Winners of the April & May Prize Drawings

Congratulations Edward Pacuinas (Wayne, IL) and Joan Jensen (Ridgewood, NJ), the lucky winners of our monthly prize drawings. 

Each will receive a bilingual desktop talking calculator/alarm clock.

Interested in participating in our prize drawings? Read box on your left for details.

Feature Article & Links:
I Walk In His Shoes - By Irene Slovak

My son is 42 years old.  I remember his childhood very well.  While most mothers remember all the cute things her child did, I can only recall specific bizarre incidents which began when he was about four years.

I was in a state of denial for the first three years.  I knew that my son did not behave as our older child did.

“He is special,” I said, though I did not know exactly what I meant.

“Edward is a good baby,” I remarked often.  “He doesn’t cry and when we go outside he just lays in his carriage without a murmur.”

Actually, I should add that Edward did not cry, did not respond when people looked at him and never smiled.  He was fed without a whimper and would just lie quietly as I took care of his needs.  I could bathe him, diaper him, and dress him and he just lay limp as I took care of him.

When he began to walk and talk, he would only repeat what we said.  He did not initiate any conversation.  His ‘gross motor control’ was poor.  In other words, he could not catch a ball, he did not run or skip.  After a while we noticed that he did not speak at all.

My husband and I felt he needed some contact with children of his own age and so we decided to send him to nursery school.  He needed to imitate and react to his peers.  We found a small group near our home and we knew it was an excellent place.  But after only a week the teacher called me and asked me to come see her.  She told me that I should get help because she could not give him all the special attention he needed.  That was all she would say.

I took Edward to our physician and he gave us some names of pediatricians.  We traveled throughout the city going from one doctor or psychiatrist or psychologist or anyone who mentioned he thought he could help.  It was all with little success.  

I still feel the shudder when I recall going from one doctor to another searching for answers.  I had to take Edward myself because my husband worked all day.  One day we had an appointment to see a doctor.  It was useless, I felt, but I had to keep trying.  So Edward and I rode some twenty miles from Rockland County to the Bronx, in upper New York City.  We had to cross a wide intersection.  We were crossing the road, as the red light indicated to do, when Edward decided to have a tantrum.  I did not have any idea why he suddenly began screaming and pulled away from me, fell to the ground and had a full-blown tantrum.  He was a healthy four year old.  I could not lift him so I grabbed his arm and dragged him across the street.  When we reached the sidewalk I let him down and realized that traffic had stopped while we were negotiating the crossing.  

“How can you be so cruel?” one pedestrian exclaimed in a loud voice.  

Fortunately she kept moving and I did not have to explain to her, and the others that were looking on, about my son and his problems.  

This incident left a lasting impression on me.  When we arrived home I explained to Edward as best I could what and why we had to take the trips to doctors.  I’m not sure he understood it all, but he did not act up again while we were visiting the many doctors.  

It was months and then years before we received the diagnosis of his problems.  He was autistic.  What was that?  There were very few books that even spelled the word correctly.  What to do and where to get help was impossible information to get.  

Watching Edward we knew that he had unusual manifestations:  he sat on the floor and rocked back and forth, or he ran in a circle for hours, or he banged his head on the wall until we stopped it.  His hands would shake and he did not speak.  When he wanted something he would point, or if we did not understand, would scream and lie on the floor in a full-blown tantrum.  

He seemed t react favorably to music on the radio.  Maybe this can be one answer we thought.  So we purchased a small recorder which he could play himself.  He learned to use it and he played one record over and over until we hoped that the record would wear out:  “Catch a Falling Star”, sung by Perry Como.  

Edward was a very good-looking baby and child until you looked at his eyes.  He did not look directly at anyone and his eyes appeared to be unfocused and blank.  He did not respond to anyone.  He did not smile nor cry when physical hurt was inflicted.  It was stoicism to the ultimate degree.  

We did not have a definitive diagnosis or prognosis.  Where do we go and what can we expect?  

We were told that at the state hospital in our county a doctor could give us some answers that we were searching for.  We made the appointment and met him at the hospital.  As we walked down the long corridor of the gray interior, Dr. Clardy walked with us to his office.  He was a man who appeared to be in his seventies, wearing extremely thick glasses.  We were told that he had very poor vision and was expected to retire from practice very soon.  

He walked with us and assured us that things would turn out satisfactorily for Edward.  “He has autism,” he said without hesitation and without waiting for our questions.  “But Dr. Clardy, you haven’t even spoken to him or anything. How do you know?” I asked.  

“I can tell by the way he walks.  He walks on his toes.  An autistic person does that.  The other manifestations which you wrote about tie in with all that I hear.”  

Dr. Clardy also told us that Edward can learn and perhaps can even do much for himself.  It was very hopeful for us, but we did not realize at the time that the future advances were difficult to achieve and it would be a long, hard time before any specific achievements could be seen.  

It was very difficult for our family, my older son, my husband and I.  We had to focus all our attention on administering to Edward’s needs.  

I remember all of this in the early years of Edward’s life.  Mostly, in looking back, the word that comes to mind now is frustration.  

We were all frustrated in trying to help the child but it seemed to be just out of reach.  

As the years passed, Edward became more and more capable and was able to assume a nearly independent life.  

We often see his accomplishments and forget that he is still autistic.  He can live almost independently but requires guidance and assistance.  It is often difficult to remember that he has a disability.  He is not physically disabled, nor sightless, nor does he have any other visible sign of a disability.  The big problem he has is the frustrations from his autism.  

The years passed for me as well.  Many physical problems developed with aging.  I barely noticed that I asked to have the radio, TV and even conversation be ‘louder’.  

When the TV was ‘louder’ and I still could not hear it, it was time to seek help.  I purchased a small hearing aid.  That was not sufficient and so there were a series of hearing aids that gave me more and more sound.  We went to one audiologist after another.  Each one told me he could solve my problem.  The aid lasted only a year and then I needed a stronger, louder one with more clarity.  And with each new hearing aid I felt closer to what could the ultimate outcome, a life without sound.  

Now the audiologist told me to use lip-reading and face the speaker and use inferences, and context clues.  That was fine, but it didn’t work.  My sons were not accustomed to my disability and were discouraged and dismayed.  They would no longer want to talk.  And neither would I.  We finally communicated via email.  That was okay for a while but it could not replaced sound.  

I did not hear and I could no longer talk on the phone.  I could speak, but I could not decipher the language of the other party.  I had to stop using the phone and withdraw from another media of conversation.  

I have a very serious hearing problem.  That word that comes to mind for me and my family is frustration.  They could not make themselves heard and if I could not understand what they said I would complain and have a frustrated response, as much a tantrum as my adult years would permit.  

It was with the quiet of my years that I was able to withdraw from conversation, contact with people and have retrospect.  

We cannot understand frustration in others unless we experience frustration in ourselves.  Compassion is an empty word for it does nothing for the recipient.  

We cannot understand unless we walk in his shoes.  

Edward had frustration and he still has it.  Autism is forever.  

I now walk in his shoes.

Irene Slovak taught public schools for 20 years before she retired to start a business of selling books and publishing BOSC -- a Directory for People with Special Needs. She confesses she's ready to retire now and would gladly do so if someone took over her Directory. Irene lives in Rockland County, NY, near her sons and other members of the family. She enjoys watching her gardens grow in the spring.

Reprinted with the author's permission.