Better Breaks Shetland
A story by Voluntary Action Shetland
We offered various short break opportunities to carers of young people under 18 years living in Shetland.
The short breaks included, a sibling group (plus activities in the school holidays), family days, parent support group (with opportunities for rural parents to meet) and a group for children with social communication difficulties.
What Better Breaks Shetland did
Fortnightly “Monday Group” for able teenagers on the autism spectrum who didn’t attend other youth clubs. It encouraged social interactions and timeout activities for the teenager. Parents got a break during this time.
Monthly Parent support group, for those who have children with social communication difficulties. This provides time out from their caring role. Different activities are offered but often time is spent chatting about the various challenges that people face. Parents in outer isles meet in a local café to have their time out.
A monthly group for young people who have a sibling with Additional Support Needs. Days are also offered during holidays and are timed to complement the service offered by Disability Shetland Services.
Voluntary Action Shetland operate a carers service for all carers, working closely with the local council and other voluntary agencies for example Disability Shetland to identify appropriate people to target.
Young Carers do come to sibling group, although they have limited caring responsibilities at the moment. The group is designed to complement the Disability Shetland Services, giving the parent carers the opportunity to have a break from all their children. Parents say they meet friends, run errands and one said they spend time with Additional Support Needs child to re-build their relationship.
Sessions are designed to give carers a life outside caring and for them to feel supported in their role. The sessions involving young people gives them a life outside of their family home whilst building their independence skills. In Shetland, success very much depends on your reputation and word of mouth. This, along with networking and close working with local partners has meant that these activities have been a success. We have been able to use local partner facilities and staff which has contributed to the success.
This year the family days have gone particularly well - they have allowed parents to socialise as a family which they tell us that often don’t get an opportunity to do.
What Voluntary Action Shetland has learned
Partnership working has been the key to success for implementing our Better Breaks project. We only get the results that we need with families if they can buy into the process, they do this by making suggestions and us responding to what they are saying. It is also so important that we work with our professional partners as them knowing about the service and promoting it means that we get to meet the families who need this the most.
We have realised that dealing with this set of parents we have to be very clear in our communication. We have modified our email and and correspondence to parents to ensure that we are specific and clear what the sessions involve so that they are clear about the expectations of them and what the sessions will involve.
We have learnt how bureaucratic and inconsistent services can sometimes be, which often leads to a mistrust of services. We have realised that there is still a long way to go to make changes that would help carers and we need to play our part in ensuring their voices are heard.
“Monday Group” will be successful if secondary pupils continue to be referred by professionals. Those who attend the group will build good peer relationships & build confidence. They will get the opportunity to manage different social situations and learn “the rules” for this.
The Monday group offered 20 sessions for up to 8 individuals in a cafe/cinema complex. The individuals have built on their confidence and have started to make new friendships.
Joseph is 15 and lives at home with his parents. He has a younger sister and an older brother. Joseph has a keen interest in biology and mammals, and is developing an interest in photography. Joseph was 14 when he received a diagnosis of Asperger’s Syndrome. Joseph was referred to the Monday Group by his pupil support teacher. They felt he needed support to gain confidence in social situations as he tended to isolate himself and didn’t fit in with his peers. Joseph had tried the local additional support needs youth club but felt he didn’t fit in with the people there as he wasn’t disabled enough. He also tried the local mainstream youth club but that didn’t work for him either as he couldn’t work out the complex relationships or understand why everyone spoke about really boring things like girls or football. Joseph came along to the Monday Group independently, and quickly built a good relationship with another young person. They had a shared interest of a card game and they chose to spend their time at the group playing this game. Both were happy to chat to other people while they were playing, and they did offer to show other people in the group what to do. Joseph initially found it difficult to order his own drinks at the café during the group, using a very small quiet voice unlike his normal voice. With gentle support and encouragement from staff, Joseph was able to gain confidence in doing this and can now (after a number of weeks) order his own drinks appropriately and independently. Joseph was able to transfer this skill to other situations which has helped improve his interaction with others. When Joseph turned 15, he was keen to be like other teenagers and have a part time job. The main motivation for this was to earn his own money so that he could buy more cards for his favourite card game. Joseph’s mum enquired on his behalf in a couple of shops, with no success. One day, Joseph decided to go into the local butchers and ask if they had any part time jobs. This was a huge step for Joseph, and he was delighted when they offered him a trial after school the following week! Joseph completed the trial successfully, and he now works three afternoons after school. Joseph still needs support in some social situations and sometimes needs a reminder to ask for help. Joseph and his parents feel that the group enabled him to learn social skills in a supportive environment, and definitely gave him the confidence to ask about the job.
