Tag Archives: online community

“I want to connect people like me and show them that they’re not alone” – Ellie, the social entrepreneur

30 under 30 logo

This story is part of 30 Under 30

 

Ellie was just 18 years old when she set up CP Teens as a way of reaching out to other young people who feel a bit lost and isolated. The response was fantastic and CP Teens has grown into a vibrant online community. Now, at 21, Ellie continues to pretty much single-handedly run this amazing organisation.

As part of 30 Under 30, she talks about why she set CP Teens up, their progress so far and how the 2012 Paralympics inspired her to make sport accessible to more disabled people.

When I was younger, people at school all wanted to be my friend because I’m a little bit different and children quite like that. But as I got older, by 14 or 15 they didn’t want to be with me anymore. At the time I didn’t really realise I’d become socially isolated because I was concentrating on my studies, but when I left school my friends all went off to university and forgot about me.

I felt like there was nothing out there for people like me, socially and I didn’t have the confidence to go out and get a job. So I decided to set up CP Teens. I wanted to connect other people who, like me, just felt a little bit lost and to tell them that they’re not the only people out there who feel isolated.

The response was amazing

At first I just set up a Twitter account because I was a bit bored! I thought it was going be something I would get tired of after a week and never log back on, but I woke up the next morning and people like Francesca Martinez and Sophie Christensen were followers!

Other young people were getting in touch saying “I’m a teenager too and I feel the same way, it’s so nice to find someone else.” I got so many emails like that I couldn’t believe it. So I just kept going. I set up a website and then a Facebook page and it just kind of grew.

I just thought it was me feeling that way so it was really nice to know I was helping other people through my own experiences. It made me feel less alone. I’ve met some really cool people too and I even hear from people overseas.

Ellie, a young disabled woman, smiling at the camera

Reaching more people

On CP Teens there’s an online service so people can connect and chat. We have social get-togethers and we do a ball every year. Teenagers and young people from across the UK come together. It’s really nice. We have a RaceRunning club which is really good and we also have a partnership with Accessible Derbyshire. They do loads of accessible activities – canoeing, climbing, you name it.

I get a lot of parents [contacting me] who have young children who’ve just been diagnosed so I’ve set up another part of CP Teens called CP Tinies and CP Tweens. It covers 0 – 13 years and children can get involved too. I want it to be for everybody.

In my gap year I got into Paralympic sport and it just changed my life so much. I started to wonder how many other young people like me think can’t do sports. So I decided to do a degree in Sport Development and Coaching. I’ve just finished my second year and I’m really enjoying it. Eventually I’d like to incorporate it into CP Teens and bring my two passions together.

Ellie, a young disabled woman, races on an adapted tricycle on a racing track

Hopes for the future

Ultimately, I want to do CP Teens full-time. I only do it very part-time at the minute because of university, but I think if I put in more hours I could make it so much better.

We already have over 2000 followers on Twitter and more than 1000 likes on Facebook. The website gets about 1000 visits a day which is pretty cool (and scary!) and I get about 25 emails a day too. It’s hard trying to fit it in around university but in the summer it does get easier.

We’re just about to get charity status so that will be really good. At the moment, because it’s not got a registered number, people can be a bit dismissive of it. We’ll also be able to apply for funding and have charity partners so we can do more things. I just want to see it grow and grow, and reach more people.

I get so many emails from people saying “because of CP Teens I’m much more confident and I’ve done this and that”. I can remember, before CP Teens, thinking I was the only person on the planet with cerebral palsy. I think it’s important to let people know that they’re not alone.

Ellie is sharing her story as part of our 30 Under 30 campaign. We’ll be releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Keep up to date with all of our new stories on our 30 under 30 page.

To get involved with CP Teens and find out more about Ellie, visit the CP Teens website.

Descriptive praise – how to get your child to cooperate!

This is a guest blog from Noel Janis-Norton, our online community’s parenting advisor. Here she explains how to use a technique called ‘descriptive praise’ to get your child to cooperate. 

One of the most frustrating things about being a parent is the endless repeating and reminding, just to get our children to do what they’re told. In the heat of the moment it’s easy to forget that children aren’t born knowing that they’re supposed to do what we tell them to do. Cooperation is a habit that they need to learn.

