We are so excited to be able to share Rachel’s Story:
Hi my name is Rachel and I have Cri Du Chat or 5P- but I am a mosaic which means some of my cells are affected but not all of them. I was mainstreamed all through out my schooling and I went to a private school called St Georges from the ages of 7-13. It really suited my personality quite a lot while I was there I spent quite a bit of time in the school library reading. For the last two years there I become a librarian. When I got to high school, I went to an all girls high school around the corner from my Dad’s until my final year where they combined my school with the local Catholic boys’ high school. When I started high school there was a learning centre where I could go to get extra help with classes or do correspondence like maths, life skills or have one on one help to talk about things. Mum also noticed that there was a widening gap between my classmates and I academically. For the last two years I went on work experience I went to work at the local public library and also at a day care centre which catered to special needs children.
After I graduated from high school I decided to move in my Mum’s because I wasn’t quite ready to move out of home. I went and did a teacher aide course run through training for you for two years because when I learn something new I like to repeat things over so they are stuck in my brain. I went back to my old high school through the mainstream employment programme it is a programme for disabled New Zealanders to create a job for them in the workforce and Mainstream pays in the 1st year 100% of your wages and in the second year they pay 80% of your wages and at the end of it you are meant to come out with a job but my funding ran out at the end of the two years. In the same year that I left Cullinane (my old high school).
I started working for a family friend she is an accountant and I went and helped her do her filing and shredding every second Monday morning until I quit late last year. I also started going to a place on Friday mornings for a social morning called Somerville Centre where I met my boyfriend of four years called Bryan; he is a computer tutor for them and I was a client and we weren’t allowed to date. We broke up four times over the four years and then got back together each time. I quit earlier this year because I increased my hours volunteering at the local YMCA which I will talk more about later on and plus it was hard to retain a relationship in that environment.
When I moved out of Mum’s I had recently just turned twenty four I moved into a house that my best friend Kayla from high school her parents had brought her a house because they were getting older and wanted Kayla to have girls her own age to live with. Kayla needs carers around twenty four seven because she is in a wheelchair (can walk with help and a walking stick), she has epilepsy and has a mind of a six to seven year old. Her buddy and my best friend Blue lives out the back in a self contained unit without any carers only her Mum comes and checks on her every single day. While I was living at the house a girl called Kate moved in and we were getting on so nicely until one day Bryan came round to show me something on my laptop and I told everyone including the carer that was on which was all fine. Kate hid in her room and when he was showing me something she turned around through Facebook while he was there was he still there and I said yes he is there. After he had gone back to work I asked her why did you say that and her answer was like I don’t like strange able bodied men and after that we didn’t get along at all. She treated me like I was invisible and still does whenever I go over to Kayla’s. Another thing happened while I was in the house ACC took away a lot of Kayla’s hours so most evenings I would be responsible for looking after Kayla and it went on for at least a year until the team leader who is in charge of Kayla’s carers encouraged Blue and I to write a letter explaining how we felt about things to ACC
and we got back a lot of her hours. In February 2010 I was in Sydney visiting a friend and I realised that I had outgrown Kayla’s so in April of that year I wrote my parents a letter which I had handwritten myself explaining all the reasons that I was unhappy in the house and that I needed to grow as a person. My Dad and my step-mum both read the letter and Dad changed his mind that Friday when he read the letter because he said to me I am going to buy you a house.
We looked for a few months and found the perfect house for me to rent because he wanted to for six months to see if I could live on my own and I exceeded over by a year and a month. After I moved into the rented house Mum turned around to me one day and said out of ten what would you rate living at Kayla’s and I turned around to her and said a 1 and she said what about now and with a big grin on my face I said a ten. Dad brought me a two bedroom house in July of this year and I love it because hopefully one day Bryan will move in with me. My house is five minutes away from my Mum’s work also Bryan lives down the other end of my street and town is about an 8 minute walk away. I volunteer three mornings a week one morning a week I go and work in a shop. I can serve the customers, dust, restock the shelves, go and do the banking for my boss
I am the only volunteer who is allowed to go and do the banking. Then the other two mornings I go and volunteer at the YMCA doing a program called Boogie Buddies for two to five year old’s it is so much fun and it is good therapy for me. At Boogie Buddies I set out a circle of mats on the floor when I arrive and then I help one of my bosses set up the gym equipment for the circuit that the children do upstairs. When the children arrive we ask them to take off their shoes and socks and leave them neatly along the wall and then we get them to sit down on the mats and then we do warm up exercise with them and then we do a warm up song like the bird dance, here comes a bear, the Hokey Pokey. After we have done the warm up song we tell the kids to set on the benches to split them into two groups, one group stays downstairs and the other goes upstairs to climb on the gym equipment and then downstairs we set up a floor circuit with hula hoops, a throwing target with beanbags, a wobbly bench with hula hoops one at each end and the children have to crawl through them. Sometimes we do other activities like at the end of the term we get out the parachute and put balls and feathers on the parachute and we have to get them off and then we sit underneath the parachute with all the kids and make it a tent. Another activity we do with the kids is we have four buckets of coloured balls around the floor and then when the music starts the kids have to put the right balls in the right box and so for the balls we have green, yellow, red and blue and us teachers go and put the wrong balls in the wrong boxes because we trick them into thinking we don’t know our colours.
I also write a blog called livingwithcriduchatmosaicism.