Fragile X Australia newsletter - March 2017

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Home among the Gum Trees: An American Family’s Amazing Australian Adventure On one of our first confused and jet-lagged August mornings in Australia, I heard very loud chirps, hoots, and other unfamiliar noises coming from what I thought was our son’s ipad. I was about to tell him to turn down the volume on his nature show when I realized the sounds were outside my window. It still didn’t seem real that we were very far from our home in California, at the start of a four-month stay. Our family had an unforgettable experience living in Australia while I was serving as a Visiting Scholar in the Department of Social Work at the University of Wollongong. Our 10-year-old son Quinn’s superpowers are his joie de vivre and many passions. He loves animals, garbage trucks, trains, Play-Doh, music, Peppa Pig, and much more. He also has full mutation Fragile X syndrome. As in our life at home, his disability added joys and challenges to the experience. His fondness for animals prompted us to spend a lot of time at Symbio Zoo and the Botanic Garden, and to see the Great Barrier Reef, the Phillip Island Penguin Parade, and Churchill Heritage Farm. His interest in music led us to take a risk and bring him to his first large concert on our last day in Australia, to see the Wiggles. He enjoyed every minute, once he realized it was really Anthony, Emma, Lachy, and Simon on stage. We have learned that the best way to manage the challenges of our son’s disability is through preparation. We began planning for the trip several months in advance by inquiring about schools and the placement process for an international student with a disability. We were very grateful to be offered a place in a support class at Figtree Public School. Quinn appreciated the swimming lessons, Peter Combe music, and lessons on Australian currency. We helped our son adjust to our travel plans by talking about visiting Australia a few months before we left. Initially, he said, “No Australia!” but once we told him he could feed kangaroos, he began to ask, “See kangaroos?” many mornings long before our departure. We split the long plane flight into nine- and six-hour segments by stopping in Hawaii. We took an evening flight for the long segment, gave our son his usual bedtime medicine, put him in his pajamas, and packed as many small toys and treats as we could carry.

our arrival. In general, we found the transition to Australia to be relatively easy. It took us all a few weeks to adjust, but once we did, we greatly appreciated the opportunity to live in another country. We were able to enrol our son in affordable additional needs vacation care, hire experienced babysitters, and book a same-day appointment with a doctor when our son had a minor medical issue. We appreciated the availability of public services and spaces like toilets, transit, and beautiful parks and beaches. Though our visit was fairly lengthy, we know we have seen only a small fraction of the country. We hope to return before too long. When we first learned that our son’s disability was more than a temporary developmental delay, we grieved over the experiences we thought we would not be able to enjoy. We have since realized that many things are possible with patience and preparation, even great adventures like living in Oz for a time. Sarah Taylor, MSW, PhD is an Associate Professor of Social Work at California State University, East Bay. She served as a Visiting Scholar at the University of Wollongong from 1 Sept—15 Dec 2016 to collaborate with Dr. Amy Conley Wright on research related to advocacy in parents of children with additional needs. Please feel free to email Sarah at: sarah.taylor@csueastbay.edu

One of the biggest worries we had was about our son’s eating habits. Quinn is extremely picky due to sensory aversions, and required feeding therapy to learn to chew solid food. When we traveled to Germany for a month without his favorite fruit bars, our son ate very little, was often cranky, and lost one or two kilos. Since he is slim as it is, our pediatrician advised that we should always have a supply of the fruit bars when traveling. I posted in the FXAA Facebook group asking if anyone had seen our son’s favorite bars in supermarkets near where we would be staying. Several people very kindly responded and checked their grocery stores. Unfortunately, though many other types of delicious-looking fruit bars were on the shelves, Quinn’s preferred ones did not seem to be available, so we shipped four cases to my colleague’s home before Page 10


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