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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.

Labels

Some teachers and parents do not want to  ‘label’ a child as dyslexic.  But I  feel that decision does much more harm than good.  Here’s why.

One parent shared:

My husband is a medical doctor who told me, “In medicine, it is extremely rare for a patient to have 6 or 7 different conditions or diseases at the same time. So we start to search for 1 root cause that would create their many different symptoms.”

Yet the root cause of my son’s many academic problems, dyslexia, is a word that doesn’t see the light of day a lot. I have heard teachers and administrators claim, “There is no such thing,” or “We don’t like to ‘label’ children.”

But claiming dyslexia does not exist will not make it go away. You are just sentencing a child and their family to years of uncomprehending frustration.

Going back to the one root cause creating many symptoms:

What would a doctor say to a person who has the following symptoms: unusual weight loss, irritability, blurry vision, is tired all the time, is experiencing frequent urination, and often feels hungry?

Would he tell that person to drink more, eat more, put on weight and see an optician?

No. A doctor would say “Hmmm, that sounds a lot like diabetes. Let’s get you tested. If the test is positive, we can create a treatment program that works for you, and we can enable you to live a healthy and productive life.”

Do you see? I love labels, I love them! Once you have a label, you know what you are dealing with, you can talk to others about it, and you can seek help and find support.

I would far rather have one label that I can understand than a whole stack of symptoms that I don’t.

This parent agrees:

I have found many parents worry about labeling their child as dyslexic — and therefore, do not pursue testing.

We have found “dyslexia” to be a much better label than “lazy,” or “stubborn,” or “uncooperative.”

My son blossomed once he understood why reading and writing did not come easily for him, and that he could improve through tutoring.

Children may choose a far worse label, as this adult shares:

I’m 35 and have struggled with dyslexia my entire life, but I didn’t have a name for it. So I created my own name for it…DUMB.

Then I had to watch my little boy (who is now 17) go through the very same struggles in school. I told him every day (and still do) that he is smart. But if you don’t feel it, and your grades don’t reflect it, and you fail 3rd grade, nothing translates to SMART.

Today, we both know we have dyslexia, but it’s so hard to erase the old label of “dumb.”

Another parent shared:

Everyone told me that testing my son would insult and depress him — and categorize him — and be a waste of our money. For years, I believed that, which made my child virtually HATE me because I did not understand who he was, and HE knew something was ‘wrong.’

Once we got a diagnosis of ADHD and severe dyslexia, I saw all the weight lift off his shoulders. It’s like a light came on.

We began to work along side each other with the right homeschool materials, and I have seen a complete turnaround in his behavior, emotions, and learning.

It has also given him compassion for others.

Even homeschooled children need to know, as this parent shares:

I have to admit that I’ve always known something was wrong with my daughter, who is now 17. We tried so many approaches (colored overlays, physical exercises, and so many different phonics programs), but I never had her tested because I didn’t want to label her.

Thanks to homeschooling, I’ve been able to provide accommodations that match her needs. I’ve read aloud to her almost daily, so she has a great oral vocabulary. I record all of her textbooks, which she then listens to while following along.

I have her dictate most of her written work to me. We’ve been doing that since she was in 2nd grade.

But now that she’s approaching graduation and wants to go on to college, she needs to be more independent.

After watching your video, I decided to share my suspicions with my daughter. She cried when we went over the list of symptoms. She said for the first time, she realized that she wasn’t alone. She felt normal. She said it was so freeing to hear all of those things and to realize it wasn’t just “her” problem. She and I even joked that she could be the poster child for dyslexia.

To my surprise, she does not feel labeled. She feels hopeful.

So, parents, please share the correct label with your child:  dyslexia — not “dumb” or “lazy” or “stubborn.”

Break the cycle

When parents see their child struggle in school the same way they did, they react with fear, panic, and guilt.

The good news is that with the right type of tutoring, the cycle of academic struggle can be broken – as this parent shared in an email to Susan Barton about a nonprofit dyslexia center in Michigan.

During a recent high school graduation ceremony, I was overwhelmed thinking back on my own graduation and the hopelessness I felt as the speaker repeatedly said this was going to be the best time of our lives.

But my ears rang with the words of a teacher, who weeks before, as she threw my final report on my desk with a big red F on it, yelled in front of the whole class, “Only stupid, ignorant, and lazy people can’t spell.”

I remember crying for the next few weeks because all of my classmates were making their big plans for the fall and the future, but I had none. They did not know that in addition to not being able to spell, I couldn’t form a sentence or construct a paragraph. (Or is it the other way around?)

The college rejection letters began coming in, one by one. With little or no direction or support from my parents and family, I was lost. I did end up attending a small local college but survived only one semester.

I blamed the school system for allowing me to fall between the cracks and go all the way through school and graduate as what I thought at the time was an illiterate.

Fast forward 30 years to the day I went to my youngest son’s kindergarten parent-teacher conference. We were heart broken when the loved and respected teacher wept as she told us that something was not right. Although she did not know what it was, she felt it might impede his learning if not identified and addressed.

