2,500 postcards. I figure that was how many postcards my dad sent to my brother Ken from the late ’50s until 2008, when my dad died. It’s a guess, but what I do know is that he sent Ken a card once a week for as long as he could, and Ken kept the bulk of them. My brother and I had to go through Ken’s possessions because he had passed away in June and I came across the box that had cards from the last 25 years. It hit me how much Dad thought of Ken and tried to keep connected to him even though he handed him over to a state institution when Ken was 5 years old.
Ken was born in 1950 with Down syndrome, six years before me. While he has always been a part of my life, he had a separate life that my family and I didn’t know. His family was important to him and we made an effort to see him, including him in holidays and traveling with him to Oregon to see my parents once they moved back there in 1986. But being with his family was a small part of his life; the rest of time he was in the care of the state.
I never lived in the same house with Ken. By the time I came along in 1956, he had been in Fairview State Hospital in Salem, Oregon, for about a year. That’s what families did back then. Even though my father was an advocate for Ken all his life and founded the Oregon chapter of the Association for Retarded Children, he did what the doctors told him to do and my mother went along with it.
What would it have been like?
I have been thinking about Ken a lot since his death. The other night I had a flash of insight as to what it must have been like for my parents to hand over Ken to Fairview, which was originally known as “The State Institution for the Feeble-Minded.” In my imagination, I saw my parents walking up to the big, brick institution with Ken in hand, signing him in and then walking away. Did they turn around to see a bewildered child looking back at them? Maybe Dad went alone while Mom stayed home with her toddler son. What was that last night at home with Ken like? The last time that their first-born son lived with them?
I see Ken sitting on a hospital bed in a large room with many other children and wondering what was happening to him; did he wonder where his family went? Would they come back for him? The hospital was not far from my parents’ home, so maybe he came over often. I have a number of photos of Ken with my brother Howie, who is three years younger, and he always looks happy. But what was he like when he wasn’t with his family? And how often did he visit what had been, but was no longer, his home?
That time must have been heart wrenching for my parents. I can only imagine, but I do know how it affected them both as they moved on in life with four more children. Dad wrote postcards on a regular basis that he hoped someone would read to Ken. Mom seemed to push aside all thoughts of her son.
When I was old enough to notice, I saw her relationship with Ken as distant and cold. Perhaps that is too harsh, and what would I have done under the same circumstance? I choose to believe it was the only way she could manage the loss. She raised her other children and was active in the community, but not on issues regarding the disabled.
We moved to Montana in 1959. Ken came a year later, once my parents had established state residency, to Boulder State Hospital, about 155 miles from where we lived in Missoula. I do remember that place, a dark, forbidding-looking Victorian building in the middle of nowhere. There were hot springs in Boulder, and we would spend the weekend with Ken at the Ranch Hotel. Ken was happy to be with us and very unhappy to go back. I have a memory of waiting in the car while my dad went into the office with Ken and Ken slipping away to get back in our car. He was on heavy doses of barbiturates, supposedly for epilepsy, but really it was probably just to keep him docile and manageable.
Better services in Minnesota
When my dad accepted a position at the University of Minnesota in 1966, it was not only for his career advancement but also because Minnesota would have much better services for Ken. Even so, when Ken moved to Minnesota in 1967, it was still to a state hospital — this time in Cambridge, about an hour away from where we lived. My memory of Ken in the late ’60s is a bit clearer. I do remember that once he moved out of Cambridge and to Greenbrier Home in St. Paul, we would tease him about going back to Cambridge or, worse yet, Boulder. That would illicit the anticipated scared reaction from Ken — my God, looking back, how cruel we kids were!
After deinstitutionalization, life improved greatly for Ken. He moved from Greenbrier to a group home, where he established a full life and a strong community. He worked full time, took public transit everywhere, won awards in the Special Olympics, had a loving relationship with his girlfriend, Dixie, for over 30 years, and was much loved and cared for by his group home manager, Deb Thyen, for 27 years.
Deb tells me that she understood Ken perfectly — something I cannot claim, as I wasn’t around him enough to build an understanding of his garbled speech. I do believe that if Ken had been born 30 years later, he would have had the education needed to manage language and skills we all take for granted. He had endless enthusiasm for holidays, was a superb artist and loved family gatherings and trips to theme parks. He was always the life of the party. My siblings and I said Ken had no worries and that he was better off than the rest of us … and that is true, at least for the last 45 years of his life. And, most important, he always knew his father loved him and would never forget him.
Laura Merriam, a retired corporate executive, lives in St. Paul.
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