Memories of Hope

James Murray

We ask parents or other family members if they wish to share memories and photos of their loved one. The thoughts and remembrances are beautiful, poignant, sad, funny, hopeful and always touching. James Max Murray died on May 4, 2001 at the age of 64. His sister Janet contributed her father’s story of life with “Jimmy” and the search to understand what was happening to his son that he wrote in 1978. Janet also chronicled her own remembrances of her brother in 1992 at the time a team of consultants at the Indiana Resource Center for Autism did a collaborative consultation and diagnosed Jim with autism. A great nephew of Jim and Janet’s was diagnosed with Asperger’s syndrome in 1993.

Jane Pickett, Director of the Autism Tissue Program

Jimmy
by James E. Murray, 1978, his Father

James (Jim) Murray
by Janet Bartlett, his Sister

Jim Murray
by Lisa Elliott, his Niece

Jimmy by his Father

Jimmy was born on Wednesday 4th of November, 1936 at 4:00 A.M. Tuesday was election day and our doctor (J. P. Swain M.D.) was also a candidate for the office of county coroner that year. Jimmy came at an inopportune time for the doctor because we had to call him at the electiona headquarters at 9:00 P.M. on November 3rd. He was tired and he took short naps on the living room couch while waiting time for the baby to be born. He was the only one to sleep.

Eleanor had regular check-ups that summer, because Jimmy was the first and we were deeply concerned, though they were more like pep talks than check ups. We asked Dr. Swain about going to the hospital and he told us that we could, but he preferred being in the home. He had been the physician for two of Eleanor’s brothers and they were born at home. But the night that Jimmy was born, I wished many times we had been at the hospital where help would have been available. Eleanor had labor pains several hours from early that evening until the baby was born in the morning. Dr. Swain would assure Eleanor, her mother and me that it was not time for Jimmy to be born and then lie down for another nap. Finally! The baby began to emerge and Eleanor was in intense labor pain. She was almost exhausted. The doctor gave chloroform to her to ease the time between the labor pains. It was a practice that would not have been allowed at the hospital. When Jimmy was born he was very dark red and I thought he would never breathe as the doctor worked with him. It was good to hear his first cry! Mother helped wash him and Dr. Swain clipped the umbilical cord and wrapped some sterile bandage around his waist. Jimmy seemed to be a healthy, well formed baby. Eleanor recovered quickly, as a twenty year oldmother can!

Jimmy was a breast fed baby. He grew well and looked healthy but he cried a lot. When he was six to eight weeks old, he developed a rash on his body. We consulted Dr. Curry, a specialist in child diseases. He said that Jimmy was OK except for the rash. Dr. Curry called it a “protein rash” and he prescribed an ointment to put on the rash and it was soon cleared up.

Jimmy was able to walk when he was one year old and he was strong for his age. He began to say a few words from age one until about thirty months, then his learning was very slow. He was very hyperactive at this time in his life.

One day Eleanor noticed him stop and stand quiet and his head had a spasmodic movement for about one or two minutes. After that he became sleepy. Later we took him to Dr. C. M. White and he diagnosed the seizures as epilepsy. An epileptic seizure is a result of a temporary disturbance of the brain caused by an accident or injury to some part of the brain. Dr. White advised us to take Jimmy to the Mayo Clinic, Rochester, Minn., which was recognized as one of the foremost clinics at that time. July 1st, 1939, before Jimmy was three years old in November, we took him to the Mayo Clinic, where he had a series of tests. The doctors were very thorough with the examinations and after a consultation, they were in a definite agreement of the analysis of his illness. They said he had brain damage that could have been caused at birth, and there was nothing that could be done to repair the damage. They prescribed Phenobarbital to help the seizures. The doctor also advised that we try to get him into an institution for the mentally retarded, especially since we had another son, Jerry, that was only three months old.

I was in despair! I had been so sure that Mayo’s could help Jimmy. Eleanor still had faith that another doctor or hospital might be able to help him.

