CDC week

I give CDC a voice every single day of the year.  I reach out to a lot of families through facebook and tonight I reached over 1000 friends which is a lot of friends to keep track of but I love what I do because I am helping so many wonderful families to educate them about CDC and what it means living with CDC.  A lot of people with my syndrome can’t tell their parents what it is like having CDC but they are still smart like in their own way.  It is international Cri Du Chat week this week and it is amazing that the video has gotten so many views all ready in you tube.  I love awareness week because it brings people together and makes them aware of CDC.  It has being 50 years since it was discovered by Dr. Jerome Lejeune and we should celebrate the theme for this week is I CAN.  On Tuesday morning I went to Trade Aid and almost served my fifth customer all by myself (my goal is to reach ten.)  Then build on that by increasing it to twenty and so forth.  I was reading brown paper bags as I putting a bookmark in each of the bags and the bags read I made a difference and I was telling my boss on Tuesday morning that I make a difference every single day because I reach out and help people to understand CDC and I am so grateful for giving a voice to my CDC brothers and sisters and for those families who let me be me and accepted me for me.  I do some amazing hard work on facebook because I don’t want families to be alone. I love my CDC family!!!!!

CDC conference

I have reached out to more than 800 families on Facebook through my introduction about myself and I love what I do because I bring hope and faith to those families who are struggling to come to terms with CDC and what it means to them as a family.  I love it because I get to tell people who I am and I what I have achieved over the years.  About a month ago I went to a CDC conference in Australia and I loved it because I just could be myself and no one else even though it rained for the four days that we were there I loved it and I enjoyed it to be apart of something great.  Next time I want to take my boyfriend across so he can for himself how lucky he is to have a girlfriend like me.  I know that I haven’t written on my blog for such a long time, I think it is because I haven’t said anything to say until now. 

Most of the CDC community knows that I went to the conference and spoke in front of 150-200 people which is just scary in itself standing up there and reading my speech with a lot of distractions going on around me but I did it and I am so proud of myself and I know that I made a couple of people cry and a lot of them had tears in their eyes but I have worked out what I want to do with my life and that is to help families who have babies/children/teens/adults living with CDC as well as working at Trade Aid and the YMCA. 

If those people haven’t yet checked out my video yet it is on facebook in the CDC groups and couple of the other groups that I belong to.  I also wrote a poem for international Cri Du Chat week I know which is only about a month away but I am going to share it anyway and then going to reshape it again once it is international CDC week.

I have a rare syndrome called 5P- and here is a fact
Was discovered by a French man called Jerome Lejeune
Fifty years ago in 1963
I can do many things like a normal twenty eight year old

 I can live on my own and have a boyfriend

I can cook and try and keep my house clean
I can walk afar because I don’t own a car
I can have fun with my friends

Two mornings I work at the YMCA from 9 until 10.30am

Helping children have fun while being fit
There is a circuit with a lot of different actives like  
Climbing, sliding and balancing

 The other morning I work in a shop called Trade Aid

Where I try and help my boss all day
By doing her dusting and banking every week
I keep on her toes by being me

 I love to read and write

I could do it all night
I have a kindle which makes reading a whole lot fun
I can read a book in a day and a half

I reach out to other families through facebook

To show them what I can achieve and give them hope
In their darkest hour for someone to listen to them
Because they are not alone

Now it is time to celebrate
International Cri Du Chat week
So put on your t shirts and spread the word
That kids with Cri Du Chat simply amazing

Love part 2

As Christmas, my birthday and my anniversary of when Bryan and I first hug approaches.  I realise that I am lucky and I am grateful for everything that I have and that is why I love giving back to Cri Du Chat families.  Almost five years ago on the 18th December I went to a Christmas party that changed my life in a good way forever.  That’s where Bryan and I’s first hug took place and I can’t believe it is being five years all ready.  He came into my life when I need him the most.  He was the first person that I told that I was moving out of home apart from Mum who was really the first.  We have survived four break ups and gotten back together after each one.  For those families who are new and don’t know the story of our relationship, I will tell you the short version because the long version is really boring and long.  Bryan works at a place for young adults who have disabilities where they do life skills, socialise and do fun activates during the week, computer skills also.  I went one Friday morning because I had lost my job at Cullinane one of the high schools in Wanganui (my hometown) and on Monday evenings I took their cooking classes.  I walked in on the Friday morning not looking for love but love found me, I noticed a cute looking guy in the computer room and I said to myself he is good looking but not to my knowledge or later on he thought I was beautiful looking and asked one of his bosses questions about me and he turned around and said to Bryan that I was coming on Friday so he could ask me questions himself.  I can’t actually remember what happened that Friday but I think both of us started flirting with each other. This continued over the next few months.  On my birthday that same year I was walking down to Sommerville and came across him walking to Sommerville and I told him that it was my birthday and he said happy birthday and when we got to Sommerville another one of their clients turned around to us and said you are dating and we both looked at each other and said no.  On the 18th December Mum dropped me off to the Christmas Party and found myself flirting once again with Bryan and ended up having a really awesome time, I don’t usually do so well at parties or social gatherings because of my sensory overdrive.  Towards the end of the night Bryan and I hugged and he quietly whispered in my ear “I know that you don’t want me to go sweetie but I have too.”  I really then knew that it felt right hugging him and ever since then.  It was about eleven months after the Christmas party and several months after our first break up before we had our first kiss, Bryan had come over to Kayla’s (best friend as well as old flatmate) to look at something on my computer and none of my flatmates were home and we were in my bedroom and we both leant over and kissed.  It felt wonderful and magical at the same time.  This time last year if you told me that I was going to quit Sommerville in May of this year I would have laughed off the suggestion because I don’t like changes in my routine but I knew something had to change and I was the only person who could make that change because I couldn’t ask him to do it so an opportunity came up in May to work two mornings a week at the YMCA and so I took it because I knew that I couldn’t do it anymore have a relationship with everyone watching and retain a relationship in that environment so I took the biggest risk and it paid off big time.  I know that I don’t get to see him each Friday morning but that is all right because we Skype, Facebook and text each other and we have date night once a month I know that sounds like a little at the moment but it is the best that we can do at the moment and he lives down the road from me.  He came around on Friday night after dinner and spent two hours at my house just hanging out and both of us are glad that each other in one another lives.  He makes me happy.

