by Dorothy Hoff

I can still feel the blow to my chest," said Marie Richard, in response to learning that her son’s child, her granddaughter, had been born with Down Syndrome. I had the opportunity to talk with that grandmother. In fact, I’ve had the opportunity to talk with quite a few grandmothers in the course of writing this article for HarcToday. What an interesting and rewarding experience this has been for me. I learned so much and came to admire so many. Marie was not alone in her initial shock as she learned that she was the grandparent of a child with the disability of mental retardation. "I was startled, I was surprised! I thought, I am supposed to be strong, I am the Mother. Then I broke down and cried my heart out." Other grandparents described their first reactions as "horrified," "heartbroken," and "hysterical disbelief."

One of the grandmothers responded to her son’s news with, "I know this is not what you are looking for, but we have a big family. We will welcome the baby and we promise you that we will do everything we can to help." She told me that she thought it had been harder for her husband. While he accepted the baby, he felt very badly about the disability. When he talked about it tears would roll down his cheek.

All the grandparents that I spoke with were very involved with the families of their sons and daughters. Many of them heard the news very quickly. Sometimes they were present at the information session when the parents learned that there was a problem with the child. Not all the grandparents heard the news immediately, of course. "We didn’t hear until the next day that my first grandson was born with Down Syndrome. My husband was fabulous! We took a bottle of champagne into the hospital to celebrate the birth of that baby."

It was after that first reaction that all the grandparents began to worry about their own children. "What would happen to my kids? How would they feel?" "How would Peter and Donna handle the situation, and what would happen to their older daughter who was three?" The one thing that eased this grandmother’s mind was the fact that mothers of children with Down Syndrome were already visiting her daughter-in-law in the hospital before she even took the baby home. No matter at what point or how soon the grandparents learned the terrifying news, it was their son or daughter who was their greatest concern. "Having a family which includes a child with disabilities is a ‘hard row to hoe’ - a difficult road for the parents." stated one of the grandmothers. One set of grandparents visited the minister who had counseled the parents of their baby grandchild. They were much relieved to hear the minister say that while many couples broke apart when faced with such an extreme problem, he felt their son and his wife would move closer together. "It’s so hard to see your son cry. You wish so deeply that you could carry the burden for him."

Both sets of grandparents were involved when K. was diagnosed with Wolfe’s Syndrome, a very rare condition. Children’s Hospital in Boston had a record of 500 reported cases in the world. The prognosis was that K. would live for about one year. The longest that a child had lived with Wolfe’s Syndrome was twelve years. K. is now twenty-one. The hardship that Wolfe’s Syndrome has caused K. was, according to her grandmother, "drastic." K. is non-verbal, and non-ambulatory. "That’s what’s wrong for K.," says her grandmother, Sally Bowley. "What’s right is that she is very responsive. She smiles and throws her arms out to you." The first five years of K.’s life, Mrs. Bowley prayed for her "to be taken." When K. was five Grandma Sally visited K.’s family who was living in California. It was then that she saw the wonderful things happening in that family, and she realized that a crisis could make or break a family. Luckily, her son’s family had made it. She no longer prayed for K. to die — "and" as she says, "the blessing continues to live."

Al and Edith Levie’s daughter, Ann, who is single, adopted a three year old girl from Nicaragua. She was malnourished and had some disabilities at the time of the adoption. She needed special care. The search for a label to describe her problems lasted seven years. She has recently been diagnosed as having mental retardation. She is now eleven. Her grandmother describes her as capable, and "she has a thirst for knowledge." Mrs. Levie’s greatest worry was for her daughter, Ann, whom she felt had undertaken a tremendous burden. Her granddaughter can be difficult and oppositional. Praising her daughter, Edith Levie says, "Ann is patient. She knows how to help her daughter who has little inner discipline. She uses behavior modification effectively. Ann has it down pat; she could give lectures on the subject." Mrs. Levie feels comfortable now; Ann has started to live her life. It used to be only work and her daughter. "Now," says Mrs. Levie, " there’s light at the end of the tunnel. HARC is providing services and support for Ann that are so wonderful - Saturday programs, camping trips, care and understanding. Before they knew HARC Ann felt so alone. Whenever a meaningful service is provided to a child and a family, the grandparents benefit. Spirits are lifted, hope becomes real."

Usually the grandparents know little or nothing at all about mental retardation at the time of their grandchild’s birth. Often they had seen someone with a disability in the community, at some time during their lives, perhaps at church or school. Mrs. V. said that she had only general knowledge, although when she was in college a baby sister with Down Syndrome was born. The child lived only a short while, and so she had never known her. During the years when she was a Social Studies teacher, Mrs. B. had "an educable class" as it was called at the time, which she loved. So she had known people with mild retardation. She also had come in contact with a child who she had helped with patterning, when that was in vogue, but she did not know anyone with the degree of disability that her granddaughter was experiencing. Mrs. S.’s question was, "What does one do?" Mrs. T., on the other hand, had many years of experience volunteering with the Cerebral Palsy Association. Even so she was not prepared for facing the problem in her own family when her grandson was diagnosed with that disability. "I don’t think you ever are," she said.

