Helen Rosemarie Healy

Helen Rosemarie Healy was born on August 2, 1965 in Roseburg, Oregon to parents, Susan Schrepping and Timothy Healy. Helen is survived by her loving family: parents, Susan Schrepping and Timothy Healy; brothers, Christopher Healy and Patrick Schrepping; sister, Eugena Fields; aunt, Patricia Heinz; and uncle, James Allegretto.

Helen was preceded in death by her loving aunt and Godmother, Mary Ann Allegretto, grandmother, Helen Allegretto, grandfather, Eugene Allegretto, and loving great aunts, Anna Brisindi, and Mary Patrella. 

Helen’s family is grateful for the compassion shown by those who understood Helen, especially Mae Wallace, of the former Lambert House, and for the compassion and understanding shown by Lift Disability Services, Helen’s foster home, Love & Respect, especially, Sally Tselot Negash.

Helen was not born into a kind world, but she was well loved by those with tender hearts and open minds. She was able to bring out the best in those she encountered. Helen was a blessing to her family and was always their own Special Angel.

No service will be held at this time. A memorial service will be scheduled sometime in 2021. In lieu of flowers, please consider a donation to Providence Children's Health Foundation.

 

WHO IS HELEN

By Helen’s mother, Susan Schrepping

I knew as soon as I saw her that something was wrong.  She looked nothing like her older brother.  She was very pale and small, much too small for a baby that was just two weeks early.  She had a foreign look that I could not identify.  Her cry was a whimper and her suckles so weak I could hardly feel her nursing.

I had contracted the German measles in early pregnancy.  I did not want to spend Christmas away from my family and insisted on going to Portland to be with them.  I was incredibly lonely in Roseburg.  When I got to my parents’ house that Christmas week, I found that my little sister had the measles.  I didn’t tell my mother that I suspected that I might be pregnant.  I was afraid that she would send me to my aunt’s house just a few blocks away.  I wanted to be with my mother and the rest of my family.  I had no idea of the dire consequences of the German measles.

Once I contracted the childhood disease, I was ill for months.  Once back in Roseburg, the doctor would not see me while I was ill, even after the rash was gone.  The doctor confirmed the beginning of my pregnancy but was assuring that nothing would be wrong with the child.  He claimed if the fetus was affected, it would abort itself.  He never considered that the mother was young and strong.  Maybe he just didn’t understand the devastation which would follow in what later would be referred to as the rubella syndrome.  Little was known about the German measles contracted during early pregnancy until after that epidemic in 1965 and 1966. 

The hospital isolated me in a private room and the nurses kept their distance.  Every time the doctor would see me I would ask if something was wrong with my baby.  When I began insisting, the doctor shouted in my face:  “She is a Mongoloid, OK!”  You see it was 1965 and that was the term used for children with Down Syndrome.  It was not uncommon to have my baby referred to as retarded and idiot.  When I was visited again by this doctor and also the priest, I was advised not to take Helen home, but instead to commit her to Fairview Hospital, the state institution for the mentally challenged.  The advice also included a recommendation to simply have another child.  In other words, replace this child that the doctor and priest considered to be defective.  This was the advice given in 1965. 

My little girl was beautiful and precious.  I made a promise to keep her with me until one or both of us were no longer.  I wrote to my parents and my dad called me sobbing.  I told him I would never give Helen up.  He said he would expect no less of me.  It was the beginning of the long and hard journey for Helen. 

What followed were years of uncertainty.  I learned shortly after Helen’s birth that she was not only Downs but also deaf.  A few weeks later I was told that Helen had a serious heart murmur and would never live to reach five years of age.  The doctor that gave me this diagnosis and prediction of Helen’s life span asked my mother why I was crying.  My mother had accompanied us to the specialist.  I suppose he thought his news of a short life for my child would be a welcome relief. 

My youngest sister, Mary Ann Allegretto, cared for Helen while I worked.  She taught her to use the stairs and to drink from a straw.   This was a milestone for Helen.  Without skills, teaching Helen was an arduous challenge and required much patience.  Mary Ann loved Helen and Helen loved Mary Ann.

