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On the 12th October 2002, just as Bali was being bombed, my beautiful daughter with Down syndrome was having a devastating stroke. Prior to the stroke, Erin was a vital young woman of 25 years. She lived a full life attending a day program and had 2 part time jobs. She loved movies and dancing, could write simple sentences, had her own computer and could send emails. At the emergency department, we were assured that it was not a stroke because she was too young and that it was likely a virus that had similar symptoms. After hours of waiting, at 5am they finally told us she had suffered a massive stroke. Erin was then transferred to a medical ward to be stabilised. By now, she was unable to speak, she was alert and frightened, in terrible pain, doubly incontinent and paralysed down her right side. The next day, I took a sample of the Erin’s former life into the hospital and plastered it around her bed for her to see. There were photos of Erin in a helicopter, on holidays, ballet dancing and bowling. This slowed the silly questions like, “Before the stroke could she speak? Was she continent? How well could she walk?”
After just 3 days, the hospital wanted to send her home. She was still paralysed, could not swallow, could not talk, was experiencing great pain, and had completely lost her memory, including of me, her brothers and step-dad! I asked what would normally be the treatment for a young person who had a stroke and was told that they would go to a rehabilitation ward for intensive therapy. “Look, she has Down syndrome, the road ahead will be very difficult, I think you should just take her home. Because really, how hard do you want to try?” Trying not to look as appalled as I felt, I said, “If she were your daughter, would you be asking me this question?” I explained that I understood it wouldn’t be easy but insisted that we try. Then I asked him directly “You’re not sending her home just because she has Down syndrome?” “Of course not”, he said and off we went to the rehabilitation ward. We had to fight for physiotherapy, for speech therapy and to get a referral to a neuropsychologist. After 6 weeks of rehabilitation, Erin was able to come home. Taking a strengths-based approach, we began intensive music therapy as a stroke recovery measure. This I credit with her return to functioning. Following her intensive therapy, Erin has returned to her post school program but has not been able to return to work. She has regained her enjoyment of dancing, singing, reading and writing. She even delivers Meals on Wheels. Interestingly, if we had done what that first doctor had advised and just taken her home, she would likely still be partially paralysed, needing intensive nursing more than we could support. She would be in high needs supported accommodation, costing the government a fortune over the next 30 years. What an obscene waste of human potential that would be!
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