Betty Sparrow’s son Pat is the youngest of her five children, fourteen years younger than his next older sister. Betty says that when Pat was born, the family recognized that he was different right away, but their doctor didn’t mention anything about it until a pediatrician came and made the diagnosis. From that day on, Betty took on the responsibility of learning to cope with Pat’s disability and helping him to live a full and happy life. Betty says that Pat was “unplanned but always wanted. It worked out OK.”
Either you can accept it or you can’t accept it. When Pat was born, there was another handicapped baby born at the same time and the mother flatly refused to take him home.
As a young child, and especially in school, Pat was always the “different” kid. There were a lot of kids with learning disabilities in school, but because Pat had Down Syndrome, he was the only obvious one. “We didn’t have any trouble with the kids, it was some of the adults that we had trouble with, who grew up in the old school, where kids like Pat were put away or hidden”.
Pat lived at home with his family in Hay River, NWT. There was no support at the time for families of the disabled. There were a lot of nurses in the area but no one who had worked specifically with children with Down Syndrome. Options for parents were to keep the children at home or send them away to Edmonton to live in a home care situation. The Sparrows were not prepared to do that, so Betty decided to see what the government could offer. “When you want something bad enough, you work at it.”
The need for services was recognized by the government and, because there were a number of children who could benefit from it, a program was set up in which parents were trained to work in the schools with the kids. They used to drive 150 miles per day to attend the three month course. Many of the parents became teachers’ aides.
Pat was enrolled in the local playschool and then went on to Kindergarten. Betty worked in the same school but was not Pat’s aide there. She remembers how hard it was to ignore situations where Pat was being reprimanded. She used to walk by and pretend she didn’t see him. The school kids were good to Pat and protected him.
Pat progressed through “levels” in the school and attended age appropriate classrooms with an aide at all times. His favourite subjects were Phys Ed and Music. The teachers were inclined to be strict with the disabled kids so that there was no perceived difference in the discipline for all students.
One parent in the community organized a meeting to determine whether or not Pat should be allowed to attend the school. The idea was quickly shelved, as the overwhelming response from the community was that Pat had as much right to schooling as everyone else.
Betty is now eighty years old and one of her worries is that Pat might come home some day and not be able to get in the house if she has fallen ill or had an accident. “In the middle of winter, would he stand there and freeze?” Pat knows to call 911 or his sister, but the hope is that he will not have to deal with a situation like that.
Betty doesn’t think children with Down Syndrome are given credit for what they can do. She remembers Pat’s reaction on the day the family dog died. He came home and found Betty crying. He said, “Mom, sit down” and proceeded to make her a cup of coffee. He had never even boiled a kettle before. “He must have put about six spoons of coffee in the cup, but we didn’t know he could do that.”
Because Pat’s care was so demanding, Betty found it hard to find the time to get out to meetings over the years. “You learn in your own way. We had to make our own support. We found other families through school and other programs such as PARDS (Peace Area Riding for the Disabled).”
Betty’s life has been devoted to Pat’s care. Since having Pat in her forties, her lifestyle has been very different from that of her peers. Betty has had to adapt to Pat’s rigid schedule and, basically, her time is his.
You wonder what your life would have been if you didn’t have him and we can’t imagine not having him. But I guess I was lucky that he’s no problem.
Betty has had trouble getting life insurance. A lot of companies will not insure a person with Down Syndrome. “If they only knew that some of them are better looked after than many other people.”