We will be offering different support sessions for parents, grandparents and specific activities for dads. These sessions will be used to help build up resilience and help with peer support. They will offer opportunities for supporting carers to be more involved in the care to aid the main carer.
A grandparent session was held this was 1 session as the grandparents who attended did not want further meetings of support but did agree that they would be able to support their children more with their caring role. The sessions for Dads have not been successful as we have not managed to attract enough male carers at the same time, although we are still finding that male carers do want an opportunity to participate. We are going to contact Father's Network Scotland to find out how they engage with male carers.
During discussion with parents, it was found that many of their parents didn’t understand the needs that their grandchildren had. This meant that, although the grandparents were quite happy to babysit the other grandchildren, the ones with additional support needs didn’t go with them. Parents said that this made them feel that their child with additional support needs wasn’t included in the family and also meant that they as parents missed out on vital respite time. We offered a Grandparents Session, specifically on autism as this was the main need in the group at that time. The grandparents who attended were given an overview on autism, and given the chance to ask questions. The grandparents were able to share their experiences with each other and they were encouraged that the worries they had in looking after their grandchild with autism weren’t unique. Before the session, we asked parents what they wanted the grandparents to know. The main things were that they wanted their child with additional support needs to be included in family gatherings, and they wanted help but didn’t want to ask them as they didn’t want to bother them. During the session, these answers were anonymised, and read out. One grandparent was upset as they always wanted to offer help but hadn’t previously, as they didn’t want their daughter to feel that they thought she couldn’t cope with the children! The grandparent said that they would now offer help. The grandparents found this session very informative, and gave them a valuable insight into what the parents were thinking. They were able to share their worries and concerns with their peers, who were also in the same situation. Since this session, some grandparents offered more help to the parents, and have even gone on a family holiday with them. This meant that the family was able to support each other and this wouldn’t have happened before.
Carers, siblings and the child with Additional Support Needs offered opportunities to participate in different activities. Liaising with Disability Shetland we will ensure parents can have child free respite time. It also gives the opportunity for siblings to to spend other time with children in a similar situation.
13 Sibling session were delivered, these took place in various locations usually meeting at the Bruce Family Centre and then moving to where the activity would be. This has included trips to Sumburgh Lighthouse, Scalloway Castle, local museum, local playpark and the cinema because the children have specifically requested this. We offered a mix of family and sibling sessions through the holidays, 4 summer, 2 October, 1 Christmas and 1 Easter, the sibling volunteers who were interested have moved on to other groups and therefore not completed volunteering within the sibling group.
Jade was referred to the sibling group by social work as she was finding it hard to deal with the emotions that go hand in hand with having a sibling with complex needs. Jade and her mum travelled a significant distance to come to the group while the sibling with complex needs was cared for by the other parent. This allowed Jade and her mum to have time alone without the other siblings. Jade enjoyed this one-to-one time with her mum, but quickly built relationships with the other children who attended the sibling group. This allowed Jade time away from her caring role and time to be a child. Following on from this success, mum felt that her son Craig would also benefit from the sibling group. Craig came along to the group with Jade and it became clear that Craig was quieter and shyer than his sibling. Staff were able to give Craig 1:1 time to play board games and quieter activities while gently encouraging him to start to engage with the other children. Over the sessions, Craig slowly engaged more with the some of the children and he has built a tentative friendship with another boy close to his age. Jade has used sibling group time to speak to staff about the things that she finds difficult with having a sibling with an additional support need. Jade is clear that this is why she comes to the group. Craig is still reserved but listens intently to any interaction that Jade has with staff, so hears the reassurance of the conversation. Mum said “Sibling Group has allowed me to shop and run errands. It has given the kids the chance to realise they are not alone that there are other kids who know what it’s like to have an Additional Support Needs sibling and that has been the most important thing for me.”