After we had been to the Mayo Clinic, we asked Dr. Ott Casey (he was attending physician at the birth of our second son) if he would suggest something we could do for Jimmy. Dr. Casey recommended and made an appointment with Dr. Seegar, a Neurologist in Indianapolis, In. After one meeting with him he told us the same as at Mayo Clinic. Later Dr. Casey made an appointment for Jimmy at Riley Hospital, Indianapolis. It was a children’s hospital (part of I. U. Medical Complex). He was there for one week in September 1941, for a long list of tests. The report that came back to Dr. Casey was that Jimmy had damage to the frontal part of the brain. They suggested that he be sent to an institution. Jimmy had a very homesick week and he lost some weight during the time. He stayed close to his mother after he returned home.

Jimmy grew tall, slender and physically healthy. He had good muscle co-ordination. He would run and play, but slept a lot after taking the Phenobarbital. His greatest pastime was sitting on the sofa and with a rhythmic back and forth motion, bouncing his head on the cushion back of the sofa. He wouldn’t harm or hurt anyone. Jimmy wouldn’t hit anyone if they disturbed him but would protest by running and making a shrill cry. From the time he was very small, he learned to hum and could carry the tune of almost any song he heard. Our Janet and Jerry were happy, healthy, normal children. They had compassion for others and they loved Jimmy.

The Phenobarbital stopped the seizures in a short time. We gradually took the Phenobarbital away from him by the time he was 7 years old. At this time he began to learn new words and to be more alert.

After Dr. Casey had died, we had Dr. Dorothy Lauer to be our family physician. Dr. Lauer was our doctor for sixteen years until she retired. She persuaded Eleanor to fill out an application for Jimmy to the state school for the mentally retarded. In the teen years of Jimmy’s life he became irritable and developed a different form of rocking while standing. Dr. Lauer described his conduct as schizophrenia. Dr. Lauer had prescribed tranquilizers when he became too agitated, Jimmy was admitted on February 28, 1957 after he was twenty years old on November 4th, 1956.

After Jimmy was in the state school, we joined an organization to help the mentally retarded. It was through this organization that we learned about “phenylketonuria” the doctors would have to test new born babies for this ailment.

PHENYLKETONURIA is an inherited abnormality in the metabolism of the amino acid phenylalanine, which is a constituent of protein food. The abnormality is a recessive trait. A baby with phenylketonuria appears quite normal at birth. Toxic products from the abnormal metabolism of phenylalanine soon accumulate in the baby’s blood and urine. These toxic substances cause harm to the nervous system especially the brain. They can be prevented from forming by giving the infant a special diet containing proteins from which most of the phenylalanine has been removed. If this diet is not followed in infancy, severe mental retardation results. A very simple laboratory test on the baby’s urine shows whether or not phenylketonuria (PKU) is present. Now it is required by law in Indiana.

Jimmy wasn’t a “mongaloid baby”. Could the “protein rash” have been caused by phenylalanine? Or could it have been a deficiency in the need for oxygen at the time of birth? It’s been the same old story. Just like the doctors of Mayo Clinic told us in the beginning, there is no cure for brain damage. But we had the satisfaction of knowing that we did all we cold for Jimmy. He is one of about thirty on his unit. The people there are of a like degree of retardation, and they get along well together. They live in one building, go to another building for meals, and they are free to play outside on a large lawn or go to church. He gets to go to the commissary once a week, as he has coupons to spend for candy, gum and pop. Things are sort of routine. It’s a lackadaisical life.

