541 Days Road, Kingston, ON K7M3R8, CA
My daughter, Nicola, was not quite 5 years old when she went to live at Rideau Regional Centre in Smiths Falls.
When we came to terms with the fact that Nickie was having difficulty meeting her infant milestones she was assessed by a paediatrician at the hospital in England where she was born. We were told that Nickie would never walk or talk, and we should put her in an institution, walk away, forget about her and have another baby.
After coming to live in Canada Nickie slowly progressed physically, not only did she walk but many times she was able to outrun her siblings. However, by the age of four, life at home was becoming a serious challenge in finding time to meet Nickie's needs while also supporting her sister and brother in their social and school lives.
On the advice of our family doctor, we were persuaded to apply for a vacation relief admission to Rideau Regional Centre for Nickie, to give us the opportunity of taking a family vacation visiting Expo67 in Montreal and family in the United States. On our return, we reluctantly began to accept that a permanent move was becoming necessary for the good of all members of our family and after a special Christmas at home we made the trip to move Nickie to RRC.
When Nickie went to live at RRC we were told that we could not visit her for 3 months. This was to be her adjustment period to living there, and to allow time for an in depth assessment. During this time there was a Hepatitis B outbreak at the institution, and 3 months turned into 6. In the meantime, Nickie had been put on many medications. When we finally went to visit her and she was brought out to see the family, I barely recognized her. We said later that it almost seemed as if she had suffered a chemical lobotomy.
After her settling in period at Rideau, Nickie seemed content. She lived with 30 other young females. They slept in beds that were lined up on a ward. Nickie was always clean and well dressed whenever I would visit.
However, her personal belongings frequently disappeared. Toys, her camera, and her radio all vanished, and I got the message that that’s how things would be and nothing could be done to prevent it.
The information I received from Rideau was full of gaps. They were not very forthcoming with any information about Nickie. I felt nervous about approaching staff and was almost made to feel that I had no right to ask about her.
When Nickie was little, she learned to spit from great distance, which she liked to demonstrate to her brother and sister during family outings. This became a lifetime habit that would get her into trouble for years to come.
In 1973, at the age of 10, Nickie moved to the wards in the Craig building at Prince Edward Heights in Picton. After Rideau, I thought this was like Disneyland, it was so wonderful. Staff were open and friendly. It was more like a home than Rideau. I could visit regularly, but was asked to give advance notice to the ward supervisor. My phone calls to check in on Nickie were courteously answered. Nickie slept better as there were only 4 people sharing one bedroom. Daytime activities provided so much to do.
Nicky’s medications were reduced initially but Nickie was often a handful when she became a teenager. Psychiatrists from Queen’s University came to the Heights to hold clinics and once again Nickie was heavily medicated. Nickie's relationship with one Psychologist was so heated I gave direction that she should no longer be under his care.
Staff needed to be reminded frequently that Nickie listened to and understood everything that was said, both in the clinics and on the wards. She would often repeat what she heard to demonstrate this.
When Nickie was age 11 or 12, I was called by the ward Supervisor and told Nickie had been involved in an accident and that I should attend a meeting as soon as possible. I met with the area manager who said she had been in a fight with another resident during the night and was found in the morning with her face bruised and swollen. I asked to see the case notes for that shift and was refused. I then asked what condition her bedding was in when staff awakened her and was told everything was neatly in place. To me this seemed to indicate that someone was lying, since her bed would surely have been messed up if this abuse happened in a fight during the night. I then visited Nickie who was skating at the arena when the meeting ended. I'm not sure how they were able to put her helmet on with the extent of her skull and facial scrapes and bruises, let alone having her out on the ice, skating just hours after experiencing such injuries.
Some years later, I was contacted by the former Administrator after his retirement. He told me that Nickie had been beaten by a staff member in the communal washroom. That another staff and 2 Loyalist students were present but apparently did not intervene to defend Nickie. He assured me that this staff would never be employed by PEH again.
At the age of 13 or 14, Nickie was moved to a 'halfway' house in the village at Prince Edward Heights where she lived with other women and was able to attend a school program during the day. She would sometimes run away, so safety became a concern and she was moved back to Craig.
The village at Prince Edward Heights opened a Behaviour Unit. It was proposed to me that Nickie be moved to this area. The counsellor in charge showed me through the unit and explained the treatment outline. The protocol included 'time out' in small locked rooms with padded walls, mattresses on the floor for bedding and no windows apart from an observation port in the door. I didn’t agree with this severe placement but I was ultimately forced to accept it. Although I did not agree that this move would help to correct the problems, which later proved to be the case, I found myself unable to bear seeing Nickie in these extreme conditions, and I did not visit for almost a year. Nickie learned a lot of aggressive and self-abusive behaviour while she lived in this unit. During one of the corrective treatments, her forehead, waist, hands and feet would be secured to a chair, sometimes for most of the day.
