Tag Archives: community

I thought I was the only one feeling like this, then the responses started coming in

Ellie felt isolated as a teenager so she set up CP Teens UK to connect other young people and show them that they’re not alone. Sport has transformed her life too. After spending years being excluded from P.E. lessons at school, she’s now competing at a professional level.

In this blog, Ellie shares her story and tells us why she’s dedicated to making sure that no-one else feels alone, like she did.

I was diagnosed with cerebral palsy just before my second birthday and my parents were told I’d never talk, walk, or function in a ‘normal’ world. Fast forward 22 years, and I do all three and even more! I went through mainstream education, achieving GCSE’s and A-Levels, and most recently a BSc, even though my parents were once told this was ‘impossible’.

Although I coped well academically, school began to get a bit difficult for me when I was around 13 or 14. That’s the age when kids start to form cliques and reject anyone who is a bit different. I felt lonely a lot of the time.

And it wasn’t just the students; teachers would actively discourage me from joining in with things. When we had a P.E. class the teachers would look at me and say: “Shall we go inside and do some homework Ellie?”

At the time, I went along with it because I was so self-conscious. My cerebral palsy is very obvious when I move and I wanted to stay inside and hide away.

Ellie, a young disabled woman, smiling at the camera
Ellie felt less alone after she set up CP Teens UK

I wondered if it was just me feeling like this

I realised that there was nothing out there for people like me, both socially and in terms of going out there and getting opportunities. I didn’t have the confidence to go out and get a job, and my friends all went off to university and forgot about me.

I felt like I was the only person on the planet feeling like this so I set up a Twitter account in the name of ‘CP Teens UK’ thinking nothing would really come of it. Then, the next day I woke up to loads of followers including Francesca Martinez and Sophie Christensen!

The response was amazing. People were getting in touch saying, “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. It made me feel less alone. I’ve met some really cool people.

Since then I’ve set up a Facebook page and a website and it just grew and grew and CP Teens UK became a fully registered charity in March this year.

Then sport opened up a whole new world for me too

Because I was discouraged at school, I avoided sport throughout my life. I wasn’t even aware that there were opportunities for disabled people in sport. Then, the Paralympics changed everything. Seeing disabled athletes at the top of their game made me realise what was possible.

I saw something on Twitter about a Paralympics GB Taster Day and I went along to see what it was like. It was an incredible day with an amazing atmosphere. When it came to sports, I’d always heard: “No, you can’t do that, it’s not safe” but now it was all: “Come on and have a go.”

Sport transformed my life and now I regularly train and compete internationally. I have just been selected for the 2018 World Cerebral Palsy Games in Barcelona. Out there on the track, being watched by hundreds of people, I am in complete control. As a disabled person, I don’t feel that way very often. Being cheered on by so many people who are all on your side is a powerful thing.

Ellie Simpson races an adapted bike on a race track
Ellie competing in RaceRunning

Hopes for the future

It’s important to let people know that they’re not alone. I set up CP Teens because 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.

Now I want to connect people through sport too. I’ve just finished a degree in Sports Coaching and I organise events through CP Teens. Sport is something that brings people together and I don’t want anyone else to be left out like I was.

Too often disabled people struggle to access the right emotional support, advice and information. As a result they feel like no one truly understands, leaving them disconnected and isolated from those around them. This is particularly heart-breaking at Christmas.

Please help us this Christmas by getting involved with our What I Need To Say campaign. Share the message, tell us your stories, and donate to Scope so we can be there for people who have nowhere else to turn.

Being a young carer can be stressful, but Scope’s online community helped me

Catherine is 16 years old, and a carer to her brother and sister. In this blog she explains how Scope’s online community helped her with the frustrations and stress that being a young carer can bring.

Your support can make all the difference. Please give a gift today so that a young carer like Catherine doesn’t have to struggle alone.

Not your average 16-year-old

If you met me, you’d probably think I’m like any other teenager. But I’m not.

I’m a cleaner, a cook, a carer, a homework supervisor, a role model and a shoulder to cry on. That’s a lot to take on at 16 years of age. I’m a young carer, so I look after my brother, who has Attention Deficit Hyperactive Disorder (ADHD) and autism, my sister, who has mental health issues, and my mum, who has ADHD. Phew!

