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Dealing with dyslexia

How learning to read helped bring a mother and son closer than they had ever been.
/ Source: TODAY

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. Here's an excerpt of “Reading David”:


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.

Excerpted from “Reading David: A Mother and Son’s Journey Through the Labyrinth of Dyslexia” by Lissa Weinstein, Ph.D. Copyright © 2003 by Lissa Weinstein. Published by arrangement with Perigee, a member of Penguin Group (USA) Inc. All rights reserved. No part of this excerpt can be used without permission of the publisher.