Mum and dad playing at a table with their young disabled daughter

My definition of cooperation is that our children do what we ask them to do the first time we ask, and without a fuss. Thankfully, it’s never too late to guide children and teens into the habit of cooperating. Of course children aren’t robots, so they’ll never be perfect. But it really is possible for children and teens to get into the habit of cooperating 90% of the time. That’s what the programme I’ve developed – Calmer, Easier, Happier Parenting, can help you achieve.

If your children tend to ignore your instructions, or if they argue or say “in a minute,” a good question to ask yourself is, “how can I motivate them to want to cooperate?” You’ve probably noticed that threats and telling off don’t actually motivate, but luckily there are more effective ways. One useful technique is descriptive praise. This is the most powerful motivator I’ve ever come across.

Two young brothers and their sister playing with multi-coloured plastic bricks

Descriptive praise is the opposite of how we usually praise.  Generally, we try to encourage good behaviour by using lots of superlatives: “Terrific!”, “Wow!”, “Brilliant!”, “Amazing!” But superlative praise is so vague and exaggerated that the child is often unclear about what was so great.

Descriptive praise is far more effective. Just describe exactly what your child did right or exactly what they didn’t do wrong, being very specific:

“You did what I asked the first time. You’re cooperating.”

“You didn’t say “In a minute”. I asked you to set the table, and you did it straightaway, without any complaining.”

Mum kneeling on the floor hugging her son

In my book, Calmer, Easier, Happier Parenting, a mother explains how descriptive praise motivated her six and eight-year-old sons to become more cooperative:

“The day after Noël’s seminar, I told my boys to wash their hands for dinner. The younger one hopped up to do what I said. I jumped in with descriptive praise, saying “You’re a first-time listener.” As soon as I said this, his older brother got up, saying “I’m a first-time listener too”, and rushed off to wash his hands. I hadn’t expected my words to have such an effect. The next day my six-year-old washed his hands and came to the table, saying “Look Mum, I’m a no-time listener because I did it before you even asked!”

When you make a point of mentioning each time your children do what you ask the first time, soon they will be cooperating more and more. You can use this strategy to improve any behaviour that’s problematic.  Descriptive praise brings out the best in children, even in teenagers!

In this short blog I can only scratch the surface of this useful parenting tool, so you’re bound to have questions. In my CD called Descriptive Praise, The #1 Motivator, I answer all the questions parents have about putting descriptive praise into practice, and give lots of examples you can use to improve a wide range of family issues.

Dad mixing cake mixture in a bowl with his young daughter with cerebral palsy

As important as descriptive praise is, it’s not the only strategy you’ll need to bring out the best behaviour in your children and teens. But it’s the first strategy. So for the next four weeks, take the Calmer, Easier, Happier Parenting challenge and start using descriptive praise whenever you notice your children doing something right or even any tiny improvement. You’ll see positive results sooner than you can imagine.

Got a question for Noel? Ask her on our online community

Scope’s online community is a year old today!

“Happy Birthday to us … Happy Birthday to us …” We are celebrating the first anniversary of Scope’s online community, and what a year it’s been!

We launched our new community on 3 July 2014, as a place for people connected by disability to find support, share experiences and swap ideas. We wanted it to be a safe, friendly environment, where disabled people, families and professionals could talk. We also hoped it would become a lively forum for discussing topical issues and subjects that were important to disabled people.

We are pleased to say – one year on – it is all that and more! So, let’s take a look at some of our best bits:

From bed-wetting to sex

Emma holding a sign which says - Desperate for a good night's sleep? Ask me anythingWe’ve had several guest experts dropping into the community to answer your questions over the past year. In September, we invited two senior sleep advisors from Scope, who were literally inundated with posts. You can see some of the fantastic tips and advice they had to offer here.

This was closely followed by a Q&A from two bed-wetting advisors from ERIC (Education & Resources for Improving Childhood Continence), which was also very popular.Then we had two “non-expert sexperts” – journalist and broadcaster Mik Scarlet and Emily Yates from Enhance the UK’s Love Lounge, who joined us for a lively Q&A about sex and relationships.