Nickie was in the Behaviour Unit for 12-14 months. She was then moved into a duplex in the village, where she once broke 22 windows in 1 week. She also frequently plugged the toilets. She loved the excitement it created when people would come to fix the damage.
Another serious incident occurred when staff set Nickie up to have sex in a room. Staff chose a man with whom Nickie seemed to socialize. A staff was stationed outside the room to make sure Nickie was okay. I was absolutely furious, upset, sad and traumatized! This information was given to me, after the fact, by a concerned member of staff who worked at the house. The idea apparently came from a supervisor who felt Nickie should have the opportunity to enjoy sex.
Due to the safety concern over broken windows, a move was suggested into a single unit with plexi glass windows where she would live in her own house with 1:1 staff. She was able to have a music room and her own family pictures. Nickie lived there happily for over 14 months and loved it.
Nickie’s behaviours were sometimes self-abusive. In one example to gain attention, she took off her glasses and smashed her face into a door jam. She broke her nose but loved the excitement it created which included a trip to the operating room. It was noted that she had carefully removed her precious glasses, as she could not see without them following cataract surgery years earlier. The surgery was complicated by a detached retina, and insertion of optical lenses was not possible. "Bottle" glasses became Nickie's signature look from then on.
When the closure of PEH was announced, I was a huge protester with the Ministry. I was afraid of the closure, but Nickie's new life in the community soon changed my mind.
However, closure of such programs as the local car wash service, do pose some concerns as to the future. That program was of such benefit to our workers and their customers. This was a longstanding service, which is sadly missed by all concerned, not the least, by those who worked there for so long and with such dedication. With this in mind, one must wonder what else could be curtailed in the future.
After leaving Prince Edward Heights in 1998, at the age of 35, Nickie moved into a home run by Community Living Prince Edward (CLPE). Her 1:1 staff from Prince Edward Heights helped her to transition. She chose her own room overlooking the garden and has been there ever since. She initially had a separate music room but now enjoys all her entertainment in her own room. The group home staff working with her was always firm but fair. Nickie’s medical care was not an issue when she moved to Community Living. She stayed with the same family doctor that she always had. This doctor visited Nickie at PEH, and advocated for her care and continues to look after her medical needs in the community.
Nickie has had a very active life, until she suffered a 'stroke' type episode during the night some years ago. This has limited her mobility and social interaction in general, but she can still surprise us with her 'good' days. She visits with me every Wednesday, and at her CLPE home loves ferry rides, her picture books, movies, music, Netflix and her tablet. Nicky concentrates on doodling in her notebooks, which she calls her “school work”. She hates winter. At PEH, she would often repeat the phrase, “summer coming”.
Nickie still likes to drive to PEH to see where she used to live. Perhaps remembering the happier times, when she went to school, and was very active in skating, swimming, horseback riding and other programs offered. Nickie remembers a couple of people she knew at PEH. She still talks about a man named Kenny, and about a woman who walked away and was later found deceased.
Nickie never really had friends at PEH. She is far more interactive since moving to the community. In her house now, she relates well to her housemates. She has become friends with a housemate named Sally, who mothers her. She has taken trips with Sally. They went to Niagara Falls for three days, two years in a row. They liked to go to the casino at night, and locally to concerts, theater, and the beach.
At PEH Nickie would sometimes go to the Peterborough zoo or camping, but with the whole area on a big bus. Now her activities are with some housemates, in the house van, driven by familiar staff.
Special occasions are a highlight for Nickie. At Rideau, they would make an attempt with a cake for her birthday and a Christmas tree on the ward. At Prince Edward Heights she had a birthday cake, and there was a Christmas concert. At both places, however, her possessions would still disappear. Now, with CLPE, they have big parties. They have Christmas celebrations in the house and a party at the Community Centre. They have a barbeque party in the summer for families to get together.
There has been a big difference from the institutions to community living. There are major improvements in staff attitudes and care. Communication is very open and I get weekly emails about Nickie’s routine and activities.
At CLPE, Nickie thrives in making her own choices. At the institution, there was uniformity of everything, and absolutely NO choices. There was a starkness of even the common areas, no pillows or curtains. Moving from Rideau to Prince Edward Heights was like night and day, Prince Edward Heights was much better than Rideau but nothing like moving to her own home. Now, Nickie has a real home, and when out on visits, will say she wants to go “home”. She has a definite sense of ownership.
In the community, Nickie has been able to be her own person. In the institution, she had to fit the mold and could not be an individual. There is more understanding now. The plan fits Nickie, Nickie doesn’t have to fit the plan. There is more continuity in staff attitudes. She has a stable home life. She has a choice in everything!
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