Something's not Right 2nd Edition

By Nancy Lelewer

Learning disabilities (LD) are a root cause of major problems in our society. Vast numbers of youngsters are not receiving appropriate education. Nancy Lelewer’s story began when even less was known about learning disabilities than is known today. In a gripping and fast-moving narrative style, this book brings home the fact that LD persons need to receive instruction via different routes and the earlier the better. This Second Edition is a complete update of the award winning first edition that came out in 1994.

• Language: English
• Publisher: Archway Publishing
• Release date: Mar 6, 2023
• ISBN: 9781665734677

Nancy Lelewer

In 2004, the Massachusetts branch of the International Dyslexia Association awarded Nancy Lelewer the Alice Garside Award for her outstanding contribution to the field of dyslexia. While acknowledging she shared the same lifetime dedication to the field as past recipients, they noted she, unlike other recipients, was completely self-taught. This was the first year since the award’s inception in 1985 that it had been given to an individual who had never taken an Orton-Gillingham training program or one of its spin-offs. In fact, in the award’s history, Nancy was only the second dyslexic to be chosen. Nancy’s interest in dyslexia grew out of her own struggles with it as a child. As an adult, her awareness of her children’s dyslexia and other learning disabilities served to deepen her interest in the field. To help her children grasp concepts such as taking turns and winning and losing when they were young, Nancy invented nine board games called “Have Fun with Me. Play 1, 2, 3.” Nancy obtained three patents, a trademark, and copyrights for them in hopes of marketing them when her children were older. She also invented and copyrighted a calendar that can help children understand the time of day (morning, afternoon, evening); the day of the week; and the month of the year. Both the games and the calendar were manufactured and marketed by major companies. Nancy has served on three dyslexia boards and spent five years as chairwoman of the board for a school for dyslexic boys. Once her children were grown, she turned her attention to research into the causes of dyslexia. She became a research affiliate at MIT’s Man Vehicle Lab (Center for Space Research) and an associate in neurology at Harvard Medical School. Her work contributed to papers that were published in Cortex and Annals of Dyslexia. Nancy was the US cofounder of a Swedish wheelchair company (Permobil), which she ran for the first three years in the United States. Today, Permobil is the largest computerized wheelchair company in the world. If you wish to find out more about Nancy please check out her webpage www.NancyLelewer.com or email her at [e-mail]

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Copyright © 2023 Nancy Lelewer.

All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the author except in the case of brief quotations embodied in critical articles and reviews.

This book may be acquired through Amazon.com, BarnesandNobel.com or through the publisher at:

Archway Publishing

1663 Liberty Drive

Bloomington, IN 47403

www.archwaypublishing.com

844-669-3957

Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

ISBN: 978-1-6657-3468-4 (sc)

ISBN: 978-1-6657-3466-0 (hc)

ISBN: 978-1-6657-3467-7 (e)

Library of Congress Control Number: 2022922604

Archway Publishing rev. date: 12/04/2023

About the Author

(Photo by Steven Wagner)

In 2004, the Massachusetts branch of the International Dyslexia Association awarded Nancy Lelewer the Alice Garside Award for her outstanding contribution to the field of dyslexia. While acknowledging she shared the same lifetime dedication to the field as past recipients, they noted she, unlike other recipients, was completely self-taught. This was the first year since the award’s inception in 1985 that it had been given to an individual who had never taken an Orton-Gillingham training program or one of its spin-offs. In fact, in the award’s history, Nancy was only the second dyslexic to be chosen.

Nancy’s interest in dyslexia grew out of her own struggles with it as a child. As an adult, her awareness of her children’s dyslexia and other learning disabilities served to deepen her interest in the field. To help her children grasp concepts such as taking turns and winning and losing when they were young, Nancy invented nine board games called Have Fun with Me. Play 1, 2, 3. Nancy obtained three patents, a trademark, and copyrights for them in hopes of marketing them when her children were older. She also invented and copyrighted a calendar that can help children understand the time of day (morning, afternoon, evening); the day of the week; and the month of the year. Both the games and the calendar were manufactured and marketed by major companies.

