When Deborah Gundle’s son Zach was born, she knew instinctively that something wasn’t right. At seven months old, he was diagnosed with Angelman syndrome, which meant he’d grow up with profound learning disabilities.
Looking back, Deborah says one of the things she struggled most with was solving day-to-day problems. “Zach was still crawling till he was about seven, and I spent ages trying different things to protect his knees, which were always rough and bruised,” she says.
“Finally, I hit on the perfect solution – goalkeeper trousers for kids, which were padded in all the right places. But Zach was nearly six by then and I couldn’t help wishing I’d known earlier.”
That’s how the idea for Netbuddy came about. Launched in September 2010, it provided a place for parents, carers and anyone supporting people with learning disabilities to share practical tips and information. The aim was to capture that huge wealth of expertise that parents and carers have, and make it readily available for other people to tap in to.
“It would have been so helpful to have something like Netbuddy, with tips and ideas for all the problems I encountered when Zach was growing up,” says Deborah. “I knew other people had probably solved the same problems I was dealing with, and I wished I had access to their knowledge.”
Unlike other forums or chat rooms, all the information shared at Netbuddy was collected and saved, so people could visit the site and search for tips on specific issues, such as bedwetting, challenging behaviour or a trip to the hairdressers.
Parents could talk to other parents who’d experienced similar issues and find out what worked for them; and they could also share their own breakthroughs within a community that appreciated the hard work that had gone into them.
Netbuddy quickly hit a chord, not just with family carers, but professionals too – occupational therapists, health workers, teachers and physiotherapists, all contributing to help people help each other.
“Netbuddy fills a very basic need for practical problem-solving that everybody has,” says Deborah. “We’ve had people writing in telling us that a tip they’ve picked up on Netbuddy has changed their lives. Sometimes it can be a really simple idea, but it might have given them their first full night’s sleep in 10 years or provided the breakthrough in toilet training they’d been desperate for.
And of course when you’re the parent of a disabled person, caring doesn’t end when they become an adult. Netbuddy offers tips for people of all ages, as Deborah points out: “Zach is 20 now, and he’s going through one of the most important stages of his life – the transition from children’s to adults’ services. I value Netbuddy tips now more than ever, and Zach’s new support workers also find them to be an invaluable resource. That’s what Netbuddy is all about – passing on what you have learned to others who can benefit from it.”
In June 2012, Netbuddy and Scope worked together on a national campaign to raise awareness of the issues faced by fathers of disabled children. The campaign was called Dad and Me, and it was to be the beginning of a close partnership between the two charities, who both shared similar goals of supporting disabled people and their families to have fulfilling lives. In January 2014, Netbuddy merged with Scope to become part of the new online community which launches this week.
“This is a really exciting opportunity for us to reach even more people in the same situation as ourselves,” says Deborah. “I know the new Scope community will embrace the essence of Netbuddy and grow from strength to strength, because people in the disability community want to help each other. If they can offer some support or advice that will make someone else’s journey easier, they will.”
“I would just like to say a huge thank you to all our Netbuddy followers and supporters, who have contributed their time, experience and tips over the years to bring us to this point. We couldn’t have done it without you!”
Find out more about Scope’s new online community.