Here at Lifelong Literacy I’ve met many people of varying abilities over the years.
I’ve worked with people from all over the Autism Spectrum, have laughed and joked with Down’s Syndrome kids and adults as well as people with a range of other conditions along the way.
I had speech therapy to help but it wasn’t until I started school that I learnt how to read my speech developed quickly.
My childhood was awesome because I was involved in what my family was doing like going sailing, fishing, camping, bike riding, hiking through the bush, girl guides skiing until I gave up when I was 13 because my hips started hurting.
My name is Rachel and I have Cri Du Chat but there is something rare and special about me, I am a mosaic which means a percentage of my cells are affected with Cri Du Chat but not all of them are affected so about 30% of my blood cells are affected. When I was born I had the cry but the doctors didn’t pick up on the fact that I had Cri Du Chat until I was 2 in a half.
I have a large deletion at 13.1 so I am missing 90% of my 5P arm but I am consider to be mild. The reason why I got tested for Cri Du Chat is because I had a small head and I wasn’t talking a lot.
Most individuals who have 5p- Syndrome have difficulty with language.
I have a ginger and white cat called Fanta who is afraid of strangers and my family but she loves my boyfriend of nine years.Years ago, it was common to place children with 5p- Syndrome in institutions with other severely developmentally delayed individuals.During the early 1980s, research revealed that those raised in family settings with the benefit of early intervention programs made remarkable progress, far exceeding the expectations of doctors who first described the syndrome.She can shake and nod her head for yes or no and she can sign ‘more’.She makes her feelings and desires very clear, despite her lack of verbal language.