Posts tagged ‘Rubella syndrome’

We’ve Come a Long Way, Baby!

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(warning: contains disturbing, graphic content)

My brother was born in the 1960s at a time when children with disabilities as extensive as my brother’s (Rubella Syndrome, cleft palate, severely developmentally delayed, legally blind, hearing impaired, heart condition, etc.) were placed in institutions at the “suggestion” of their doctors. Without knowing the specifics, all I knew was that my mother was devastated and took to her bed sobbing, my father very angry and was rarely home, and my brother cried all of the time because he could not eat through the gaping hole which was supposed to be his mouth.

My mom chose not to follow the doctor’s “orders”, which was highly unusual for her because she was a person who NEVER disobeyed authorities. Yet, she knew in her broken, sad heart that “putting him away” was not the right thing to do. Even if her life was changed forever, Curtis would remain at home. She slowly got over her devastation, and my father was home more often and Curtis was fed with an eye dropper. I loved feeing him as he gently gurgled and mewed like a baby kitten. My brother was a part of our family, and went on to live a full and exciting life as a member of our vagabond family.

My dad loved to drive and my brother loved to ride. He especially LOVED tunnels. Dad would go out of his way during our travels to go through them, such as the toll tunnels in Pennsylvania. Riding through the darkness, hearing the swoosh of the engine motor and the echoes of the other cars would send my brother into fits of giggles. Curtis also loved the excitement of paying tolls. Hand over hand, I would help him lean out the passenger window to drop the coins into the basket, and he’d clap his hands with delight. Life was great, and Curtis was always a full, participating member of our family and our community. Our life was “normal” to me.

It wasn’t until I went for my first job interview as a rehabilitation professional at a state institution that I learned what my brother’s fate would have been had my mom decided to do as her doctor advised. The first and LAST ward I toured scarred me for life. The “dorm” was rows, 20 deep, of metal beds bracketed to the floor. Most had some semblance of a sheet on them, some not. “Blankets”, or what USED to be blankets before they became worn and dirty,were randomly thrown on the bed. Many were stained with a dark brown substance that I assumed was NOT dirt. In the “kitchen”, rows of large baby bottles filled with a mushy substance substituted for a lunch.

It wasn’t until I went into the “day room” that I became physically ill. The smell of vomit, feces and urine attacked my nose so I wanted to hold my breath. In the large, tile room, with no windows to even indicate it was day outside, sat about twenty-five people, looking more like wild creatures. All ages, men and women, young and old, sat and rocked their bodies, flailed about and screeched. Hair dirty and tangled and disgusting. Eyes either glaringly wild or no emotion at all. Most naked or with minimal clothing. There was a large drain in the middle of the floor where human waste congregated; feces, vomit, urine. (Apparently, a large hose was used to “clean” individuals and it was all shoved into the middle of the floor, hopefully to go down the drain.) No attempt at programming. No attempt at socialization. No furniture because, I was told, they would either throw it, break it or try to eat it. Most of the residents, I was told had never see life outside of the institution, coming to the institution as infants. (Thoughts of my beloved brother flashed through my mind.)

It was obvious abuse was rampart on the part of the residents, swatting and clawing at each other as I stood there. A few residents, deemed the most violent, were in shackles. The two ward attendants were obviously immune to the sight because that would be the only way possible for a human being to do their job.

I left the tour, vomited and cried all the way home. The scene still haunts me.

FORTUNATELY, this was during a time when family members and professionals started to come together in outrage to demand better treatment. To demand actual services and activities and better living situations. FORTUNATELY, these groups sued the state to hold them accountable for these horrendous living situations.

The passage of even more legislation allowed four unrelated individuals to live together in a house without having to get zoning variance. Group homes were born and life changed forever for individuals with developmental disabilities!

Thank God that the pendulum has swung the other way. Now, individuals with developmental disabilities are recognized to be individuals of equal value and respect. They can choose their own clothing, what they want to eat, where they want to go, and what they want to do. You can see them out bowling, delivering Meals on Wheels, and eating at local restaurants. They are shopping for food at the grocery stores, attending churches of their choosing, and going on cruises. They can go rock climbing, paragliding, and ice fishing. They can order sandwiches just the way they like them, and drink frozen strawberry Daiquiris. They are living life to the fullest, with staff no longer concerned with cleanliness, but with focusing on dignity, free will and respect. Next time you see a person with a developmental disability in the community, smile at them. They will probably smile back, at last!

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To read more about my life with my brother, please read my book. Here is a link:

https://itunes.apple.com/us/book/the-apple-tree/id538572206?mt=11

The Apple Tree: Raising 5 Kids With Disabilities and Remaining Sane

Angels Among Us

First blogged January, 2010

My mother passed away several months ago and it has taken me this long to write about it.  She was the most wonderful mother in the whole world, (and I am not just saying that because that is what one is expected to say about their deceased mother.)  In addition to being kind and loving, she was also very spiritual.

