Inspiring Tales of Caring for Children With Disabilities

The Surprising Connection Between Adult Diapers and Field Corn

I have two inspiring stories to tell about caring for children with disabilities. They illuminate a level of caring I want you to witness.

Uncle Earl

I spent a lot of time with my mom’s parents while growing up. They provided after-school and summer daycare for my sister and me. At one point, my parents would pick us up at Gramma/Grampa’s and head home for dinner and an evening at home. At bedtime, we went back to our grandparents’ home to sleep, have breakfast, and head off to school, about a block away.

My uncle also lived in that household. He and I shared a bed upstairs in an unheated bedroom. A chamber pot accompanied us so we didn’t have to go down the stairs in the dark (and cold) of night.

Thanks to Vintage Willow Wares on eBay for the picture.

Most of the time, Uncle Earl stayed with Grampa. Whatever Grampa did, he did. If Grampa was tilling the garden, Earl tilled. If weeding needed to be done, they both weeded. In the winter, they shared a wood-burning pot-bellied stove in the garage. The tasks never stopped just because of winter, either. For example, feed corn for the chickens was strung in the rafters. At the appropriate time, the corn came down and was shucked, and the kernels were shelled off the cob and stored.

When I was in elementary school, Earl was an after-school playmate, particularly in the winter. Checkers, dominoes, and solitaire occupied our time. Eventually I came to realize that my Uncle Earl was not only a playmate but he was mentally disabled. Early on, I knew there was something different about him, but only caught on when I started school and Earl couldn’t keep up. He couldn’t read, for example.

I just knew he was loved and cared for by his parents. That was what was done in those days? I think. Clinical facilities were not called on; you took care of your own. After Grandpa passed, Uncle Earl stayed with my grandmother until she could no longer care for herself. At that time, my mother was working full time and could not care for her brother.

Earl was taken in by the Luther Home of Mercy (lutherhome.org). He had his own room, got to help with tending the garden, and made friends. During that time, I was off finishing college, getting married, and starting my own family and career. I did not get to visit Earl often, but from what I saw and what Earl told me, he thrived there. He seemed proud of his new home. He gladly gave me a tour of the farm, apartment, dining room, and more. Earl died at age 62 (1921 – 1983).

Uncle Ronnie

The second story originates in my wife’s family. I was a brand-new son-in-law to the family in 1966 and was busy learning all the ins and outs of a different set of people not to mention family traditions and practices. My wife and I became visitors to her grandmother’s home for Sunday dinner. This dinner always took place there. Sometimes we were the only visitors; other family members might appear as well. There was a good reason these family gatherings were always held at Grandma’s.

One day, I asked about a room that always had a closed door. “That’s Ronnie’s room.” I never saw the inside of the room or the occupant. Being curious, I found out that Ronnie had a high fever at age one and was brain-damaged in the process. Severely brain-damaged. His mental ability never improved from that time forward.

My wife explained that Ronnie’s room was much like a cradle. It had a padded floor so Ronnie could crawl, as he never learned to walk. Ronnie wore an adult diaper, which had to be changed as an infant’s might. He never potty trained. There came a point in Ronnie’s life when my wife’s grandparents could not care for her uncle. They could no longer safely lift him and get him in and out of the bathtub or bed. Ronnie was a grown man and much too heavy for them. Like my uncle, Ronnie was moved to a facility where he could be cared for and died at age 34 (1935 – 1969).

Can you imagine caring for an infant for 34 years?

These stories have similarities.

1. There was no question that these infants should or would be cared for.

2. The family was the first choice as caregivers. I don’t know if there were facilities available or not.

3. The family’s life together was modified to accommodate the needs of the child.

4. Eventually, home-based caregiving paths had to be abandoned. Both moved to an institutional model.

Would the next generation have stepped up to the plate? In my case my mom did. She added an apartment to her house. Gramma and Earl lived there until Gramma could no longer care for herself. It was then that Gramma was moved to a nursing home and Earl to the Luther home. My Mom followed the model her parents set; she cared for her mother and brother as long as she could.

What about this generation? I am not privy to caregiving choices parents go through these days. I don’t know what would have happened if either boy had been born in my generation. What if either boy were born into your family?

I’m glad we didn’t have to decide. Put your story in the comments below.

Ed Zinkiewicz

Your Aging-in-Life Strategist

Check out this video about my upcoming course: Honor Thy Father and Mother as They Age.

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