I get up at 5:30am, and then it all begins, waking up the family, getting them dressed, making breakfast, giving them medication. Life is a balancing act!

Catherine and her younger sister
Catherine and her younger sister

Sometimes it all gets a bit much, so I’m glad I heard about Scope’s online community. It’s great because you don’t have to join a waiting list, or travel miles to talk to someone.

Scope’s online community is a lifeline to people like me.

It’s there 24 hours a day and there’s a whole community of people who’ve been through the same challenges and understand and can offer support.

I’ll never forget my first visit to Scope’s online community. I loved it straightaway – I saw how open everyone was about their feelings and personal battles, and I realised I wasn’t alone.

I’ve turned to the community many times since then, and it made a huge difference when my brother started hitting out at me. It was very hard to take when I was trying my best for him. But people on the community helped me see that it was his way of expressing his frustration – it wasn’t directed at me personally. And that frustration has gone away as we’ve settled into a new routine as a family.

The support I’ve received on the community has pulled me up when I’ve been down, left me in stitches when before there were tears. It’s helped me see that it’s okay to go through rough patches, and that I don’t have to feel guilty about struggling.

Looking to the future

There are so many people out there who could benefit from this 24 hour a day peer support network which is why I’m writing this blog. I want to make sure other families don’t have to struggle like I did and you could help Scope offer a lifeline to families like mine.

Catherine typing on her phone
Catherine using the online community from her mobile phone

Catherine is now helping others

I’m doing everything I can to help Scope myself. Now I also volunteer as an online community champion, to make sure people feel welcome on the site. I want to say thank you (times a million) to all supporters of Scope. Scope’s online community has been a lifeline to my family and I know it can be to others.

Catherine’s story shows that young people’s lives can be changed for the better with a friendly and accessible community, available anytime anywhere.

Donate today to support our work with young carers like Catherine.  

You could help ensure a disabled person and their carer always has someone to turn to. 

Setting up a disability community gave me a sense of belonging – Sam

30 under 30 logo

This story is part of 30 Under 30.

 

Sam is a student at Oxford and a Scope for Change campaigner. She is the current President of Oxford Students’ Disability Community and a founding member.

As part of 30 Under 30, Sam talks about the difficulties she faced when she started university, feeling isolated and how setting up a disability community changed things. 

For as long as I can recall, I’ve had a hearing loss. I remember my mum telling my teacher on the first day of school that I couldn’t hear well, and I got my first pair of hearing aids when I was 7. Despite my hearing loss I’ve always been in mainstream education, and coped pretty well. I never had any trouble with the work, made friends easily, and my hearing loss was largely an afterthought. This changed drastically when I left for university.

For the first time I began to think of myself as disabled

The switch from a small classroom environment was jarring, and I found I couldn’t hear at all in lectures. At school I’d been taught by the same teachers for years, but at university I had new tutors every term and not all of them understood my hearing loss. The majority of socialising took place in pubs, bars, or at dinner with the rest of my year group – I had a great group of friends, but spent most of our time together desperately trying to pick out their lost words from a solid wall of sound.

I didn’t know how to ask for help, and I felt like I was the only person struggling. At the same time my hearing began to deteriorate faster than it had ever done before, and at the end of my second year I found out I was now profoundly deaf. For the first time I began to think of myself as disabled.

I was becoming increasingly isolated

I’d never known anyone with a disability growing up. I’d met one other deaf person at university, but nobody in our social circle was disabled. I found myself becoming increasingly isolated – I couldn’t talk to my friends about losing my hearing as they had no experience of it themselves, and it was less upsetting to stay in on my own than to go out and struggle to hear the conversations. I was desperately unhappy.

Sam smiling, holding up a sign that says We Unite

Setting up the Oxford Students’ Disability Community

About a year and a half ago, one student at the university sent round a Facebook message inviting other students with disabilities out for a drink and a chat at a local bar. I didn’t know anyone, but I decided to go. About 20 other students turned up, and when we got talking and it was like a light had been switched on.

