Parents & Family Profile
Profile: CHARLIE AND MARILYN CRAMER
Charlie and Marilyn Cramer are parents of two daughters, Tricia and Kaylee, both of whom have Down Syndrome. Charlie is currently on the Board of Directors for the Association. In the 1990s, Marilyn published “Special Friends”, a magazine about people with special needs. The Cramers share their thoughts and experiences in the following stories.
by Charlie Cramer
Tricia Cramer was born on January 31, 1975. I remember the doctors telling Tricia’s mother and I that she was not normal and that they would have to do some tests.
Before we were able to see her we were given the option of putting her up for adoption. At the time we did some research into Down Syndrome but found there was very little information. The specialists at the time informed us that Downs individuals were not capable of learning and that it was best to “take her home and love her”.
As Tricia continued to grow we noticed that she was slower than her older sister but attributed it to her having Downs. We were over protective parents and did a lot for her.
Had we had her to do more she may have progressed further.
Tricia’s speech was then and is now one of her largest obstacles. Early on we suspected that she may have a hearing problem that was contributing to her delayed speech. I remember making many trips to Edmonton only to be told by the doctors that they could do nothing about her hearing because she could not speak. After many attempts we finally got an appointment with a doctor who could test her with out communicating with her.
When it came time for her to attend school she was expected to go into an “opportunity class” in Beaverlodge Elementary. We lived in the country and her sister attended the same school. We asked about the class that she would attend and found there were two other individuals with disabilities in the class, both male and 4 to 5 years older than her.
We requested to sit in on one of the classes to view how it was conducted and to see how she might get along. We were told that we couldn’t sit in on the class so we looked for other options. It was at this point we found out about Jill Oliver.
Jill Oliver was starting up a school for disabled students and we requested that Tricia attend this school. It was first run out of the building next to the Monie Desmarais School of Dance, which is currently the French school. Eventually the Crystal Park School was built and the students were transferred to the new building. Funding and busing were a problem for us. Eventually there was a separate bus that picked up the county kids for Crystal Park, thanks to Ben Smashnuk. He lobbied the Government to get a bus for the kids.
Tricia attended Crystal Park until grade 10. After Crystal Park the grade 10 students normally attended the Composite High School. Again the county had a problem with busing and said that because there were classes in Beaverlodge Regional High that if we wanted her to attend the Composite High School we would be expected to pay for busing.
It was approximately $5000 per year back then. We were against Tricia having to change schools as she had friends that would have been with her when she transitioned to the high school. We looked into the classes in Beaverlodge and met the teacher in the class who was Mrs. Mitchell. She turned out to be one of the best teachers for both Tricia and us.
Mrs. Mitchell informed us about guardianship and had us think of what Tricia would be doing in the future. We were allowed to keep Tricia in the Beaverlodge High School an extra year. During Tricia’s High School Years, Tricia’s mother and I divorced. I remarried a couple years later. This was a difficult time for Tricia. In 1995, I bought a house in Grande Prairie for Tricia. The idea was that we would move to Grande Prairie and move in with Tricia to see if she would like living in town. Tricia’s sister, Kaylee came to us in the same year and we all moved in together.
It was through Tony Bonise, Tricia’s Service Client Co-ordinator that we found out about the GPAMH. It took me three years before I was comfortable with Tricia being on her own. Tricia was certainly ready for us to move out. For Tricia to live on her own we needed to find her roommates and to get funding for staff. We set out to do this. The house would be supervised by the GPDAMH.
We found one other individual but the funding for two individuals was not enough. We needed three. We worked with the PDD (Persons with Developmental Disabilities) and were able to start the home for the two, eventually finding a third roommate. Tricia has lived in her home for the last six years. In that time she has found a boyfriend, rides to work on the city bus and has sharpened her cooking skills. She has a social life that is the envy of her parents. She just came back from the Dominican Republic on a holiday and from my viewpoint appears to be generally happy in her life.
Leaving the Nest
by Marilyn Cramer, editor
Special Friends Magazine
It wasn’t that long ago that my daughter Tricia left the nest to live in her own home. A little bird, held so gently in my cupped hands, being passed onto another best describes my thoughts as I prepared to pass my daughter in to the hands of the staff working in Tricia’s new home. I see this little bird, safe in my hands as a very precious, fragile bird. This bird is meaning the world to me. Now I prepare to hand it over to strangers, “staff”, specialists trained in the field, they say. Somehow these words give me little comfort, even though I wish they could.
I knew for a long time, that for my daughter to continue to grow, she needed to leave my care. But the wings are fragile, not strong and sturdy. Yet, it was very evident to me that I couldn’t do anything more to help her grow. I didn’t feel very comfortable at all, nor secure that the staff would continue to nurture and protect my daughter as well as I had. What I certainly hadn’t been prepared for was how much my life would change when my daughter was on her own.
