We are writing to introduce you to our sister, Susan Anderson, who is a resident of the Huronia Regional Centre (HRC) in Orillia.  Susan has lived at HRC for the past 46 years – since she was six years old. Susie was born in 1952 and for the first two years of her life progressed at a normal pace.  After she turned two, fate cast her a dreadful blow – she experienced most of the normal childhood diseases at the same time (measles, chickenpox, whooping cough, etc).  On top of this she also contracted a form of menginitis.  When the doctors spoke to my parents, the prognosis was that Susie was not expected to live through the night – her little body just couldn’t fight all that was attacking it.  The doctors mentioned that there was a drug that was being tested and that it might just save Susie.   However, this information was provided with a caveat that the drug could also retard her or provide no help at all.   Naturally, my parents agreed to the drug being administered.  Susie did live; however, her mental progress was halted at the two-year old level.  Her emotional state was also severely affected.  (You will have to bear with me, much of this is third party from my parents many years ago.)  She started experiencing epileptic seizures, she displayed violent behaviour towards others – more so as she got older, she became self-abusive.  Other than that, she did not really interact with others. My parents were raising five other children and my father was an officer in the Canadian Army, which required him to frequently be away on exercises and training courses, leaving my mother with the brunt of the responsibility of raising us.  Also, with Dad being in the military, we moved frequently, although once Susie started experiencing her problems, Dad did request that his moves be as few as possible and always within Canada.  In general, the military complied with this request; however, when Susie was five years old, Dad was sent to Indo-China for a year. Susie was becoming more and more out of control and as with many people who develop violent tendencies because of brain damage, she was also quite strong.  My mother was 5’1” and weighed about 90 pounds.  Mom found herself locking Susie in her room more and more often, in order to stop her from attacking the other children and to allow Mom to provide care to her other five children.  Even at a young age, we can remember Mom being so distressed at having to treat her child this way. Mom and Dad corresponded a lot and it was finally decided that Susie needed more care than she could get at home.  Our mother travelled across Canada to visit centres to see if there was some place that could provide such a level of care.   Mom was very worried because she came from England where such institutions were, in fact, asylums, where the “inmates” were locked away but not really cared for and, in fact, were often terribly abused.  One of the centres that Mom visited was Huronia Regional Centre in Orillia (at the time we were living in Scarborough, Ontario).  Mom and Dad made the decision to move Susie to HRC when she was six years old. We cannot imagine having to make such a decision about my child.  But, they had to balance many things: §        The level of care Susie needed §        Proper medical attention §        Dedicated counselling staff §        The need to raise five other children in a healthy and safe environment. There have been good times and bad times at HRC.  We will not hide the fact that back in the early 60’s Mom and Dad spoke of bringing Susie home or moving her somewhere else.  But as far as we can remember, HRC was always accountable for what happened “under their roof”, keeping families informed and dealing with the problem or incidents. When the Ministry of Community and Social Services took over the management of HRC, Mom and Dad felt very confident that Susie was going to be well cared for for as long as she needed to be. As the remainder of Susie’s brothers and sisters grew up and moved away, Mom and Dad still continued to visit Susie and have her home on a regular basis.  From 1958 until 1962, we lived in Nova Scotia so the visits were more infrequent; however, we spent every summer vacation camping for 3 or 4 weeks around the Orillia area so we could be close to Susie.  Then, in 1962, we moved back to Ontario and remained there – Mom and Dad anyway.  We children moved about as children do.  But, for the most part, we’re all back now. In 1978 Mom was diagnosed with inoperable lung to brain cancer and went into hospital and remained there until her death a year later in 1979.  This took all of Dad’s time and energy and after Mom died Dad really never recovered.  Our father passed away in 1993, but had been pretty much a recluse for many of the years prior to his death.  We kept him up- to-date on Susie when we would visit or communicate with HRS.  When I moved back to Ontario in 1985 after living in Winnipeg for nine years, I started taking on some of the responsibility of assuming the position of Susie’s next of kin, along with my sister, Donna Anderson.  I attended Susie’s annual reviews and was the primary contact for her medication plans and any correspondence.  During the late 1980’s we were informed that the government was looking to move the residents out to the community, if suitable accommodations and care could be found.  We were upset with that, but were assured that residents who required the high level of care such as Susie would probably not be able to move into the community and would stay at the Centre which would probably close by attrition.  Then, for many years there was nothing more said.  When we would ask, we were told that the decision was on hold indefinitely, but, again, no-one thought that Susie or any of her peers would be affected by the “transition”.   How wrong we were and sadly naïve. During this time, Susie was moved to the first “dorm” style of accommodation.  This proved to be wonderful for her.  It was a smaller, more intimate way of life and she was placed with residents who had similar needs.  Once she had gotten over the trauma of the change, she settled in quite well.  