All of us were having a hard time, with tutors and peers not understanding our disabilities, and some of us had been experiencing discrimination because of this. Before, we’d all been convinced our troubles were individual, but it was now strikingly clear that this was a problem for many other disabled students at the university. We banded together, forming a working group of disabled students – the Oxford Students’ Disability Community (OSDC).

We began to spread the word, communicating with the university to improve support for disabled students, running social events, and starting a Facebook group where students with disabilities, mental health conditions and specific learning difficulties could ask each other for advice or support. We became the student union’s official disabled students campaign, and before long we found ourselves with a community of more than 400 people.

I no longer feel alone

For me, that sense of community is so important. So many of us had found ourselves isolated by our disabilities and the way others responded to them. I had never felt more alone than when my hearing began to decline, but once I began to meet other disabled students I realised I was anything but.

We have a wealth of shared experiences and whilst our disabilities are different, I’ve found we can relate to each other in ways no one else has done before. That understanding is so important in a culture that so frequently ignores and alienates the disabled, and I feel so grateful to have found it. OSDC has given me some of my closest friends, helped me find my voice as a disabled person, and fostered an overwhelming sense of belonging.

To find out more, visit the Oxford Students’ Disability Community’s website. 

Sam is sharing her story as part of 30 Under 30. We are 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.

We need to do more for disabled survivors like me – Ashley

30 under 30 logo

 

This story is part of 30 Under 30.

Trigger warning: mentions sexual assault, rape, suicide attempt

Ashley is a campaigner. As a survivor of sexual assault, Ashley is passionate about bringing about change for disabled survivors, who are often overlooked. Through Scope for Change – Scope’s training programme for young disabled campaigners – Ashley has teamed up with others to set up Disabled Survivors Unite. Their goal is to combat domestic abuse and sexual violence against disabled people.

As part of 30 Under 30, Ashley talks about the need for disabled survivors’ voices to be heard, shares their own journey and talks about their plans for the future.

I am a survivor of sexual assault

I’m going to share my story because I don’t want others to feel ashamed or alone. I was drugged and assaulted in London when I was 21. Due to my autism, I often go non-verbal under stress, but I was very clear that I did not want to have sex with this man, this stranger. What I wanted was of no importance to him. Afterwards, I fell into a deep hole that no one seemed prepared to help me out of. The knowledge wasn’t there for someone like me, a rape victim with autism, chronic illnesses, and ill mental health.

And so the months went by without proper support and, upon hearing the case would not go forward, I tried to kill myself. I remember waking up in the hospital bed with an apologetic doctor explaining that England didn’t have any support set up for people like me. My family watched as my physical health deteriorated and I retreated further into my head. No one knew what to do.

I found support from other survivors

Two years later, I made it to a survivor’s writing session and found a group of people just like me. Most had disabilities of varying kinds and it was the first time since my assault that I felt a sense of purpose. We decided to band together and start something – we came up with The (re)Storytellers Project.

The idea was to create a template to be used at universities for writing groups of survivors and victims to support each other, as the waiting lists for Rape Crisis counselling can be incredibly long. Through this group, I discovered that the most important thing to me was to protect the countless others who had been through what I had.

Ashley at a garden party, smiling with a drink

Working with other young campaigners

Through Scope for Change, a training programme for young disabled campaigners, I learned just how valuable our voices are as young disabled people. We were taught how to utilise social media, film, and various other campaign tactics to get our voices out there; but, most importantly, I think we all came away more confident in asserting ourselves and our varying needs.

It’s hard to express just how important Scope For Change is to me as a disabled person who has spent most of their life incredibly isolated – to be in a room full of fellow disabled people who want to change the world is absolutely glorious.

Why we set up Disabled Survivors Unite

I struggle every day with the knowledge that my situation is not an uncommon one. As I’ve become more involved with the disability community, it’s been made very clear that sexual violence is an epidemic that is rarely discussed with us in mind. It’s my goal to change that.

People like me often go unheard. Disabled people are desexualised to such a degree in the eyes of the public that the possibility of us being victims doesn’t even occur to people. When I was raped, my disabilities were ignored by those in charge of helping me.

At the Scope For Change residential several of us realised we wanted to campaign about similar issues. As a survivor myself, I’ve had many difficulties getting specialised support and couldn’t stand to let others feel alone in that. We want Disabled Survivors Unite to become a non-profit organisation built around fighting domestic abuse and sexual violence against disabled people.

