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.”
Top tips· 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. |
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Everyone’s a winner
Kindness Buddies brings together disabled people in East Renfrewshire to learn new skills, be involved in their community – and tackle loneliness at the same time.
Members of the Buddies team visit older people in the community to pick up their shopping lists, then go to the supermarket, before returning to unpack everything and put it away. A support worker accompanies each pair of Buddies to make sure everything goes smoothly.
Along the way new relationships are formed, barriers are broken down and a very practical support need is met.
The service started with three Buddies and two customers, but now supports around 30 customers over a 5-day week. Other areas are getting their own teams up and running.
The Buddies get to know many customers individually and are ideally placed to spot any needs that might arise. Time for a chat is part of the service, and for some older people this is a highlight of their day. Meanwhile local supermarkets are increasingly aware of the project, and the teams are easy to identify by the Kindness Buddies logo on their trollies and bags.
For customers, the benefits are obvious. For the Buddies, learning the skills involved and providing a service others rely on is a huge boost to confidence and self esteem.
Definitely a win-win!
Thank you to Kindness Buddies for the photos
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Window on the world of work
Kate arranged for her 16-year-old son Connor to do an 8-week work experience placement at Eden Court Theatre in Inverness. The impact on his confidence was immediate and far beyond her expectations. Now he’s looking to the future – and so is she
“We can rely too much on professionals – sometimes we just need to get on and do it ourselves, then tell other parents so they go: ‘I could do that’.”
Deciding what to do for the rest of your life is a tall order at 16. Yet advice and support for young people seems to depend on them knowing the unknowable.
To Kate it was obvious Connor, who has autism, would have to try a job first to know if it might work for him.
“If he couldn’t be a professional gamer, Connor said he’d like to be either a cinema projectionist or a sound and light technician,” she says. “I explained the job might sound great, but he would need to get an idea of what it would involve for him.”
She wasn’t sure who to contact about work experience but in the end went straight to the top, emailing the chief executive of the Eden Court Theatre directly with her request.
It takes courage, but Kate believes parents should be bold and simply ask more often.
“The worst they can say is no – in which case we’re no worse off than we were before,” she says. “The more often you do it, the more you realise people do want to help. Places like Eden Court may even prefer to deal with parents directly, because it can be more flexible.”
Connor is shadowing the theatre technicians for around 2 hours a week, hands on as a full member of the team. Kate takes him to the theatre and stays on hand, but rarely sees him: “I sit and read a book. He just disappears with the rest of the team.”
In his first week Connor was setting up lights, then moving flooring and building decking for a graduation. At Christmas, he helped with sound and light for the school show. Everything is practical – the team show him how to do a task, then leave him to get on with it, but are there to supervise and help if it’s needed.
“This is the first time he’s ever been enthusiastic, about anything,” Kate says. “He has very low self confidence and has struggled a lot with anxiety, but when he’s doing this he just beams. He’s like a different person.”
The experience has had a huge impact.
“A real plus is he can see people have come through different routes – some have been to college, others have learned on the job. It’s good for him to know there are different ways people get to where they want to be. It gives him hope.”
The impact has been felt at school, too.
“He’s never been able to attend school more than 6 hours a week, but now he’s trying all kinds of things he never thought he could do. He’s talking about doing a course in sound engineering,” Kate says. “The experience has given him a really practical vision of how he might manage in the future. It’s also given him different insights about friendship and how it works – as a member of the team, everyone looks out for each other, and they’ll have your back. Until this Connor didn’t really have friends apart from online. It’s given him social skills he was lacking before.”
Kate hopes it may be possible to extend the placement, although she knows many other young people will also be looking for this kind of experience. But she’s convinced the skills and confidence Connor is developing will be invaluable for the future.
“The main thing is, it’s opened his eyes to what’s possible and given him hope there will be things he can do,” she says. “I gave up work several years ago to support Connor, but I’m now volunteering at the local hospice and hoping to transition back into work next year. So hopefully both our lives will change.”
A big thank you to all at Eden Court Theatre in Inverness for their support and for the backstage photo
