In families with disabled children, people can sometimes refer to the 'other child - the one without the disability, as perfectly 'fine'. "There's nothing wrong with little Johnny; it's his brother, Alex with Downs Syndrome who needs attention". From the onset I knew an interesting week led before me.
My Monday morning journey took me over the picturesque black and green Yorkshire hills, passing sheep and horses grazing peacefully in the meadow to
Monica McCaffrey's house, the Chief Exec of Sibs. Sibs are a charity that gears itself towards the siblings of brothers and sisters with disabilities. It is quite hard to get your head around at first. But put simply, their aim is to cater to the people who care for their brothers and sisters. So the charity doesn't focus on the individuals with disabilities but the ones who look after and live alongside them throughout their lives.
Monica's passion was clear from the onset. Her personal experiences with her own brother, who was born with both downs syndrome and autism, had led her on a difficult life path. Different of course from her brother, but affected none the less. She felt that her own; thoughts, feelings and personal experiences with her brother must be shared somehow by others. She couldn't be alone. Knowing that ethically she had to take over her brothers care, once her own mother (who had cared for her brother most of her life) was too told to do so, the moral responsibility, she felt, fell on her. Monica endeavoured to find like-minded people. Initially Sibs started as a consultancy, training businesses and charities on catering to those 'lost siblings' that were often forgotten about. As her message and movement grew she realised there were a lot more liked minded people out there, like herself, that needed support - and thus Sibs was born.
After spending the day with Monica and her wonderful brother Martin, my 761-mile journey around the county began. I have met with various individuals (From Leeds to London) who all share a collective story; they grew up with a brother or sister with a disability. I must admit it has been a steep learning curve for me this week. I am divided from these individuals, as I myself have not grown up with a brother or sister with a disability. But also united with them knowing how important it is to have a support group around you of like-minded peers who understand what you have been through.
As I visit more and more charities, I get more attuned to what they do, how they do it and why, most importantly they were founded. Some charities are instantly apparent in their founding. Guide dogs for the blind provide intelligent creatures to aid and assist blind people. But Sibs, Sibs were founded on a search. A search and yearning to help similar people who have suffered, often silently, most of their lives. These individuals have most likely been told that they are the 'normal' ones and they 'don't need any help'.
Tackling mental health issues and many other issues that come from looking after a sibling with a disability is an enormous endeavour. The work that has been done with young Sibs (which I learned about on Tuesday In Beverley), a website which includes an agony aunt section and forum for youngsters to come together and not feel so isolated. The adult groups who meet across the country to discuss their feelings include many parents. Talking about coping with a child with learning difficulties is just as important as talking about their siblings, so there is a delicate balance. On this subject, I got to know all about the 'activity jar'; a method that Monica teaches on her training to allow the 'other' child to have me time with their parents. This can remind the family to feel a sense of all-inclusive togetherness and normality away from the pressure of dealing with their brother or sister, who without speaking out of turn can be a handful most of the time.
On Wednesday I headed to London where I met with two adult sibling who felt they not only had a neglected childhood but, as they got older felt constantly out of the loop of their siblings care due to tension and friction with their parents. Their concern; as they get older they will naturally become their siblings career due to their parents not being able to handle the 24/7 care. This constant struggle with being recognised as a key member of their brother or sisters life has meant a life long battle to give the best for their loved sibling. These two lovely women finally found Sibs, through searching online and, through Monica, set up an adult sibling group. There are about 8 members of their London-based group who meet on a monthly basis to discuss their thoughts and feelings and any helpful tips for dealing with being a sibling carer. It is these adult groups where the charity puts a wealth of their time and investment. Helping set up and instigate meetings and providing information and learning material to its members.
Later in the week, I got the chance to meet one of the Sibs Trustee's in Leeds, Roger. Roger is quite different from most of the other trustee's as he is actually a parent of 3 boys, two of which were born with life limiting conditions. Sadly Roger lost one his sons a few years back but his family was given amazing care from Martin House, where Roger learned about Sibs. Like most of us, his initial reaction to the charity and sibling movement was that his one son was completely fine. But as he got a further understanding for the cause he realised it could have benefits for them all. This was reinforced after meeting the wonderful Rachel on Thursday who runs young sibling groups through an initiative at the University of Bristol. She has seen first hand how impactful this rest time can be for these kids affected.
From what I have experienced, Sibs is the silent charity tackling the silent issue. These kids grow up not wanting to speak out because they almost feel bad for doing so. When you have a brother or sister who needs full time care, asking to play 'dollies' with mummy can almost be asking too much. This in turn can create a complex in those individuals that has never been tackled. Sibs aim is simple -to help the other child. From the outside this could be a seemingly easy task, but when you start to dig a little deeper, you start to uncover the deep-rooted issues that in most adult sibs cases, stem back a lifetime. I have no doubt that Sibs will grow and help countless adults and children, in their own personal and individual way.