a Family Affair
Dr. Lissa Weinstein talks about how learning
disabilities affected her family and her marriage.
by Hal Stucker, National Center for Learning Disabilities,
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Ph.D., is an assistant professor in the doctoral program in
clinical psychology at City College and The Graduate School of
The City University of New York, as well as an associate
director at the Pacella Parent Infant Center. She has worked as
a clinical psychologist for more than 20 years and authored
numerous articles about developmental psychology. Her book,
Reading David, (Perigee Books) chronicles her experiences caring
for her dyslexic son, incorporating both her own voice and that
of her son, David.
NCLD: Going back to the beginning, when you and your husband
first realized that your son David was having difficulty
learning, did the dynamic between the two of you change and, if
so, in what ways?
Dr. Lissa Weinstein: Well, I think we initially had very
different perceptions about what was going on and how serious it
was. My husband is a research psychiatrist and from a long line
of Harvard grads, and he knew something was wrong, but in a way
I think he really didn't quite get it. His attitude was, "Don't
worry, David is very bright, he'll be fine. Everybody learns to
read sooner or later—whatever problems David has, he's so
bright, he'll learn to compensate." Larry tended to stay kind of
distant and get more involved in his work, which is often, I
think, how men respond to something like this. I've seen and
evaluated a lot of kids with learning disabilities in my career,
and it's rarely the fathers who are in my office.
A lot of that, however, is because the mother is so involved and
is spending so much more time with the child. And, because of
this, I think that moms have a much better intuitive sense and
know when something is wrong. If you're not with the child a
lot, then you probably won't pick up on these issues.
So I felt like I was closer to the problem and knew better how
much pain David was going to be in for. The first manifestation
was in speech—he had all the classic difficulties with
articulating speech sounds, and this is what he was first in
therapy for. It was only when I took him for a later speech
evaluation, when he was doing a test that involved naming, and I
looked at the responses he had given, that I couldn't deny that
it wasn't just a speech problem, that it was going to be a
reading problem too. He had terrible trouble learning letters.
In fact, he really had all the most serious signs of dyslexia. I
think from the beginning I was also more anxious about David's
problems than my husband was, especially after seeing the
results of that test. I was really afraid he'd never learn to
NCLD: Did the two of you talk about the David's problems openly?
Were you able to talk with David about his dyslexia as he began
Dr. Weinstein: It really wasn't until I wrote the book about my
experiences, Reading David, that I realized how little my
husband and I talked about it. We didn't talk about the pain of
it; we didn't talk about what the future probably held for David
and for us. As a clinical psychologist, I had tested and
evaluated a number of dyslexic children. I knew how the
developmental course would run, and that it would be, at best,
extremely difficult for all of us.
Of course, it's one thing when you're diagnosing a child
professionally and entirely another when the child is your own.
What you're suffering from is what is known in psychiatry as a
narcissistic injury—everyone fantasizes that they're going to
have perfect children, who are going to be better than you are
in every way, and when that doesn't happen it's very natural to
try to avoid the pain and the disappointment by not talking
about it. That's part of the reason I started writing the book,
because I felt we all had to start talking about it, especially
By that point, I wasn't so concerned about my husband. I
thought, 'Hey, he's a grownup, let him deal with it.' But with
David, by the time he was at the end of second grade, I could
see he was in terrible pain. We've always had an intensely close
relationship, and I could see he was just closing up into
himself. You could see the pain on his face. This was a child
who had loved language, had loved being read to, and suddenly
you couldn't get him to go near a book. He would cry at the bus
stop going to school. Finally, we were on vacation, and I said
to him, 'You know, we should really write a book about this.' I
never intended to publish it; it was really just a ploy to get
him to talk to me.
But when he started opening up and telling me about what he was
experiencing, I was simply amazed. He was telling me things
that, even as a psychologist, I had no idea about—about the way
he processed information, about how early he knew he had it. He
said, "I knew in preschool I wasn't going to read." It just blew
me away that I'd never heard this from him before.
Children are extremely sensitive to a parent's pain: They don't
want to hurt you; they don't want to tell you something that
they think might make you not love them. I see this all the time
in my office—everyone ends up colluding in a ring of silence.
The parent says, "I don't want to tell him he's being tested,"
or "He doesn't know anything is wrong." Then the child comes in
and says, "I look at the words, and I can't keep the order in my
head." It's obvious that they know what's going on, that
something is wrong, and the parents are doing them no favor by
not talking about it.
NCLD: Are there other aspects of the parent/child relationship
that you find parents of children with learning disabilities
often mishandle or neglect?
Dr. Weinstein: Oftentimes, I think parents neglect play and
don't encourage it enough or understand how to make the most of
it in terms of a child's learning. For example, David got very
interested in dinosaurs around the second grade and started
drawing pictures of them and naming them. And I encouraged him,
though when he started I also worried that it was something he
was doing as a way to avoid having to practice his reading. Over
the course of writing the book, though, I came to realize this
was a kind of self-remediation through play, a way he had found
to teach himself. He would draw a picture of a dinosaur, write
its name and say the name over and over again. The names were
long words, usually pronounced as written, and there was a
picture he could associate with the word. That was how he taught
himself to sound things out, learning the name from the picture
and repeating it over and over.
Play tells you what a child's passion is, what they really love.
For a child who reads normally, just learning how to decode
letters and words gives them a kind of power. They feel they're
joining the adult world. A dyslexic child, though, generally
never gets that pleasure, reading is painful for them. Play can
help them get over their anxieties about their reading problems
and so, when you plan a remediation for a dyslexic child, you
need to ask that question: What does this child really love.
What is his or her passion?
Play also helps children begin to understand that words are an
abstraction, that they are symbols that represent things, and to
start developing an intellectual structure to better understand
the world around them. And because a child is taking pleasure in
play, it generates a lot of repetition. They'll tend to do the
same thing over and over because they're enjoying it, and this
really helps dyslexic children make the connection between sound
and symbol. Not that you should simply let them play as much as
they want. They need, for example, a good structured phonics
program, to teach them how to sound words out, and they need to
be taught that in an orderly way. But you also want to make the
child a learner and to teach them that there can be pleasure in
learning. Unstructured play can help teach that.
NCLD: What is the most important thing for the mother or father
of a child with learning disabilities to remember about
Dr. Weinstein: The most important thing you can do for a child
with learning disabilities is to make sure he or she feels safe
within the parent-child relationship. There needs to be a lot of
emotional reassurance and a kind of emotional predictability on
the part of the parent. Dyslexic children are going to be angry
and frustrated, and they're often going to make you angry and
frustrated. It's very important that they can read your signals
about what you want and what you expect from them and that those
signals are consistent. One of the worst things that can happen,
and I think parents of dyslexic children are especially at risk
for this, is abandoning the child emotionally, because he or she
is harder to deal with or because the parent is so disappointed
because the child is not "perfect." What a child has to know,
and what you need to say to them, is, "We will deal with this
and get through it together. It will be hard, you're going to
have to learn to read in a different way than the other kids,
but you will learn to read. And we will do it together."
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