Emotional handicap

What do you do when your normally sweet, loving child wholeheartedly rejects his suddenly disabled, wheelchair-bound grandmother?


Diane Lore
August 26, 1999 8:00PM (UTC)

It was a summer Sunday night, hot and muggy, when my mother felt nauseous and suddenly collapsed to the floor in my parents' Ohio farmhouse. She managed to crawl to the phone to call my father, who was manning the city desk as part of his weekend rotation at the Columbus Dispatch.

My dad, always the brisk reporter, answered the phone in a clipped voice.

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"I need help," she pleaded.

Not recognizing the ragged voice, my father said, "Lady, you need to call 911 right away."

And then, my mom said, "David, it's me. It's Rosemary. Something's horribly wrong."

An ambulance was dispatched, a shooting star on a deserted country road. I got the call from my dad hours later: My 55-year-old mother had had a massive stroke -- but she was still alive.

I bundled my son, Ian, 2 at the time, in pajamas and blankets and we headed to the hospital, a three-hour trip from Akron, where I was a medical writer for the Beacon Journal.

None of us could comprehend the scope of what had happened. Shortly after the stroke, my mother turned to me and said, "I wake up every morning, and think, 'Oh God, I'm still in hell.'"

In a night, my mother, a teacher by trade, lost her independence and her former life. Partially paralyzed on her left side, she also lost motor skills, her balance and the melody of her voice. And she lost Ian, her only grandchild.

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Afraid of the new wheelchair, he no longer wanted to even greet her, ignoring her outstretched arms. "I don't like her," he said once at the door, turning his chubby face into my thigh and causing tears to well up in my mother's eyes. We saw the same reaction when my parents and Ian watched "Fly Away Home," a movie about a young girl who lost her mother and finds hope by teaching a flock of goslings how to migrate. Ian pointed to Igor, one of the goslings who's crippled. "Something's wrong with him," he said. "I don't like him."

"To back away from someone who is disabled is a completely normal behavior for a 3-year-old or a 4-year-old," I was told by Curtis Rodgers, vocational counselor and the peer support coordinator at Atlanta's Shepherd Center, a rehabilitative hospital. "They simply do not have the cognitive skills to process what has happened," said Rodgers, himself in a wheelchair for 18 years after a spinal cord injury. "They don't get what's happened to grandma. They don't understand why they can't do the things they used to do."

Intellectually, I was relieved. At least my child was normal. But emotionally, it wasn't much help. I still had a mom in pain, rejected by her grandson. And I still had a son who rebuffed any attempts to repair the relationship with his grandmother.

And, of course, all of us were still wishing that things were the way they were before my mother's stroke.

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When Ian was born in 1994, I could hear my mother gasp under her mask in the operating room when the doctor held up my blond newborn son. She later told me she was unprepared for the jolt to the past -- to 1963 when she was handed her own blonde baby, me. And when Ian was finally swaddled up, cute and clean and healthy, it was my mother who had the first bonding moment with him -- and insisted the nurse shoot a Polaroid of the three of us. (That was good, because, to be honest, they could have handed me, dosed up on meds, a kangaroo and I still would have cooed, "pretty baby.")

When Ian visited my parents throughout his babyhood, he would snuggle deep into my mom's lap, touch her coiffed light brown hair and kiss her smooth, soft cheeks. She, always the teacher, insisted on 8 p.m. bedtimes and that he master three new skills every time he was at her home. It was my mother who taught Ian how to drink out of a straw, blow bubbles and snap his fingers.

But after the stroke, she depended on a wheelchair and a walker. Their home, a rambling two-story Victorian packed with eclectic books and projects, was transformed. Steel grab bars were installed. My mom and dad abandoned their second-floor bedroom of more than two decades and moved into the downstairs guest bedroom. They removed the door to the bathroom because a wheelchair wouldn't fit. And as the weeks passed, and then the months, I watched Ian harden toward her.

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I was horrified, grief-stricken and angry. I started collecting picture books about disabled people so we could talk about his feelings. Surely, I thought, Ian could become the caring, compassionate 4-year-old he should be.

The Special Bonding Moment, which tidily crystallized in each of the books we read, never happened in real life. One night I felt quite proud of myself for finding a library book about a grandmother who takes her grandchild on fantastic trips. In the end, you learn the grandmother is in a wheelchair and is actually a storyteller who transports her granddaughter through the power of imagination. That, I thought, will really reach him.