We have visited Jimmy an average of once each month and planned a vacation at home each year for him. It has been twenty-one and a half years. He still remembers things and people at home, but he still has schizophrenic tendencies. They still give him tranquilizers, but have changed kinds over the years to prevent drug addiction.
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Jim by his Sister

I don’t know exactly where to start since I have known Jim all my life and I am Jim’s younger sister. Jim was the oldest, then Jerry who was 2 1/2 years younger than Jim and then me, Janet who is 2 1/2 years younger than Jerry. Both of our parents are dead and our brother, Jerry is also dead. Our mother died in December 1981 of ALS after 3 years of the disease. Our father died in October 1982 of a heart attack. Our brother Jerry, died September 1979 of a self-inflicted gunshot wound.

Things about Jim in his younger years will be what I was told by my parents. I asked my mother why she had another child when Jim was the way he was, and her answer to me was that she was pregnant with Jerry when they first suspected there was anything wrong with Jim. He had been a perfect baby (even though she had a difficult delivery). He learned to wave, feed himself, say da da and ma ma, at the time most children do, crawl, walk, and he was even easy to potty train. Not until he was about 2 1/2 did they start to notice that his speech did not progress, he didn’t interact with other children. At the age of 0–8 months he had a rash, the local doctor called it a protein rash. Dad always wondered in later years if it could have been PKU. At about the age of 3 my parents were very concerned that he was not normal and took him to Riley Hospital in Indianapolis. The doctor observed him in the office for about 20 minutes and told my parents there was nothing they or he could do and that Jim was mentally retarded. They refused to accept this and took him to Mayo Clinic in Rochester, Minn. There again they were told he was mentally retarded and they should put him in an institution. My mother could not bring herself to do this. They kept him at home and raised him as normally as they could. The three of us grew up in what to me seemed a normal family.

In our home we always had a lot of music. Jim has always enjoyed music They say as a small child, he would just hear a song once and he could hum the melody back to you. Our mother played the organ at the church. We had a piano at home and she played a lot.
While growing up our family had a large garden. This meant peas to shell, green beans to break and etc. Jim was a big help. He learned these tasks very easily and seemed to enjoy doing it. When Jim was at home he learned some words, mostly were things that he liked or wanted. Most of them in the category of food. While at Muscatatuck I do not think he learned any new words. In the last couple of years while at Normal Life I have noticed a few new words in his vocabulary. When asked a question, if he does not know what to answer, he will repeat the question back to you If he answers it is usually a ‘pat’ answer as to “How are you Jim”? his answer “Fine”. Jim has always been extremely coordinated. As kids when we played ball, he was very good at pitching. He was never aggressive, therefore he didn’t like to bat. As normal children, Jerry and I liked very much to bat, so Jim was always our pitcher. He could always put the ball right over the plate. He never showed any kind of emotion as to being happy he was playing ball but he never objected to anything my brother and I would ask him to do. When he played basket ball he never had a problem putting the ball through the hoop. He liked to roll marbles or balls and catch them just as they rolled off the edge of the table.

As far back as I can remember Jim has always flipped his hands and rocked back and forth while standing. He seemed content while doing this and no one in the family discouraged him from doing it.

He lived at home until February of 1957 when he was 20 1/2 years old. I don’t know exactly what changed my mother’s mind at that time but Jim had been sick and I think my mother thought it would be better for him. Even though it was a 350 mile round trip, my parents went to see him once a month for the 25 years he was there and they were alive. When they died I took over the responsibility of going to see him every month for the next 7 years he was there. And I continue to see him every month since he has been at Normal Life in Terre Haute. We discovered several years ago that Jim liked his picture taken with a Polaroid camera so he could see it right away. Later when he started putting the pictures in an album he became obsessed with the idea that he has to get the album filled with pictures. So when I go to see him he wants his Polaroid pictures taken and he immediately puts them in the album. Jim is very neat about picking up after himself. That was not as apparent when he was a child as it has been in his adult years.

Jim and I have a first cousin whose first born, a son, is just like Jim and he has been diagnosed as autistic. He is 12 years old. There are no other autistic or mentally retarded people in the family.
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Jim Murray by his Niece

LisaElliotCoverLisa wrote this when she learned of her family’s decision to donate his brain to the Autism Tissue Program. Lisa is the mother of a son with Asperger’s and the author of Embarrassed Often…Ashamed Never published by the Autism Asperger Publishing Company, 2002.

