The film "Rain Man" was a bane during my childhood. On one side it raised awareness of autism during a time when no one had a second thought to ask you to leave a restaurant if they felt the behaviour was not well mannered - by this we mean keeping still. The huge minus was the assumption that my brother being autistic had a gift of some kind beyond us mere mortals. Everyone is an individual with autism being a spectrum.
I had to explain that there was a huge range of abilities for people with autism, and my brother mentally was on the severe end of that scale though able bodied. He could not speak, much less add up numbers. He could remember faces but not names let alone read a telephone directory. He would never be able to make a phone call or take a message. He would not be able to cross a road safely - ever. He had learning difficulties and this was for life - his safety, well being and happiness would always be dependent on others.
But he can laugh and smile. He finds things funny, and loves to dance to his favourite pop music - no matter where he hears it and gets me to join in. His emotional intelligence is the one that makes him sociable. It has to be however on his terms. If he wants a hug for three minutes, then it is a hug for three minutes. He wants to be on his own, better give him space immediately.
He wants coffee at 3:30 am then it is coffee then, which he can never make himself. Severe learning difficulties mean exactly that - the ability to learn rules, consequences, manners and routines are out the window. Which, quite literally he once was when four and someone knocked on the door to say he was on the window tile roof ledge of the upper floor. My mother did not believe it as I rushed up the stairs. He laughed when he saw me, but was too terrified to make his own way back. So my nine year old self went out the window to bring him back.
When I started caring for him full time just over three years ago, the rapport we had before I went to university came back. Once, junior school teachers were concerned like my brother I wanted to be asthmatic too. This was misunderstood as jealousy - it was actually a feeling of being invisible in the world given the focus my brother needed. Given the range of his health needs and ambulance rides as a child, grateful for all the days I have with him now.
I knew once mother hit retirement age I would become a family carer. So I lived my life - went to university, socialised and partied hard, travelled the world and met interesting people. Whether in local politics, national conventions or international conferences I have made my voice heard whether people wanted to hear or not.
Social media and blogging is a life line to a world outside of caring. As a platform to mass communicate, and in particular network with others, it is invaluable. A chance to share perspectives and inform others. There is no need for family carers to be invisible to the outside world.
I watched "Rain Man" only in my young adulthood. Dustin Hoffman was excellent and the arc of Tom Cruise's character interesting for how brothers bond. Though "What Is Eating Gilbert Grape?" rings more true for me. My brother would stay in a bathtub if you had gestured to stay there, even if it turned freezing. The conflict between living your life and family. Leonardo deserved an academy award then.
The reward for looking after my brother is beyond measure. Raising awareness makes the challenge that little bit easier.Suggest a correction