February 19, 2013

The Special Needs Community

I love the Internet, I love that I can share a story about Alex and people from all over the world can read it. I love it when I see "google translate" in my stat counter.

The special needs community is a large international community and I truly appreciate all the information that is so relevant to me in so many places so far away. Recently I received the following correspondence from Katherine about  Netbuddy a network of parents and caregivers in the UK. I checked it out and thought it inspiring. Here is their information:

Parents are the real experts says learning disability charity founder
Deborah Gundle talks about her self-styled ‘mumsnet for special needs’ www.netbuddy.org.uk and how other parents are the key to making it work

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 knew other people had probably solved the same problems I was dealing with, and I wished I had access to their knowledge.

Health visitors and professionals were, of course helpful, but unless you have direct experience of learning disability – unless you’re living with it day-to-day, you can’t really know what it’s like.

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.

Of course, when you’re a parent to someone with special needs, caring doesn’t end when they become an adult. So Netbuddy offers tips for people of all ages. Zach is 18 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 any advice I can get from other parents who have already been through this process.

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

Netbuddy works because people in the learning 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 am delighted by how quickly the site has taken off, and by the strength of the community we have already developed at Netbuddy. But in some respects I’m not surprised by it because Netbuddy fills a very basic need for practical problem-solving that everybody has.

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.

Netbuddy 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.

Last month, Samantha Cameron hosted a reception for Netbuddy at Downing Street. She described Netbuddy as a ‘vital resource’ for families who are affected by learning disability. It was wonderful to have that recognition, not just from someone so high-profile, but also from another parent. Having had a child with special needs herself, she really understood how important Netbuddy was.

It does feel like we’ve come a long way very quickly, but we still want to reach a lot more families and carers who could benefit from using Netbuddy. As parents, we have a goldmine of useful information at our fingertips, and it’s up to us to pass it on.


To find out more about Netbuddy, visit www.netbuddy.org.uk

I think she speaks for all of us as we connect and share our visions for our children and their futures. Thanks to all of you for all you do!

No comments:

Post a Comment

Thanks for your note, we love hearing from you!