Hugh: Life In The Bus Lane

Hugh’s story told by his father, Doug.

Hugh has always been fascinated by, or in Fragile X terms, obsessed with, buses. At 30 he still gets excited whenever he sees a bendy-bus, and he just loves catching them.

Buses have played a very important part in Hugh‘s life since he left school. He was travel trained to catch buses by the Guide Dogs Association in his early teens. He could have caught public buses to high school, but there was only one suitable service in the morning which was always fully loaded. Given his anxiety in crowded, confined situations and the fact that there was no suitable service coming home, we opted to use the Government‘s special taxi service instead.

When he began his two year Transition to Work program at Northside Enterprise in Sydney’s north after leaving school things changed. A range of buses was available to and from the program and he quickly got the hang of waiting for a bus that was not too crowded (even if that made him a bit late), a skill which he still employs. A routine which we got into with him and his brother, Tim, who also has Fragile X, was that he would ring in to say he had caught his bus. He still does this.

As well as in-house pre-employment training and work experience he did through Northside, Hugh did a number of TAFE courses which were great in developing skills and also in helping to determine suitable work environments.

For a number of years now Hugh has been a member of the workforce. He has three part time jobs, all of which he is able to access by bus. One of those is at a wine shop where Hugh unloads and stacks beer cartons, arrange wine bottles on shelves and helps load customers’ cars. He has now been on the payroll there two days a week for over nine years and loves every minute of it. What makes it even more appealing for him is that the bus stops right at the front door!

Hugh has another job at a wholesale greengrocer which he really enjoys and is also two days a week. Both this and his wine shop job were initially work experience jobs that developed into permanent employment.

Hugh’s other job is at Northside Enterprise’s Bushlink, a supported open employment activity where he volunteers one day a week and undertakes weeding, mulching, bush regeneration etc. Some of his NDIS funding is used for the support.

As to sport, Hugh buses himself to gym once per week. He also swims twice per week, but has to put up with being driven since there are no suitable bus services. He enjoys Ten Pin Bowling.

In summer he supports Mosman Cricket team most Saturday afternoons and helps with the drinks and marking the pitch. During winter he is a strong supporter of the Swans and Waratahs. He enjoys fortnightly sailing through his participation in the Sailability program run by Rotary at Middle Harbour Yacht Club.

As to other leisure activities, Hugh uses NDIS funding to enjoy carer-supported group outings. Discos are his favourite; however, he does tend to stand with one ear to the speaker rather than dance. His favourite DJ makes sure Elton John‘s Crocodile Rock gets played at least twice during the evening. He also goes on some one-on-one outings with a carer.

On holidays he enjoys fishing, bike riding and beach cricket.

Whilst his brother now lives in a group home (and enjoys it) Hugh still lives at home with mum and dad. He is, however, very helpful around the house. In particular, he enjoys shopping and is always willing to walk up to the local shopping centre to buy whatever is needed and also spend some time talking to his numerous friends there. He is also very helpful in the garden.

Hugh’s life is not as straightforward as the detailing of what he does might suggest. He has the normal uncertainties and anxieties associated with Fragile X and is on medication for this. Even so, he has the odd panic attack if the anxiety level gets too high, external stimuli get too much for him, spaces get too confined or things don’t go his way! He is a non-stop talker with a fair bit of repetitive chatter and has a number of things that tend to obsess him. He does, however, get away with a lot because he has an engaging smile.

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Fragile X Association of Australia is a registered charity, funded by donations and fundraising. Donations of $2.00 and over are tax deductible. Your donation will help us support families affected by Fragile X, and to increase awareness of Fragile X associated conditions.

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