That Went Well: Adventures in Caring for My Sister (6 page)

BOOK: That Went Well: Adventures in Caring for My Sister
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“Forgive? Forgive? What’s to forgive?” Lynne came into the living room and sat down with the rest of us, laughing. “What an amazing night.”

“What are you talking about, Lynne?”

“This is the first time anyone’s ever kidnapped me, or actually, the first time anyone’s ever even
noticed
me in the sorority. I’ve been like a transparent ghost for two years! And now we’re all friends, even the younger ones!” Lynne had always been about twenty IQ points above us all, and had felt separated out from normal, silly-girl socials. Now she was
in
! She was as happy as I’d ever seen her. I realized I was definitely in the wrong place.

I was still typing my resignation when the phone rang.

Over the crackling, scratchy connection, I could hear Paul, calling from Manila, in the Philippines.

“Hey,” he said, “I’ve got a shore billet. That means I live right here in Manila for two years. We could travel all over the Far East. How about marrying me right away?”

“How soon can you get here?” I asked, opening the drawer and getting out his engagement ring.

Paul came home in early January to pick up three things: two air conditioners and me. We were to be married in our living room on January 5, 1960. At the beginning of the wedding, just before I was to walk down the stairs, Gaylie Anne, one of my nine (!) bridesmaids, lost her contact lens. The wedding march was playing and she was on her hands and knees searching. We all got down on our hands and knees, trying to move the show along and find the lens. Irene got down with us, asking, “What we doing?”

“We’re looking for Gaylie Anne’s lens,” I told her. “It fell out of her eye.”

Irene cocked her head. She looked hard at Gaylie Anne. “Her eye is still there.”

“No, no honey. Her eye didn’t fall out. Just the…oh, never mind.” The wedding march played on. The father of the bride came up the stairs, saying, “Did you change your mind, Terrell? It’s okay if you did.”

We explained our problem. Dad went downstairs, and finally Gaylie Anne gave up and we all marched down, Gaylie Anne sort of feeling her way along the wall.

Irene loved being a bridesmaid and loved Paul. She wanted to catch my bouquet and stood at the ready. But she was upstaged
by Jeannie’s father, who told the group he was tired of supporting her, and presented her with a pair of Keds so she could run fast and beat everyone out for the bouquet. Everyone was laughing. When I went to throw it, he kept yelling, “Come on, Jeannie! You can do it! Catch the bouquet, Jeannie!” Jeannie grabbed it. Her father cheered. Then, laughing, Jeannie gave the bouquet to Irene.

Paul and I spent our first night at the Hotel Utah before taking off for San Francisco and the Philippines. When he carried me across the threshold of our hotel room, I gasped. “You’ve got to be kidding!”

“What? What’s wrong?” he asked.

“Paul, look! We’re in the Gene Autry Suite!” And on the table in the living room was a big basket of fruit, all wrapped in cellophane and tied with a red bow. I had made the big time.

Our two years in the Philippines, where Paul worked in the Military Sea Transportation Service, felt like a long honeymoon. I wrote for
Free World
magazine, sponsored by the U.S. Information Service. I taught English to diplomats from the Cuban and Argentinean embassies. We traveled to Hong Kong and Japan. We made lifelong friends in the navy. And at the end of our tour of duty, we came home through Thailand, India, Israel, Egypt, and Europe.

Just before Christmas, we arrived home in Salt Lake. Irene threw her arms around us and said, “Hello, my brother!” to Paul as she hugged him.

We found a little cottage in the Cottonwood area, and I became pregnant with my first baby, Katy, who was born the following Halloween.

Everyone in the family hovered around the baby, including Irene, who held her expertly, since she normally cradled a doll most days of her life.

When Katy was just three months old, the company Paul worked for opened a branch office in Denver and Paul was transferred there. I was sad to leave, and my family was sad to see their first grandchild go, but it was not forever.

Mom and Dad decided to build a new home, smaller, on one level. There would be a room for Bam and one for Irene. They found a lot high above the State Capitol Building, with a dazzling view of Salt Lake Valley. Mother got busy with her fabrics and floor plans, and Dad, who was thinking of retiring, looked forward to a new, quiet life working in his garden with his raspberries and tomatoes and taking some classes at the university. He would find somewhere for Irene to live as she got old enough to leave home. And all would be well.

