Jan Rock worked for 22 years in local government in the field of economic development and physical, social and economic regeneration. Jan is also a brain injury Mum. Following her son’s traumatic brain injury in 2010, Jan has dedicated her life to learning about the complex effects of acquired brain injuries in children and young people and how to help them. Jan has shared her journey of how she has turned an extremely distressing experience into something positive for local families who find themselves in similar situations.
Jan’s story
My son sustained a severe traumatic brain injury and other serious injuries, in a climbing accident when he fell 70 ft. He spent 10 weeks in hospital, of which 5 were spent in the Paediatric Intensive Care Unit (PICU) in James Cook University Hospital. When he emerged from a coma three weeks later, he could no longer walk, sit up, talk, see, hear or swallow; he had to learn to do all these things again. The neurorehabilitation staff were amazing and upon discharge from hospital he had regained many of these physical skills, at least to a basic level. Up to this point, nobody had prioritised his cognitive recovery – which was still significantly impaired, so I asked who would pick this up to be told, “oh nobody does that”.
I couldn’t believe it, this meant my son was unable to think, make decisions, learn, read, write, watch TV, go to the cinema, socialise with his friends to name but a few things, yet his rehabilitation was considered ‘complete’. What about his quality of life and ours!? Through completing lots of research, me and my family went on to learn that a traumatic brain injury affects not only physical functions, but also a range of sensory, communication, cognitive, emotional and behavioural skills that he previously had in abundance.
We quickly realised that it was up us to facilitate his ongoing recovery because nobody else was going to. We spent lots of time researching how rehabilitation was delivered in other countries particularly focussing on the military as we learnt that at least 50% of British and American soldiers came back from Iran and Afghanistan with traumatic brain injuries.
We created and commenced a programme of Cognitive Stimulation Interventions with our son, which quickly delivered rapid improvements even shocking his doctors with his progress. He was becoming himself again which would not have happened without our dedication to prioritise his cognitive functions.
Establishing Matrix
Medical professionals involved with his ongoing care were so impressed with my son’s recovery that they asked me to help other children, young people and their families by developing a dedicated charity. They also informed me that kids with non-traumatic brain injuries caused by serious illness suffered the same problems as children and young people with traumatic brain injuries by the time they reached their teenage years. As such they requested that the charity focussed on both traumatic and non-traumatic brain injuries.
In 2014, I set up Matrix to support other families going through the same life-changing experience. The first service to be developed, was the Family Support Project because I didn’t want another family to go on this journey alone.
Many parents shared similar frustrations to my own such as the lack of knowledge and understanding of traumatic brain injury in schools and amongst a range of community professionals. Families were experiencing a culture of blame and punishment for their perceived poor parenting skills, as the reasons why their children were struggling at school. In response I established the Case Management Service, to help parents to advocate for their child’s needs and support them with challenging poor decision-making by professionals.
Many families were also asking the charity to “please help my child because nobody else did”! I then obtained BBC Children in Need funding to commence our Children and Young People’s Service, focussing on recovery and regaining important lost or impaired skills and abilities.
How has Matrix grown over the years
Many of our staff and volunteers’ lives have been touched or affected by an acquired brain injury in some way. Their innovative work has been described as ‘transformational’ by BBC Children in Need. However, it is a constant battle of trying to raise funds for a significant and complex health problem that is negatively impacting on children’s lives when very little publicity is given to acquired brain injuries; particularly on the still developing brains of children and young people.
I use my lived experience to provide Peer Support to parents. My own experiences allow me to connect with parents on a unique level; I understand the traumatic journey they are on and the terrifying nightmare they have lived through. I can relate to the grief and loss they often feel, the impact this has had on family dynamics and relationships and the unnecessary pressures and tensions this brings. I help parents to come to terms with what has happened and support them to understand acquired brain injuries and how it is affecting their child. Most importantly I aim to provide them with hope for the future and equip them with the skills and knowledge they need to effectively parent their brain injured child.
In a nutshell, “MATRIX aims to become part of the solution, not to continue exacerbating the problems these families face.”
Get in touch
To find out more or access support call 01642 989116 or complete the contact form on our website www.matrixneurological.org.uk.
