That Went Well: Adventures in Caring for My Sister (4 page)

L
etter to the Editor,
Salt Lake Tribune
, September 1952

I am a parent of a mentally retarded girl, six years old. I plan to keep her at home, but I want her to learn as much as she is capable of learning. I find there are no programs for her in the Salt Lake Valley. If you are a parent with a similar problem, and would like to form a group to begin a day care center, please call me at 35644.

Richmond T. Harris

 

Most days that first September of junior high, I would come home from school to a babysitter tending Irene, as Mom and Bam were often off to their lunch and bridge games. The phone would be ringing off the hook.

“Hello? Is this the home of Mr. Harris?”

“Yes,” I would answer, pulling out the big pad of paper where I was keeping names and phone numbers.

“My child is mentally retarded. I have never said this to anyone before.” Then the sobbing would begin. I would wait until it subsided, and then I would say, “My dad wants me to take down your name and phone number, and he’ll call you back tonight. They’re going to have a meeting. He wants you to come.”

“Oh, bless you, my child. Thank God someone had the courage to put it out there in the paper!”

By the time my father called the meeting, he had fifty names.

They met at the State Capitol Building. When they finished telling their stories to each other, they cried, they laughed, and they hugged each other in the relief of finding others in the same boat. They resolved to pool their money, find some space to rent, hire a teacher, and open a day care center. They organized into the Salt Lake County Association for Retarded Children. Within a few weeks, they had rented a small, rundown, vacant clubhouse on the grounds of Fairmont Park. On Saturday mornings, everyone pitched in to clean it up, paint it, and get it ready for their children. All the families helped, including brothers and sisters. I remember sweeping the floor while Dad measured spaces for worktables. Mothers and sisters washed the windows. Irene and the other children who would attend the center played outside in the park.

We didn’t know that simultaneously, all over the country, day care centers were being created by other parents of children with mental disabilities. In fact, other states had a two-year jump on us. In 1950, forty people from thirteen states, all of them veterans of opening day care centers in their own towns, had already met in Minneapolis and formed the National Association for Retarded Children. They felt that it was time to “stop agonizing and start organizing.” What they accomplished is the stuff of legend.

If Irene would never read, so be it; but my parents would never give up helping her to be the best that she could be. And at last, she had somewhere to go every day, as other children did. She could meet new friends and learn new skills. She would have a happy life in the community.

Thanks but No Thanks

Okay, here’s one: A man goes to get a taxicab, and he sees this poor heavy woman struggling in the door of the cab. She is so obese that she is stuck, with her back out the door. He puts his hand on her back to help her, and with all his strength he finally succeeds in getting her into the cab, whereupon she turns around, reaches out the window, and hits him with her purse.

“But madam,” he says, “I was trying to help you get in!”

“In!” she yells. “I was trying to get out!”

And this is how it was with advocacy for mentally handicapped kids. Even with all Dad’s efforts to get things going for these children, a lot of them didn’t want to leave the house after all. Irene was one of the homebodies. Life was good at home. Our mother and grandmother waited on her, giving her constant attention. What was not to like? To show us how much she wanted to stay home, she threw tantrums. Down-on-the-floor, screaming, legs-kicking tantrums.

Every morning, Mom and Bammy would wrestle Irene into her clothes as she yelled that she didn’t want to go. Then they would bundle her into the car, and Dad would drive her to the day care center while she screamed, kicked the windshield, and socked her own face until her nose bled. He tried everything:
threats, bribery, spanking, you name it. Didn’t work. It took all he had every morning to get her to go in the door of the center. It was only after she was inside and realized Dad was leaving and she was there for the day that she gave up and calmed down.

I didn’t have to go through this horror every morning. I had my own horror: adolescence. Hello twelve, hello thirteen, hello boys, hello boobs, hello pimples. Also hello being taller than every boy in the whole world of seventh grade. Our mothers, in an effort to help us all out, enrolled many of us in the neighborhood in Arthur Murray dance classes, held once a month at the Center for the Blind. There we learned the art of the box step, tentatively holding on to each other, not daring to look each other in the eye. We stared fixedly at our feet as we box-stepped around the room. It was a good thing that we all looked down. If the boy stared straight ahead, he would be looking at my breasts, which would have embarrassed him as much as me. My chest was bigger than most of my friends’, and I despised it.