Nancy has served on three dyslexia boards and spent five years as chairwoman of the board for a school for dyslexic boys. Once her children were grown, she turned her attention to research into the causes of dyslexia. She became a research affiliate at MIT’s Man Vehicle Lab (Center for Space Research) and an associate in neurology at Harvard Medical School. Her work contributed to papers that were published in Cortex and Annals of Dyslexia.

Nancy was the US cofounder of a Swedish wheelchair company (Permobil), which she ran for the first three years in the United States. Today, Permobil is the largest computerized wheelchair company in the world.

If you wish to find out more about Nancy please check out her webpage www.NancyLelewer.com or email her at [e-mail]

Dedication

To my mom and dad, who taught me about parenting through their examples of consistency, structure, nurturing, and love and always found time to listen. And to my four children and eight grandchildren, who expanded my knowledge of learning and loving and allowed this invasion of their privacy in the hope it would help others.

Contents

About the Author

Preface

A Poem on Learning Disabilities

Introduction My First Reading Test

Chapter 1 Brian’s Introduction into the World

Chapter 2 Struggling with Chaos

Chapter 3 Invited, but Not Invited Back

Chapter 4 A Slap In the Face

Chapter 5 The Long, Hot Summer

Chapter 6 From the Frying Pan Into the Fire

Chapter 7 Saying No to an Expert

Chapter 8 Learning Is Possible

Chapter 9 Beginning to Get Some Answers

Chapter 10 Kelly’s Downhill Slide

Chapter 11 Games Give Brian Space and Time

Chapter 12 Struggling within the System

Chapter 13 The Right School Makes the Difference

Chapter 14 Penny Opens Up

Chapter 15 How Did My Children Grow Up So Fast and I Get to be This Old?

Chapter 16 The Grandchildren are grown up too

Chapter 17 Lessons Learned

Resources

Acknowledgments

Preface

Although neither of my parents was ever diagnosed as dyslexic (the syndrome was almost unknown when they were growing up), I suspect they both had learning disabilities, including dyslexia. Reading was not a major activity in my home. My parents read parts of the newspaper daily, some magazine articles, and books occasionally, but no one in my family ever sat for hours reading.

My mother, a college graduate, had always been plagued with letter reversals, number inversions, and malapropisms (misused words). Attempts to avoid these problems often led to rephrasing, so the voice of the turtle might come out as the turtle speaks.

My father, a successful businessman and exceptional athlete, was a low to average student. In elementary school and high school, he was more interested in playing sports than he was in studying, and after two years of college, he dropped out to go into business. While very successful, he never forgot an experience that had little to do with his success but much to do with his elementary education. When he was seven years old, his headmaster came into his first-grade classroom and asked each youngster to spell a word. He recounted, When I spelled away a-y-a-w, he said, ‘You flunk and will have to repeat high first.’ My teacher told him I was a bright and conscientious child and convinced him I should be promoted to low second.

That experience remained with my father throughout his life. At the age of ninety-eight, ninety-one years later, he would still speak of it. After he married, he began taking courses, as he felt that he had cheated himself out of an education, and there was much that he wanted to learn. He was always good at math. Even throughout his nineties, he could add, subtract, multiply, and divide large numbers quickly in his head. Dad never used a calculator or had to write anything down.

Over the years, professionals from various disciplines have used many names for the frustrating problem of a child’s failure to learn to read even in a good educational environment and with good motivation (until defeat has begun to erode it). Among them are minimal brain damage, perceptual handicap, learning disabilities, learning differences, and dyslexia. While these names label the problem, they do not explain the problem.

