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 23 he still gets excited whenever he sees a bus, particularly 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 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 have got into with him and his brother, Tim, who also has Fragile X, is that he rings in to say he has caught his bus and again when he arrives at his destination.
Transition to Work at Northside Enterprise in Sydney’s north was a great program for Hugh, exposing him to a number of employment situations and he has three part time jobs that take up four days of his week. One of those is at a wine shop where Hugh has learnt among other things to unload and stack beer cartons and arrange wine bottles on shelves. He has now been on the payroll there two days a week for over two 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!
So what else does Hugh do, or to put it another way, where else does Hugh catch buses to? As to work, Hugh has another job at a wholesale greengrocer which, by the time he gets there and back, takes up a good part of his Fridays. In addition, he also delivers the local paper one afternoon per week and has done this for about five years now.
As to education, Hugh has done a number of special TAFE courses over the past 6 years: Room and Dining Service, Food and Beverage, Kitchen Assisting, Horticulture, Computing and Retail. These half day per week courses have been great for him in developing skills and also in helping to determine suitable work environments. Thankfully, TAFE is on a bus route.
As to sport, Hugh buses himself to and from 10 pin bowling one evening per week and gym once per week. He also swims in squads twice per week, but has to put up with being driven since there are no suitable bus services.
On the weekends in summer he supports Mosman Cricket team and with a bit of help operates the portable scoreboard. In winter he supports Mosman Soccer team. For the last year or so he has been enjoying sailing through his participation in the Sailability program run by Rotary at Middle Harbour Yacht Club.
On holidays he enjoys fishing, bike riding and beach cricket. As to other leisure activities, Hugh enjoys a range of organised group outings for people with a disability. 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.
As a bonus for mum and dad, 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.
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.