How does CDC affect me?

I get this question quite a bit with new families and my new boss at the YMCA asked me “How does CDC affect you?”

How does CDC affect me is that I have a slight intellectual disability, my speech at the age of 29 I can’t say some words properly but most of my family and close friends can understand me in what I am trying to say.  My concentration I can only concentrate for certain amounts of time before I need a break to do something else even though I can read a whole entire book in just a day without any breaks but I have taught myself how to concentrate for that amount of time. My balance and my hip dysplasia which means when I walk my right hip turn inwards and I walk with a limp, my left hip sometimes occasionally turn inwards also.  I don’t like social situations because of sensory overdrive. What is sensory overdrive is when a lot of things are happening all at once all around me and my brain can’t keep up with my senses which are all going into overdrive because they can’t work out what is happening and it makes me really tried the next day and it usually takes me couple of days to recover.  I also don’t like loud noises because I am really sensitive and don’t really like really high pitched sounds like the singing bowls that we have at Trade Aid I just cover my ears and go out of the shop to get away from the sound. 

Apart from those things I can live independently, cook for myself, look after Fanta (kitten), have an amazing boyfriend and help the CDC community to understand a lot more about CDC.

Sensory Overdrive part 2

Yes I do I get sensory overdrive even though I love to touch textures with my fingertips, a little bit of sensory for me is good but not a whole lot at once. I go into Trade Aid almost every single day and in one of the display boxes are the rings with rice all around them and if I am having one of those days that I am not getting enough sensory I just play with the rice because the rice has an effect on me like people on drugs.  I seek out sensory by running my fingertips along shop windows because it has a calming effect on me and I know that a lot of people stare at me while I am running my fingertips across the shop windows but I don’t care because they don’t understand.  I went and saw my first movie in a while couple of weekends ago the Hungry games “Catching Fire” I didn’t really enjoy it because my sensory overdrive kicked in because there was too much happening at once on the screen and afterwards I felt like terrible.  Then last Friday my Mum had dinner around at her house to celebrate her birthday and when people started to arrive I disappeared into the living room to watch tv and then later on I played on her computer in her study.  Sensory overdrive is something that I can’t grow out of and I know how to manage so I get the right amount of sensory every single day.

Guitly

I feel guilty sometimes for having a boyfriend, having two wonderful jobs and all the things that I am great at doing.  I know that it is not my fault for having mosaicm but I do still feel guilty. Couple of weeks ago I went to Bryan’s for dinner he lives up the road from me. (Yes we do live on the same street.)  We had pizza for dinner and I had fun that evening but when I was walking back to my house I felt guilty because my CDC brothers and sisters won’t get to ever experience eating pizza with their boyfriend/girlfriend and I try not to feel guilty but sometimes it doesn’t work.  I love my CDC brothers and sisters and sometimes I compare my life to theirs because I get to experience so many wonderful things like going to work at Trade Aid and being set out little challenge by my boss because I am goal oriented and we have changed my challenge to cash transactions because we don’t get many percentages on the till. I still struggle with cash transactions I know how to do eftops even though we changed the process of eftops transactions and I need 10 cash transactions to get my elephant teatowels and that is my reward for doing ten cash transactions all by myself without any help from Cricket or the other volunteer who works with me on a Tuesday morning.  Sometimes I get sad about what I can do while others with my syndrome can’t do what I can I do like read a new book in one whole day but then I think of all the joy that they are bringing to their families lives.

Fanta

I am 29 in a month and I have a new kitten called Fanta she is mainly ginger with white paws.  I don’t think i would get another kitten again after Crede died but in the three days that I have known Fanta she has started to help me heal and Crede will always be my little man.  Those who don’t know or haven’t been reading my blog for very long Crede was my first kitten,  I got him as a surprise on my birthday last year because I have always wanted a kitten/cat and in May he got ran over outside my house and I have his ashes in a box sundered by my elephants for protection and his box is up on a shelve up above my heater.  It feels weird having a kitten around again but heaps of fun.

I wish

Sometimes I wish there was another New Zealand CDC family living closer to me.  I know that I help a lot of overseas families but I don’t think there has been any official conference in New Zealand before because there is such a small group of us but one day I would like to meet some more New Zealand families and to meet one another like how I meet Portia and her Mum Karina at the conference earlier this year.  I can’t wait for the USA conference next year because I will get to hug some very special people that I have helped over the years and I get to meet and hug three of my best friends that I have an amazing connection with.  I think I will be one of the only few who will most people there because I was only the few who knew everyone at the Australian conference and Mum was impressed that I knew so many wonderful people.

13.1

13.1 is just a number to anyone who looks at it but for me it just more than a number.  13.1 is the size of my deletion.  I only found about the size of my deletion this year in March.  That is 80% of chromosome missing but being a mosaic only 30% of my blood are affected, I have no idea about the rest of my body cells and which is fine with me.  I have always wanted to know about the size of my deletion.  Even though I am mild CDC still does affect me like my speech, the way that I walk and sensory overload (for those people who are going to the conference next year please be aware at the banquet on the Saturday night I might be playing on my gameboy or my ipod because I need some time out because my sensory overdrive will be working overtime.)  I still need help in doing certain areas in my life and I celebrate every mildstone that I achieve it maybe different from my CDC brothers and sisters but it is still a mildstone to me in my life.  I want to change people’s minds about what CDC children/teens/adults can do and what they CAN’T do.  Even though I have a large deletion but only 30% of my blood cells have the wonky choromsome.  13.1 is just a number to me it doesn’t change anything about me.