Summary
Our project supports short break opportunities for CYP who find it difficult to function and communicate in mainstream circles, providing a regular chance to have fun with their peers, meet up with friends and enjoy leisure time. It targets 20 disabled children and young people (CYP) aged 11-18 years who live in Edinburgh and have significant speech language communication impairments such as DLD (Developmental Language Disorder) hyperlexia, dyslexia, apraxia, stammering. They may also have comorbid conditions, as well as neurodiverse conditions such as Autism and Asperger’s Syndrome and may have severe behavioural/sensory problems. Project aim was to run a youth club designed to support individual needs but also to support parents and carers to get a break to help improve their wellbeing. The main purpose was to offer fun and friendship for the members but to offer a peer support network and community connection to parent carers, whose roles are in the main 24/7.
What Youth Club did
The short break activity that has been delivered was a weekly youth club running for two hours in Edinburgh, which supported 20 young disabled people to meet and engage in planned social activity. It was driven by what they wanted to do and this was reported as something that they hadn’t been able to do previously.. As disabled young people their lives are often dictated for them because their vulnerabilities don’t permit them to be as independent or in control of their lives as what they would like.
Being able to join a club where there were dedicated staff who understood the range of needs and who were trained and had the ability to support diverse speech language and communication disabilities as well as comorbid conditions like autism/ neurodevelopmental conditions meant that they experienced inclusion, and had a safe and trusted space where they were safe to explore what they wanted to do with their break away from parents, carers, siblings etc.
The range of activities was a mix of the everyday things others take for granted as well as fun and funky things that they wanted to try. Freely exploring thoughts, feelings, and aspirations through a guided support programme, that was communication friendly, really helped include everyone and make sure that voices were heard on an equal basis. Engaging in a range of games and pursuits that both indoors as out provided a wide range of opportunities that
allowed members to experience a host of different things. Often sensory issues affect the abilities of YP to be in large spaces like parks, and being together in their group, they helped support each other and learn to cope in social situations more appropriately. . Activities have taken them to outside arenas, local venues, cafes, trips and various things that they have all benefitted from on so many levels. Improvements in health, mental health, life skills as well as social skills were reported.
Mutual benefit for their parents and caregivers who are 24/7 carers for young people, without any break, has been integral to the positive outcomes of the fund. The considerable benefits reported are primarily that parents, caregivers including foster and kinship carers, are happier because their children are happy. Additionally through exploration using appreciative inquiry ( AI ), which really amounts to discussions through conversations, helped us identify that parents have experienced gains in reduced stress and a more positive outlook because their YP had found a place where they were accepted as individuals; looked after and supported in ways that directly addressed their individual needs. find a supportive club to join where they are included but also able to assert themselves without the support of their parents. Parents have reported positively about the relief that they felt and how it impacts their own health knowing that their young people are supported. The fact that parents could take a well-earned break and either make time for themselves and just not have to ‘care’ for a few hours; others said they went to visit family/ friends, attend a gym session or book a hairdresser appointment, knowing that their YP was safe and happy. The whole opportunity of a break from caring through the delivery of a club to safely support their children made a difference to the lives of so the families and indirectly to the lives of other family members. was reported as
a high value benefit. Parents always put the welfare of their child before thinking of benefits of a break from themselves, however.
What The Speech Language Communication Company has learned
That making the children of people who care happy, makes the carer happy. It’s not rocket science it’s providing equitable access to the essential things in life that matter to people; the happiness and comfort of those around them. Carers don’t get breaks, they don’t get days off, they are worn into the ground due to the burden of caring. But parents are glad to do it – they are the only advocates for their children in many cases, and their only friends. Disabled children who have 24/7 needs are challenging and have a negative impact on their parents and carers mental and physical health. The break away from that is important.
We have also learned that carers like those who look after children are not recognised in the same way as others. Parenting is not always associated with caring, and the role not recognised in the same way as other carers. This fund has helped highlight the plight of parent carers – those who are supporting and caring for their children, who grow into adults, and still require the same level of care.
How The Speech Language Communication Company has benefitted from the funding
This has extended our capacity to support parent carers and acknowledge that through acknowledging the caring role of or parents as carers, it’s a new way of looking to support them. It has had such a massive boost to what we’ve been able to deliver, we are keen to sustain it.
Project Outcomes
Outcome
Disabled children and young people (aged 20 and under) will have more opportunities to have fun, develop friendships and do activities they enjoy.
Results
YP were able to drive a social opportunity and take a break from parents and carers to build independence and explore their individuality, their communication support needs addressed, creating a safe and welcoming space to meet and to try new activities.
Case study
It must be noted that text-based reporting for YP who have trouble with language and verbalising what they want to say is quite difficult. Often, their expression is not verbal, it’s made through other senses, or it’s observing them together through an activity or a shared piece of art or video. These things are kept inside the club as we respect the YPs’ equality and preferences. They say that nobody else gets asked if they’re happy to go and meet friends. We understand that! The section has a small quote from two members to highlight the outcome.
