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Parents-to-be, Cristina and Kym, were eagerly awaiting to meet their bundle of joy, when he arrived an overwhelmingly unexpected seven weeks’ early. Like all newborns, James was precious, yet ever-so tiny, weighing just shy of two kilograms.
Minutes after James was welcomed into the world, he was diagnosed with Down syndrome. While most new parents are overjoyed to bring their newborns home to a well fitted nursery, James found home at hospital for the ensuing months where he underwent two major operations – the first, a duodenal atresia to repair a blockage in his stomach, and the second, an atrial septal defect and ventral septal defect to fix two holes in his heart.
‘James was so little, we couldn’t even find clothes for him. We had to dress him in dolls’ clothes…’, Cristina says.
At the age of two, James was diagnosed with severe hearing loss. To this day, James is non-verbal and has never spoken. Can you imagine never really knowing what your child is needing or thinking?
While James had behavioural issues, lacked social skills, and had no concept of boundaries or dangers around him, life at home was manageable while he was young.
‘We dressed him, bathed him, and prepared his food like any other parents, but he needed full-time supervision,’
As James grew older, he also grew stronger. Life at home became increasingly difficult; an almost unbearable challenge.
‘We lived on the mantra that when James is happy, everybody is happy. Although, James’ happiness meant us living in a cocoon at home.’
At age twelve, James was diagnosed with Autism.
‘It was so hard for us… there was just no respite. We were like zombies; we didn’t get any sleep. I was working full-time, and Kym couldn’t work because he had to care for James. It was so full on with him during the day and with no sleep at night, I didn’t know how we were going to endure it.’
James started taking five different medications to maintain control of his health and behaviour. And despite countless efforts over the years, James was still not toilet trained.
‘We would be paying eight thousand dollars a year for his incontinence aids. Every time I would go to the chemist, they would say “this poor woman!”. We had no funding.’
‘It was a heart-breaking decision to let go of our dear James, but our family needed the help. We knew how happy James was when he attended Variety House, so we knew a forever home with Minda was the best step forward… and it was the only way that we would be able to survive.’
James turned 21 in January, and has now been at Minda for almost a decade. He has overcome many obstacles, is now medication free, and at fifteen, he was toilet trained. He is truly living a happy life.
‘At Minda, James is more independent. He has learned to dress himself with very minimal support and has also learned to eat a variety of food. Now, he communicates with us in his own special way.’
James now lives in Supported Independent Living Accommodation in the community and receives full-time one-on-one support.
‘We are very grateful to Minda, and we hope James can continue enjoying life at Minda… Because when James is happy, we are happy.’