As a sibling of a sister with disability I would like my experience to be shared and to raise an awareness that us as siblings require support, support that is vastly different to that which our brothers and sisters with disability are accessing.
There are a handful of people that truly understand this life apart from the parents, grandparents and guardians of persons with disability (PWD), there is a chosen group of us that are siblings, we learn early on in life that our childhoods are enriched and challenged in vastly different ways to those of our peers.
Christmas, usually this is a time of exciting anticipation, joy, a time for peace on earth and goodwill to all… unless you are the sibling of someone who lives with Autism, and this day can be filled with your sibling’s stress, major change in the daily routine, sensory overload, screaming and meltdowns.
This is just a personal example of one of many days in the lives of families all over Australia that go untold, while the other children in the street sit with their families unwrapping gifts and sipping on early morning coffee, my parents scramble to make peace, ensure the gifts for us children remain intact and the noise of the day does not cause the neighbours to phone the police.
On the flip side my sister has grown into a real character, a sister no one could possibly ever ask for it on paper. She is funny, quirky, blunt and always tells the truth… about everything, yes everything.
I spent some of my school holidays attending sibling support groups, these were programs that were structured for siblings of PWD, they were usually held in a camp style environment or function building led by youth workers specialising in this area.
My brother and I enjoyed attending these camps as we felt connected and with ‘our people’, other children with a silent understanding of how different our lives were to other children our age, this provided us with a sense of unity, building up our self-esteem and providing us with a chance to discuss our lives and sibs in a safe and supportive environment.
During one of our sessions the task was to draw a portrait of our sister highlighting all of the things that make her unique, in the border I sketched all five or so foods she loved to eat on rotation, this was her thing, it was her obsession with food, she was happiest when she was in her food bubble.
I feel very lucky to blog personal stories and to have a career involved with advocating for others on this journey in turn is very special. I have my sister to thank for fueling the fire that has led me to these opportunities and this interest of all things disability related.