That day I was hit like a freight train with my past and my own inadequacies. We wandered kind of lost for awhile, grasping at anything for answers.

After receiving the diagnosis of dyslexia, we then began the difficult task of getting help. Along the way, I found the phone number for the Binda Dyslexia Foundation and Mrs. VanZanten. After talking to her and asking questions a mile a minute, I hung up the phone and sobbed — with a hope I had not had in years. I had found the help for my son so he would not fall through the cracks as I had.

Our experience with the the Binda Dyslexia Foundation, which provides tutoring using the Barton System, has been wonderful. In just one year, our lives have changed, our son’s life has changed, and even our extended family (many of whom had such a hard time understanding dyslexia and the steps to treat it) has been impacted in a positive way.

Susan, you are invited to our son’s high school graduation in 2016. He is now full of confidence and hope for a wonderful future.

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.

Wants a second opinion

Children with dyslexia will often NOT qualify for special education services when tested in first or second (or even third) grade. Yet as the following parent shared, the classic warning signs will already be there, and that’s exactly when a child should start getting the right type of tutoring. 

I am looking for someone who can give me a second opinion on test results of an evaluation done with my 7 year old son, who will be starting 2nd grade in 2 weeks.

First grade was a hard year for him – lots of tantrums and self-esteem problems. We could not figure out where all his anger was coming from until last December, when he started to fall behind in reading. In February it dawned on me that he might have dyslexia. I felt we needed an evaluation so we could start helping him effectively right away and not lose valuable years of reading training.

We had him privately evaluated by an educational psychologist to check for a learning disability because the public school said he was not doing poorly enough for them to do it.

The examiner found a “severe discrepancy” between reading achievement (23 %ile) and IQ (75 %ile), but he did not find a disorder in one or more of the basic psychological processes, which is why we did not receive a diagnosis of a learning disability.

He did test quite low in auditory processing (19 %ile). He actually scored even lower (at the 1 %ile) in the word discrimination subtest, but the examiner thought that might have been a fluke – because he scored so high in thinking and reasoning (91 %ile) and in the visual-spatial stuff (91 %ile).

The examiner felt my son was a very bright boy and that he would catch up in reading as he matured. He claimed his tantrums were just a cry for attention.

Despite that, my husband and I are still concerned. I really would like someone else to look at his scores for a second opinion because I have read several books and researched dyslexia online – and I see lots of the warning signs in my son.

Is it possible that he still could have dyslexia, but is not far enough behind in school yet to get a diagnosis?

I would really like his teacher to realize he is not being lazy or not paying attention.

I also want to be able to give my son a reason for his difficulties so he’ll know he’s not dumb. We have told him how smart he is, of course, but when he sees how well other kids are reading, he gets frustrated and feels stupid.

Emotional Disorder or Dyslexia?

Parents often don’t believe me when I tell them that most school psychologists have had no training in dyslexia. But I get emails like this every day: 

From a school psychologist in New York:

I would LOVE to attend your Screening for Dyslexia conference.

Our number one question during RTI meetings is if there is a possibility a child might have dyslexia. This topic is vague to me even after years of reading and doing independent research.

Yet as the “expert” at these meetings, I struggle with remediation techniques that may work after I screen a student and determine deficits.

Or from this school psychologist in Colorado:

I am a school psychologist in Colorado. I agree to your notion that we have no specialty in diagnosing dyslexia, however the prevalence of parents’ requests seems to grow and grow. Unfortunately, when parents cannot afford outside assistance, we are the only ones that are left.

I have been to several workshops, symposiums, etc, yet do not feel completely educated on the subject. Do you recommend any books or specific journals on the topic? How about books that may target age groups lower than 8 years old in looking at dyslexia?

That lack of knowledge causes this:

My son just finished second grade and is dyslexic. I am sure of it. His father is dyslexic, and his father’s father is dyslexic. He has almost every single warning sign listed on your website and in many of the books that I have read.

Yet when he qualified for special education services in May, they classified him as having an “Emotional Disorder” — even though his reading scores were really, really low. The school considers “average” anything from the 16th percentile to the 85th percentile, and his reading score was exactly at the 16th percentile.

The school psychologist told me that my son’s anxiety and depression were “off the charts” and that he CAN read — but his anxiety gets in the way and he becomes “too stressed out” to read.

When I tried to explain that he was most likely anxious and depressed because he CANNOT read, the psychologist just flippantly said, “So it’s one of those which came first things — the chicken or the egg.”

They never looked at his spelling (which is horrible, with all of the classic dyslexic spelling mistakes) or asked him to write anything (he HATES to write, even a few sentences).

His IEP only lists services for emotional issues (meet with the counselor once a week). What do I do? Just let him flounder?

He won’t be able to read the board or any of the books used in third grade. Do I just let him founder with no accommodations? That seems so cruel.

He already hates himself for being “stupid and different” — his words, not mine.

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