James’ story

This is James. James is my only son and the youngest of my four children. He lives with me and one of his three sisters. James spent his primary and high school years at the Kalamunda Senior High School Education Support Unit. James is now 29 years of age. Not long after birth James was diagnosed with a rare chromosome disorder called Cri-du-chat syndrome (CDC). Called Cri-du- chat because it resembles the cry of a cat! James is small in stature for his age this being another characteristic of CDC.

This syndrome affects James’ speech and upper respiratory system resulting in a low immune system and therefore the reoccurrence of infections. He has a very high pain threshold so there are times he can have a severe infection and I am totally unaware until it has taken hold. James also has in-toeing of the feet and this is the cause of balance issues that may then lead to falls. James requires constant support from me as he is unable to do up zips, shave, tie up his shoe laces, does not know the value of money of how to cross a road safely. If James is unsure of what’s happening in his day he can become very agitated and pick at his fingers until they bleed. But James is unique and brings with him a wonderful ‘out there’ infectious happiness to his life and to those who come in contact with him. He loves his Play Station, Music, and Dancing, Movies, U-tube, and using Google to search out places of interest he would like us to visit. James has travelled to Singapore, Bali, and the Gold Coast with me in recent years.

The many life skills I am teaching James at home get reinforced with his Community Inclusion Program at Crosslinks. With the CI Program James is able, with the Support Worker support to progress the skills necessary to reach his goals and he can do this while socialising with his friends. This program also provides the opportunity for a busy social life through the Recreate & Participate (RAP) Community Social Club. James also has the ability to give back to his community with many years of volunteering at the Kalamunda History Village where he is a valued and participating member of their volunteer group. I was told James would never walk, never talk, never be able to understand ‘sign, so would have limited means of communication. I was told to be prepared for James to have a life of high and complex support needs! With all of the above being said, those who know James can contest to the fact that he never stops talking, and ‘yes’ until you get to know him, he can be a little hard to understand but in his own way of communicating, he gets his message across. The fact that he is hard to understand is the cause of much distress to James because he knows what he is trying to communicate.

If you add to the CDC that James also has ADHD you can only imagine the bundle of energy and hyperactivity that he exudes. James can often be heard in the corridors of the Crosslinks building singing on the top of his voice and strumming his air guitar. Those who suggested a life of high and complex support could not have got it so wrong.
We enjoy our family’s home and life. James loves spending time with his sisters and his young nephew Thomas who thinks ‘Uncle James’ is just the greatest. As his mother I also consider James to be the greatest and I learn so much from him every day.

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