I just love how we cling to hope and illusion.

Tilting at Windmills
 

P
arents of disabled children tackle little problems every hour—problems other parents just don’t have in their lives. But the biggie, the nagging worry that looms foremost in their subconscious, is, of course, how will my child cope when I’m gone?

For Dad, this came more and more into his conscious mind as he saw Bam aging, Mother’s arthritis worsening, and his own energy flagging.

One evening, while Paul and I were still living in Denver, Dad sat down and announced a plan to Mom and Bammy.

“I want us to take a trip to California, to a place called the Devereux School. It’s near Santa Barbara and overlooks the sea. It’s a residential school for young people like Irene. It looks very nice. Rosemary Kennedy, Jack Kennedy’s sister, lives at the one on the East Coast.”

“Send her away?” Mom asked plaintively. “It would be like sending a three-year-old away.”

“We spoil her, all of us. Bammy waits on her hand and foot. If
she knocks a vase over, Bammy cleans it up. She constantly interrupts people to get attention, and you force everyone to pay attention to her, and it ruins any hope of table conversation. Honey, we are crippling her chances of surviving in the world.”

“She won’t know what to do without us!”

“That’s right. And she’ll have to learn. That’s the whole point. It doesn’t have to be forever. Just until she learns some independence. We aren’t always going to be around to baby her. Devereux is expensive. I can afford it for at least five years, and maybe that’s all she’ll need. Or maybe she’ll love it there so much by then that she’ll want to stay, and then I’ll have to figure out if I can afford that.”

And so it was that Irene, at age twenty, went to the Devereux School near Santa Barbara, California. Despite the lovely campus by the sea, Mom was in mourning and worried. Bam was relieved, and Dad was relishing the freedom. All would be well at last. If only he could make enough money to care for Irene at Devereux for the rest of her life, this burden would be lifted from his—and our—shoulders.

Of course, if you want to make God laugh, the saying goes, tell him your plans.

 

 

NATURALLY, IRENE DID NOT
want to stay at Devereux. She had a roommate, which really disturbed her. “Mom, I like my privacy,” she said. None of us even knew that she knew the word “privacy.” But Dad was firm: Irene must learn more independence. A few years down the road, maybe she could have a place of her own back in her own hometown, but for now, this would be
good for her. The Devereux staff seemed professional, compassionate, and very dedicated to these young people. The campus was lovely and there were walking trails to the beach. The living quarters were clean and spacious. The program included talent shows, arts and crafts, dances and parties, and outings into Santa Barbara. You couldn’t ask for more. But of course it had been a terrible wrench saying good-bye to Irene and driving away as she waved good-bye, crying, from the front porch of her dorm, even though a staff member at Devereux had her arm around her.

Shortly after leaving Irene, Mom and Dad flew to Denver to be near us and get some solace. They reported all the events at Devereux. Paul and I told them they certainly deserved some time to themselves, and Irene really needed independence from this overindulgent family. We loved her, we protected her, we spoiled her. She was twenty. It was high time.

We had news for them, too: I was pregnant again. They were delighted, but so longing to be in the same city with their grandchildren.

Our second daughter was born in Denver six months later, four days before Christmas. We had to spend Christmas Day in the hospital because the baby’s big sister, Katy, two years older, had a horrible ear infection that week, and the pediatrician said we needed to give the baby a fighting chance at home and let Katy get over her ear infection. Bammy called Paul from Salt Lake. “I’m flying over right away. Meet me at the airport. We’ll tell Katy Christmas is two days later. She’ll never know the difference. I’m not going to have my baby Katy neglected while you take care of the little one.” Paul picked Bammy up and Katy flew into the arms of her great-grandmother, who immediately
cuddled her and started telling her stories. That night, Paul heard the creak of the rocking chair and Bammy’s voice once again singing “Red River Valley.”

They treated Christmas like any other day, and Bammy told Kate that Santa would be coming soon. Two days after Christmas, I brought home our new daughter, Marriott, which is Paul’s middle name. (His mother was sister to Bill and seven other Marriotts, but unfortunately we did not own any hotel stock!)