After Tricia left, I realized that our children are less likely to be impacted by the change than we are, especially when they want to be on their own. It’s been almost two months now and already I see my little bird stretching her wings, growing and more importantly, very happy. Sure with my keen eye, I see that not everything is up to my standards and I am glad. I am glad because Tricia is truly having the opportunity to be herself. She is making decisions based on what she wants. She is no longer trying to guess what I want her to say and do. Some of the values I have given her are remaining, some are not and some new ones have developed.
Leaving an adult child to struggle through their adult life conjures up many emotion, sadness, pride, fear and excitement. Letting go of my previous role of “mother” and moving closer to my new role of “friend and mother” is not easy, but most assuredly it was best for Tricia.
So now I watch from afar, circling her new nest quite often, knowing that there will come a day when she will be passing me on to strangers as a fragile bird cupped in her hands. I can only hope that she too will circle my new nest and watch out for me too.
Excerpts from My Diary
Tricia is turning 18 this week and it’s time we start to think about life after school. Tricia’s teacher had told us about AISH. We had no idea that Tricia would qualify.
We also need to start working on Guardianship.
Charlie met with Tricia’s mom on Guardianship. She does not believe in guardianship. We are going to have a battle on our hands here.
We decided that we will have Tricia take one more year of high school. Tricia’s mother did not want her in school. We had to hire a psychologist to support our position of school.
He felt that it would neither hurt nor benefit Tricia. Tricia went to school for another year.
Charlie and I talked about what are we going to do when Tricia leaves home. The Association told us that there are no vacancies in the group homes. We decided that we are going to buy
Tricia her own home. We are not going to wait for the system. We will have to create what works for us, if that’s what it takes.
We have just resolved guardianship with Tricia’s mother. After 2 years in court, the court is granting Tricia’s mother access every second weekend. Our lawyer says it’s not worth appealing
it as the courts see individuals with disabilities as children and not “adults”.
Tricia is going to Special Olympics Bowling. This has been her second year. She loves it. I love it. It’s the only time I can do something and not feel self-conscious. Tricia is also going to
Toastmasters with me. The group has been great at accepting her as another Toastmaster.
We bought a house for Tricia today. We will rent it out and in the spring will move in.
Today we brought our new baby, Kaylee home from the hospital and moved into the house we bought in town. We have moved from the farm to Tricia’s house in town.
Tricia is going to work at New Generations for the Association. I don’t much care for Tricia not being included, but this is the best we can do.
At some point in time, we are going to have to find Tricia some roommates and leave Grande Prairie. My husband says he will work on this, but seems to be going at a snail’s pace.
I myself can’t wait until Tricia moves out. Let someone else put up with “no, I’m not going to have a bath.” I have just realized that I can no longer influence her. She has grown up and it is time to leave the nest.
Tricia is starting to meet new friends. She has a best friend now, however her friend is not someone that is all that nice to her. Tricia has tried to work at other jobs as I want her to be included in the community but she is failing miserably. She cried when she worked at Arby’s. She does not take direction well. She is too short to work at Wendy’s.
We have now found a roommate for Tricia. We haven’t got a second roommate but have someone who may be interested. We are going to approach the PDD to see if we can get enough funding with two roommates.
Tricia has a boyfriend. Tricia and Boyd seem to be a match made in heaven. I could tell when they were dating others they had eyes for each other. I like the way Boyd treats Tricia.
We applied to the PDD for funding but were turned down. This is ok because we are excited that we can appeal. I am going to bring all the facts and data so that it will be hard to turn us down.
Had our meeting with Laurie Kennedy and funding is approved. The roommate will be moving in next week and we will be moving back to the farm. I am not ready for this.
Met the lady in charge of the staff. She wanted to know if I wanted to meet her. I have no idea who she is or who the staff is and they are taking over on the weekend. I needed to know
what she was going to do, what were her plans, is she going to document Tricia’s activities on the calendar. I put on my most assertive voice, as assertive as you can be just out of the shower in a housecoat.
Next day. The Association called me; they wanted to meet with me. The staff supervisor does not want to work with me. She felt that I was overbearing and what I was asking for was unreasonable.
I met with them and shared my concerns. Then all of a sudden I started to cry. I was no longer the one planning, in charge of everything. My role as Tricia’s mother was changing effective today and I didn’t have the chance to think about this. I was giving all the work I have done up to strangers.
Tricia is doing great. She loves it. The third roommate should be arriving this month. It feels good to meet the agreement we had with the PDD. I hope I have been able to earn some respect from them and that they can count on me. I may need their help in the future.
This month Tricia’s mother decided that she didn’t want to see Tricia anymore unless Tricia could work for her.
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