“Letters to Sam”--Much more than just another autism book….

[Guest guest]

" When it gets dark enough, men see stars, " according to Emerson. In

irreducibly simple yet profound words, Dan Gottlieb shares the

wisdom he has derived from living in a wheelchair, battling his own

inner demons, and practicing psychology for the past 25 years. His

loves, losses, and lessons are informed and inspired by the unique

bond he shares with his grandson, Sam, who is also different--

growing up with a diagnosis on the autism spectrum. I wish I had

this book when my son was diagnosed with autism over 20 years ago.

I am overjoyed that we have it now for Letters to Sam is a guide for

the soul, much more than just another autism book, and a wonderful

gift to families.

A. Naseef, Ph.D., author of Special Children, Challenged

Parents and co-editor Voices from the Spectrum.

Seeing the Person

By Gottlieb

Author of Letters to Sam

Dear Sam,

I can hardly bear to think about it, but I know that someday you are

going to overhear someone saying, " He's autistic. " At that moment, I

fear, you will realize that when some people look at you, they don't

see Sam. They see a diagnosis. A problem. A category. Not a person.

In May 1969, when I was twenty-four, a woman named Norma taught me

how limiting such labels can be. I was a brand-new psychologist

working in the acute psychiatric care ward of a city hospital.

Treating Norma was part of my training. I really was not a very good

student -- I didn't retain information well -- and all I knew about

psychotherapy was that it lasted fifty minutes. (That's a slight

exaggeration -- but only slight!)

Norma, on the other hand, had experience; she'd been in and out of

psychiatric hospitals for more than thirty-five years. Her chart

said " schizophrenic. " That was the label she wore when she shuffled

into my office for the first time.

Norma came to that first meeting with a sheaf of papers clutched

tightly in one hand. Of course, I had to demonstrate right away that

I was the knowledgeable professional and I would be able to help

her! As soon as I started talking, Norma began ripping the papers. I

didn't want to ask her why. I was afraid the question might make her

mad. I had the notion that if the patient gets mad, that's bad

therapy, and if she doesn't get mad, that's good therapy!

It was a long fifty minutes, but finally we were done. Norma got up

from her seat and shuffled toward the door, clutching the shredded

paper.

As she got to the door, she turned to me. " You know what? "

" What? "

" You're full of crap. " She shook her fist at me. " And I've got the

papers to prove it! "

That was the beginning of my relationship with Norma and my first

glimpse of the person behind the label. She was right about me. She

knew it, and I knew it, and after that, I didn't have to pretend I

was something I wasn't. I didn't have to make her believe I knew

what I was doing, because both of us knew I had very little idea

what I was doing.

And somehow this was okay with Norma. Certainly, her brain worked

differently from mine, because she had schizophrenia. But she was

not " a schizophrenic. " She had told me I could stop pretending, and

she had the papers to prove it. Now we could see each other clearly.

Norma never frightened me, though her appearance could sometimes be

frightening. She looked very old and wizened. Her mouth was always

parched, and she made a constant pill-rolling motion with her thumb

and index finger -- a common side effect of medication. Also, she

could get very agitated at times, to the point that she would need

to be restrained. But I wasn't afraid of her. During all the time

that Norma and I spent together, I was quite sure there was nothing

to fear.

Shortly after your aunt Ali was born, I brought her into my hospital

office to introduce my first child to my colleagues. The baby in my

arms immediately drew an audience. Though my attention was on Ali, I

noticed Norma out of the corner of my eye. She was about thirty feet

away, standing in the middle of the public space, making odd

gestures as she often did. She seemed pretty lost inside her own

mind. But gradually her attention was drawn to the admiring crowd

and the object of their attention -- the little pink bundle I held

in my arms.

Slowly, Norma began to calm down. Over the next several minutes, she

made her way toward me. By the time she got there, her eyes looked

perfectly clear. She didn't say anything. She just held out her

arms, wanting to hold Ali.

I placed my child in her arms and watched her -- this scary,

disturbed woman -- be as sweet and nurturing as anyone could be.

Then she handed the baby back to me, went back into the public

space, and got lost again in her mind.

Would I hand my infant daughter over to " a schizophrenic " ? Of course

not. But I entrusted her to Norma. Norma's illness was a disease of

her brain. But her soul was unimpaired.

Sam, I know your mother struggles with having you categorized

as " autistic " in school. While she realizes you must be classified

that way in order to receive the services you need, she also knows

that you are so much more than autistic. She fears that once you

have that label, that's all anyone will see.

As I'm watching you grow, your abilities change almost every day.

When you were first diagnosed with PDD, your parents and I did all

the research we could to find out what was in store for you. We

learned that you would have language difficulties. We anticipated

that you would first communicate in sign language -- as you did for

the first three years of your life.

From our research into PDD, your parents and I also knew that it

would interfere with your ability to be flexible and to pick up

social cues. We were told that you would have trouble with fine

motor dexterity, but no problem with gross motor skills. We continue

to see that. You still can't put on your coat or open a Ziploc bag.

But you've become quite a golf and baseball player.

So the label we learned -- PDD -- helped tell us some important

things about your disability. But it was only a starting point. Now

you are talking quite a bit, and we're learning more about who you

are. Every day, we make discoveries about your abilities and

limitations, your likes and dislikes, what you can tolerate and what

you can't.

I know that when other kids are talking, you are not able to go up

to them and join in. You sometimes become upset if you can't put on

your Spider-Man pajamas right after school. If you open a candy bar

and it's already broken, or if you open a box of crayons and they're

in the wrong order, you get very frustrated. When you were at Disney

World, you couldn't go on some rides where you had to fasten a seat

belt across your lap. Finally your mother understood what the

problem was. You were wearing shorts and, to you, the pressure of

the seat belt on your legs was terribly painful.

So it's quite true that you have to deal with autism. But autism is

not who you are.

A couple of weeks after my accident, I was lying in my hospital bed

and I heard my doctor in the hallway saying, " That quad in 301 --

did he get his medication? " Just a couple of weeks earlier I had

been Dr. Gottlieb in some circles. In other circles, Dan. In others,

Daddy. And now I was " the quad " ?

Well, Sam, over the years I have learned that I am not a

quadriplegic. I have quadriplegia. You are not autistic. You have

autism. Because of our labels, some people will be afraid to

approach us. Others will be cautious about talking to us or trusting

us. With my spinal cord injury and your autism, we look different

and act different. But we can also teach people, as Norma taught me,

that no matter what happens to our bodies or our minds, our souls

remain whole.

Love,

Pop

Copyright © 2006 Gottlieb

excerpted from the book Letters to Sam by Gottlieb Published

by Sterling; April 2006;$17.95US/$25.95CAN; 1-4027-2883-2

Gottlieb, a practicing psychologist and family therapist, is

the host of " Voices in the Family " on WHYY, Philadelphia's National

Public Radio affiliate. A columnist for the Philadelphia Inquirer,

he is author of two books, including a collection of his columns

entitled Voices of Conflict; Voices of Healing. He is the father of

two daughters, and Sam is his only grandson. The author's royalties

will benefit Cure Autism Now and other children's health

organizations. Visit www.letterstosam.com for more info.