Posts tagged ‘cleft palate’

“God Don’t Make Junk”

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This used to be my mom’s favorite saying. She believed it all of her life, but never as much as she did after the birth of my brother, Curtis. When she was pregnant with him, she was unknowingly exposed to German Measles, thus affecting him with Rubella Syndrome.

Curtis was unfortunate to acquire all of the accompanying diagnosis; he had a severe hearing impairment, congenital heart disease, an intellectual disability, an odd head shape (like a smooshed pear,) a cleft lip and palate, autism and was legally blind with crossed eyes that wiggled back and forth. (Additionally, when he was a teen, he developed schizophrenia, but that’s for another story…)

Because I was only 4 when he was born, I thought he was the cutest thing in the world! He was my BROTHER, after all. I delighted in feeding him formula through an eye dropper, trying to quell his kitten like hunger cries. I loved to rock him in the rocking chair, all bundled up and warm. He was a delight to me!

Curtis’s life in our family was as amazing as mine. Loving, adventurous, interesting, and accepting. Anywhere we went, I would explain to quizzical stares that he was born like that and he might look different, but inside he was the same as everyone else. In fact, he had an amazing sense of humor and would laugh at anything! He loved to eat peaches and watch Sesame Street. As I extoled my brother’s virtues, I could see their stares soften with understanding and acceptance.

The “gawking” role was reversed when I was a parent, and this moment is etched into my mind. Francis and I were at the zoo. He must have been about four years old because I remember pushing his sister, Dinora, in a stroller. Nearing a pen of vastly ugly pigs snorting mud, Francis exclaimed, “Look, mom! One of the animals got out of the cage.” I looked over and saw a horrified mother with a toddler in a stroller. A disfigured toddler, with a gaping mouth like Curtis used to have. And the child was snorting bubbles and drool. Taken aback and horrified by what Francis said, I took his hand and we walked over to the stroller. I smiled at the mom and told her what beautiful eyes her child had! I asked her if it would be okay if we touched him, and Francis and I leaned over and gently rubbed the child’s chubby little hands, which opened and closed in excitement. “He really seems to be enjoying the zoo!” I said, as we parted, smiling knowing little smiles at each other.

I then took Francis aside and explained that God makes all types of children, and “God don’t make junk!” His observational comment¬†was an innocent one, (especially because he is legally blind,) but it provided an opportunity for a¬†valuable lesson.

Every mother wants to be proud of her child, and to have others share in her positive feelings. Every child is a joy! Imagine yourself in the mother of a disabled child’s shoes. Have empathy for that mom. Join in her admiration of her child, and maybe you will also internalize the concept that “God don’t make junk!”

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For more stories about Curtis’ childhood and our adventurous family, 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

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

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