I remember when I was four years old and we lived in Opalaka, Florida, right behind the Hialeah Race Track.  We had a cement swimming pool in the backyard which my father built, and next to it was a palm tree my mother had planted crooked so it was growing sideways.  I had a green parakeet whose name I certainly don’t remember, and I loved watching Howdy Doody and Captain Kangaroo on our little black and white tv with the rabbit ears antenna.  My brother was born one day in March, and life suddenly changed for our family.  My brother was born with serious disabilities due to Rubella Syndrome, (supposedly my mother had been exposed to someone with German Measles.)  With a cleft palate, he could not nurse or drink from a bottle, so he was fed by a large eye dropper. He could not such on a pacifier and he cried constantly.  He was blind and deaf and was obviously going to be severely developmentally delayed. My joyful childhood was suddenly overshadowed by a sadness of which I had never seen from my mother.  I would witness her throw herself across her bed and sob. A deep sadness enveloped our family. I looked at my little brother, who looked so innocent and little to cause such a fuss.

One day, when the sun was shining brightly and Curtis was asleep, my mother called to me to come sit in the rocking chair with her.  She squeezed me and held onto me tightly, rocking  and crying.  It was a different kind of crying, though.  A happy cry, if I could describe it as such.  From that day on, the gloom lifted from our house and I went back to living my happy childhood with my new baby brother.

Many years later, when I was a young teenager, my mother shared her experience of what happened to her that very day.  The doctors had been encouraging her to put my brother “away”, institutionalize him as was the custom in those days. “Forget about him,” they said, “You can have another child.”  She could not bear to make the thought of doing this.  Then, on that sunny day while rocking in her chair, she told me she was visited by an Angel, a beautiful, bright white Angel.  She told me she could feel the weight of the Angel’s hand on her shoulder, reassuring her that everything was going to be okay.  Although the Angel did not speak, she knew what the message was.  She did not have to worry anymore, her son would be fine, and he was.  He wasn’t fine in that he suddenly became perfectly healthy, but he was fine in that he has led a happy, fulfilling life. Clearly, she had been touched by something spiritual on that day to turn her torrents of tears into smiles of joy over her new baby.

Several years later, while camping high in the mountains, my mother woke up from her sleep and sat up in her sleeping bag.  She was joyous!  She told me she had been to see God, whom she described as a bright and beautiful. She said it felt real, not like a dream at all.  She was confused as to the experience because it seemed as though she was there to help a friend pass over into heaven.  She did not understand because of course her friend was healthy.  It was not until we returned home from vacation that she learned that this friend had died from a brain aneurysm on that very night at that very time.

My mother lived a life of  great happiness and contentment, always seeing the good in people.  Near the end, right before she died, I stayed with her 24 hours a day.  When we knew death was near, the nurses let me lie in bed with her and she passed away in my arms.  I don’t know what I expected when she died.  No…that’s not true…I expected to see some of what she had experienced!  I expected to see her pass into heaven!  I expected there to be some reaction from her body, some knowledge that her lifetime of spirituality would somehow, through osmosis, pass through to me.  But there was nothing.  She just stopped breathing. And there was nothing.

It took me a while to accept her death, and I became angry that there was no sign from God that she was with him.  Realistically I knew this was silly, but I was hugely disappointed.

Christmas time came soon afterwards.  As the parent of 5 children, I had this habit when the children were younger of taking a picture of their sleeping faces on Christmas eve.  As they aged, they hated the existence of these pictures!  (They were usually sucking on a “binky” at the time and girlfriends and boyfriends who saw the pictures in old photo albums would always go “Awwwwwwwwwwww, how CUTE,” the most mortifying thing that could happen to a teenage macho boy!)  This Christmas eve, filled with nostalgia, emptiness and sadness,  I again went into each of their bedrooms and gazed at their sleeping faces.  I was suddenly filled with a great sense of purpose and contentment, much like the type of contentment my mother might have felt when she felt the Angel’s hand upon her shoulder.  These were MY Angels.  These were my children who had endured so much when younger, either with their disabilities or with indescribable child abuse. They have not only survived, but they have THRIVED.  They are happy and loving and successful and they have bright futures as adults.  This is miraculous to me!

My Brother Says Goodbye…

I took my brother who is developmentally delayed, legally blind, autistic, profoundly deaf and schizophrenic to visit our mom for the last time before she passes away.  I was worried about how it would go.  We walked into her room and she lay in bed.  She seemed to perk up a little when she was told Curtis, her beloved son, was there to visit with her.  She didn’t perk up enough to open her eyes, but she did start to talk, albeit mostly nonsense.  Curtis held her hand and rubbed her back.  He was talking to her, and because he could not hear, he did not realize that she was not really talking to him.  He was talking about himself, of course.  Was there a restaurant around the nursing home where I could take him to eat?  Did they have pie?  He then went and got her a soda from the soda machine and opened it for her.  Soda is Curtis’ most prized item.  He gave it to her, saying he wanted to do his best to make her last days better.  He then told her she was lucky because she had the pleasure of his visit because he was good company and he rubbed her back.  After an hour or so, I had him say good bye.  Not being a demonstrative person, he did not know how to hug.  I felt it was important for him to hug her and kiss her good bye, so I helped position him so they could hug.  It would have been laughable under any other circumstances.  He was stiff like a robot and clearly was not comfortable showing affection.  So he took her hand and shook it, and said “It has been nice to know you.  Let me know when your funeral is because I might want to attend!”

On the way home, Curtis was quiet for a while.  He said “Something has been missing all week and I didn’t know what it was.  Now I do.  I was afraid I would miss saying good- bye to my mother.  Today I was able to give her a soda and rub her back,” (2 things she had always done for him when he was sick.)   “I feel better now.”  This was such a profound statement coming from someone who usually did not think rationally.  Of course, true to his character, he asked to stop for pie.

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