My spirits picked up when they taught us how to do the swing. Our parents called it the jitterbug, and were delighted that we were learning it. Slow, slow, quick-quick, slow. By spring several of the boys started to get taller, and were actually looking more at my throat now. This encouraged me no end.

When we had dances at school or the local Mormon ward, I was invited by various boys from the dancing class. The trouble was, any boy who came to my house as a prospective date got to meet my sister. When they walked in the door, Irene would usually be right there, asking them, “Hi, where’s your mommy? Wanna talk to my doll?” I was too young to have a sense of humor about it. That came later. At this stage, as with pimples and periods, I chose to close my eyes and get through the experience
as quickly as possible, and the boy and I would be out the door and on our way. We just didn’t discuss Irene. I was far too insecure.

The only thing that got me through junior high was athletics: first, competitive swimming; then, ice skating. I lived in the swimming pool of the Deseret Gymnasium for about three years, becoming intermountain breaststroke champion at age fourteen. Then I fell madly in love with ice skating. I took the bus to the rink every day after school and skated until Dad picked me up around six o’clock. When I became truly addicted to it, Dad even got up at five in the morning to get me to the rink so I could skate for two hours before school. I had met another friend, Lynne, who skated with me; her mother picked us up after we skated, cooked us breakfast, and drove us to school, where we yawned our way through classes for three more years.

Irene took lessons, too, and learned to both swim and skate, which surprised us all. Her swimming stroke was a dog paddle. On the ice, she didn’t want to jump and spin as I did, but she loved her private lessons each week, made it around the rink and learned to skate backward a little bit. She was very proud of it, as were we.

Looking back on my years of living at swimming pools or ice rinks, I suppose a psychologist would say, “Well, you were escaping your home situation with your sister,” but that’s not how it felt at all. I was truly in love with the sports. “Well, then,” says my imaginary shrink, “you were overcompensating for your sister, trying to be so outstanding for your parents, to make up for her lack of abilities.”

Could be, I guess. But if that’s true, it was surely lost on them. I would come home from a swim meet, driven by another of the
swim team’s parents, and Mom and Dad would be playing bridge with friends. “Hey, guys, I won the hundred-meter breaststroke in both age divisions,” I’d say, putting my trophies on the card table for all to admire. “Honey, that’s wonderful!” my parents would say, and then hand me back the trophies because it was on the dummy’s hand and they needed to get on with their game. They never saw me swim in a race. It was a far cry from today’s overly eager parents at swim meets.

As to skating, one morning on the way to the rink, Dad said, “Listen, hon. I’ve been thinking. Your swimming used to cost me maybe fifty dollars a year. Add thirty more for the six swimsuits you went through each year. Your skating costs me that almost every week! I have a great idea: go back to the pool! Or, here’s an idea: let’s think up a new sport—deep breathing! Completely without cost to fathers! What do you say, huh?”

I told him that soon I would have a driver’s license and maybe that would help matters. “And you expect to borrow the one car we have?”

“I can drive Irene to her tutoring lessons, think of that.”

He looked over at me. “You’re going to go far in this world, you know that?”

Meanwhile, Mom was busy trying to get Irene integrated into neighborhood life as well as being in a special school. She became a Brownie leader for a troop of little girls that included Irene. She also taught primary, the Mormon youth group for elementary school children. Irene was a model student in both situations. It was the little boys who gave Mom trouble. One little kid named Peter was causing so many problems while they were constructing Indian teepees that Mom started to cry, startling Peter into dead silence. Rising to her full height, Mom sniffed into her
hanky and said, “Peter, you just take your teepee and go home!” It became a family saying for whenever we were at our wit’s end with someone.

By the time I got my driver’s license, Irene had settled down somewhat on the tantrums in the car, at least when I drove her to her reading tutors in the afternoon. My parents never, ever gave up on trying to get her to read and write. We must have had twenty different tutors who gave it their all. To this day, Irene will pass a home or apartment building, point to it, and say, “’Member I went there for reading lessons?” I had completely forgotten, but not Irene.