I read the book aloud. I beamed at Ian. Ian looked at me.

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"So" he said, "they didn't actually go anywhere." Well, yes, I said, that's true. But see, the point is the grandmother might have been disabled, but that didn't limit where she could go in her mind.

"So" he said, "they didn't actually go anywhere." He sighed. "Can I watch 'Power Rangers'?" My troubled campaign continued when we moved to the deep South.

Every day on the way to Ian's new daycare in downtown Atlanta, we passed a homeless man in a wheelchair. Every day, I greeted the man, but Ian would look away or tug my hand, saying, "C'mon mom," urging me off. And one day, Ian told me that he and a group of other little boys made fun of a developmentally disabled little girl in their class. I did not appreciate his honesty. I went ballistic. He lost privileges. I told him he must do one nice thing for her because everyone needs friends.

That, too, went over big. The next day he announced in the class family circle -- proudly, I might add -- that he would do one nice thing for Jennifer (not her real name) because his mother said he had to.

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There was also an ugly scene at a mall, which started when Ian got mad and pushed my mother's chair from the back, causing it to roll without brakes. Needless to say, she was terrified. She grabbed his arm and told him to never, ever do that again. Ian became hysterical and started to cry. I came running over, clutching Diet Cokes and Happy Meals, trying to figure out amidst the tears and the hysterics what had happened. It was a sickening feeling -- I was upset at my mother for grabbing Ian's arm. Angry at Ian for being a snot. Mad as hell that I was having to deal with a stroke -- my strong, capable mother's stroke -- and everything that fell apart because of it.

But slowly, in the midst of all this sadness and disappointment, Ian and my mother started to reconcile, though I was too busy trying to change things by force to notice the shift at first. While I was still hanging on to my tolerance-through-storytelling campaign, my mother -- seeking a way to make the wheelchair less scary -- spent an afternoon with Ian decorating her chair with stickers. He gave her Jurassic Park finger puppets, which she placed on the ends of her brake extensions. Mom, the feminist known for her fondness for blazers and heels, now wheels everywhere with the help of a rubber triceratops and pachycephalosaurus.

A few months later, Ian showed my mother and me a picture he drew at his preschool that had a potato-head figure of everyone in his family -- except his grandmother. But he grabbed Mom's arm and said, "It's not that I don't love you. I just don't know how to draw a wheelchair."

He also started volunteering to open doors for my mother and other disabled folks. And one day, he walked over to the homeless guy, said "Good morning," and gave him his sticky breakfast gingerbread, still wrapped in plastic.

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Now, my mom and Ian occasionally take downhill rides in the wheelchair in the hall between the den and the dining room at her house, an entertainment provided by the sloping settled floors of century-old farmhouses. And both of them have discovered that my mother now has time. Time to spend with Ian. If there's a book to be read, a puzzle to be built, a bug to be studied, he will go to my mother for help.

"What we find is that children will make up their minds about disabled friends and family, but they reach their conclusions when they're ready," said Rodgers, who is also the father of a 9-year-old. "And really, there's no way to force a child to accept things until they're ready."

Things are still far from perfect between my mother and my son. For example, the distance from Ohio to Atlanta -- once just an annoyance -- is now a major problem. It takes Ian days to warm up to my mother. Right about when he does, it's time to leave. And recently, Ian refused to believe that the woman holding him as a baby in photos is the same woman who hugged him while clutching a walker. As we paged slowly through an album, I pointed out pictures of the two of them when he was a baby. "And there," I said, "is you and your Nami."

Ian shook his head. "No, that's not my Nami," he said, incredulous.

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But the pain for all three of us is lessening, as Ian grows up and learns more about the people who love him, my mother regains some of her lost skills, and I -- an admitted control freak -- realize that life works on its own agenda, not the one I set.

My mother might not be able to play ball with him, but she can still take him to a stage production of "Winnie the Pooh" and science-fiction conventions. She can search a field guide while he holds a magnifying glass on the bug of the day.

Arms are outstretched. Only now, it is an equal embrace.


Diane Lore

Diane Lore is a medical writer for the Atlanta Constitution. Her last article for Mothers Who Think was "The Men's Room."

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