Our plans for the future

Our first step towards our goal is The (re)Storytellers Project. With Disabled Survivors Unite, we’re taking that idea to the next level and collecting stories, letters, and notes of support, anonymously or otherwise, to better amplify the voices of disabled victims and survivors.

We hope that sharing these stories will both create a feeling of community for those involved and bring about change in the way that disabled victims and survivors are viewed and treated.

If you have been affected by the content of this blog, you can contact the Samaritans or Scope’s helpline for support.

To find out more and support Ashley’s work, visit Disabled Survivors Unite.

Ashley is sharing their story as part of our 30 Under 30 campaign. We are releasing one story a day throughout June from disabled people under 30 who are doing extraordinary things. Read other stories from 30 Under 30.

Disability Innovations: Connecting isolated groups with Mifinder

Disability Innovations is a blog series that gathers some of the most interesting new products and services that aim to make disabled people’s lives easier. We hope it will inspire more innovation in the disability field.

What is Mifinder?

Mifinder is all about connecting people and building communities, targeting isolation and encouraging networks of support. It is a free app where you sign up, register your profile and are then able to ‘find’ and connect with others around you based on their location. Sound familiar? The unique thing about Mifinder is that it is aimed particularly at groups in society with often higher rates of isolation, and people connect with each other based on a shared ‘life experience’. This could be a visual, hearing or other specific impairment, or an experience such as being new to an area or learning a language. The app enables people to find like-minded others around them wherever they go based on their exact location.

How do I use it?

Mifinder app on iPhoneAfter downloading the free app (currently only available on the iPhone) you create a profile, involving selecting the communities that you belong to and uploading your profile text and photo. You can then select the communities that you are looking to engage with, and you will be shown the profiles of the closest 120 users who fit that criteria, in order of how far away they are from you at that time. You can see other people’s profiles, and if you would like to connect and chat with them you use the app’s instant messenger. Chief Executive Officer (CEO) and founder of Mifinder Gabriel Saclain hopes that the initial online conversation will prompt real offline social experiences, such as going for a coffee. Security is a high priority, and no specific locations are given out until people have decided that they want to meet.

How did the idea come about?

The idea came from Mifinder CEO and founder Gabriel Saclain, who had been working with isolated communities in Brighton. He was struck by some of the challenges faced by groups he worked with, acknowledging the effect of isolation on some communities and the importance of social support for mental well-being. He wanted to create a way for disabled and diverse communities to engage more easily, and while it initially focused on diverse ethnic groups, the app has evolved to focus on specific life experiences. So far over 300,000 users with disabilities have downloaded the app, and over 2 million connections have been made.

Why focus on life experiences?

The life experience groups include people who have visual or hearing impairments, those who have experiences of cancer, those who use a wheelchair, and many others. Mifinder is driven by the principle that people who have gone through similar experiences can have greater mutual understanding, and therefore can offer more support to one another. Support could also come in the form of advice and information. For example if someone with a hearing impairment moved to a new place, they could connect with others with similar experiences and seek advice about accessible venues, local support and information about the area. Mifinder is keen to emphasise that the focus is on community and friendships as opposed to dating, and previous features around dating have been removed from the app.

What is next for Mifinder?

Mifinder is continuously evolving based on what users want and what the creators think would be helpful and exciting to provide. They hope to expand from connecting people to each other, to connecting people to events, groups and organisations around them that relate specifically to their experience. One way of doing this will be to partner with charities and existing support groups. Following from this they hope that people will start to create their own meet ups and groups for people around them. They have loads of exciting plans, so make sure to keep checking out the Mifinder website.

Why we like it

Without assuming that people are only willing or able to connect with those who share similar experiences to them. Mifinder recognises that there can be increased understanding and support when there is a shared significant experience. It provides a way for people to meet in a social environment and share stories and advice, and is driven by the desire to build communities. We like how it recognises the very real issue of isolation, but the potential for what people can gain from it is so wide-ranging.

This blog is for information only. Scope does not endorse this product or service. We try to make sure our information is up to date and accurate at the time of publishing.

