Care Assistant

So, what will your day look like?

About Me: I am known to vomit so I have to have a slow rate and flushes very slowly to decrease the risk of me vomiting. I am Non-verbal but I have started to use an Eye Gaze at home and at school to help me : Epilepsy Breathing Other Late Infantile Metachromatic Leukodystrophy

Hello I am 8 Years old. I live at home with both of my mum, my dad, my twin sister and my baby brother. We have CCTV and sensors around the property. I also have CCTV in my bedroom. When I was very young, my mum noticed that I was not hitting my milestones and insisted to my GP that there was something not right. I was then diagnosed with a life limiting condition called Late Infantile Metachromatic Leukodystrophy. This is a genetic disorder which affects my brain and has started to affect my nervous system so my motor skills have gradually deteriorated. I attend the hospital on a Wednesday afternoon with my mum as I am part of a new drug trial. I receive treatment via IV and the medication is shipped from abroad especially for me. I also have other conditions such as Mild Global Development delay, server motor impairment, constipation and a sleep disorder. I have routine chest percussion physio which is really important and this is completed daily when I am well, this really helps to clear any secretions I have. I also have a cough assist machine which I use morning and night during my chest physio routine but only my parents are to use this machine. Throughout the day I am required to have suction that being oral suction with a yankeur or Nasopharyngeal suction but this is if I have a lot of secretions which I can not clear. I still attend school which I really enjoy and care staff will support me at school. I also enjoy interacting with others. You will come for a ride in the family car as my mum will take us there but we come back home in the school minibus, please interact with me and talk about the surroundings. I am Nil by mouth and have a PEG Tube in my tummy and this is where I have my food and medication, this also supports me to gemmunicate. This is new to me and my family so you will need to allow me time to answer and what I am trying to say. I really like you to talk with me, read books and even best I really like to have cuddles. I have grown a lot so if I would like to have a cuddle, you can hoist me to the floor and place me between your legs. I have my own box of toys which I really enjoy, My mum will have activities that she would like me to complete through the day. I do enjoy watching cartoons, however you will need to communicate with my parents as they like me to watch for a certain amount of time. I do really enjoy being around my sister but sometimes I like to be alone but please communicate with my mum on what she would like for me to do to keep me engage in activities. Thank you so much for looking after me, if you need any support please ask my amazing parents and they will help you with anything

What You’ll Need

• To be reliable and punctual
• Have excellent communication skills
• Show patience, kindness, and a calm temperament
• Be able to respond sensibly and calmly in all circumstances
• Promote choice, respect, and dignity
• Be observant and willing to gain a deep understanding of me and my needs
• Want to be part of my everyday life—filling it with joy, encouragement, and security
• Be able to record information accurately, clearly, and promptly

What I’m Looking for in Support

I’m looking for someone who can fill my day with joy.  I respond best to calm, gentle, kind, and compassionate people who are patient and non‑judgemental. please be my friend as well as my professional carer. Always give me choice, keep me safe, and help make my days comforting and happy. I really look forward to meeting you.