Mosaicism

Everyone knows that I have Mosaicism but what just is Mosaicism you ask?  Mosaicism means that some of my cells have 5P- have in them, I have 30% of my blood cells are affected.  I have a very large deletion in my cells, actually I shouldn’t be doing the things that I am doing like talking, walking, living independently, having a boyfriend, writing, reading, cooking dinner and going food shopping by myself.

There are some downsides having Mosaicism is that I don’t like crowds because I go into sensory overdrive and I really don’t like really noisy places or any social events with over twenty people that I don’t know or I do know but don’t how to socialise properly.  Next week is my Mum’s birthday and she asked me to today do you want to do lunch or dinner next Thursday for my birthday and I turned around to her and said lunch and Bex can join us for lunch to celebrate.  Even if we go out somewhere like that I take my gameboy so that I can sit and play on it while everyone else is busy.  I get really tried quickly if I go into sensory overdrive. 

I love my routine because I know what is going on and where I am and what I am doing.  I love mornings because I can better concentrate on something in the mornings better in the afternoons because I need to take breaks from what I am doing or otherwise I think I would lose focus on what I am doing that is why I only work on Tuesdays from 10.00am until 12.00pm.  Thursdays and Fridays mornings from 9.00am until 10.30am (my disability doesn’t come into my role at boogie buddies) and on Monday mornings I sleep in but I think that is going to probably next year and then I go and do my grocery shopping with my caregiver but she didn’t turn up this week so I went and did it on my own and stuck to my list and on Wednesday mornings I do my housework while listening to music and dancing, most Wednesdays I have lunch with my Mum to catch up and to swap magazines and to shop.   Then I go up to Dad’s for dinner and hang out with Dad and Andrea (stepmum), Abbie (stepsister) for the evening and then Dad drops me home.

I have a slight intellectual disability but it doesn’t stop me from living my life and I have a really supportive and loving family who would do anything for me and a really handsome boyfriend that who loves me no matter what happens.  I think I have paved the way for other CDC children to fulfil their goals no matter what they have to overcome to reach their goals.

I am a daughter, sister, person living with a disability, an aunt, a friend, a granddaughter, a niece, a girlfriend, an inspiration, a role model, an adult, I am a cook and a member of society, a cousin, and a light in this world, I am all of these things and so much more. I have CRI DU CHAT SYNDROME!!!

Birthdays

My birthday is less than a month away and I don’t what I want from my Dad.  I know what I am getting from my Mum because I have known about what I am getting for a few months now.  I am getting a kindle because everyone knows how much I love to read.  Playing scrabble with my Dad it is a Wednesday tradition back like four years ago and my vocab has grown, I even beat him last Wednesday by a few points, but like I was saying I don’t know what I want my Dad to get me for my birthday or Christmas, last year he got me a new TV and that was for my birthday and Christmas even though I did get something little for Christmas.  By this time last year I knew what I was all ready getting from my Mum and Dad.  There is one game that I want for my gameboy called Professor Layton and the miracle mask, or also I want an Xbox because I want to practice playing halo reach when it is raining outside and my TV is trying to find a signal and the pixels are out of order like how it is doing right now or my hip straightened out but I know that is never going to happen because there is nothing that they can do about it even though it is getting worse each day.  My birth date will the 12.12.2012 and I was born at 11.33am in the morning and I will be 28. 

My World

My world is full of colour at the moment because it is spring I love this time of year because the sun is shining and the insects are starting to come out and the flowers.  Last week I started back at Boogie Buddies after a three week break and we are in a different location now at my old primary school.  The YMCA brought the whole school.  I walk down there and it takes me half an hour to walk. It is really wired been back at school because it has changed and some things have remained the same.  Also this week my brother David has been down from Auckland for a final visit before him and his wife Toni are going to New Mexico to live Santa Fe/Los Alamos for the next two in a half years, they are leaving end of November.  My sister Bex is also going overseas to London Ontario to study for three months and then going to tour around the USA with her boyfriend and Europe with my Dad, stepmum and stepsister.

Schooling and Transtioning from home

I was mainstreamed all throughout 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 stepmum 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 execced 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 programme called Boogie Buddies for two to five year olds 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 spilt 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.