Reading David: A Mother and Son's Journey Through the Labyrinth of Dyslexia

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Overview

Lissa Weinstein made a career of helping others understand the nature of learning disabilities, but when her own son was diagnosed with dyslexia, she found herself just as frustrated and confused as the parents she counseled.

In their own words, Lissa and David Weinstein express the confusion, fear, faith and love they found on a journey that taught David to read, and brought mother and son closer than they ...

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Overview

Lissa Weinstein made a career of helping others understand the nature of learning disabilities, but when her own son was diagnosed with dyslexia, she found herself just as frustrated and confused as the parents she counseled.

In their own words, Lissa and David Weinstein express the confusion, fear, faith and love they found on a journey that taught David to read, and brought mother and son closer than they had ever been.

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Product Details

  • ISBN-13: 9780399529344
  • Publisher: Penguin Group (USA)
  • Publication date: 9/2/2003
  • Pages: 240
  • Product dimensions: 6.38 (w) x 9.26 (h) x 0.90 (d)

Read an Excerpt

1

The Problem

It's Open School Night. It's my first Open School Night because David is my first child and he is in kindergarten. Speeding home from work, no time to count change, I toss a random handful of coins into the tollbooth on the Henry Hudson Parkway. Full of purpose and determined to do it right, I join the long line of cars at the school waiting to park on the lawn. Volunteers direct us, waving flashlights against a thick fog rolling in off the Hudson River on this late September night. Still wearing my "Dr. Weinstein at work" uniform, I am sweating in tasteful gray wool and pearls. Rushing to be on time (7:30--Introduction with the principal; 7:45--Meet with classroom teachers; 8:15--Meet with specialists), I catch a high heel and sprawl into the sandbox. It's an inauspicious beginning.

The cornerstone near the entrance of the school announces the building's 1955 conception. A two-story redbrick structure built to withstand the Cold War, its functional, no-frills design and prominent American flag silently proclaim the down-to-earth values that are promoted here. The plentiful crimson leaves on the 300-year-old maple at the front offers further proof of the stability Larry and I sought in moving to this suburban town. Looking at the school, I'm sure we have made the right choice. David, still not even five, and Daniel, our two-year-old, need never know the precocious maturity of city children. Here a child can grow up in his own time and not be afraid to ride a bicycle in the street or walk alone.

Inside, the halls are brightly lit. The chipped paint on the doors and window frames attest to the fact that sage green was a "hot"color for fall at some earlier time. Above the bricks on the half-masonry walls are bulletin boards filled with children's artwork and testimonials ("Why I love school," "My favorite place"). Room 111...109...

Here it is, 103. Ms. Miller. Entering the room, I am immediately enveloped by familiar smells--open glue pots, nontoxic poster paint, fading construction paper, dried snot. Sitting dutifully in a chair that is not the right size for this Goldilocks, I wonder which of the other parents can be my friend.

To my left are cubbies where David hangs his new grown-up backpack, the one I worry is too big for him; near the windows is an area for block building. Looking to see if any of the constructions saved to show the parents belong to David, I find a drawing of stick figures with the caption: "Me and my friends sitting around. We will share our toys." Comforted by the complexity of the idea, I ignore how primitive David's drawing is compared to the other kids'. Across the front of the room hangs the obligatory string of cut-out alphabet letters and numbers. At the kindergarten screening they said the school did not expect children to know their letters yet. Teaching them that would be the job of the kindergarten. I certainly haven't been able to teach him.

David has dictated a note for me: "Dear Mom, Welcome to Open School Night. I hope you have a good time."

I write back: "It was great to see your classroom and meet your teacher. I know you will love being in school just like I always did."

Ms. Miller, an earnest twenty-two, sits on her desk, nervous legs crossing and uncrossing beneath a long floral skirt. It's her first year. She announces the class parents. I am one. She hands out materials on how children learn letters and begin to read and write and explains the kindergarten "curriculum." With tears in her eyes, she recites a poem about the importance of play for children's creativity. She is passionate, dedicated. I pat myself on the back again.

As I am about to leave, she stops me.

"I'd like you to go see...I'd like you to go talk with Mrs. Wilson, the speech therapist. I had her meet with some of the children in the class to evaluate their speech. The school has really good speech services. She's waiting for you now." She hesitates a moment, gauging what I can bear to hear, then adds, "It's very hard to understand what he's saying. I think it's frustrating for him."

