Siblings with a disabled brother or sister can face many challenges as they move through childhood often with more responsibilities than many other children have. This includes limited access to regular physical activity, restricted by family time, finance, and priorities. Many siblings may also experience social isolation and develop problems with mental wellbeing.
Central Cheshire Buddy Scheme are a charity in Crewe that works with and supports children and young people who have a range of abilities and disabilities and their families to encourage different experiences with peers in a supportive environment. They identified that siblings with a disabled brother or sister often need additional support to get out and about, enjoy new experiences with peers, and give them a break from caring responsibilities of their siblings.
With the help of Active Cheshire, Central Cheshire Buddy Scheme were able to develop their Siblings project that aimed to support the siblings of a disabled child or young people to access regular physical activity, improving mental wellbeing through shared experiences. Experiences included swimming sessions, canoeing, cycling, and days out to the beach, promoting movement but also socialising with peers who may have similar concerns in their life.
Lena and Jamie* are two siblings who have particularly benefited from the programme.
Cheshire Buddies received a referral from a social worker who was concerned with the level of support Lena was providing for her severely autistic younger sister. Living in a flat with her Grandparents, parents, and two other children, Lena was restricted to having any time for herself. Lena’s daily routine would revolve around her sister, even sharing her 6:30 pm bedtime as her sister would not go to bed without her. The social worker became concerned that Lena was missing out on being a child herself.
The Buddies were referred to Lena, but initial communication with the family was difficult, with an element of resistance. The parents and grandparents understood the positive impact the group would provide Lena, but would often cancel last minute. Cheshire Buddies worked very closely with the social worker, being persistent to offer the help and support the family and Lena needed to have a break from her caring role.
Now Lena regularly attends the sibling group. She has been on many trips, using physical activity to facilitate socialising with peers and making lots and friends, even meeting other children who attend her school. Lena has been described as being “a very bubbly young lady who exudes energy and personality, it is great to see her playing and chatting and laughing with the other children. It has given her an opportunity to talk about how she feels in a place where she has felt other children understand her and at the same time she has been able to just have some fun and forget about her worries.”
In addition, Lena’s family have now moved to a house, meaning Lena has a bedroom for herself, giving her the space and privacy she needs.
Jamie and his brothers live with their grandparents who provided a loving and stable upbringing despite a very difficult period when the boys were very young. One of Jamie’s brother has complex needs, so requires constant care and while the grandparents are keen for the boys to have new opportunities they find it difficult to take the boys out.
After meeting the family at a school parents evening, the grandparents expressed their concerns that they wanted the boys to do more, meet other children and to be “just children”. Through the sibling’s group, Cheshire Buddies were able to take the boys on new, exciting days out, including an indoor water park, cycling, bowling, and trampolining.
Although shy at first, the Buddies have seen the brothers grow into confidence. They have been places they have never been before and have begun to engage with the other children while taking part in the exciting and energetic activities. The Buddies say “it has been a very positive experience for both boys”.
And the programme has benefited the Grandparents too! At times their life can be hectic and stressful but have had opportunities to enjoy time together while the boys are being active with the Buddies. Demonstrating the Siblings Projects’ impact on the whole family, they said: “we aren’t getting any younger and looking after three young boys in difficult to manage at times, but with the boys going off doing other things has made a huge difference.”