Podcast Episode 54. All around us are people working in their local communities to make the lives of young people with additional needs better. This weeks podcast guest Sue Clark is one of these people. Sue talks about her work with Pegasus Playscheme which is located on the south coast of England.
Pegasus Playscheme provides activities for young people with additional needs in the summer over a 3 week period. The purpose of this is to help young people participate in independent activities and provide a place where they can meet their friends and even make new friends. Pegasus aims to reduce the isolation that many young people can experience.
Sue explains not only the history of Pegasus but provides from her own experience practical advice and insights into how to set up a similar scheme, which could provide a social outlet for young people in your own community.
Sue also discusses the practicalities of fundraising and the logistics of running a scheme like Pegasus. Sue provides a great example of what can be done by a few people with dogged determination and perseverance. Sue says every town needs a Pegasus but as she is also happy to say she learned while she was doing. Sue reminds us its the getting started that is often the most daunting thing, but the rewards are well worth overcoming the fears.
Show Full Transcript
DEBRA: Welcome to episode 54 of the Journey Skills podcast. A slightly shorter episode this week but one which touches on some really important topics like isolation and loneliness and how important it is for our young people to go out and meet friends and have a social life.
I’m talking to Sue Clark, MBE, which in case you’re wondering what MBE stands for, it stands for Member of the Most Excellent Order of the British Empire, and it’s given to people who have made a significant contribution to their local communities. Once you listen to Sue you will understand why she has one of these because her passion and commitment are all too obvious.
Sue is the chair and fundraiser for Pegasus Playscheme which provides summer holiday activities for young people with additional needs. What Sue does is talk very honestly about something we all worry about to some extent and that is the social lives of our young people. As she rightfully says, many young people with additional needs simply don’t have the same social freedoms as their peers or even their siblings. My daughter, for example, doesn’t go out with friends independently in the same way her older sister did at the same age. And as Sue talks about, this can lead to isolation, loneliness, and for some young people, depression. As parents, it’s hard to find the right balance on this because I think we all want to give them freedom but we don’t want to put them in any position where they might be vulnerable. So schemes like Pegasus are invaluable in providing that safe environment that lets them develop independent skills and to make new friends.
Now Sue calls this the Pegasus Playscheme but I don’t think it actually describes what this program is all about. Once you’ve listened, you’ll realize that what they actually do is provide the social lifeline for young people who without something like Pegasus might end up spending their summer holidays quite isolated for people their own ages. Unfortunately, this scheme only operates for a short period each year, although Sue talks about the ways they’ve created a more regular space for young people in her local area.
Sue has been involved in this scheme for quite a while, so she’s able to offer some really excellent advice on how to start something like Pegasus albeit on a smaller scale.
It’s people like Sue who believe in our young people achieving more that makes me realize that even after I’m not around, there will be people out there that my daughter can rely on.
DEBRA: This week I am talking to Sue Clark who is the chairman and fundraiser of the Pegasus Place Game which is based on the South Coast of England.
Can you tell us a little bit about yourself, a little bit about your journey and how Pegasus got started?
SUE: Well I did not actually start Pegasus but fell into it really is you do sometimes. I’m a mother of three and Jamie, our youngest was born 27 years ago and turned out that he had downs syndrome. And I was determined that it wouldn’t stop us being a family and it wouldn’t stop Jamie achieving his full potential. And we just treat Jamie like we treat our other two children. Although he has a lot of health issues and there are things he can’t do but to his own ability he has a full happy life.
He used to go to Pegasus when he was 5 and as a parent, I used to drop him off and spend time, quality time which was much needed, with my other two young children. A couple of years went by and the original committee that had started this in 1986 had all given as much as they could give. There was a meeting with the parents and I found myself, I don’t know how because I had no skills, a fundraiser.
Then, Pegasus was smaller and needed less funding. I think it was £20,000 a year when I started, that’s what we needed to do what we do. Now, we need £70,000 each and every year to do what we do and we’ve tripled our numbers. What we do basically is for three weeks in the summer, we hire 3 minibusses and we take children with severe and complex needs aged 8-21 and they go out each day in their own age-appropriate groups, with suitably qualified staff. This year the staff we used had all started out as 14-year-old volunteers and they love Pegasus so much that they come year after year. Many of them book their summer holidays to come back for three weeks to work at Pegasus, which is pretty remarkable.
Each child in the group has a one-to-one teenage volunteer which is also very important for their integration. Isolation through the summer is the worst thing I think for children with disabilities. And that’s what I found as a parent and that’s why I truly valued Pegasus.
Then the following year, I found myself chairman which again I never imagined myself as chairman of anything, let alone a charity. And it’s just gone from strength to strength, really. At Pegasus we’re like a big family really, but we do need that £70,000 every year so that is my passion; finding that money it is very very difficult as you can imagine. So I tend to apply to lots of grants and trusts all over. You know, a little bit of effort and we have huge outcomes.