To tell us about a Disability Innovation, please email innovation@scope.org.uk.

What will you do differently in 2015?

Made any New Year’s Resolutions yet? If joining a gym or learning Spanish isn’t really doing it for you, why not take a look at some of these fun ideas.

 No lycra involved

  • Recycle that sweater. Take all your unwanted Christmas presents into your local Scope shop. We won’t tell Auntie Maureen.
  • Women-drinking-teaMake new friends. Join the online community and chat to others in similar situations. Find support, share your experiences and swap ideas with other other people connected by disability.
  • Discover your inner creativity. Write a blog for us. Tell the world about your secret hobby or a campaign you feel passionate about.
  • Enjoy guilt-free shopping. Sign up to Give as you Live and a percentage of every purchase you make at thousands of online stores will go to Scope.
  • Backgammon-and-Bridge tournamentGive us a tip. Had a eureka moment recently? Don’t keep it to yourself. Add it to our fantastic tips section and enjoy the warm glowy feeling of passing it on.
  • Take up backgammon. You might even want to join us for the 16th annual Backgammon and Bridge Tournament on 22 March.

Step it up a gear

  • Fran-and-molly-bakingBake a difference. Hold a cake stall at your workplace, school or local club and donate the proceeds to Scope. If you email us your name and address we’ll even send you a cookie cutter!
  • Rattle a tin. Collect for Scope in your local community. If you can give up an hour a week or a day a week, we’ll provide you with a collection tin, a Scope T-shirt and a letter of authority.
  • Volunteer for Scope. If you’re unemployed, volunteering can help boost your skills and confidence, and improve your CV at the same time. We’ll give you all the Woman writing a willsupport and training you need.
  • Make a will. Don’t forget to leave a little something for Scope. Find out why gifts in wills are so important.
  • Use your mobile phone to donate. Give £3 a month from your mobile phone bill. You can skip a month or stop your donation at any time.

Become a superhero

  • RideLondon-Single-man620x349Ride London-Surrey. Cycle 100 miles from the new Queen Elizabeth Olympic Park in London, through Surrey’s stunning country roads and hills. This incredible event takes place on 2 August but you can guarantee your place now.
  • Become a mentor for a young disabled person through Scope’s First Impressions/First Experiences service. Email us for more information.
  • Abseil down the Queen Elizabeth Olympic Park Orbit. One of London’s top iconic visitor attractions, take in the awesome views as you descend the Olympic Park Orbit on 7 March.
  • Become a campaigner. Want to make a change? Get involved in community campaigning. We’ll sBen-Nevis trekhow you how.
  • Climb Ben Nevis. Take on one of the highest mountains in Britain … or join a trek up Mount Kilimanjaro. Or how about six days trekking and camping in Machu Picchu, Peru?  Find out more about Scope’s trekking challenges.

Still stuck for inspiration? Visit the Scope website for more ways to get involved

International Day of People with Disability

As 3 December is International Day of People with Disability, and this year’s theme is technology, we thought we’d celebrate by talking to some of our online community members, who have been brought together by technology.

Hannah, parent

Hannah Postgate with her daughterScope’s online community has been a revelation for me as a parent of a disabled child. I was at the start of my journey when I discovered Netbuddy, now part of Scope. It made all the difference, as I could post a question about something serious or silly and someone out there would have a tip or an idea to help.

For many parents of a child with a disability there are not the physical networks available locally, simply because we are few and far between, which can be very isolating. Technology has allowed us to connect with other families and make friends through communities and forums like this.

It’s been a lifeline and a laugh I must say!

Noah, disabled community member

Noah, community championForums like the Scope community are a great place to share ideas with other disabled people and hopefully help others gain something that will enable a greater quality of life. It feels good being able to help people, and you never know what you will get back.

The community is a safe place for disabled people to discuss things that perhaps their other friends wouldn’t understand. It reduces the feeling of being alone, trying to curve your way though life around the many challenges that having a disability brings.

The community is open 24 hours a day every day of the year, and you never know what you will get in reply from the hundreds of members that have such a wealth of different experiences. It might be that latest app that is changing their life for the better, or a new off-road mobility trike that’s helping them get out about and a little fitter. When people share their experiences they can inspire others.