My uncle Jim is going to Harvard. My mother called to tell me the great news yesterday. It seems so unlikely that a boy born so long ago to a working class family in rural Indiana would now have a chance to make such a difference. We had little idea that they would take an interest in him. I’m so glad that they did. I wish his parents, my grandparents, could know that the groundwork they laid many years ago might now make a difference to the world. I have high hopes that he will be the key that unlocks the mysteries of autism. But then again maybe my hopes are too high. Perhaps he’ll be just another link in the chain or piece of the puzzle. Still, this miraculous request from a grand institution validates that every life is worth living.

You see, my uncle’s life is over. He died three weeks ago. Yet, the request of the Harvard Brain Tissue Resource Center (a part of a joint effort called the Autism Tissue Program) to study him post-humously is the culmination of work that my grandparents began when my uncle was only three years old.

In 1939 this very young couple began to notice alarming differences in their first-born son. He had begun to talk but then stopped abruptly. Near the same time, his mother witnessed petit mal seizures. They sought the cause. His father was suspicious of a protein rash that he later discovered might have been PKU. His aunt speculated that the milk from the aging family cow had gone bad. They felt an urgency that something must be done immediately. (Certainly all their instincts were right. Early intervention would have been the key had it existed at that time.)

Having very meager means and a new nursing baby, they set out for the Mayo Clinic in Minnesota. In 1939 the drive was long and rugged. Only a young hopeful couple with great determination like my grandparents could have made such a trek. Yet, the trail home must have seemed twice as long. The doctors at Mayo Clinic gave them no hope. The doctors labeled him mentally retarded and told them that there was nothing that anyone could do.

They returned home with nothing more to go on but the debt the excursion had incurred. Two more years passed and they caught up the family finances enough to make another trip. This time they would not travel so far. They had heard of a place in Indianapolis called Riley Children’s Hospital that offered them hope again. After a twenty-minute observation another expert crushed their optimism. Still, they were persuaded to leave their son at the hospital for a week of tests.

The results were two-fold. First, Jim was traumatized by his separation from his mother. Secondly, the doctors gave him a different label, schizophrenia. In hindsight, this unfortunate misdiagnosis had only one benefit. Jim’s mother was not classified as one of Bettelheim’s “refrigerator mothers.” In later years, this incorrect label frustrated my mother, Jim’s sister, prompting her to carry on her parents’ work by seeking out the correct diagnosis of autism.

Little did my grandparents know that all of their work that seemed so fruitless at the time would be useful after they and their son had passed away. They also could not have known that their pursuits would also benefit their great grandson. For my son, Clark, was diagnosed with Asperger’s Syndrome two years ago.

My uncle may have seemed unimportant in life. He was consumed by repetitive behaviors and sensory experiences. He was a man of few words and echolalia. Still he was able to make a difference in others’ lives while he lived.

It is said that a person is not remembered for what he does but rather for how he makes others feel. At my uncle’s funeral many re-counted how he had touched their hearts. He did so by naming those important people in his life in his own way thus letting them know they were special to him. He called his uncle and aunt “Butch and Shorty.” He called his sister “Jo-Jo.” These were his terms of endearment.

What started as my grandparents’ quest to unlock the mystery of their son may help to unlock the mysteries of others. The observations my grandparents wrote and the medical opinions they sought serve us now as we strive to crack the code of autism. We are proud to honor not only my uncle, but also my grandparents’ lifelong pursuit of “the answer” by donating my uncle’s brain tissue to the brain bank. Although they were never able to realize the fruit of their work, they have given the gift of hope to future generations. The research that goes forward from this will bear out the sacrifice, heartache and hardships of a family that began on this pathway so long ago.
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