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Hi I am new to the group but here is a short account of my journey to date. I am mum to a wonderful daughter she is now 24 years old and has a rare genetic condition which has caused her to have a variety of medical issues and a severe learning disability. At the beginning of my journey I worried would she walk or talk or be able to look after herself, but I have discovered the greatest problem was her behaviour described as challenging, those supporting her lacked the knowledge and skills to understand that the behaviour had a function, often pain, or sensory issues, anxiety, trying to escape from situation she couldn't cope with. Instead of asking "why is she doing this" we now ask "what is she trying to tell us". We have created a Communication Passport for her that give her a voice, and acts as a two way conversation between her and all who support her, if you want to read it you can view it on our website. www.mycommpass.com Her passport has made a huge difference to my daughter and to all those involved in her care.