My gameboy and games

I am 28 and I have a gameboy.  I admit it I have a gameboy or a Nintendo DS3 and it is light blue and I have a case for it somewhere and it is blue also.  My Nintendo DS3 goes everywhere with me because if I am somewhere crowded I will pull it out and play on it because it helps me focus and if I am somewhere crowded I can concentrate on playing on my games.  Currently I have 73 games and in about a month’s time I will have 74 because the new pokemon game Pokemon Y will be out and I preordered it from one of the shops in town.  I really love the pokemon games and any puzzle games that I can solve on my own without any help from my parents or anyone like that.  Couple of years ago Mum couldn’t decide what to get me for a Christmas present so I suggested to her a new gameboy to replace my old one which was getting broken and couple of games to go with my gameboy and so I decided to help Mum with the cost getting down my new gameboy so I traded over I don’t how many games but I brought down the cost so much that I actually got another game that Mum wasn’t going to pay for.  When I was about 14 I discovered pokemon and so I started printing them off the computer and started colouring them in their right colours because it was and is still good therpy for me because I have to stay in the lines and colour them in.  One day I was in a store looking at games for my gameboy when a shop assistant came up to me and said you are too old to be looking at gameboy games and I boycotted the store for at least couple of years because you are never too old to enjoy something that you love doing.  There is a store in town called EB games and I go in there about three times a week to just to have a look at the games that they have in there and they sell preowned games as well as new games too.  All the staff know me in there and they don’t mind me having a look.

To Anonymous

It isn’t my fault about how I am a mosaic sometimes I wish I had the full syndrome so I could see what it was like for a day.  When I was growing up I got bullied, teased, pick up on and was called the “R” word and so many other nasty words that little children were saying.  I didn’t fit in at all at school I was the child in the library at most lunchtimes because I love reading and wanted to increase my knowledge.  I was a school librarian from the age 11-18.  I struggle every single day with sensory and wanting me to touch everything in sight and run my fingertips over walls, shop windows and things like that.  It was my best friend’s birthday the other weekend and I wanted to go out and celebrate with her because it was her birthday but she was going to a pub where it would be noisy and overcrowded with heaps of people and I didn’t go because I would have gotten there and wanted to come back home within half an hour.  Maybe you were having a bad day reading my blog and needed to vent towards me, we have all done that vented at someone to let it all out of our system.  When I was reading your comments the first time I wanted to cry because your comments were nasty and mean and I didn’t want to write anymore because of what you said.  But then the CDC community on facebook were like please don’t stop writing we like reading what you write.  I am an adult and there are favourite toys that I like to play with even if they are different from everyone else’s we can’t always be the same.   I struggled to fit in all of my life and about four years ago I was on Facebook one day and I typed in Cri Du Chat and a group came up so I joined it and I told the group that I was a mosaic and that I lived in New Zealand.  That group changed my life forever because I was accepted for being me and no one judged me for being me.  I am respected by a lot of CDC families because I can help them understand CDC better and answer any questions that they might have in my own way.  I don’t have all the answers to all of the questions but I certainly try to answer them.  I don’t think less of my CDC brothers and sisters because they have the full syndrome or can’t do certain things  I love them all equally and I am one of the only ones out there can explain what it is like living with CDC.  I want you to be your friend if you will allow me too I know that you might not be ready too but I am here and so is the CDC community to help you whenever you need it.

