My hope for Crystal Raine is that she will have a full and happy life where she feels loved, accepted, and respected, and is cared for with dignity and compassion.
She is not always well and has some very difficult health issues which make her quite difficult to work with. At Queen Butterfly Foundation, the team has taken the time to understand Crystal’s idiosyncratic behaviours and accept that she is acting out as a means to communicate some discomfort. She is often in pain, and this results in her punching her temples, her nose or mouth, biting her arms, pinching herself or someone else. It can be very intimidating for the untrained person to face, but a closer look will reveal yet another ear infection, she may be thirsty, constipated, or tired of lying on her bed or standing at her standing frame.
Being a blind, non-verbal child, we have learned to pick up on cues that she gives us and quickly respond to whatever need she wants met before she damages herself.
Queen Butterfly facilitators have helped me discover new ways to help Crystal and have encouraged Crystal to participate more and more in her own care. She follows simple instructions and uses some basic communication devices to participate in group work. When I think of Crystal, I synonymously think of Queen Butterfly and the hope it represents for me as a parent. I’m grateful that Crystal has a safe and interesting environment in which to thrive and be happy. There are always open arms and loving hearts at her school, ready to receive her and bring out her laughter through fun activities again.
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