The Emily School, on the campus of Providence Hospital, accepted Helen for her first nursery school.  The Jewish Community Center had a program for young children and had transportation.  Both programs were wonderful but neither was equipped to deal with a non-communicative and mentally challenged child.  I was advised that Helen should be professionally toilet trained if she was to be accepted into an appropriate education program.  I sent her to the Waverly Children’s Home to receive that training.  While she was being toilet trained at Waverly Children’s Home, the social worker told me that it was Oregon law that all children had to be educated. 

When Helen was eight years old I was forced to commit her to Fairview State Hospital.  I had been trying to find a school for Helen.  At that time, there were schools for the mentally challenged. They would not accept her because she was deaf.  There were schools for the deaf that would not accept her for her mental deficiency.  Those schools only taught lip reading.  Fairview was the only place in Oregon where the mentally handicapped child could learn sign language.

Her stay at Fairview only lasted a year.  I was not satisfied with what the State institution considered “training.”  As soon as I would return home from my weekly visits to Salem, I would be on the phone calling Portland Public Schools again and again.  They finally agreed to accept Helen on a trial basis.  By that time, others affected by the measles epidemic demanded an education.  Still, Helen was the only deaf and mute Downs child in the system.  Even though Helen was bright, she had no way to communicate.  The school system was inadequate in the 1970s and 1980s.  She spent the rest of her schooling being shuffled to various schools or wherever she would fit. 

Once she reached 21 years a call was made from Helen’s classroom at Cleveland High School to my work place.  The instructor told me to leave my job and come get Helen that very day.  Helen was supposed to be trained for a program called “school to work.”  There was no such program in place for Helen.  She had no work and no job training.  Helen’s instructor seemed anxious for Helen to leave Cleveland.  I asked to use the phone in Helen’s classroom. 

I had passed a small care facility called Lambert House every day on my way to work.  It was located on 28th and Steele.  Helen’s instructor told me I was wasting my time but I made the call to the Lambert House and spoke to Mae Wallace who was in charge of the program.  The Lambert House cared for the elderly and those with dementia.  Once I explained Helen’s dilemma, Mae Wallace told me to bring Helen there and speak to her.  I was desperate for a place where Helen would be welcome.  Portland was kind in the 1980s and Mae Wallace was exceptional.  The Lambert House not only accepted Helen but also worked with me on a sliding fee scale. 

It was Mae Wallace who gave Helen a safe place to wait for her chance.  All of the staff at the Lambert House fell in love with Helen.  They let her help with other clients, taught her to play some simple board games and gave her much needed attention while I worked.  Once Helen finally secured a few hours of job training, I employed the Lift to transport her to and from the Lambert House.  The Lambert House then became a few morning hours of daycare and a few afternoon hours.

The ARC then had a program in Portland and their own bus.  On Saturdays she would go to the Easter Seals to swim because I was a member of the ARC.  Once the ARC lost funding here in Portland we lost a great support system.  The PASS program, Parents for Alternative Support, began.  The PASS program became Helen’s Saturday activity center and her after work training safe place.

In 2000 Legal Aid and a private attorney contacted me.  They said that four other families were suing the State of Oregon for services for their children.  Once Fairview closed its doors, those who were institutionalized needed funds for group homes and other services.  This left nothing for the children being cared for by parents.  Legal Aid asked if I would join them.  For years the families who kept their children at home were responsible for expenses without any help from county or state.  Now parents were aging and needed services that had been denied them.  Their disabled children were also approaching middle age.  I happily accepted the offer and joined the lawsuit.  This was not for the parents or our children directly, but for badly needed services.  It was to help all families with special needs.  With this funding, Helen finally had some clout.  Helen was 34 yeas old. 

Because of the devastating combination of being deaf with no communication skills and the Down Syndrome, I felt she was too vulnerable to go into a group setting.  The Tri-met lift transported her from home to a sheltered job site and from there to an activity center.  The Lift service and the drivers in those early days were very patient and kind to Helen and myself.  I could not have kept Helen without this service.  I was able to keep her active and safe while I worked at my own job.  She did well for the next several years.

