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Because every family deserves the blessing of a child with Down Syndrome...

4:11:00 PM

a helping hand :: Netbuddy

Emma Sterland is the website and community manager of Netbuddy a unique social networking site which is taking the international special needs community by storm.

When my brother Ben, who has Down’s syndrome, was born the advice given to my parents was to put him in an institution, and ‘wipe the slate clean.’ This was England in the 1950s, and support for parents of children with special needs was almost non-existent.

Fortunately, my parents ignored their doctor’s advice, and Ben became a valued and much-loved member of our family. It wasn’t easy for them, however. In the absence of today’s support networks, they forged their own, often lonely, path.

My mother could have done with Netbuddy, the social networking website and charity I now manage for parents of children and adults with learning disabilities. Described by many as a ‘lifeline’, it offers practical solutions to a whole range of everyday issues – from brushing teeth to challenging behaviour.

Netbuddy crowd-sources tips and advice from people with first-hand experience of special needs – parents, carers, teachers, therapists. Tips are updated daily, and organised into quick searches such as ‘Dressing & undressing’, ‘Personal hygiene’, ‘Feeding & mealtimes’. There is also an interactive forum where people can discuss specific practical problems they are experiencing or make online contact with resident professional experts.

The idea behind Netbuddy was to capture that huge wealth of expertise and knowledge that parents and carers have, and make it easily available for other people to tap in to.

More than just a chatroom, Netbuddy is a ‘by you, for you’ resource, whose success is almost entirely down to the special needs community. It works because people in the special needs community want to help each other. If they can offer some support or advice that will make someone else’s journey easier, they will.

Just two years old, Netbuddy’s audience has grown largely by word-of-mouth. For parents, carers and family members, Netbuddy fills a very basic need for practical problem-solving. It is full of inventive, no-nonsense advice, and it is available 24/7. For professionals, the site is a goldmine of useful advice from people with daily experience of special needs. They can use it to pick up tips and ideas for themselves, but also to pass on to families they support.

We’ve had people writing in to us telling us that a tip they’ve found 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 is constantly growing and evolving, and we hope to be able to reach many more parents and carers who could benefit from it in the future, so please pass us on!

 Here are just some of the great tips you’ll find on the site:

Bottle feeding
As our daughter, who has Down's syndrome, was bottle fed from the beginning, I tried to use lots of different shaped teats to exercise more muscles and give her more sensations.

Sleep sac
If your children toss and turn a lot, which means blankets don't stay on, a sleep sac is invaluable. You may want to continue using one well after the usual age as it keeps them warm and helps avoid chest infections.

Large changing mats
These can be very expensive to buy.  Try a waterproof picnic blanket instead, much cheaper and easy to keep clean.

Glasses for Down's syndrome
George has Down’s syndrome.  We found that glasses don’t fit the shape of his face well so we changed the 'bridge' to one long plastic piece, which fits better.

Adjusting shirt sleeves
Like most people with Down's syndrome, my son has fairly short arms. I adjust his shirt sleeves to fit, by cutting them neatly across halfway down and making a new seam. Tying to adjust them at the cuffs is far too fiddly.

Please visit Netbuddy and be sure to share them on your blogs, facebook, twitter and any other social media!

a helping hand is a special feature on the RR Blog. These will be supporting tools from the experts... or articles written by experts for parents!

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