Mrs. Wilson has written a report summarizing her time with David. Most of what she notes is expected, if not welcome, news. It can be very hard to understand what David says. Sometimes it's better when he's talking to people he is comfortable with and who are familiar with what he talks about. Mrs. Wilson found David's ability to replicate single sounds of speech, his "articulation," not too bad in isolation, although he consistently substituted the vowels "a" and "o" for the "l" and "r" sounds in sentences. His facial muscles are poorly coordinated, especially his lips and tongue. When he tries to put whole sentences together, he speaks so fast she found it hard to tell whether he was anxious or trying to use a vocabulary he couldn't pronounce.

What causes me to stare in horror is how David named pictures of common items, labeling a wagon as a "wheelbarrow," pajamas as a "nightgown," and a hairbrush as a "toothbrush." These errors were something different from troubling speech sounds. These were near misses, mistaken efforts to describe a picture that he recognizes but can't retrieve the exact name. I'd heard these funny things in his speech before, him using big words when little ones would do, like saying, "It's a blustery day" at age two and a half instead of, "It's raining." In my mind, I'd defined him as an unusual child with a huge vocabulary.

Looking at the words in print, I have the odd sensation of gears shifting. At that moment, I am somewhere else. The person reading the evaluation is not me, just someone who looks like me. It couldn't be me, because that would mean Mrs. Wilson is talking about my dear, funny, David, who is clearly not the person described on these pages.

Images intrude. The neonatologist, called into the birthing room during a difficult, long labor, taking tests of the scalp oxygen content to make sure "the baby" isn't anoxic. The fetal monitor of his heartbeat varying intensely with each contraction. The obstetrician saying upon hearing David's first cry, "That's the best sound you can ever hope to hear at a delivery." In memory, his voice sounds relieved. Was he worried? In doubt that there would be a first cry? I recall the seemingly benign diagnosis David gets the first night of "Transient Tachypnea," or temporary breathing problems. Was there a loss of oxygen to the brain? These facts are now rearranging themselves as realization dawns, and cruelly, that something is wrong.

Mrs. Wilson is waiting for my response.

"Will he read?" I ask, tentative, attempting a semblance of normalcy.

"Of course." Her voice sounds soothing, but the reassurance is hollow. I'm well aware that reading problems are correlated with language and articulation difficulties.

There are other, more deeply buried memories: a brain-damaged cousin left in my care while our parents are out. I poke at him because he won't speak clearly to me, his slurred words and his adamant refusal to leave his wheelchair is frightening and infuriating. My own febrile seizures in childhood, my mother's overly solicitous worry, her fear I am retarded like her brother's child. The images grow heavy, sticking together and then falling, forming a precipitate of guilt.

"If he was my son, I'd get him some help. There's a form you'll have to sign so I can do a more complete speech and language evaluation." Mrs. Wilson concludes our meeting. Another parent is waiting.

I take the form and the two-page summary, stuffing them in my bag and shuffling down the hall. Wandering aimlessly to the library, I meet a neighbor whose daughter is also starting kindergarten this fall.

"Lissa. Hi! What do you think? The school program seems really good."

A need to confess strikes as jealousy and embarrassment war within me. "They say David needs a speech evaluation. I...I don't want him to have any problems."

Why isn't this happening to anyone else's kid? I have the urge to lie, and I do.

"They think he's really very bright." (No one has even mentioned this.) A little white lie, like exaggerating my College Board scores by five points. A lie that couldn't mean anything to anyone, but betrays an underlying world of complex fantasies and imagined deficiencies beneath a calm surface.

My neighbor is a deeply kind woman. She ignores my statement or, more probably, is unaware of its significance to me and continues to chat. She's recently moved from New York City also and is thrilled to have her daughter in a public school. This moment is full of future to her. Suddenly, the fluorescent lights in the library seem too bright, and it's as foggy inside as out. My neighbor's voice is droning, far away and slow, a phonograph needle mistakenly left at 33 rpm. Segments of other conversations intrude:

"Ms. Lynch, the yeller. I hope Barbara doesn't..."