The lawsuit changed the fees charged for special services.  It seemed that goodwill went by the wayside and services had dollar signs.  Mae Wallace was no longer and The Lambert House became the Volunteers of America.  Even the few hours that Helen was there were costly.  The ARC and the volunteers that offered respite hours were no longer.  No agency or person offered to help with Helen without substantial payment.  These payments were deducted from Helen’s lawsuit allowance. 

When Helen became compulsive, I could not take care of her without help.  I asked the county managing the lawsuit for financial help.  They would only offer Helen foster care.  Even the disability lawyer could not persuade the county or state for any financial help for Helen to remain in her own home.  They could provide a staff in a foster home to meet her needs, but could not help to keep her in her own home with her mother.  Helen was 47 years old.  She had never been out of her own home or away from her mother. 

Helen went into foster care.  There was no way to explain to her why she was away from everything she knew all of her life.  She proceeded to fall into a series of several different foster homes, hospital stays and a variety of drugs.  She never adjusted.  She stopped smiling and laughing and making her happy sounds that were her own language.  She seemed to just give up and to resign herself.  I knew I was the sun and moon in Helen’s life, as she was in mine.  When I visited her, she could not take her eyes off of my face.  I knew what she could not say out loud.  We never needed to speak.  He eyes begged me “Why?” and I had no answer. 

On December 2, 2020, at the age of 55, Helen left this world without the answers she needed.  I know she is happy in God’s arms, until we meet again. 

A memorial service will be planned for the Summer 2021.

 

From Helen’s brother, Christopher Healy:

Helen Healy was my sister. We had a complicated relationship.

I knew that she was different from an early age, and at my Catholic elementary school, when we would say “prayers for the faithful” with intentions for people we were praying for, I would pray that my little sister would “get well,” and everyone else did, too. I didn’t understand that her condition wasn’t temporary – that’s how she was, it’s WHO she was.

Looking back, the irony of this isn’t lost on me. There were people who thought my being gay was an illness, or a phase, that would pass – it wasn’t understood that it was just who I was, and it wasn’t going to change, and it wasn’t something to be ashamed of.

In the 60’s, if people had a mentally challenged member in their family, they thought it was a source of shame, and they hid or locked them away in institutions – even the royals and the Kennedys.

My Mom was a trailblazer in that she not only raised Helen and kept her at home all her life, but she did not hide her away. Helen was an “out and proud” Down Syndrome girl from the time she was born, and to make things even more complicated, she was deaf/mute. Nonetheless, she went everywhere we went. When people would stare, Mom would stare back. She wasn’t going to treat her like she was any different, or like there was “something wrong” with her. She was front and center.

Living with Helen was a challenge. While she shouldn’t have been a source of shame, she could be a source of embarrassment. Living the world that she did, she didn’t have the same boundaries. She would make noises in public, create disruptions. Once, when we were both young, we were at OMSI, and she removed all her clothes and I turned to see her walk around naked through the exhibits. Her Dad was mortified and didn’t know quite what to do.

What we learned from Helen was around patience, and understanding, and humility. I didn’t do so well with those things growing up. I was very self-conscious about having someone like her in my family; yet another thing that made me feel different. But looking back, she taught me so much about what it means to live in a world where you’re different from the majority. Because she had no filters, she didn’t care what anyone thought. She lived for the simple joys of what was right in front of her. Christmas lights, ice cream, finding a good chair. Little did we know that her priorities were right on.

Here’s hoping she’s gone to a place where it’s always Christmas.

 

From Helen’s sister, Eugena Schrepping:

In Utter Stillness

I have known her my whole life and yet I have never heard her voice. I tell her all the intricate details that I would never tell anyone, and yet she doesn’t say a word. She is constantly praised as being the “special one,” she upsets the world with her isolated innocence, and yet she is silent.

It is said that communication is the key to any relationship. What if that component is missing? Could I say I really understand her wants, wishes, and dreams if she has never related them to me? I can because I observe her. When she puts her hands to her face and wiggles here tentacle-like fingers, I can tell she is ecstatic. When her eyes grow wide and she looks up at me with an imploring gaze, I give in and share my confections with her. She is inquisitive; prying into affairs above her knowledge, and yet she asks no questions and makes no demands.

