Mother of Glenn Hilhorst
When Glenn was born he was removed with forceps, the cord had wrapped around his neck and strangled him, and the incubator he was in lost oxygen. His brain was swollen and they were intending to place a shunt but on the 5th day his brain swelling subsided. We were told by our doctors that Glenn would be normal. As we had newly immigrated to Canada, we had to pay for all of our medical bills, which totalled $8-9,000. The doctors later decided that a brain scan was needed, and Glenn had one when he was 10 months old. They said that Glenn was fine but sent him to be seen by a specialist. The specialist informed my husband Bill and I that Glenn was a “typical vegetable”. Unfortunately, we received this news 1 day after Glenn’s 1st birthday. The government only covered costs up to 1 year and, therefore, they would not cover our costs. We spoke with our local MP and, with his assistance, all of our medical debt was forgiven.
Glenn needed full assistance in his care and, for his first 8 years, lived at home. After going away to respite care for a short visit, we noticed how much work it was to care for Glenn. He was becoming heavier and Bill was noticing the strain on his back from lifting Glenn. When Glenn was 8 years old, Bill needed surgery on his back and decided that Glenn would go to live at Rideau Regional Centre. It was several months before we could go to visit him because there was a hepatitis outbreak at the facility. We were happy with the care he was receiving. We were pleased that, while Glenn lived at RRC, he had learned to feed himself, to wheel his own wheelchair, and had become timed toilet trained.
Glenn was the oldest of 4 children. We took the other children to visit Glenn every week for 2 years. The children did not enjoy going there. They complained of the smells, and the structure of the building. After a while, they didn’t want to go so we didn’t take them as often.
Whenever we would take Glenn out in public, we seemed to receive a lot of negative attention. If Glenn was not kept in motion, he would scream. People would stare at us and some would even sign the cross across their bodies. I think these people believed that Glenn was cursed. Bill was also worried about the impact on our other children, with too much time spent on Glenn and not on them.
Glenn lived at RRC until the age of 14. I was always happy with the physical care Glenn received at RRC. Although they promised that Glenn would go to school, he did not qualify. He remained on the ward, where he slept and spent time in his large crib. Glenn also enjoyed swimming, and he seemed very happy there. Glenn lived on a ward with 24 others up to the age of 16. The children always spent a lot of time outside in the courtyard. I don’t know what his other activities were. I do, however, believe that all of his Individual Program Plans were false, and that none of them were ever followed through. When the class-action lawsuit occurred, I did not want to be involved against the people and organization who cared for my child. I never read or signed any of the reports or supporting documents. The only time I was ever aware of any harm to Glenn was when he had a burn on his arm. I was told that he was laid down with his arm accidentally pressing against a radiator heater. I was given a verbal apology, with which I was satisfied.
At the age of 14, Glenn was moved to an institution that had opened up a ward for children with severe developmental disabilities. I was happy that he was closer to home. Glenn lived on a ward with 10-12 children per room. He slept in a big crib, as a bed with rails was too dangerous because he could slide between them. Glenn was always happy there. They were family oriented and I was always welcome to stop by, which I did several times each week. Glenn enjoyed a good lifestyle and was always treated well. We were very happy with the care he received there. He would go for a lot of walks, swimming at the YMCA, and attended Merrywood Camp.
After 2 years at this institution, Glenn was a part of the movement to move children into homes within the community. He moved to a private home on Collingwood Dr. The home was eventually taken over by Community Living Kingston and District. At this home, Glenn had a good friend named Julie. They both moved to a home on Patrick St. where they could live as a couple. Unfortunately, we felt it was not a suitable situation as they were bored and had no stimulation or interaction with others. After a year-long struggle with the agency, they moved to another home on Portsmouth Ave. Julie developed health concerns and had to move to yet another home. Glenn moved 5 times until he finally settled into his current home.
Glenn developed health issues because of pain from a deteriorating hip. He had surgery to have his hip removed. He also developed other severe issues with his health after he broke his shoulder from an accident at another institutions' pool. He developed poor digestion and lost a lot of weight. His healing was very slow, and he was choking a lot. He was in the hospital for weeks, yet the doctor kept holding off on putting in a GI tube. I knew a cardiologist, who offered to take a look at Glenn. He was appalled that our specialist had not yet done anything and within 2 days Glenn had a GI tube. He recovered and was fine. This was a very difficult time, as Glenn’s father wanted to let him die. Bill claimed he himself had no quality of life because of Glenn, even to the point of not being able to remarry after our divorce. We both feel that our other children might not have received the attention they should have because we attended to Glenn.
Sometimes, I regret not going along with Bill because I don’t think Glenn is happy any more. He has no goals. I was unhappy with a day program Glenn was attending because he was often left in a dark room, soaked in his own urine.
Glenn now goes out to his program every morning. He goes out every Wednesday to pick up paper for shredding. He goes swimming and to concerts, hockey games, and wrestling events. He likes listening to live music and he goes bowling every Monday. I feel that his disability is getting worse and, as a result, his life is very boring.
I live with a lot of guilt for putting Glenn into the institutions in the first place. I feel that his life has not been better living in the community and that he was at his best when he lived at the institution.
If I had one message I could share with people, it would be with staff. I would tell staff to put down their cell phones and laptops, skip the paperwork, and don’t forget the human touch, the human interest. Take care of people first, not paperwork.