the program you put together. To me, it is way more than a reading program, and I thank you for creating it.
Dyslexia is inherited
Many people are still not aware that dyslexia is inherited. It strongly runs in family trees.
That lack of awareness causes this:
After 3 years of trying to figure out my daughter’s learning challenges, I am now convinced that she is dyslexic.
I am sick to my stomach that although I knew my husband is dyslexic, I never made the connection. I did not know it is an inherited condition.
My very bright daughter will be entering 6th grade soon, reading 3 years below her grade level.
And it causes this:
I am dyslexic my father was dyslexic my older son is dyslexic. could my 9 yr old son be dyslexic.
we have been trying to get an IEP sence frist grade (he in 3rd now) we where told unless he has failing grades for 2 consexative years no IEP.
i cant help him with his school work.
im afraid thay are pushing him through school and he will end up an out of control teen — like me.
Parents, if you know dyslexia runs in your family tree, and your second or third grader has terrible spelling when writing sentences and stories, and is a slow inaccurate reader who cannot easily sound out unknown words, take action now.
I just found your website today. I am the mom of a second grader and I think he may be dyslexic because my son’s father, aunt, and grandmother are all dyslexic.
I questioned his kindergarten and first grade teachers about dyslexia. Each teacher assured me he was age appropriate in his learning.
But towards the middle of first grade, he scored below the average on the DIBELS test and qualified for reading intervention. I signed him up for it, thinking it would help.
I also worked with him all summer in an attempt to get him up to the same level as his classmates.
Despite that, his second grade teacher expressed concern about his reading, writing, and spelling on his progress report.
So I took him to a center for an assessment. He scored low on phonemic awareness and fluency, but very high on comprehension. He puzzled the assessor because even though he did not read the passage very accurately, he was able to answer the comprehension questions. He also scored high in listening comprehension.
Yet reading, spelling, and writing are so exhausting to my child that it is painful to watch. He wants to read, he is motivated to read, but he isn’t reading the words. He does seem to know some sight words but he mostly scans the page looking for clues and guesses at reading.
I am very interested in learning how to teach my child. My background is not in teaching, but I am more than willing to work hard, and I am very motivated.
I can’t believe I said that
This is why Dyslexia Awareness Month is so important. Please share what you know about dyslexia with other parents — to prevent this:
I am just beginning to realize my son has dyslexia.
It saddens me that I have spent so many years trying to beat information into my son, fighting with him about why he did not understand, frustrated when he did not get it.
Year after year he would tell me, “Mom, I promise I’ll try harder,” yet his grades would still be D’s and F’s and me, of course, letting him know my disappointment.
I feel so very bad about some of the things I have said to him. I even fought with him about why it so hard for him to tie his shoes. “It’s so simple. Why don’t you get it?”
I want to warn other parents so they will understand what I did not. So they will avoid pushing their child to do things they just can’t do, to stop listening to others who claim your child is just being lazy, or who advise “If you take away his favorite sport, I bet he’ll change.”
What hurts me most is that I could see he was such a bright child, very athletic, very creative. Yet every evening, homework turned into fights with me saying things like, “Your brother gets it. Why can’t you?” His self-esteem was already at a low, and all I was doing was making it worse.
It took a huge fight between me and my son late last year, that had us both crying, when I asked him, “Tell me what it is that is so hard for you in class,” and he answered, “I can’t read the big words. I just can’t, and I feel stupid compared to the rest of the kids.” That started me doing an internet search for reading problems, which lead me to dyslexia, which led me to your website. He has almost every classic warning sign of dyslexia. It was as if you had a camera in our house.
I am now going to be the strongest advocate for my child. He is a caring, loving, wonderful soul who wears his heart on his sleeve. He does not deserve the emotional pain that my ignorance caused him.
Amazing what putting a name to a condition can do
People have told me over and over again that the day they discovered they had dyslexia was the best day in their life — as this woman shares:
Thank you for your on-line video. I watched it because I suspect my 5 year old has dyslexia. Now I’m convinced. But just as important, I found out that I have mild dyslexia.
I cried when I watched your video because you were talking about my life. I related with everything you said. I was actually a B high school student only because my A+ in Art brought up the rest of my grades.
I was on the 7 year plan in college and avoided classes that required written reports. I still can’t believe you knew that. I had to take an upper-level developmental biology class that had all essay exams. The professor would give me partial credit because he knew I could sit and talk about the material, but I could not seem to get it down in written words.
M mother still teases me that I was in my 20’s before I knew my left from right. I knew the days of the week, but struggled with the months.
I still remember her trying to teach me to spell, telling me to look it up in the dictionary, but me not having a clue as to the first, second, or third letter.
My writing was in run-on sentences (still is, sorry). I knew the teacher wanted periods, then a capital, so I would go back over my work and if a sentence looked too long, I would take out a word and put in a period.
Because of your video, when I make word substitutions when reading to my girls, I will no longer cringe when I realize my mistake.
My dirty little secret in life is, of course, that I can’t spell. My husband can’t either. We have worried about the day our kids will find out our “secret.” Well, it is not going to be a dirty little secret any more.
I am not embarrassed to send you this awfully written note. I am not going to rewrite it 3 times, then wait 24 hours, and read it again before I send it — as I usually do. I can stop beating myself up thinking I’m stupid. I’m just mildly dyslexic. Too bad I had to be 42 before I figured that out.
Even though you don’t know me, I am so relieved that there is someone in the world who understands me, and I don’t have to feel crazy or retarded because I can’t spell, write, or read out loud.
I have to look at my whole life differently now. I have lots of new questions, like: is dyslexia why, after 30 years of keyboard use, I still have to look at the keys?
Thank you for giving me the answer to my question of what’s wrong with me. My head’s a little higher today. I think you healed 40 years of emotional scars in the few minutes it took to describe an adult with mild dyslexia. Amazing what putting a name to a condition can do.
Bright Solutions for Dyslexia 