Perhaps the simplest way to explain dyslexia is to say it is a syndrome of complicated conditions that inhibit the ability to read and comprehend what has been read. Many dyslexics, for example, have trouble learning the sounds of some letters until the sounds are taught to them along with how to segment words. Still others have problems with comprehension. Most are poor at spelling. For all of these issues, having dyslexia does not have anything to do with inherent intelligence. Some biographers have suggested that Einstein was dyslexic. Dyslexia also has nothing to do with gender. Dyslexia affects males and females equally. It is never as simple as confusing b for d or was for saw. Many young children who are not dyslexic make these reversals. Dr. Norman Geschwind was chief of neurology at the Boston VA hospital. He then became Harvard Medical School’s James Jackson Putnam professor of neurology, where he continued to research aphasia and epilepsy, as well as dyslexia and the neuroanatomy of cerebral lateral asymmetries. He said, Dyslexics are able to do things that people who are not dyslexic can’t do. Part of their brain is different and therefore sees the world from a different perspective. Dyslexia, he felt, had not disappeared from humans over the ages because it was needed.

One of Geschwind’s disciples, Dr. Albert Galaburda continued Geschwind’s work with his pioneering studies on the biological foundations of developmental dyslexia. He created the brain lab at the Beth Israel Hospital in Boston, where he worked on cadaver human brains of dyslexics and non-dyslexics. He discovered a lack of migration of certain cells in the brains of dyslexics.

Now, thanks to the research of Dr. Sally Shaywitz at Yale University and new brain imaging technology, children and adults with dyslexia can look at an image of their brain working that will show the root cause of their dyslexia. So today we can show dyslexia as a specific difference in brain makeup. The other learning disabilities are not yet known specifically even with modern brain imaging technology.

Dyslexia runs in my family. I have a bright and creative first cousin who was tutored around the clock and who had to change schools frequently for academic and behavioral reasons. I myself am dyslexic, as are three of my four children, their father, at least one of my children’s first cousins, and some of my grandchildren.

My children actually display a range of learning disabilities that include dyslexia. Whitney, my second daughter, has no learning disabilities at all. As you will read, Brian, my son, had and has many problems in addition to dyslexia, including visual/motor/perceptual disabilities, language unscrambling problems, and ADHD until puberty. And in his early fifties, he was finally diagnosed on the high end of the autism spectrum. His story forms the majority of this book because his problems showed up very early and required the most attention. Hyperactivity was present in two of my four children. While ADD (attention deficit disorder) is not necessarily a learning disability in itself, I believe that label also may be applied to all three of my children who have dyslexia and other learning disabilities.

In 1975, in an effort to give every student with a disability, whether learning or physical, an opportunity to get the same education as every other student, the individualized Educational Program (IEP) was introduced into school systems. To further help those with dyslexia and/or other learning disabilities, the 94th Congress passed the Education for All Handicapped Children Act. This act, whose final phase became effective in 1980, was passed to assure free and appropriate education for all handicapped persons ages three to twenty-one. As a follow-up, in 1981, the National Joint Committee on Learning Disabilities defined learning disabilities as a heterogeneous group of disorders manifested by significant difficulties in the acquisition and use of listening, speaking, reading, writing, reasoning and/or mathematical abilities.

If you are a parent of a child with dyslexia or a learning disability, I want to stress that there is no deadline or age limit for when a person can learn to read. Many dyslexic adults want to learn to read or read better. They face serious challenges but ones that can be met successfully through such programs as the Wilson Reading System, which was designed for adults and children who are dyslexic.

A few words about the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5), which was published in 2013 by the American Psychiatric Association. In the United States, it serves as the principal authority for psychiatric diagnoses. Two major changes from DSM-4 to DSM-5 was the elimination of Asperger syndrome as a distinct disorder and the addition of the term to the description of autism spectrum disorder. The other was in the treatment of dyslexia, dyscalculia, and disorder of written expression. These have all been lumped into specific learning disorder.

Before the DSM-5 came out, the International Dyslexia Association (IDA) wrote a letter that the change would cause harm to dyslexics who were already receiving funding and were comfortable with the name dyslexia. They also could see that it would make funding for many dyslexic youngsters and adults more difficult in the future.

