Posted 11:25AM on Thursday 08 March 2018
Jill and Eric, who live near Ballinamallard in Fermanagh, are building a new house next door so that Matthew (28), Ben (26) and twins Theo and Joel (16) can become more independent adults with the support of Positive Futures, while remaining in the familiar surroundings of the home where they grew up.
All four have Fragile X syndrome, which has a range of features including intellectual disability and challenging behaviour. Those with Fragile X can also display some of the characteristics of autism, but the two conditions are quite different.
Eric said: “We don’t have any close family nearby and we’ve always felt that we needed to provide for the boys’ future if anything should happen to Jill or to me. We decided that it would be less traumatic for us to move out than for them.”
The couple’s lives have revolved around the needs of their four sons since the boys were born, but they ran up against a persistent problem: the standard support on offer from Health and Social Services was a “one size fits all” model, taking little account of individual requirements. They rejected the idea of drug treatments to control behaviour, instead adapting their house to create a more relaxing environment. Having seen some of the work of the Camphill Community, they looked at the effects of architecture, opening up the roof to allow more light in and introducing colour.
“We also introduced the boys to the rhythms of nature,” said Jill. “They know Christmas, Halloween, Easter, birthdays and other highlights of the year. We’re lucky to have 21 acres of land around us, so we spent a lot of time planting trees and creating paths for go–karts and trikes. There’s nothing nicer than a vase of flowers that the boys have gone out and picked for the house.”
Their approach was vindicated when they met a consultant psychiatrist who had previously seen Matthew and Ben and who said they had “200% improved.”
The couple have also taken inspiration from L’Arche, a worldwide federation whose aim is to see people with an intellectual disability recognised as full citizens.
Another major change was the introduction of Positive Futures and our brand of highly personalised individual support. Our Operations Manager in Fermanagh, Kerry Mallon, said: “Everything we do is person–centred because we know that no two people – even brothers – are the same. We don’t see problems – we try to see possibilities.”
The four brothers will eventually receive 24/7 support from Positive Futures. We now need to attract top–class staff to keep up with the requirements. We offer full on–the–job training for suitable candidates.
Said Jill: “The girls from Positive Futures who work here are just angels.”
Eric echoed her view: “Even though Jill and I work with our own children, I really admire people who choose to work with other people’s children. Positive Futures are developing further what we created for the guys, and they do a tremendous job.
“It has enabled the boys to reach the point where they know that all their needs don’t have to be met by mum and dad. That allows us to spend more quality time with them.
“There will also come a time when we’re no longer around, and we need to help them develop more independent lives of their own.”
While some people might wonder how Jill and Eric have coped over the years, they see it in a more positive light.
“It’s been worth every heartache along the way,” said Jill. “The boys have been a blessing. It’s not a journey we would have chosen, but faith has helped us through the hard times.”
If you are interested in finding out about working with Positive Futures, see the “Get Involved” section of this website.