Kevin was born on August 19, 1969 in Windsor, Ontario. He was 6 weeks premature and developed seizures at an early age. He was very active and inquisitive. His behaviours caused him to move from program to program within several local schools. He was labelled as having organic brain syndrome, one of several labels over his young life. I tried integrated daycares and he was too needy there. I believed in integration right from the get go but integrated classrooms at the elementary level did not have any support for the classroom teacher. Kevin’s teachers were willing to teach him but classroom aides were necessary but not available back then. We have come a long way but supports were lacking back in the 70’s.
As a teenager, Kevin went to a vocational school. There was very little support for the teachers and his correct diagnosis was not yet known. He was bullied but no real support was given to him. In July 1986, without proper supports for or understanding of his disability, Kevin was sent to SRC.
At SRC, Kevin was subjected to 4 point restraints and Noctec injections ( a.k.a. Chloral Hydrate, a sedative and hypnotic medication) for behavioural issues. Placement in a “quiet – time out room” was also used. The 4 point restraint put Kevin in a very vulnerable position and with the help of an SRC manager: I was able to stop this intrusive procedure. The NOCTEC was administered quite often as seen in his charts.
Kevin’s life was very chaotic and unreal. We brought him home every weekend. Sometimes they took this privilege away if Kevin had a bad week. Kevin was very athletic and qualified for Special Olympics in swimming, bowling and track and field. The privilege of attending Nationals was taken away if behaviours were bad or no staffing was available. Kevin’s possessions were lost or stolen. Life was unreal in this environment.
I worked very hard to get Kevin back into the community. I was able to form relationships with some staff who agreed with me but the majority believed in the institution. I was once shown a ward where the residents were severely disabled and lived in a room with plastic furniture, spent hours in cribs and were naked. I even saw a resident who was naked and faced against a wall being hosed with water. I knew that Kevin had to get out of there! Kevin became sadder and sadder and we hated to have to bring him back after his home visits. I am sure that the institution was glad to see him go too.
Three other parents (moms) from our community with children with special needs, and the Executive Director from Community Living Essex County met around our kitchen table to design a home for our sons and daughters. Kevin and another lady were at SRC and we wanted them home in the community. MCSS listened to our request and provided funding to build and provide programming in the home. The home had 8 bedrooms so we were able to support folks from the community who needed 24 hour support.
The home was divided into 2 sides with 4 bedrooms, a kitchen and living room on each side. This residential home was not the most suitable living arrangement but it got him out of the institution! He was finally given the diagnosis of Aspergers Syndrome as an adult. This helped staff to better support him and find suitable living arrangements. Not having the proper diagnosis when he was young led to severe trauma growing up. Lacking the proper understanding of his diagnosis and the tools to support him, Kevin led a very sad and chaotic life. Our family was also in crisis trying to find the right supports for our son.
Kevin now lives alone in a townhouse in our community. He has a special friend who visits with him every Friday. Support workers from Community Living Essex County assist him to prepare meals, go shopping and attend community events. Kevin lives within walking distance to our home and so we can visit often. As Kevin is autistic, we are readily available to help him understand the “greys” in life as he sees everything as “black and white”.
I have been a very involved parent. I have met and spoken to mom’s who were told to put their children in the facility, go home and forget that they existed. As the children were put away as babies, many did not ever meet their siblings. Many siblings never knew that they had brothers or sisters. With deinstitutionalization, many siblings met for the first time. In many instances that was 40 years later! Moms experienced guilt and never forgot their loved ones. They existed in their heart forever. This was the mentality of the day and parents did not argue with their doctors.
In the 1980’s, the integration movement was starting and I did not believe in segregation so I fought very hard to close the institutions. Today we are seeing folks transitioning very well from SRC to their home community. Some have lived in a facility for 40 years or more. As a member of the Board of Directors at CLEC, I saw firsthand families being reunited and sons and daughters doing very well with the transition. Many residents had their teeth pulled out, were declared incompetent and were abused. It is amazing that they survived to enjoy a new life in the community.
I am very glad that Kevin is living with support in his community and that the institutions are closed. Kevin gets very sad talking about his time at SRC. I still feel guilty that he had to be there but there were no other choices at home in our community. I would never want to go back to that dreadful time.
Kevin wrote a story that he typed up and presented to Dr. Charles Pascal, the deputy minister of CSS. Kevin’s thoughts on the use of a cattle prod at SRC helped to change the use of this invasive behavioural technique on individuals at institutions. (read Kevin's story here)