Paid work possible? Absolutely!
Twin brothers Stuart and Matthew have Fragile X syndrome – a genetic condition that causes learning disabilities.
Neither can read or write well, and they can struggle with anxiety when things are unexpected or unpredictable. But finding full time paid work was always the goal, as dad Craig explains:”We could picture them in the right kind of work,” he says. “Routine, manual, regular, with the right setup. We just didn’t know what that might look like.”
As it happens, both have ended up working in the same place, but in very different jobs.
From college Stuart was offered a place by Project Search, which provides employment and learning opportunities for young people with a learning disability or autism. Matthew stayed on in college for a further year.
“We were disappointed at the time,” Craig admits. “But on reflection, it was the best thing that could have happened, as they went from being twins who did everything together to independent young men leading their own lives.”
Stuart had work experience at Borders General Hospital through Project Search, then with charities in Galashiels before joining Green Works, a social enterprise providing gardening services, as a volunteer.
By now Matthew had also been accepted by Project Search, although practical work placements had to be replaced by online learning because of Covid.
“Matthew was up every morning, taking classes on the laptop,” says Craig. “I had no idea he was able to do that. The pandemic was harder for Stuart, as there wasn’t much he could do until the world opened up again.”
Through Project Search, Matthew found work at a local hotel, where he has now worked for 3 years as a kitchen assistant. One of a team of around a dozen porters and chefs, he works rotas and shifts, including nights and weekends. His parents help him keep track of his rotas.
Before he began, Craig offered to speak to the staff team about Fragile X, to help them understand Matthew better. It was the start of a positive relationship that, 18 months ago, led to Stuart joining too as a member of the gardening team. Unlike Matthew, his hours are fixed. Craig’s connection with the staff means he can keep an informal eye on how things are going, which he describes as “creating an invisible bubble around them”.
Both Matthew and Stuart are full time, permanent employees on the same basis as everyone else on the staff. They have the same rights and entitlements, are members of the company pension scheme, and regularly socialise with their colleagues. Mostly they make their own way to and from work, and their confidence has grown.
“With the boys, you get totally reliable workers who are conscientious, love routine tasks, work hard and are fun to be around,” Craig says. “They have greater self esteem, they’re financially independent and they are more mature. They get up in the morning, come home tired at the end of the day, and are paid for what they do. Just like everyone else.”
· Chat to your young person about work in general, not specific jobs.
· Make a list of their strengths and what they have to offer.
· Focus on what they can do, not what they can’t.
· Take small steps that build confidence gradually, and be patient – developing skills takes time.
· Look for chances to try new things, e.g. volunteering or lending a hand.
· Remind them it’s normal for some things to not work out – it doesn’t mean you’ve failed.
· Don’t be afraid to approach possible employers, and offer your own suggestions for how things could work.