A Grandfather's Love in Letters to Sam.........

[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.