On the other hand if you are can’t see the wood for the trees and need a some inspiration on how to move forward, or simply want to vent your frustration, you can post on the community for some support from people who understand.

Catherine, young carer

Catherine (young carer)I believe technology is a brilliant and efficient way to communicate amongst friends, peers, family and even potential ‘internet friends’.

As a young person, it’s a way to be taken seriously and that’s why I think Scope’s community appealed to me. The idea of an online community is it’s a way of providing support and security for people who both need and deserve it.

You can share tips, tricks and advice to the benefit of others, to make their lives better, overcoming issues such as distance. Also, I feel more relaxed at approaching a professional in this manner. I love the Internet, and I look forward to becoming more a part of this helpful community!

 Debbie, Helpline information officer

Debbie Voakes, Helpline Information OfficerWorking on the Scope helpline we’re used to dealing with issues on a one-to-one basis by phone or email. When the online community launched, we were slightly nervous at the thought of providing information and advice on such a public platform. But, now we’re all signed up and actively monitor and respond to posts daily.

I volunteered to become a community adviser in my lead role of Housing and Independent Living and it has become a very enjoyable way of reaching a wider audience. It also helps me with the research I carry out for my role which helps keep my knowledge up to date.

It has become increasingly difficult to find advice agencies particularly in the areas of Welfare Benefits, Housing and Social Care. We hear from people every day who are struggling to get advice about really important issues. To be able to give information on a public platform like the Scope online community means we are able to reach people we may not have previously been able to reach by phone or email.

It’s great when other community members join in with the various discussions and its brilliant seeing lots of people’s different perspectives on a particular topic. Most of all, I think people like seeing who they are talking to and knowing there is a real person behind the answers given. I hope that all of our community members feel as much a part of Scope as I do.

Chris Peak, Community advisor

Chris Peak Assistive TechnologistTechnology is changing around us daily and it offers disabled people  opportunities that generations before could only have dreamed of. As an adaptive technology specialist, I  find it extremely exciting.

A couple of years ago I heard of the wonderful work a small charity called Netbuddy was doing in offering on-line support, advice and tips across a whole variety of topics. As someone who worked with people with complex difficulties and impairments, I was keen to offer my services as an assistive technologist, and now continue to do so through the new Scope community.

In my experience it seems that sometimes people just require confirmation of an idea to point them in the right direction, or a community of people in a similar circumstance who can offer meaningful support.

I think the new community Netbuddy and Scope have created is a fantastic opportunity for people to support each other through technology, with friendly, caring,  non-biased advice and ideas.

Join us on the online community, where you’ll find discussions about the things that matter to you. Plus you can search hundreds of great tips and advice on everything from technology to travel.

‘I was so stressed about my son’s autism that my hair fell out’

Heather was struggling to find the support she needed for her son Nicholas and was under a huge amount of stress, then she posted a message online asking other parents for help, and a woman called Jane got in touch.

New research from Scope just found that two-thirds of parents have had difficulty getting the support and services they need for their disabled children, and as a result are left feeling frustrated, stressed and exhausted.

Like many other parents with disabled children – this comes as no surprise to me whatsoever!

Heather and Nicholas
Heather and Nicholas

My 13-year-old son Nicholas has severe autism and learning disabilities and I’ve had endless issues getting the support I need for him. We’ve had to fight every single step of the way.

We even had to fight to get him a diagnosis in the first place – neither of the local hospitals wanted to take him on! Presumably because of the cost implications…we got passed from pillar to post and had to get our MP involved in the end.

But one of the worst times for us as a family was when Nicholas was placed in a school that wasn’t right for him.

It wasn’t the right environment for him at all. It got to the stage where he was doing nothing but lying on the floor each day and lashing out because he was so frightened. It was so upsetting.

We kept saying: this isn’t good enough! Over and over again. But nobody would listen.

I was so stressed about it all that I lost a lot of weight and got alopecia and my hair fell out. I saw my GP and he suggested anti-depressants but I didn’t want to take them.

In the end the school wanted to expel him because they couldn’t cope – but they still couldn’t find a school for him. So I got him signed off sick and took him out of school altogether.

