Tips for life

Deborah Gundle, founder of the charity, talks to about her work.

Deborah Gundle’s son has severe learning difficulties and she very quickly noticed there were lots of gaps in the support provided to parents and carers while she was bringing him up.

The problem was that she had little time to do anything about it. Her son is totally dependent and his condition – Angelman syndrome – means that he doesn’t sleep.  “We had support, but it’s been very, very hard and exhausting,” she says.

Deborah has two other younger children, now aged 17 and 15, and it was when her youngest started secondary school that she was able to have the time to put all her experience of the obstacles and hurdles she had faced and how she had overcome them into action.

With Linda Goldberg who ran a welfare organisation in Scotland which had helped her son and who had later moved to London, she set up

Deborah had been writing a book and Linda persuaded her that it should instead be a website. Initially the two women wanted to create a special needs website, but they soon realised that focusing on tips from other parents and carers would be more effective. “We realised that focusing on one thing and not trying to do everything so that people knew what they were coming for was the best way,” says Deborah. She started with tips that worked for her and asked others for their tips. It took 18 months of development before the site was launched. As soon as it went live it was easier to get people to see what the site was trying to achieve.

Deborah and Linda had no experience at all of setting up a website, but Deborah had set up a small charity for excluded teenagers in Camberwell previously and had also started a small manufacturing company before that.

Very soon after the site launched it started receiving emails from parents and carers welcoming it. “Word spread quite quickly and people asked why they had not known about it. The reason they hadn’t known about it was because we didn’t exist before!” said Deborah.

People assumed, she says, that it was a bigger operation than it was. In the first years there were just three part-time staff working from home.

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Being creative is a charity and as such has had to raise its own money and work on a limited budget. For that reason it has not been able to afford traditional methods of marketing such as  advertising and taking out stands at shows.

“We had to learn things such as how to use things like social media and be more creative. For instance, we have done guest blogging on other sites and swapped blogs. We categorised our tips and gave them to different publications and we also run campaigns that try to change society,” says Deborah. The campaigns include one aimed at encouraging fathers to negotiate for flexible working with their employers so they can take more of a role in caring for their special needs children. “We are trying to raise awareness and show employers that they are not losing anything by being flexible. We had seven part-time members at one point all of whom worked from home. Everyone gave so much and we definitely gained from this,” she adds.

Deborah says it’s hard to pick out particular tips which parents find useful since something that might not be useful to her situation could change someone else’s life. For her, for instance, anything around sleep disturbance was “gold dust”. However, one which has proven very popular is some practical advice on teeth brushing. “It can be very difficult to get people with learning difficulties to brush their teeth. It might appear to be a very everyday activity, but when you can’t do it it can be very difficult,” she says, adding that other popular tips include getting people with learning difficulties to take their medication.

Deborah, whose oldest son no longer lives at home, says being a parent of a child with a learning disability means she can see immediately the value of the tips. “I know what a difference it must have made to the people who send in the tips to have worked them out,” she says. won a major award last year – the FDM everywoman in Technology Inspiration of the Year Award. Deborah says this gave the team – now four part-timers and her and Linda – a boost. This year’s awards opened for entries last month.

She hopes to be able to inspire others in a similar position to her to feel they can achieve anything. She said: “People might be a bit daunted, but you learn and grow at a pace and technology has made setting up an organisation so much easier. We hope to inspire a ‘can do’ attitude in others.”

*The 2014 FDM everywoman in Technology awards are now welcoming entries. Click here for more details.

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