We made December 27 Christmas then, and Bammy fixed her wonderful Danish
ableskivers
for breakfast, running with butter and her homemade raspberry jam.

Back in Salt Lake, Irene was home for Christmas vacation with Mom and Dad. She got off the plane in her pretty traveling suit, looking pulled-together and radiantly happy, Mom told me on the phone. They had a fine visit together, and then it was time for Irene to get on the plane. Apparently her radiant happiness was because she was home. Returning to Devereux was another matter.

“No! I don’t like it there! I don’t want to go back,” Irene wailed. Mom started to cry. Dad was firm. “Yes, but you are going back, Irene. Remember how Terrell went to Stanford and had a bedroom there, and roommates and everything? This is
your
turn now.”

Dad, like all of us, continued to labor under the illusion that you can reason with Irene.

How they got her in the car and onto the plane, I’ll never know. I’m just thrilled I was nursing a new baby in Denver and Bammy was tending her big sister, far removed from Irene’s piteous cries not to be sent away again.

During our three years in Denver, Paul was away on business
for weeks at a time and I learned how to be a single mom. Again we made lifelong friends, this time with our neighbors, who took me under their wing in all sorts of ways. We had a German shepherd, who drove me so crazy I wrote a humor piece about him, just to get my frustration out. It was a habit I began to adopt when things went wrong in the house, or with the kids or with the car. If it drove us nuts, I found the humor in it and wrote it down. I kept a little file of pieces written when things were so bad there was nothing to do but laugh about it. Paul and I have shared that habit over the years. When we are at our wit’s end, one of us starts to shake with laughter.

Then, in 1966, Paul was called back to Salt Lake to work in the home office of the company. Mom and Dad were overjoyed. We found a lovely home on Third Avenue, one block from Paul’s childhood home.

When they told me who had owned the house at one time, I nearly fainted. It was the doctor who had delivered Irene, the one that Bammy had cursed so often for not being more helpful to Mom. “What ever happened to him?” I asked the realtor.

“Oh, it’s so sad. He is down at the state mental hospital. Been there for years. Just went insane and never got well.” I could hardly wait to tell Bammy. She would nod her head and quietly discuss divine justice.

I also wrote a piece about the horrors of moving and finally sent it, along with my piece about the dog, to one of our local papers, just to see if anyone was interested. To my surprise and joy, the features editor called back and said they wanted them. I asked how she felt about my doing one a week for them. She quickly responded: “Yes! Let’s do it! What would you like to call your column?”

I wanted to be free to write about anything, and so I stole a title of one Robert Benchley’s books, silently asking his late spirit to forgive me. I said, “Let’s call it
Of All Things.”
My first column appeared in the
Desert News
on June 7, 1967. Just as my column appeared in print, Dorothy Parker, Robert Benchley’s partner and girlfriend, died. I have no idea what any of it means, karmicly.

The column ran on Mondays for thirteen years, and in all that time, I didn’t mention Irene. I couldn’t get the right tone with her as a subject. The last thing I wanted to do was make fun of her, although I regularly made fun of my husband and children as well as myself. In fact, my family was hurt when they and their latest activities didn’t appear in the column.

When my first byline appeared in the paper, the folks in the Association for Retarded Children—ARC—remembered me from our family’s earlier work. They called me right up to ask my help in promoting still more programs for the mentally disabled. “We know Irene’s in California, but you never know when you might want her to come home again and be part of her hometown community,” they said. Knowing my parents’ commitment to this project, they just assumed I would pitch in and help. I felt as if I’d just had an offer I couldn’t refuse.

From the time we swept out the first day care center when I was twelve, I knew these families, and now their children were grown up and had nowhere to go during the day. Their parents were aging and worried. They certainly didn’t want to send these grown children to live in the state institution after all these years in the community.

