Mum’s testimonial: Parents are the real experts says learning disability charity founder

Deborah Gundle talks about www.netbuddy.org.uk and how other parents are the key to making it work.

Deborah Gundle and son

When my oldest son Zach was born, I knew instinctively that something wasn’t right.  At 7 months old, he was diagnosed with Angelman syndrome, which meant he’d grow up with profound learning disabilities.

Looking back, I wish I’d asked for more help from my family and friends in those early years, because I know now they would have been happy to give it. It’s often hard for other people to help, unless you tell them exactly what they can do.

One of the things I struggled with when Zach was little was how much time and energy I’d spend 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. 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. It would have been so helpful to have some sort of practical handbook, with tips and ideas for all the problems I encountered when Zach was growing up. But of course nothing like that existed.

I launched www.Netbuddy.org.uk two years ago with the aim of capturing that huge wealth of expertise that parents and carers have, and making it easily available for other people to tap in to.  I wanted to create a place where people could submit and search for tips on a whole range of practical issues – everything from bed-wetting to coping with challenging behaviour.

That’s what Netbuddy is all about – passing on what you have learned to others who can benefit from it.

I am delighted by how quickly the site has taken off, and by the strength of the community we have already developed at Netbuddy.  The site has also hit a chord with professionals– teachers, nurses, therapists, support workers – who come into contact with people with learning disabilities through their work. They use the site to pick up tips and ideas for themselves, but also to pass on to families they support.

If you have a child with a learning disability, get in touch with Deborah Gundle from www.netbuddy.org.uk.

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