"...not enough enrichment for the really bright kids. Sam should..."

Despite a growing sense of dread, I prolong the contact. I don't want to go home and see David's face. I can't imagine looking at him, knowing something about him that he himself doesn't know and couldn't understand.

A Bear of Very Little Brain

When I was little, there were bright moments when everything seemed just perfect. After skating lessons, the blinding new snow frozen just enough for me to walk on top without sinking, or watching my mother, Pauline, taking out the baker's icing set to make butter cream flowers for my birthday cake. Working hard to solidify the image in memory, trying to block out less happy impressions, I would say over and over to myself, You must always remember this. You must always remember this.

I'm saying it now as I look at David, sensing that something precious between us is fast slipping away. He's waiting, staring at the birch we have called "David's tree," newly planted outside his window. Does he notice how thin, how frail it appears? David, too, seems vulnerable. He has always been an intense child, full of contradictions. Dark unruly hair; high, smart forehead; ears that stick out a little; large, mysterious, nearly black eyes. Sometimes those eyes are filled with radiance and excitement, but I've also seen them fog over with an inward glance that excludes others. Merry, impish. Funny words no one uses much anymore would be right for him. Not even Larry can make me laugh as loudly. Imaginative. But sad, too. David's lips are full but unformed; he tends to hold his mouth and jaws slack. His smile, when not completely comfortable, strains with the effort to get his face to match his feelings. His hands, I've recently noticed, are not strong. Elongated, weary fingers that never firmly grip but more often just hang in my own. He is wearing blue jeans, but I've had to do the snap for him, because he can't get his fingers around to close it himself. Buck-toothed and beautiful, he has a quiet, sly demeanor that appeals immediately to adults but not as easily to other children, with whom he is often shy. Sometimes, when no one is looking, he has a hang- dog stance. He is a child born to be rescued.

Always sensitive to my moods and anxieties, David suspects something is wrong. We do our most important talking in the car, when we don't have to look at each other.

"Mommy, is Winnie the Pooh a bear of very little brain? That's what they say about him isn't it? What does it mean to be of little brain?"

"I think that's what they say." Trying the psychotherapist's ploy of turning a difficult question back, I make a clumsy effort to avoid answering. "What do you think it means?"

"Well, I was wondering...Could you live without a brain? What would you be like with a little brain? How big is a brain usually anyway? What would you be able to do if you had no brain? Could you walk? Could you speak? Would something be funny about the way you talked? Could you remember things?"

He sounds excited; the pressure of his unvoiced thought--that he is broken--forces him to speak quickly. The rapid flow of the words signals an important idea, one that has to be released before it's forgotten or pushed aside. He needs to know the answers, but he's not just asking about anatomical realities, he's wondering about himself and, by implication, about me. How do I, his mother, feel about creatures with very little brains? For a moment I wish I didn't suspect the subtext of his question. How much easier not to see his pain and just plow on, doing the right thing, the thing that needs to be done. But his questions continue to come, thick and furious with worry.

"Why did they try to kill Wilbur?"

"You mean the pig in Charlotte's Web?"

"Yeah, that book with the spider. Did they want to kill him just because he was too small? That's not very fair. What does it mean to be the runt of the litter? What makes someone the runt of the litter? Can a kid be a runt, or just a pig?"

Could he really be asking if no one wants a child with problems?

Nursery School

I don't remember too much about how I felt in nursery school. I had a best friend, Connell. I went to a nursery school where the mothers came in and worked every day, so you got to see your mother a lot. I remember we had a science teacher, Mary. She was great. I loved science. We would do these fun experiments every week. On Halloween she wore a big witch's hat and said she didn't feel like herself that day. It made us laugh. We had two regular teachers. One had yellow hair, and she would talk to me about bugs and fish. The other one had black skin, and she would hold me on her lap and talk to me if I cried. We had a turtle, Snapper. He looked at us. We baked cookies and grew butterflies and had imagination centers like a Japanese restaurant or a theater.

My teachers seemed excited by the things I wanted to know about like the early humans. We did a book with pictures of when we were one year old, two years old, three years old, and four. We had to say what we wanted to be when we grew up, and I told them that I wanted to be a scientist that studied dinosaur bones and early humans. I knew the word for someone who studied early humans--a paleontologist. My Grandpa Ray is a geologist, and he taught it to me. That was what I wanted to be, a paleontologist, but it was hard for me to say it. I didn't think anyone would understand and then they would say "What?" and I would have to explain. So I just said early humans.