Following the information sessions provided to the parents group, parents will feel confident and empowered. We will also work with the Local Authority to use their dedicated resource of experts from AT Autism to provide any sessions we are unable to deliver ourselves.
12 parent groups and 7 outreach support sessions have taken place. We have measured the well being of the parents within these groups, this year the distance travelled has not been so different (as previously mentioned) however the chance to have a cup of tea and speak to other parents with occasional activities has meant the parents feel well supported. We have also opened up the opportunity for parents to speak with specialist organisations such as AT Autism which again helps them to feel well supported.
Katy heard about the parent group from her social worker. Katy is a lone parent of a child with an autism spectrum difficulty, but also has recently been diagnosed with an autism spectrum difficulty herself. Katy often finds the noise, chatter and emotion of the parent group overwhelming but perseveres as she finds the information given at the group very useful. Katy reads a lot of journals and books on autism and parenting so she is a valued member of the group. She also takes time to consider the situations that other parents are experiencing and will give advice where she can. On some days, depending on how Katy is feeling, she finds interacting with groups exhausting, and the staff at the group ensure that Katy feels supported after the group to work through any issues that have been raised for her. Katy said “ As a late diagnosed autistic parent I find the group a safe social space in which people understand about autism. I don't need to worry that people are finding me rude, too quiet, too loud, too sensitive etc. It is a social situation that is low stress for me, which is very rare. Not all parents / carers groups are comfortable spaces for autistic parents because there can be an atmosphere of "love the child / hate the autism". I don't find that the case here.”
Working for a more autism friendly community. Raising awareness of dealing with children with social communication difficulties to organisations who offer mainstream activities. This will promote sustainability for the future and enable children to mix with their peers,
Quarterly meetings have taken place. The meetings with organisations have all happened informally whilst we have been working with them.
Family Days are a well used resource throughout our year. A lot of families have had difficult experiences with local sports centres who have put on mainstream activities where it has been felt there hasn’t been much thought given to enabling inclusiveness. On one of our recent family days, a new recreational assistant was in charge of our allocated part of the hall. It was a good opportunity to give this new assistant an overview of working with people who have additional support needs, and in particular, autism. The Voluntary Action Shetland worker was able to give pointers to the assistant (e.g. sensory difficulties with sounds, light and touch), and guidance in keeping instructions short and concise. The Voluntary Action Shetland worker explained that this day in particular was an opportunity for families who have a child with additional support needs to come together, and do activities as a whole family. The assistant learned that the children might not always interact or behave in the way that he would expect, but the Voluntary Action Shetland worker was there to support, alongside the parents. The children who came along to this session had a range of needs, and didn’t always use the equipment as it was intended. The Voluntary Action Shetland worker was able to support the assistant in allowing this creative play, and encouraged him to change the equipment set up (adhering to their health and safety guidelines) as the children wanted. This allowed, on this particular occasion, all the children who attended the group to come together and work as one to make a bridge out of the soft play, and explore the different ways they could move across it. This allowed the children to build relationships with each other, and everyone was included. As the children were engaged in this activity supported by the Voluntary Action Shetland worker and the assistant, it gave the parents an opportunity to chat together, either to talk about things that they were finding tricky, or just chat. Some parents said that this was one of the first times they had felt that they could relax and just let their children play without their constant supervision. As the end of the session came closer, the Voluntary Action Shetland worker explained the importance of giving people with additional support needs warning of something coming to an end. The assistant took this, and the other advice given, on board and felt he would use it in other mainstream sessions as he could see the benefit for other children as well.
As with outcome 5 we will look to have a more autism friendly community. We will use examples on our website and Facebook of activities that have worked well and how this improves the lives of carers.
We post on Facebook all the time about the different groups and the activities that have taken place. This gives other people the chance to see what is on offer. We also post about local interest opportunities and services. We have encourage parents to also be posting useful information that will help others.
Case study 5 meets this outcome too.