So Pegasus is 31 years old. You know, the committee is outstanding. The committee that we’ve got at the moment have been involved since they were 14 as well. And you just can’t put that into words, really, how important that is to have that sustainability and continuity. People giving up their time freely.
DEBRA: The Biggest challenge must be raising the money, what other ways have you looked at?
SUE: We’ve got BTmydonate funding page which does bring in small amounts. Our volunteers, it’s an incredible thing that they’re doing and they are different when they leave us after three weeks. Sometimes I get a phone call and they say “I’m a university but I still think about Pegasus so we are going to have a sponsored silence and donate the money goes Pegasus.
We continue to get that support through people that have come through the scheme. We have lots of parents doing bike rides and so that’s targeting different fundraising potential with their family and friends. I think my family and friends now cross the road when they see me coming. £70,000 is not a lot of money in the grand scheme of things to do what we do but it does give big outcomes and important outcomes for children that are isolated and lonely. If you’re a parent of a child with disabilities, you know what I’m talking about because no one wants to play with your child. I know that first hand and that’s why I did this. Not just for Jamie but I’ve seen what struggle it is. We’re lucky that he had brothers and sisters and we were able to get him out as well because obviously if he can’t drive. Even now when we go to the cinema, even now he’s 27, we have to go and take him and see something we don’t want to watch and pay to see something we don’t want to watch. Yes, he’s got CEA card which is a big help and these things are important. If you have got other children, you all have to go as a family. You can’t just drop your child off like you would with your other children when they get to 14 just drop them at the cinema, then pick them up in 2 hours. You just can’t do that. So at Pegasus, we go to the cinema, we go bowling, sailing, canoeing we just do everything that young people. And they are so tired at the end of the day, which is great for the parents, so when the child gets in they just need to go straight to bed.
DEBRA: The young people what’s their feedback to you?
SUE: We have comments from a parent: My child loves joining Pegasus, not only does he get to do lively activities but he has a sense of belonging and an opportunity to learn new things and meet new people. Another comment: My son’s self-esteem at the end of the time spent at Pegasus is so high, he comes home happy and tired and he’s got lots of new friends. Another parent has written it’s their only opportunity to join in activities with other young people. That’s very sad if you think about it waiting all year and its only 3 weeks each year.
From Pegasus and because of my own experience with my son, Jamie, reaching the age of 18 and not going out in the evening, we started a youth forum. So on the first Wednesday of the month, our coordinator goes to the pub and any child that has come to Pegasus who is now over the age of 18 can come to the pub and play snooker, play, darts listen to music and maybe get a burger. That’s now been running for 7 years. I’ve always said every town should have a Pegasus because I just can’t put into words how important it is for the children.
DEBRA: Have you got any advice for other parents who may be want to start up something similar.
SUE: You should just look into it and do it because you don’t have start huge, do you? You could start a youth club on a Thursday evening, you just have to have the support and the volunteers there. You don’t need one-to-one but we do offer one-to-one because we love what the volunteers get out of it with Pegasus and it provides lots of training for these youngsters.
Just doing what we do at the youth forum once a month that is really important. That’s one of the things I’m probably most proud of. I would hate to see that stop. That would be quite easy where to start, wouldn’t it? Just one Wednesday a month, one Thursday a month. But I never imagined in a million years, not ever, that I could do this so you know, aim high, big outcomes.
Last year, I was flawed basically, to receive a letter from Prime Minister informing me that Her Majesty is going to give me an MBE from the services to children with disabilities and I don’t feel I’ve done anything, really but I’ve got one and I’m keeping it.
DEBRA: You’re probably underestimating the impact that you’ve had on clearly on the local community; keeping something like Pegasus going and as you said taking away isolation because that is a major issue.
SUE: Depression, we know it’s all linked. These things are just common sense but some people don’t realize, do they? When you’re isolated, you haven’t got any friends and then that’s going to lead to depression, isn’t it? It’s common sense! So, we’re very very fortunate, really, to have Pegasus.
DEBRA: Just go back to the question I was asking about how parents get started, do you think something quite small and maybe a little bit less structured like the drop-in center?
SUE: You could maybe start by organizing a cinema visit maybe to an autism friendly screening. Facebook’s brilliant for getting out there into the public. It’s just doing it, isn’t it, its just getting up and saying yeah, let’s just try to some friends together and maybe we can organise a cinema evening on Thursday night. Yeah, that would be a big start, really. When you see the pleasure that the children get, it inspires you, I think, to do something else.
A Christmas party, for instance, I just know that we never used to get invited to anything, of this nature like an 18th birthday or a 21st birthday party. And these things break your heart but people don’t realize. From that, I organized a prom at the local town hall. I went big, I just thought we’re going to have a prom, where’s the best place to have it? Our town hall is over 2000 years old, what we’re going to do is a black and white ball. And it was incredible! And because of that, we’ve had one every year now. Yeah, your ideas just can move with the mood. It is wonderful seeing the children so happy.
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