In desperation I put a post on an online forum asking for advice from other parents of disabled children about finding the right school for Nicholas.

By chance a woman called Jane who lives in my area got in touch. She described her own son and it was like she was describing Nicholas.

She let me know that her son had just got a place in a brilliant school nearby, a school which I’d never even heard of.

Jane was amazing and helped me through how to get Nicholas a place there – it was a battle but we did it.

It is a school specifically for children with autism and it’s brilliant, he loves it. The change in him as been incredible.

If I’d never posted that message I would have never met Jane – and we’re still in touch now.

Scope has launched a new online community where parents of disabled children and disabled people can share their experiences and get guidance and practical tips from other parents and disabled people.

I’ve agreed to be one of the ‘online champions’ for the site and hope to be able to help people out when I can, like Jane helped me.

But I don’t have all the answers – and I expect I’ll be looking for more advice myself too at some point.

Chatting online to other parents certainly isn’t going to solve all your problems.

But at the very least it can be a huge relief to vent, and have some contact with other people who understand what you’re going through, instead of bottling things up.

Please do get involved in Scope’s online community. Because as well as asking for advice and tips you might be able to give it too.

And I know from experience that as well as getting support, it can be really rewarding to be able to say to someone who is struggling – I’ve been in that situation, I’ve dealt with that, and I’ve come out the other end.

A proud mum inspired by her twins to run the marathon for Scope

Guest post from Emma who has been inspired by her one-year-old twins Ava and Louie, who both have cerebral palsy, to run the Virgin London Marathon in April and raise funds for Scope. 

My beautiful twins Ava and Louie were born nine weeks prematurely. At birth they weighed just 4lb 1oz and 4lbs and spent 29 days in the neonatal unit at Hull Royal Infirmary receiving specialist care.

Louie, the smaller of the two spent more time in Intensive Care and the High Dependency Unit. He had to be put on a machine to assist him with his breathing, but after two weeks he joined his sister in the Special Care Room.

Traumatic

Baby in intensive careIt was the most traumatic time I have ever experienced. Going into labour so early, then not been able to hold your babies and seeing them all wired up in incubators. It was horrific.

I couldn’t go into Louie’s Room when he spent time in the High Dependency Unit without my husband going in first, I was so frightened and it was really hard because we didn’t get to see Louie’s face for a week as he had to wear a mask to help him breathe.

I cried all night

When my husband left the hospital on the nights I was still on the maternity ward I would just cry all night because I didn’t have my babies in my arms. I still get flashbacks now.

Phil holding the twins Nine days before the twins were discharged from hospital we received the news from the neo-natal paediatrician that routine ultrasound scans had revealed that both Ava and Louie had developed cysts in their brains, which were likely to have been caused by being premature.

The doctor told us that this would most likely lead to cerebral palsy, which the twins were later diagnosed with. They said that the severity of the condition would not be known until later on, but they told us that Louie’s injury was more extensive than Ava’s.

The doctor broke the news to us that the ‘worst case scenario’ could be that the twins would be wheelchair users and have very complex needs.

Shock

The shock of the diagnosis was difficult to accept, our babies seemed to be doing really well in hospital and the news felt like being hit by a bus.

I can’t remember getting home that night and my husband had to call for an emergency doctor as I had a anxiety attack. What made things so difficult was the fact that Ava and Louie were still in hospital, so we didn’t have them for comfort.

It sounds terrible, but there was a period of grieving for the life that we were expecting with our first children. Without the support of our amazing family and friends I really don’t think we would have got through it. We would wake up in the morning praying that we had just experienced the most horrific nightmare, but it was real.

We got some information about how the disability may affect the twins, and I’ve found chatting with other parents on Scope’s online parents’ forum to be really helpful, it’s so much harder to talk to people who haven’t been through something like this themselves.

A brighter future

The good news is that Ava and Louie are now doing well and we have all settled into family life.

Louie’s condition affects all four limbs and only Ava’s lower limbs. These are improving with the help of regular physiotherapy sessions, and they also have on-going support from occupational therapy and the community paediatrician.

The family togetherOur consultant at the hospital is pleased with how they are both progressing and Ava and Louie are giving us the answers, positive ones, on what the future holds. We have never experienced happiness like it, they are wonderful and although they have obstacles in their paths they are two determined little people.