"You were a teacher, " I said to Margie F. "Did you know anything about Down Syndrome?" When the answer was "no" I asked how she learned about it. "I read," she replied. I’m sure that she researched and gathered all the information that she could; but in the end, she found that the best learning experience for her was taught by the child, himself! Kevin, her grandson, is fourteen and she is very proud of him. He’s in a pre-vocational program at school, he plays games on the computer and TV (chasing all those little men around!), he swims like a fish, is part of Special Olympics (track and field), goes camping, and loves hiking and miniature golf. He has even tried hitting real golf balls (his grandmother is a golfer!). One time when the extended family was on a camping trip, Kevin spoke to the woman in the next tent. "My name is Kevin. What’s your name?" Then Kevin proceeded to introduce his new friend to his mother, father, grandparents, sister, and cousins. "He’s very social." said his Grandma.

When asked if the grandparents shared the news of the disability with family and friends, they all said yes. I heard comments like, "I didn’t call my friends on the telephone, but when I saw them I told them," and "I wrote my family that we had a wonderful grandson who happened to have Down Syndrome." Olga W. shared the news of her grandson’s disability at her work-place. Her co-workers formed a support system for her. "I don’t know what I would have done if I had not been working!" she said. Great-grandparents, if they were well enough to understand the situation, were "helpful," "supportive," "strong." A great-grandmother of ninety-seven was described as capable of "rising to any occasion." Not every family member, however, was able to rise to the occasion. Mrs. D. reported that her sister was "uncomfortable" with the thought of her grandchild’s disability. She had never seen the child, and really didn’t want to.

These grandparents, all of whom were closely connected with their children, continued to stay in touch, sometimes forming a very intimate relationship with the grandchild. A grandma reported, "Benjamin is very close to his grandfather. He is crazy about him! Grandpa is very good with young children. When Benjamin comes to visit he has to check out Grandpa’s whereabouts before he does anything else!" Dotty C.’s thirteen year old grandson telephones her every morning before he goes to school to discuss the daily events, what clothes they are wearing, and what she had for breakfast. Even those grandparents who lived a distance away found ways of contributing, although they said, "We wish we were closer." Two of the out-of-town grandmothers to whom I spoke were actively participating in fund-raising events to benefit the school or organization which served their grandchild. "We feel it is important to have support from the extended family - with everyone striving to help my grandson be all that he can be."

As time passed on, the worry which the grandparents felt for their own child shifted, though not completely, to concern for the future of their grandchild. Would the child’s condition continue to improve or would the health of the child deteriorate? "Who will take care of her later?" "Will people recognize his problems?" "Will the School Board approve transportation costs for my grandson to go to the school of choice?" The grandmother of a one child asks, "Will she be hurt because she can understand that she’s different?" "Will there be group homes if she needs one later, or the opportunity for independent housing if it’s suitable?" "Will he be accepted by his peers when he’s a teenager?" The grandmother whose grandchild was predicted to die in infancy was now worrying about how her granddaughter would adjust to adult living as she moved into an adult group home.

Woven into the pattern of worry was the concern for the siblings of the special child. Glowing praise for the sisters and brothers was volunteered by many of the grandparents. They recognized the loving, caring qualities of the siblings, but none of the grandparents wanted these grandchildren to "carry unusual burdens." To help, "yes." To care, "yes." To be there, "yes." But not to carry unusual burdens.

With the coming of the child into the family, grandparents’ perceptions of disabilities changed, sometimes because of the successes of the child, sometimes from seeing growth within the family or from witnessing the caring qualities of the siblings. Even perceptions of influences outside the family changed. One woman was pleasantly surprised at how a support system came into being as soon as her grandson was identified, and another grandparent said, "There is so much hope for them now. A young man with disabilities can do anything - no fears - no limitations."

Through all of this exposure, life experiences for the grandparents had changed and growth had taken place. "I am more tolerant," concluded a grandmother as she continued to struggle with the problem, "You are familiar with it, so you go out of your way to help people with disabilities, but," she added firmly, " you never get used to it." Another grandma said, "Now I look with a different eye at a young person with a disability. I see a person there, not just a disability. A per-son, like everyone else." Another contributed that she had learned sign language, and that her "patience quotient" had been expanded! Mrs. S. who takes care of her little grandson four days a week informed me that she had taken a course in computers so that she could introduce the computer world to her grandson. "I had never touched a computer before!"

Mrs. R. whose son has a daughter with Down Syndrome, and whose daughter has a son who has Down Syndrome, summed up her feelings with, "Every time I see, read, or hear of someone who has adversity come into their life unexpectedly, I say to myself, ‘God be with them, give them the courage to go on, for new doors will open. They will be able to smile again.’"

Dorothy Hoff