It never worked. Irene can write her name in very large letters, the way you do in kindergarten, but that’s all. She reads her name on an envelope, but the rest is a mystery to her. She does, however, recognize symbols and icons from advertising. “There’s Clover Club potato chip’s truck! There’s my Winder milkman!” They were all Dad’s clients, and he worked hard to get their name everywhere.

His brilliant work in the advertising business was paying well. All his life, Dad had wanted to travel, but he could never afford it until now. He and Mom had gone to Hawaii with friends in 1950, and though it rained every day, they came home aglow with the travel bug. Now they wanted to go to Europe. Unbelievably to me as I look back on it now, they didn’t consider just the two of them going: of course they would take the whole family, including Bammy. It would be an education for us all.

Can you picture floating along a canal in Venice in the moonlight, the gondolier serenading you? Your arm is around your dear wife, and across from you is your mother-in-law? And behind her are your two daughters, the little one in glasses wailing
because she thinks the gondola is going to tip over? Apparently my father could.

Bammy didn’t much like Europe. When we landed at Orly Airport in Paris, she asked why we had to stand in line with our luggage. “They need to see our passports and make sure we’re safe tourists,” Dad told her.

“Well, just tell them we’re Americans and they’ll let us right on through,” Bammy assured him. Only seven years earlier, Americans had liberated their country from the Germans, and she expected royal treatment.

Then there was the language. “What are those people saying about us?” she asked suspiciously as the nasal sounds of French wafted around the airport. “The little snips. They just do that to annoy us,” she said.

When we checked into the Hôtel Napoléon, she saw her first bidet. “What’s that for?”

“To wash your bottom,” Mom told us all.

Bammy regarded it with narrowed eyes. “Don’t these people have toilet paper?”

When she tried their toilet paper, which at that time felt like sandpaper, she knew she’d had enough of the whole continent. “Well, that’s enough now. Let’s all go home.”

“Bam, we haven’t even unpacked. Now let’s do that and go have a lovely dinner in a little bistro near here.”

When she tasted their beef bourguignon, she muttered, “It’s just beef stew, only mine is better.”

On the plane to England, I made friends with a lovely older gentleman named Mr. Bristowe. He insisted on taking us all to dinner and showing us around London. At dinner, he peered at us all over his rimless glasses and told us how much he admired
our country. I looked over at Irene sitting next to him. She had slipped her glasses down on her nose and was looking at us over them, in the same manner as Mr. Bristowe. My father was afraid Mr. Bristowe would think Irene was making fun of him, but he laughed, patted her head, and made sure she ordered the best pudding for dessert.

When it came, it was cake. “This is cake, not pudding,” Bammy said.

“Yes, madame. That is what you call dessert and we call pudding. All our desserts are puddings.”

Bammy frowned at him, but didn’t say anything until we got back to the hotel. Putting on her nightgown, she muttered, “Pudding. For heaven’s sakes. No one speaks English over here.”

At Buckingham Palace, Irene went up to one of the guards, who was standing totally immobile, staring straight ahead. Irene stood very close to him and peered up at him. No response. She touched his bright red coat and stared up at his beaver fur hat. She had seen this before at home, under our Christmas tree. A nutcracker! When I approached her to tell her to come along, she was chatting happily at the silent, staring guard. She beamed at me. “This is a dolly?” she asked. She was trying to hold his hand. His mouth twitched, but he kept looking straight ahead.

Bammy insisted on using the iron she brought along because no family member of hers was going to dinner looking wrinkled. She put two different old inns in Ireland completely in the dark for several hours by plugging our iron into their sockets. When she was told our plugs would not work in their wall sockets, she simply huffed, and said, “Well, they should,” and went right on with her task. When the second outage occurred, Dad was reading his guidebook by lamplight. Suddenly plunged into the
dark, he swore and said to Mom, “Bam’s ironing again.” This time his phone rang, and it was Bammy from our room, whispering. “Dick! Did I do that?”