What we needed was a sheltered workshop for adults, such as the Flame of Hope workshops that the Kennedys had founded a
few years before. We organized ourselves and researched the Salt Lake community for buildings no one wanted anymore. We found an elementary school that was being closed, and asked the school district if we could use it if we maintained it, and they agreed. For money for maintenance and staff, we asked foundations, individuals, the Junior League. We had a plan in mind: start the program, then get the school district to take it over. Why would they do that? Because in our plan we had in mind passing a law that guaranteed free public education to
all
Utah’s children, mentally disabled or not. But we kept that part quiet for now. First things first.

We opened Columbus Community Center, a sheltered workshop for teens and adults with mental disabilities, on June 6, 1968. As I drove to the center, I learned that Bobby Kennedy had died from the gunshot wound he had received the day before. Wiping my tears and blowing my nose, I arrived at the room where our first clients sat around a table, working on a craft. Two were in wheelchairs. I looked carefully at all of them, trying to see their leader. “Hello, guys!” I said to them in a high, patronizing voice you use for little children. “Are you having fun here?”

They looked up at me blankly.

“Where is your, um, supervisor?” I asked a very large young woman in a wheelchair.

“You’re looking at her,” she answered levelly.

She should have thrown something at me for being so stupid, but she just smiled and held out her hand and introduced herself. I apologized to her, and she waved it off. Then she introduced me to the first clients. They each shook my hand and smiled. This was a good sign. They were busy, they had someplace to go every day, and they would make new friends.

The man we had hired to run Columbus Community Center was Glenn Latham, who went on to become one of the best behavior modification specialists in the country. One of the first clients, Jerry Deming, was a thirty-five-year-old man who did not speak and was so hyperactive he tried to climb walls and curtains. Glenn found out from Jerry’s mom what Jerry loved most, which was Junior Mints. His mother took him into Glenn’s office, and Glenn watched him bouncing off walls. Glenn caught Jerry sitting still for one second and popped a Junior Mint in his mouth. Jerry jumped up, jubilant, and ran around the room again. Glenn waited. The moment Jerry got tired and sat down for a second, another mint was put into his mouth. This made Jerry experiment a little. He ran around the room once and sat down. He got a mint. He jumped from his chair and sat down again, fast, and got two mints. Chewing thoughtfully, he simply looked at Glenn and waited. Three more mints.

By the end of the day, Jerry had stopped running and climbing. That afternoon, when Mrs. Deming came to Glenn’s office to see which padded cell he’d had to leave Jerry in, she found Jerry sitting quietly in Glenn’s office, his legs crossed, reading a magazine. The magazine was upside down, but Jerry was totally quiet and calm.

It took Glenn Latham twelve minutes to change Jerry’s life. And no, Jerry didn’t overdose on Junior Mints. The intervals between bad behaviors became longer and longer, and eventually he switched to tokens, which could be exchanged for goodies from the Columbus “store.” Glenn went on to do the same thing with hundreds of others like Jerry.

What we learned from Glenn Latham was this: Catch people
doing something right, reward them, and you will have them in the palm of your hand.

I brought that little trick home with me. When Paul helped me clear the table, I said, “Thank you so much, honey. That really helps.” He did it more often.

My daughter Marriott was four at the time and wanted to be go ice skating with me. I really love to skate, but my idea of skating is flying along to good music. Marriott’s idea was that I would hold her up under both arms so she would feel safe, thereby almost breaking my back.

Thanks to my behavior modification training, I went to the snack bar and bought a small bag of M&M’s. I took Mare out on the ice and told her to just stand there. Frowning and fussing, she did. We just stood there for a minute, then one of Marriott’s feet moved just slightly forward. “Hey! Did you see that? Look what you did! How did you
do
that?” I said, popping an M&M into her mouth. She thought for a moment. Then her other foot moved maybe three inches. Another M&M went in her mouth. “Yes! Yes!”

I waited. She looked at me. Then she tentatively, purposefully, moved her first foot forward, got a reward, and then brought the other foot along, and was again rewarded, all the while getting lavish praise from me.

She was doing a little skating shuffle all around the rink by herself, and I was able to skate with a pain-free back.

Within six months, Marriott could do little twizzles on the ice, and she was always the best skater at her friends’ skating parties. Her teeth were rotting, but, boy, could she skate!

BOOK: That Went Well: Adventures in Caring for My Sister
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