Other popular discussions were hosted by Robert Pearce from Active Nation, who came in to talk about keeping fit, and Kat Dunn from Mind, who answered questions about mental health.People in wheelchairs doing a keep fit class Plus, we had a wonderful team of youth and community workers from Carers Trust hosting a chat about young carers, and a really useful Q&A about employment support for disabled people, led by Tracy Abbott from the Business Disability Forum and our very own pre-employment advisor, Michelle Parkes.

A warm welcome

In addition to our visiting experts, we are fortunate to have a number of regular community advisors, answering your questions in their specific area of expertise. They cover a range of specialisms, from speech and language therapy to assistive technology.

Woman with blonde hair sitting at a desk, looking at her smartphoneOver the past year, we have recruited several new advisors, including Debbie from Scope Helpline, who answers questions on housing and independent living, Richard Lamplough, who is our new employment advisor and  Michelle a Scope pre-employment advisor.

Plus, of course our wonderful community champions, who welcome new members and make them feel at home. Our community champions come from all walks of life – some are parents, some are professionals and some are disabled people. They have all volunteered their time to make sure the community is a safe, supportive place to be.

Let’s have a heated debate!

The community has also played host to some lively discussions in its first year, most notably after Lucy Britton’s blog about hidden disability. Sam CleasbyIt’s a topic that’s clearly dear to a lot of people’s hearts because when Sam Cleasby followed it up with a blog about her #MoreThanMeetsTheEye campaign it got people talking all over again. And when our very own community champion, Hannah Postgate blogged about being a working mother, it went straight to the top of our most-read blogs.

Here’s a tip

One of the most popular features on the online community is our dedicated tips section. Here you can search for tips on just about everything, from travel to technology. All the tips have been contributed by disabled people, parents and professionals, and new tips come in regularly.Lightbulb illustration

Our tips have featured far and wide, appearing in everything from The Guardian and Money Saving Expert to NHS Choices, and The School Run.

Over the past year, we’ve added several new tips sections, including Pregnancy and Parenthood, Dating and Sex, Employment, Employing a PA or Carer and Health and Fitness. We’d love to hear your’s too, so please do pass them on!

We love our new online community so much, we’ve even made a film about it! You can see our community film below. 

Why not join us for a slice of virtual birthday cake on the online community today! 

“We’re all part of a community, both on and offline.”

Continuing our celebration of Volunteers’ Week, we talk to Niki Michael who volunteers for Scope’s online community. Niki is mum to 10-year old Maria, who has Dystonic Quadraplegia, as well as two younger children, aged 7 and 5. Here she talks about what motivates her to volunteer and why she enjoys it.

When my daughter was first diagnosed, the Scope forum – as it was then – was a great source of information and support for me. Ten years’ later, when I found out Scope was launching an online community, I wanted to be a part of it, as I felt might have something useful to give back.

Being a ‘community champion’ involves welcoming new members, keeping an eye on conversations that I might be able to contribute to and promoting the online community to people who may not be aware of it. I log in a couple of times a week, and reply to posts on topics ranging from education to medication. They’re always quite varied!

Maria-blog-4
Niki and her daughter Maria

My daughter is about to go into a mainstream secondary school. She uses a wheelchair and a communication aid, so I’m happy to offer any insights I’ve gained through raising her and championing her rights.

We all have something to contribute

I think it’s really important for families of disabled children to look out for one another, support each other and impart their knowledge. Parents on the community understand completely the stresses and challenges of raising a child with complex needs.

For me, being able to support other parents is incredibly rewarding, and introducing new people to the community – knowing it will be a great resource for them – is great.

We don’t live in isolation, we are all part of a bigger community, both on and off line, and if we want that community to be more tolerant, compassionate and fair to disabled people, then we all have a responsibility to be part of changing it. Volunteering your time for something you feel passionate about is a great of doing that.

My experience as a community champion has shown me that collectively we are stronger , and we all have something valuable to contribute. The community is a really positive space. Even when someone is struggling, the responses from others are always solution-based, which is really important. When you ‘re having a bad day, having someone there to lift you up emotionally or with really solid advice may be just what you need.

You can see Niki in our online community here.

Meet our other community champions and find out more about Scope’s online community.