Tag Archives: online

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. 

Grace Mandeville reveals how to become a star on YouTube

30 under 30 logo

This story is part of 30 Under 30.

 

Grace Mandeville is a popular YouTube vlogger, as well as an actor, model and blogger. However, Grace says she just spends her whole life on Twitter!

As part of 30 Under 30 she talks to us about making videos, attitudes and her top tips for getting started on YouTube. 

How I started doing YouTube videos

I was going for an audition and I was talking to some of the other people in there and they were like ‘Oh I have a show reel on YouTube’. Suddenly I thought, with acting you have to wait for someone to say ‘yes you can have this role’ and tell you what to do, but with  YouTube you can just do it yourself, there’s no waiting.

I was born with what’s called a foreshortened limb. I just say I’ve got one hand – my arm ends just below the elbow. I found it really easy breaking into YouTube as a disabled person. I didn’t talk about my arm for quite a long time, just because I didn’t think it was an important thing to mention. It doesn’t define me. But then I did a collab with another YouTuber and there was loads of horrible comments about my arm on their video. That’s what upset me more – I didn’t think it was fair to them.

So I did a video and started talking about it. My audience has been really accepting and if that means that 75,000 people in the world have changed their attitudes towards it, then I’m happy with that!

Full length photo of Grace, standing in the middle of a road in the countryside.

Attitudes

I’ve had a few negative comments online. I did a video called ‘I have one hand’ and started it by making a joke saying my sister flushed it down the toilet, then I end up telling them the truth. I got a few people commenting saying ‘it’s all good, in a few years’ time you’ll be able to hide that and make your arm look normal again with the prosthetics that are being built these days.’ And I was like ‘no, did you not watch the video? I just said ‘I’m happy the way I am and I don’t want to change it.’ So they’re not exactly trolls but those are the comments that get to me. They obviously still don’t get what I’m trying to say.

There can be  negative attitudes in the TV world too. Not necessarily from actors but more like casting directors. There are a lot of auditions that I go for, where I turn up and they’re just looking for disabled people which is cool because I think it’s a step in the right direction and they need to include more diversity, but I want to go for parts because of my acting not because I have one hand. And that’s a big thing that I want to change so badly. For people to focus on the skills. Basically – just give me a good acting job!

Role models

There are very few disabled people on YouTube so I encourage it as much as possible. Even though I’m one of the few people doing it, I don’t see myself as a role model at all. What a lovely thing though. I do get nice messages from young disabled people. Especially on YouTube because I think it’s such an accessible way to connect people and on Twitter as well.

Head shot of Grace looking off to the side, next to a neon sign of Coca Cola

My top tips for breaking into YouTube

Talk about something you’re interested in

Don’t just talk about make-up because you think that’s a cool think to talk about. I couldn’t talk about make-up but I love watching the videos. Which is why we do comedy.

Don’t make them too long

Make your videos short and be concise. They can always watch more of your videos if they want more of you, but you don’t want them to lose interest.

Be topical

If you want your channel to grow, be topical. We did a sketch on Valentine’s Day that was about Valentine’s Day. So you can tweet it out on Valentine’s Day and everyone that’s interested in Valentine’s Day will watch your video. You don’t always have to be topical but it is good.

Get people involved

Make videos with people you want to make videos. I make them with my sister. Even if they annoy you, they might be better on camera than you!

Go for it

The great thing about it is you don’t need anyone’s permission – apart from your parents if you’re young. So you should just do it. I really wish that I did it like three years before I actually started it!

Grace joins us for a Facebook Live session at 4pm on Friday 17 June.

She 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.

To see more from Grace, follow her on Twitter.

‘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.

I know you’re trying to be nice – #100days100stories

Amanda’s six-year-old daughter Lucia has cerebral palsy. In this guest post from May 2014, Amanda talks about how people’s attitudes can make life awkward for her family. We’re republishing Amanda’s story here as part or our 100 days, 100 stories campaign

Amanda and her husband Anthony with Lucia, Georgia and Roman
Amanda and her husband Anthony with Lucia, Georgia and Roman

The moment other parents hear that Lucia has cerebral palsy, we have to deal with their preconceptions about what disabled people are like. We get people talking loudly and slowly, and people saying ‘What’s wrong with her?’ The answer is that nothing is wrong with Lucia. She just has cerebral palsy, and sometimes uses a wheelchair to get around. ‘Lucia’s wobbly legs’, as our other two children, Roman and Georgia, describe it! You get almost pitying looks from other parents – and you know, I wouldn’t change Lucia for the world.

Support online

I joined Scope’s online forum soon after Lucia was diagnosed, and it has been brilliant. Sometimes, when Lucia is ill or tired, we do feel sorry for ourselves, and having other parents to talk to and keep us positive is a huge help. You can also pick people’s brains for practical advice on things like special needs statements, disabled badges and mobility aids. We were very unsure about getting a wheelchair for Lucia, but people on the forum said to go for it – and it has been amazing. It has really improved our quality of life.

Don’t see the wheelchair

A couple of times, people have said, ‘You know, if you didn’t tell me I’d never have guessed Lucia is disabled’. It’s really not what we want to hear. When it comes to disability, you just adapt – we don’t need to pretend Lucia isn’t disabled. Sometimes we get stopped when we’re out shopping, and people make a massive fuss of Lucia’s wheelchair – ‘Ooh, look at the little girl, look at the wheels, aren’t they pretty?’ I know people are trying to be positive when they give us extra attention, but it’s really awkward for us. We much prefer it when no one stops us, no one cares, everyone just moves on. We know you’re trying to be nice, but we would much prefer if you didn’t even see the wheelchair. Even if you’re saying something positive, I’d respect you far more if you saw the person in the chair instead.

At Scope we believe that disabled people should have the same opportunities as everyone else, so let’s end the awkward.

Find out more about 100 days, 100 stories and read the rest of our stories so far.