Grateful for Lifeworks
March is Developmental Disabilities Awareness Month. It is a good time to consider disability, how it impacts individuals and families, and learn more. The sister of a person currently served by LifeWorks, who wished to remain anonymous, shares her family’s story here.
The LifeWorks Charitable Foundation is proud to provide support LifeWorks Community Services, whose mission is to provide opportunities for growth and achievement to individuals with disabilities including the two mentioned in this article.
It was the late 1950s in a small Midwestern city where most everyone knew each other. The young woman waited in line at the checkout counter of the bustling downtown department store. Standing beside her were her two youngest children, holding hands. “Nice looking little people” another shopper said with a smile.
Years later, the woman recalled this treasured memory. The happiest time of her life, she said, was when her kids were little. She loved them, and loved being their mom. It wasn’t because her role was always easy or without tribulation. It was because these children were hers, gifts from God, she would say. And I would know. You see, this woman was my mom.
She was a homemaker and full time mom, a tough job even under the best of circumstances, while Dad also worked hard to support the family. They were humble people of deep faith, and were the first to acknowledge that God was very good to them.
While growing up, my three older brothers and I lived an idyllic childhood in my opinion. We visited relatives, went on family vacations and fishing trips, played with the pets and celebrated holidays. Most blessed of all, we had parents who loved and cared for us.
Sadly, adolescence and adulthood for my oldest and youngest brothers, both of whom were disabled, was a different story. They would not assimilate into the neighborhood schools or join sports teams. They would not go through the rites of passage, like learning to drive or going on dates. They would never fly from the nest, marry and have their own families.
Those were different times back then. There were few options for disabled persons to reach their full potential, and enjoy what many may take for granted. Appallingly, a person who was intellectually disabled might be referred to as . . . I can’t even say it, the R word. The term originally described a condition, but then evolved into a word with a very ugly connotation. As for education, it was not uncommon for those with disabilities to attend a school separate from other, non-disabled students. Even worse, a child might be sent to live in a school far from their hometown and family.
It crushed my parents’ hearts when my oldest brother was sent away when he was just a boy in his early teens. I was a baby at the time. He would come home summers and have a good time, with my middle brother taking him places and our mom cooking all his favorite foods. Dad would take the whole family for rides in the car. But the longest ride was on the way back when my big brother cried inconsolably. He just could not understand why he could not live at home.
In between visits, Mom would make care packages to send to my brother. One Easter my mom sent him some chocolates and other goodies and then received a note several days later. Since she had not gotten her new glasses yet, she asked me to read the note to her. The staff member wrote that my brother received the package and enjoyed the candy. But, the note further said, he did not eat the jelly beans because he did not like them. My mother was quite upset. It wasn’t just about the jelly beans. She was heartbroken and lonely for her first-born child.
Later, my brother moved to the County Home, just a few short miles from our family home. Slowly his life began to get a little brighter. Our middle brother, in particular, visited him frequently. Once, our mother visited the place when a party was going for the residents. She caught a glimpse of him dancing with a girl. She ducked around the corner, not wishing to intrude on his good time, and watched him for a few moments. The simple sight of him being happy brought her so much joy. When the County Home closed, he moved to a local group home and also held a job at the sheltered workshop.
My youngest brother was fortunate to remain living at home although he did have a few hard knocks along the way. He did not learn to talk until he was eight. I imagine that it would be hard to learn at that age but he had a fierce determination to not give up when presented with a new task. He would say “Me do it!” This would serve him well throughout his life. He began attending a special school where he learned to read and write.
One night Mom and Dad came to pick me up after my confirmation class at church. They said nothing but were obviously distressed about something. “What’s wrong?” I asked.
“Your brother can’t go to school anymore” answered my dad in a quiet voice. Knowing this was a huge blow to my brother, I felt like I was punched in the stomach.
Without school, my brother really had lost his purpose. Everyone needs to be productive and find meaning in their lives. Then one day someone came to the house to talk to our parents about the possibility of my brother attending the sheltered workshop. He began his employment shortly thereafter and continued until his retirement nearly fifty years later!
By their very nature, Mom and Dad were not the type to tell others of their problems and ask for help. This was especially true of them talking to my middle brother and me about any extraordinary requests regarding our brothers’ care. They always wanted us to live our lives, too, and did not want to place burdens upon the two of us.
At some point, I finally asked the question that was in the back of my mind for years. “Mom, what will happen to my youngest brother when you and dad are no longer here?” With a deep sadness in her voice, she answered “He’ll have to live in a home.” There was nothing I could do to make it OK.
The passage of time brought the move of my oldest brother to a nursing home, the death of my middle brother, the old age of our parents. Mom developed Alzheimer’s and my dad and youngest brother cared for her at home. I went over there every day to help. The disease had robbed her memory but also provided a sort of peace for her as she forgot about the hardships, tragedies and worries. She was happy to love us and be with us. Her face lit up whenever she saw us.
Mom passed away at the age of 88. Soon after that, my youngest brother decided to move to a group home. He missed his mom, of course, but there was a quiet acceptance and a new start to his life. My dad was happy to see his son settled before he too passed away.
So now just two of us remain. My brother amazes me with his sweet, easy going personality. We have fun and travel. He is my friend. For him, life works!
Teresa Naughton is executive director of Lifeworks Community Services