My Week

I celebrate my life every single day because I know that my life would turn out very differently if I had the full syndrome.  This week I have been on my own because my parents are off in two different countries my Mum is in America doing route 66 with couple of their friends and their new car that they have just brought and being posting photos every single day on facebook and they are in Texas at the moment but tomorrow they will be in Santa Fe staying with my brother and sister in law for couple of days and we are going to try and skype each other while they are there.  My Dad is in Europe in Rome currently enjoying celebrating my younger sister’s birthday today and later they are going to board a yacht in Croatia for a week and we tried to skype on Sunday for Father’s Day but it kept on freezing but I did get to see my sister and my Dad twice for 5 seconds.  I have being going up every single day to feed Beanie and my YMCA boss that I work with that I have being working with for almost four years it was her last day today because she is moving to Australia to live and I am going to miss her because when I started working I would only stay with her down the stairs and do activities downstairs with her and the children but when we moved to my old primany school (long story) I had to step up and have more responsailty where we have the cirect set up and I now can say that I confidently I can show the cirect to the children without any help and supervise the children in the room.  I have come a long way since I first started working at the YMCA.  Also this week I found couple of families on one of the pages called Stop discrimination against special needs whose children have CDC and didn’t know anything about Cri Du Chat / 5p- Society on facebook so I told each of the Mums if they wanted to join let me know so I could introduce them to each of you.  Also this week on facebook I updated my Status to this For those who don't know I am going to the Cri Du Chat conference next year in America it is going to be held in San Antonio and I can't wait because I reach out to so many families and I love what I do because I give hope to so many families.

The trouble with facebook is

You don’t know what it like to be me.  You think that you do but you don’t you have no clue.  You think you understand but you don’t.  You think you know me but you don’t so stop trying too.  You don’t see me struggle every single day and if you did you would understand. 

I deleted a family member off facebook on Tuesday.  I am not going to say who it is because it is not who I am.  I didn’t like the way that my cousins and my brother and sister and I were been treated by this person, this person had tagged us in a photo without our permission and when I tried to defend my brother and sister and my cousins, this person didn’t listen to me at all.  I messaged him or her and told them that I was unfriending them and I gave my reasons why.  They turned around and told me that I was acting like a young child because it was over nothing.  It didn’t feel like nothing to me, it felt like I wasn’t being heard and it didn’t matter that my opinion didn’t count for anything.  This person needs to grow up and start acting their own age and they need to realise that we are adults not children and that we have boyfriends, girlfriends, husbands, wives, parents and lives to get on with.  This person also needs to realise that their nieces and nephews are grown and can make their own choices in life and needs to stop tagging them in photos or sharing things that they don’t want to be shared with the person’s friends.   Yes we know that there is an election coming up and hopefully everyone is enrolled to vote apart from those who are travelling or live overseas.  I am not going to accept this person’s friend request until they have learnt to step back and learn that the world doesn’t revolve around them.  This person needs to realise that people are allowed to unfriend them without them making a big deal about getting unfriended and no angry emails to the person who unfriended them.

Work

I don’t like it when someone is trying to help to do something when I know that I am more than capable of doing it myself.  On Tuesday mornings I go to a shop called Trade Aid and I work from 10-12 where I dust, I take my bosses banking down to the bank and I can now say good morning and how can I help you to a customer and slowly learnt how to use the till and served 8 customers on my own without any help from my boss or the other volunteer who works there.  My goal is to get up to ten customers all by myself and then my boss and I are going to set a new goal for me to work on because I am goal orientated and I get a new elephant.  I would have liked to get my new elephant on Tuesday but that wasn’t the case because the volunteer that I work with decided to hover over me while I worked serving customers at the counter.  I got so frustrated at her because she wouldn’t leave me alone to serve customers, she was two feet away at all times.  I know that I am a little bit slow working the till but I am getting a little bit faster each time that I do it.  I know how to ask for help if I need it.  My disability shouldn’t affect my ability to work or shouldn’t come into my work. 

My disability doesn’t come into affect at my job at the YMCA because I know what I am doing and if a little child comes up or stares  and asks about my bad leg I just answer honestly and just say yes I have bad leg you can balance better on the balance beam better than I can.  I love working at the YMCA because myself confidence has grown in me and the ability to teach young children about people with disabilities and there are different people with different abilities.  You have to look past the disability to see that they are just like you.  All I want to be is accepted at work.