Emily: “I just love coming to club because I’ve got friends. I didn’t have that before. It’s great the way that we’re able to do things that we want to do, I like the way the staff let us do what we want. It’s part of my life coming here. I don’t have anywhere else to go.”
Ahmed: “The youth club means everything to me. I’m not able to go out unless I’m coming here.”
Outcome
Carers of disabled children and young people (aged 20 and under) will have more opportunities to enjoy a life outside of their caring role.
Results
Through the delivery of the club and participation of their YP, this facilitated carers the chance to take a break and either join in some of the parent-oriented peer support on offer or use the time to do what they wanted whilst their YP was supervised and supported.
Case study
Mark (shared care of son): “ As a single dad looking after my boy, it’s been really difficul.t I only see him at the weekends because I work during the week but it means that I work all week and don’t really get a chance to do anything other than be with my son at the weekend. Don’t get me wrong, that’s what I want but sometimes it takes its toll and sometimes I’d get frustrated. I think I was just tired after working all week and because my son demands so much of my time and energy it got too much, and I felt guilty because I would raise my voice at times. That made me feel a bad dad. When we got the chance of the club, it was a lifesaver. He really enjoyed it and he has had so many things that have changed over the time he’s been going it’s been the best thing that we’ve done. I don’t feel
guilty leaving him for the two hours that he’s at club because he thrives on it. He’s looking forward to seeing me when he comes back and he’s looking forward to going when I drop him off, so a win win all round. It’s made a massive difference for me because it has given me that break just to do what I need to do or go and visit my mum who’s getting on a bit. The break has been what I needed to keep my sanity. The opportunity to speak to the other parents has been great as well. I’ve learned a lot and I seem to have been adopted by some of the mums! I’m not too sure what we’ll do without this club. These clubs need to be kept going because they lifesavers for the kids. And the parents.”
Outcome
Disabled children and young people (aged 20 and under) and their carers will have improved wellbeing.
Results
Wellbeing is one of the key elements of providing quality social opportunities and embedded into the design and delivery of the club. Clubs at their basic level, promote breaks for carers, who we know experience stress and anxiety due to the nature of their parenting and caring roles. YP who experience disadvantage through exclusion and disability, by default experience poor mental health.
Providing opportunities via a club, promotes wellbeing for both the YP, and their parents/carers. All who were involved reported key improvements and improved wellbeing.
Case study
Carley (single mum); “I’m a single parent and I struggle because I have other children to support as well as K. But I’m so thankful for a club that Kieran can go to. He’s had it hard in his life, he’s 18 now and struggled when he left school. He doesn’t know how to navigate in an adult world. He can’t go to the shops on his on and doesn’t understand money. He lives half the week with me and half with his dad and that puts stress on us all. But he’s come on leaps and bounds after coming to this club.
Far more independent and they’ve done wonders for his confidence. I’ve learned things about myself and him through coming along and attending the parent network sessions really made a difference in my life. I’ve got to juggle every day to get to work and make sure that he has everything he needs. The fact I can come along and speak to other families who understand what life can be like has been therapeutic for me. I’ve learned so much from the staff and from other parents and watching the other young people who all have their own different types of difficulties. I don’t want to do anything much more than see K happy and been able to drop him off at club and join in when I
want or just go and grab a bit of shopping, it’s been great, long may it continue.”
Outcome
Carers of disabled children and young people (aged 20 and under) will feel better supported to sustain their caring role.
Results
Peer support and a network for carers made a difference to the lives of the families involved. Many parents told us how their health and wellbeing had improved by taking a few hours a week to do something of their choosing. Sessions for parents addressed the wellbeing concerns not only of their YP, but their own. Sharing stories, tips, and having a community connection with others who knew what caring for a SLC affected/disabled YP was like.
Case study
SARAH (disabled mum) : “I was so relieved to find a club that could tailor to my son’s needs. Now that he is older it becomes more worrying for me as a parent to make sure that he is able to socialise and be able to do things that other young people can do.. it’s not often that you find anything out of mainstream that is offered. Somewhere that my son can feel safe and looked after. Generally I act as everything for my son, and I really don’t have any time for myself. Over a period of months of joining club it was quite clear that he had built up a friendship circle and he really enjoyed going along. He does experience a lot of anxiety attending any type of activity but it was obvious that he was really benefiting from going.. that in turn made me feel a lot more relaxed and relieved that he had somewhere to go and certainly he looked forward to it every week. It did become a welcome break for me because after several months I was confident that I could leave him for the duration of the club and go and do whatever I wanted to do which was a really good break for me. I never allowed my son to be anywhere on his own as I didn’t think he could cope. He could easily get into a meltdown. I certainly see my son as a happier young man and for me it has been quite life changing. My health has got better over the last year. I really thank the people who run the club because
they’re so professional, helpful, knowledgeable, caring and cater to everyone’s needs”.