A letter was also sent from the Asperger’s Association of New England (AANE), stating it would be very upsetting to many of those with Asperger’s to be told that Asperger’s no longer existed and they would need to meet new, more difficult criteria to get funding.

What has happened is that the terms dyslexia and Asperger’s are still being used. Asperger’s Association of New England did change its name to Asperger/Autism Network, keeping (AANE). The name change had more to do with a book that came out about Dr. Asperger and how many children he allowed to be experimented on or killed during World War II than it had to do with DSM-5. (See Resource Section for another name change under the new Director. AANE now stands for Association for Autism and Neurodiversity) The International Dyslexia Association (IDA) continues with its name and to help dyslexics.

Although I grew up in Highland Park, Illinois, it wasn’t until my children were having problems that I was able to spend time with Dr. Helmer Myklebust at Northwestern University. He was one of the originators of the concept of learning disabilities in children and became the founder and director of the Institute for Language Disorders at the University of Illinois, Chicago. Between Dr. Myklebust, Dr. Laura Lehtinen Rogan at the Cove School, and others at Northwestern, the Midwest had much to offer those with dyslexia and other learning disabilities. I was lucky to have a father who made these connections for me.

Because I was on the lecture circuit for many years, I received hundreds of phone calls from desperate families who had come to suspect their child had a learning disability or dyslexia because the child was doing poorly academically, couldn’t read, and/or had started acting out. I listened to their stories, made suggestions and referrals, and emphasized that one person, often the mother, has to take the responsibility for finding and coordinating all the necessary people and resources that will enable their dyslexic child, who perhaps has other learning disabilities as well, to learn. Given all the literature, special schools, and tutors available today, it is shocking to find the number of children, teenagers, and young adults who are still not receiving the appropriate education.

Finally, I’ve written this book about our family to bring a better awareness and understanding of dyslexia and other learning disabilities to the general public. Although every event is described as it happened, I have chosen to publish under my maiden name and to change many other names in the book in order to protect people’s privacy. Therefore, if you try to locate certain people named here, you may be frustrated. If, after reading this book, you want more information because the phrase something’s not right describes a child or adult you know, please read the materials and contact the organizations listed in the resource section at the back of this book. You will be on the right path.

A Poem on Learning Disabilities

The college dean says:

"Such rawness in a student is a shame;

’Tis lack of preparation is to blame!"

The high school principal says:

"Good heavens, what crudity! The boy’s a fool!

The fault of course is in the elementary school."

The elementary school principal says:

"Would that from such a dunce I might be spared.

They send them up to me so unprepared."

The primary principal says:

"Poor kindergarten blockhead! And they call that preparation?

Worse than none at all!"

The kindergartner says:

"Such lack of training did I never see—

What sort of a person can the mother be!"

The mother says:

"You stupid child! But then you’re not to blame.

Your father’s family are all the same."

—Anna Gillingham

From The First Seven Years of The Gillingham Reading Program at the Francis W. Parker School, 1957. Reprinted by permission of Robert G. Hall, Educators Publishing Service.

Introduction

My children were born in the late 1950s and early 1960s, when little was known about dyslexia, hyperactivity, or learning disabilities in general. Such syndromes confounded the experts, who only spoke in terms of exceptional children—in other words, children who were considered emotionally disturbed or mentally retarded (n.b., this term has been replaced with ‘Intellectual Disability.’) Most experts thought learning disabilities could be handled by traditional tutoring. Hyperactivity did not exist as a syndrome, although some educators were beginning to note a bewildering new classroom problem. Even today, more than fifty-five years later, I am saddened when I remember those experts’ comments and how my children had to fight to learn.

But when I look back, I also remember my personal difficulties and embarrassment. My parents had a friend who liked to tease me about the way I spoke some letter sounds. He would ask me to repeat the line from Jack and the Beanstalk, Fee-fi-fo-fum, I smell the blood of an Englishman, which I would pronounce as See-si-so-sum, I smell the blood of an Englishman. He would laugh.

After a number of these experiences, I went to my father and told him his friend hurt my ceilings,