I have a name

I have a name before my diagnose which is Cri Du Chat or 5P- or Cry of the Cat or CDC for short.  I have families that respect me for me who haven’t meet me but have heard of me through facebook to them I am a hero.  Sure sometimes my body doesn’t work the way that it is meant to but I still have a brain that still works.  I don’t consider myself to be a hero because what I do is try and spread my life story, yes I have had my struggles and ups and downs in my life but I have stayed true to the person that I am and the person I want to be.  I have known some families for about four years and I know their CDC child’s name, how many brothers and sisters they have, where they live and how old they are and when their birthdays are. When I first started this journey of self discovery to search for families who have children with CDC, I didn’t realise that how many families I would be helping over the years, for me it isn’t hard work trying to reach out to families who haven’t heard of the 5P- Society in America, The Australian support group or any other facebook groups that they might join.  I don’t turn anyone away just because they a different race or if their child is more serve than I am because I am trying to help them understand what CDC is all about and here are some quotes that I have written over the past four years and I am going to write some quotes when I can think of some more.

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, a volunteer and a light in this world, a fur mama to Fanta. I am all of these things and so much more. I have CRI DU CHAT SYNDROME!!!

If you wiped out people with disabilities there wouldn’t be any colour in the world any more only black and white and we need to have colour in the world in order to show each other love and compassion and understanding for one another.

To all my wonderful CDC families make your children's/teens/adults achievements and milestones into tulips from Holland. Pick a tulip and put it on your kitchen bench and let the sunlight grow each of those tulips. Yes you will get some dying tulips along the way but some tulips will be everlasting throughout their lives.

My tulips/my milestones

I am a success story.  How I mean about that is that I see the tulips growing in Holland and I decide to pick them one at a time.  Most of you would have read the poem “Welcome to Holland” it is a poem about a different journey through life.  The tulips that I am picking represent the goals and the milestones that I have achieved over the years like learning how to talk, learning how to be empathic to those around me especially to my CDC families, learning how to tie my shoelaces, riding my bike, jumping on the trampoline with a skipping rope (tripping over the skipping rope and breaking my arm on the concrete below and then going up to my Mum and say that my arm is broken, my Mum didn’t believe me but my Dad did.) Joining girl guides and worked my way up to become a troop leader.  Starting high school, playing at the beach house with sit down swing ball (an invented game of mine.) Been a big sister to my brother and sister and stepsisters and stepbrothers. Graduating high school and getting my teacher aide’s certificate.  Moving out of home and living with two of my best friends before moving into my own house with my own space. Plus having a wonderful and an amazing boyfriend of six years. Meet my first ever CDC family when I was 15.  Speaking at the Australian conference last year which was amazing. Traveling to Australia on my own for the first time by myself. There are some dying tulips that I don’t pick because they aren’t very good milestones to achieve like drawing on Mum’s white duvet with her red lipstick when I was three/four, eating the chocolate buttons off my Nana’s birthday cake (Her 60^th birthday cake in Scotland.  Sorry Nana but they tasted so yum and I couldn’t wait for the birthday cake.)  Trying to poison myself and my younger brother while also in Scotland, I was only 7 at the time.  I wanted the fluoride container that the fluoride tablets were in and so while my Dad was doing something else at the other the other end of the house, I climbed up onto the bathroom vanity found the fluoride tablets and then climbed back down as I was climbing back down the container dropped onto the bathroom floor and cracked open and all the tablets came flying out onto the bathroom floor and Dad came rushing in to see what the matter was and I don’t think I got the container in the end, after all of that effort.

My tulips are sitting on my kitchen bench looking pretty in the sunlight.  I will add more tulips to the bunch as my life continues some dying but some lasting a lifetime.

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.