The only thing I really hated about preschool was swimming. I'd think, Oh no, swim day again. I hated going in the water. The water was too deep, and I thought I was going to drown. They made you slide down this big slide, and I was scared but I didn't want to cry in front of the other kids so I did it anyway. I couldn't tell how near it was to the water.

Sometimes I hated the playground because I couldn't recognize the kids. Well, I could recognize them. I just couldn't remember their names, so I couldn't call them. Even by the end of the year sometimes I still would forget their names. Like my best friend Connell had blond hair, but so did a boy named Teddy, but if they were running around in the playground, I would get confused about their names. I would try to tell them apart by their clothes, but if they wore the same color shirt I was lost. If I didn't play with Connell, I would stay by myself and make up stories. I liked nursery school 'cause I had a best friend. We would talk about our mothers and all the other kids. I never liked to go home with other kids without my mother being there. Sometimes, I would go home with Connell after I got to know his mother, Marthe, pretty good.

In nursery school we would have meetings on the big rug. They put the first letter of our names where we should sit on the rug. I didn't know what it was, but I listened very carefully when they told me where to sit. I made sure I sat in the same space every day. I listened carefully when they gave out the jobs because I couldn't recognize my name on the job cards. Connell knew all the letters in nursery school and he could write them. He told me it didn't matter that I couldn't find my name because he could always find it for me and write it on my pictures.

Leaving New York

In the middle of nursery school, we moved out of New York City. Mommy and Dad were building a house, but it wasn't done yet. They sold our apartment and we had nowhere to live, so we moved in with Grandpa Irv and Granny Pauline. Me and Mommy would take the train from that big station into New York City and then take a taxi to nursery school. Mommy would let me yell out the window of the cab. I loved going on the train with her. We would buy comics and she would read them. I sat on her lap.

Granny Pauline and Grandpa Irv were nice at first. Granny Pauline would read books to me every night. They wanted me to work on learning the letters. Grandpa Irv said I was being lazy. They thought I was stupid because I didn't want to look at the letters. Grandpa Irv gave me a typewriter. He said it would be fun for me and I would learn the letters that way. I just kept pressing all the keys different ways. He got mad and said I was fooling around. They wanted me to clean up my Legos, and Granny Pauline said I had too many toys and if I didn't have so many toys, I would have learned my letters. Everybody was trying to make me watch Sesame Street so I could learn the letters and numbers, but I hated it. It was for babies.

I can remember the whole downstairs floor of that house. I would have these weird dreams when we lived there. Black-and-white pictures of people screaming. I woke up once and thought Oh my God. I had another dream about a sad dragon and one with a boy with metal teeth and pimples.

Then Grandpa Irv got sick. Sometimes I hated him because he yelled at me and he never yelled at Dan, my little brother. He thought Dan was so cute. He would play games with him, but not with me. Once Dan accidentally knocked out the screen door. I was mad and I said, "How cute."

But when Grandpa Irv got sick and went up to his room and died a few weeks later, I started to get scared because I wished he'd die.

Then we moved to Irvington, and I thought it was named after Grandpa Irv. I thought he might try to come and get me. I couldn't think about anything else, and moving to a town named after him scared me even more. We moved in September and I started kindergarten. I wasn't even five yet.

--from Reading David: A Mother and Son's Journey Through the Labyrinth of Dyslexia by Lissa Weinstein, Ph.D, copyright © 2003 Lissa Weinstein, Ph.D., published by Perigee, a member of Penguin Group (USA) Inc., all rights reserved, reprinted with permission from the publisher.

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  • Anonymous

    Posted October 3, 2003

    Terrific relevations of a mother's feelings

    This book captures the intense feelings of a mother, clinically trained to handle to dyslexia, as it hits home with her own son. The narrative is beautifully written and reflects complex feelings that constantly invade one's life when your child has this condition. The book offers tremendous consolation to other parents in a similar situation. You are not alone in dealing with this problem and there is hope even though it is a long road. A book that should be read by parents, educators and individuals with dyslexia.

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