We still struggle and there are times we really have to fight with the black cloud that’s overshadowing all our lives, the uncertainty is hard to manage at times.

Louie had an epileptic fit just before Christmas, at the time we weren’t sure what it was and it was so frightening seeing our child in this way. We had been told due to their diagnosis they could develop epilepsy and now he has. Ava has been fitted with splints to wear on her lower legs to help her movement in her lower limbs.

We are more positive now, and milestones in their development mean so much to us. Ava is now sitting up and rolling over, and Louie has just started to roll and his sitting is improving. We celebrate all their achievements, even if they might seem small to others, they are unbelievable and we are so very proud of them!

People think I’m mad for doing the marathon

I work part-time at the council and of my friends and family think that I’m ‘mad’ to start training for a marathon when I already have so much on her plate. But I’m finding the training therapeutic.

Emma and the twinsAlthough we still have to an uncertain future to some extent, we are blessed each and every day with Ava and Louie, they are our beautiful children and each and every day they make us so happy, they truly rock our worlds and the love we have for them is just indescribable.

I am running my first marathon for my two beautiful children Ava and Louie and this fantastic charity Scope, which together with our fantastic support from our family and friends, has made Phil and I not dread the future, nor the words cerebral palsy.

You can sponsor Emma for her fundraising efforts.

Have you got your own place in the London Marathon? Join Emma and be a part of Team Scope and have the amazing feeling of making a real contribution to Scope’s work with disabled people and their families.

What do people want from an online community?

Back in October we announced that Netbuddy was joining Scope. We’ve spent the last few months talking to members of the Netbuddy and Scope communities about what they’d like to see on the new joint community. We’ve done this through an online survey, emails, phone calls, Skype and face to face interviews.

Here are the common things people told us they wanted from the online community:

Shared experiences

Two women talking over coffeePeople spoke about the desire to connect with people in a similar situation, in a variety of different and changing ways. Some people came to the sites looking for emotional support, for others it was about getting practical advice – but the common need was to find people “like them”. We want the new community to help people make these connections.

The ability to help others

It’s not all about receiving support – people also had a strong and genuine desire to help others through their contributions online. We want to make it easy for people to ask for and give help by letting people discover areas of expertise, find people who need support and enable people to acknowledge when content has been useful.

Immediacy and timeliness

Neon sign which says - open 24 hours
(photo by Leo Reynolds)

With sites like Twitter and Facebook, immediacy has become the norm.

The people we spoke to expected immediate responses when they posted online so an online community can’t just run 9am – 5pm, only on weekdays! People expect their posts to be sent out immediately and be notified if anyone responds straight away. We will need to make sure people can access advice from the community whatever the time or the day.

Ownership

People felt strongly about the need to belong to the community. This might mean that staff will occasionally need to take a step back, and give people in the community more control over how it’s run and how it develops. Doing this research and involving people from the community in the process is the first way we’re doing this, and we will involve the community in anyway we can as we progress.

Users of the Netbuddy site told us how much they valued the site champions and experts, so we hope to continue these roles and grow the number of champions supporting people to use the community.

A safe and trusted space

(photo by rightee)
(photo by rightee)

Whilst people wanted ownership and immediacy, they also wanted to be able to use the community to suit their personal situation. This might mean discussing sensitive personal issues, not suitable for sites like Facebook, without fear of abuse or prejudice.

We’ll work closely with the community, champions, experts, and staff to make the community as safe, welcoming and friendly as possible.

Thank you

Thank you to everyone who has taken part in the research so far. We’ve learnt so much over the last few months and we will continue going through all the feedback as we build the new community.

We’ll be posting more updates here on the blog and we’ll share any opportunities to get involved. Our focus for the coming months will be on building and moving across the forums from Scope and Netbuddy onto the new Scope community. If you are part of the community – we will be in touch. Later in the year we plan to start moving the tips and events content into the new community.

Thanks also to Sam Menter and Ant Mace for conducting the research with us and providing their fantastic insight and expertise.

If you have any questions, please comment below or you can contact me by emailing community@scope.org.uk.