When she was only a child, she was not referred to so kindly. People would stare without bothering to notice how hurtful they were. She was labeled a “mongoloid” in the sixties, when doctors referred to her type as hopeless. No one wanted to give her a chance at living a “normal” life, and it was advised that she should be hidden away in an institution. The way she was treated, one would think that she was unsightly, and yet she is beautiful.

Her beauty is not only physical, but also in her naivete. She is unjaded by the faults of the world that surrounds her. Her raven colored hair is always pulled back in a tight ponytail revealing the adolescence she will never grow out of. Her natural beauty is not only remarkable to me, but to anyone that encounters her. Her almost translucent complexion always glows with tints of pink. The shape of her features are so delicate, they look as if they belong to a china doll. Her almond-shaped eyes crinkle with perplexity and excitement which allow me to interpret her moods. Her eyes show me she needs reaffirmation for her happiness: when she is proud of herself or simply delighted by her favorite treat, she wants it to be acknowledged and praised. I envy how easily she is amused. She will never fulfill the American ideal of a successful person, and yet she is content.

She relies on routine for guidance: she knows what day it is by what she did the day before. She makes connections between recycling day and church, even though she can’t count or know that her birthday is in August. She has no concept of time, and yet she is more punctual than I.

Her reliance on order and symmetry drives me crazy. She is always straightening the faucet, dumping the garbage, and covering our cupboards with junk mail. These are little chores which have to be done every day, ten times a day. It is hard to not get mad at her when my homework gets thrown away or she spills cat food on the floor, but I make concessions for her. Living with her has taught me to be more patient and forgiving. Sometimes she is forgotten when she excludes herself in a corner for hours at a time. My mother and I try to include her by letting her help in the kitchen or the yard, but often she is stubborn and we let her have her way. Since she cannot voice her opinions or frustrations, she is often alienated by her circumstances, and yet she manages to be the center of attention.

For her first eleven years, I was not there to protect her from scorn and ridicule. In the seventies, she was referred to as “retarded,” then “disabled,” and next “handicapped.” Not many people realized that all of these imposed negative connotations. When I was young, I did not realize that she was different, she was just my big sister. In fact, she was my protector. She trailed behind my diapered bottom wherever I went, making sure I wasn’t in danger. Then she became my playmate. I tried to show her how to catch a ball and color in the lines, but she was hopeless. Then I became her teacher. I wanted her to learn how to write more than just her name. She learned new words, wrote our phone number backwards, and I was so proud of her and myself that I wanted to try and teach her math, but we never got past one plus one. Some may think she is stupid, and yet she has faced odds that most couldn’t even imagine.

Once I turned twelve, things changed. I was embarrassed to be around her, even if my friends didn’t mind. I teased her and pretended not to notice her confusion and anguish. I turned my back on the only constant and unconditional love in my life. My innocence was lost and I became part of that world that alienates the ones that truly need the most patience and direction. It was a time in my life when I was worried about what other people thought of me. My self-consciousness caused my embarrassment, and yet she was the one who should have been ashamed for having a sister who would not hold her hand in public.

She will never understand why things changed that year, or tell me how much it hurt her. The times became fewer when she would try to take my hand when we walked down the street. She taught me to see I was not so different from her. Without uttering one word, she showed me that she valued our companionship and mutual trust like any other sister would. My embarrassment ended the day I was the one who felt anguished and confused. After that, I felt more at ease talking about my “mentally challenged” sister who was born deaf, mute, and with Down Syndrome, but I would rather tell you about her accomplishments than her handicaps. When she took my hand in hers again, it was a sign of forgiveness and companionship. She could not tell me how she felt, and yet Helen told me she had grown up.

 

From Helen’s brother, Patrick Schrepping:

Helen taught me more about true joy, sadness, and humanity than most anyone can try to understand. When she laughed and fluttered her hands under her chin, and would rock back and forth, it was pure elation. When she was sad, well the sounds that came from her were so sad they would shred my heart.

She loved us all, but she watched Gena and I grow up, and I could see in her eyes that she felt so much pride and love for us.

Her world was one without words, just her senses. She felt everything without a language to give it definition, which sounds to me like a much better, more pure way to live. I was proud to have grown up with her in my life. I love her, and will tell my son about her and her impact on me.

 

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