There were still a lot of the same workers that she had known in Cottage ‘C’, so there was a source of comfort there.  However, the move was extremely traumatic and she had a lot of periods of self-abusiveness and pica (pulling out all her hair).  She was blessed during this time with an absolutely outstanding counsellor.  Jackie used to give Susie bubble baths and rub lotion on her to try to get her to like the feel of that rather than the feel of scratching and gouging herself.  And, for the most part, it worked.  By the way, Jackie was severely allergic to anything that had soap, perfume, or other properties, but didn’t let that stop her.  She also taught Susie some very basic sign language – some of which Susie still remembers.  But, the biggest thing is that Jackie encouraged Susie to accept physical contact.  Prior to this, if anyone had tried to get close to Susie she would scream, cry, run away or lash out.  To be able to hug Susie and get a semblance of a hug back was the greatest gift we could have received. Although Susie was always well cared for, once the more intimate cottage style living arrangement was instituted, the workers were able to spend more time with her and provide a much calmer, home-like environment.  They got to know her (and her peers) so that they could start to anticipate her behaviour, dependent on what was happening around her, her hormones and emotions and hopefully circumvent that behaviour.  While they were not always successful, she had many more days of not hitting herself or pulling out her hair than ever before. However, because of so many years of hitting herself, the corneas in her eyes became detached.  We were contacted by the medical staff who suggested a corneal replacement.   They took the time to explain to us what this entailed and what the convalescent period would be like.  We were told that if she didn’t go through with the procedure she would definitely go blind.  We chose to have one of her eyes done.  However, this was the most traumatic thing she had to go through.  First of all, she had to be subjected to someone getting close enough to her to examine her eyes and she was terrified.  The convalescence period was just terrible.  She had to wear a hockey helmet and oven mitts 24-hours a day.   And she had to be tethered to the chair or the bed so she wouldn’t be able to hit herself or scratch her eye.  We couldn’t explain why she was in pain and such discomfort.  We swore that she would never have to go through anything like that again, so chose to not have the other eye done.  As it was, the transplant didn’t really work.  Consequently, Susie is pretty well blind now.   Shortly after this Susie was moved to McGhie 3.  Again, it took a long time for her to settle down after the move.  While she may not be able to see, everything that was familiar was gone.  She has been learning trailing and was starting to get around in the old place, and then had to try to learn at McGhie.  She wouldn’t come out of her room or move from her chair unless someone guided her, and even then she was very upset.  Now, after a number of years, she can get around the apartment now just fine and is happy and content. Again, the one constant in her moves has been the staff.  There always seems to be someone who says that they remember Susie from her other cottage or even from Cottage ‘C’!  And they always speak kindly and bring up stories of little things that happened.  Everyone remembers that she loved her music and would sit for hours rocking back and forth whenever she heard it.  Susie also loved going for drives in the car.  She doesn’t like it as much now that she can’t see, so we tend to visit her in the apartment.   She seems to like the visits for about an hour – not much longer.  Then she starts getting agitated (we actually think that’s an Anderson trait).  We bring her chocolates which she can consume at an extremely fast rate.  Once those are gone, she tends to lose interest in the visit.  But, we get our hugs and some giggles out of her when we do silly things, and it makes the visit all worth while.  We must admit that we don’t visit as often as we should, but we’re so comfortable with the environment she is living in and with the fact that the people at HRC are more her family than we are and HRC is her home and has been for 46 years. We can’t say enough about the staff at the Centre.  They are always caring and they are so knowledgeable about the needs of each of the residents.  Even the staff who work in the other apartments can answer any question we might have. We, unfortunately, don’t have any recent pictures of Susie to include with this profile.  She would probably frighten many who would look at her, with her sunken eyes (from the blindness), she has lost some teeth (from her self-abusiveness – not neglect), she has many scars on her face and sometimes her hair is quite patchy.  But, we see a child – yes a 52-year old child – who knows she is loved and cared for.  Her communication is the occasional laughter (which sounds like she knows something you don’t – and is so joyful to our ears).  When she is upset she keens, which makes you want to just hold her and comfort her, which she receives from her care-givers.  When she wants something, she gestures and grunts – doesn’t really leave anything open to question.  Susie doesn’t ask for much, but if she could it would be to be left in her home with her loving and caring family.  What could be simpler than that? For anyone to say that she is “institutionalized” is grossly uninformed.  She lives in an environment that has knowledgeable, well educated, well trained and caring staff.  She has access to immediate medical and counselling assistance.   She has a warm and comforting family of peers and workers.  She attends supervised programs every day.   She gets to go the Santa Claus parade.  If she’s upset or confused she gets comforted.  This can never be replicated.   We are so scared of what would happen if Susie had to leave HRC.  It is her home and they are her family and no-one (not even her natural family) can provide her such a level of care.  No-one who has a conscience could possibly even suggest such a move.