A brain injury in a baby changes the course of life. As a parent you have dreams and aspirations for your child – grief for the loss of the life imagined can be hard to bear. Families just starting out, or having grown in numbers, can be anxious, untrusting and angry about the situation they find themselves in.
Whilst the journey is difficult, with the right support and care, the child can go on the flourish and the family can breathe, laugh and hope for a good but different future. To help explain just one of the many journeys a child and family go on following acquired brain injury Joanna Bamberger, Social Worker and Case Manager tells the story of Eli (for the purposes of this story), his family and his life.
As a baby, clinical negligence left Eli with a brain injury and growing up hasn’t been what anyone in his life would have planned, but that doesn’t define him. What does is that he is a life-loving 11 year old Muslim boy who lives with his mother and father and looks up to his two sisters who are in their early 20’s.
His smile is what comes to mind when I think of him. Despite some speech and language delay he is articulate with an enormous passion for dinosaurs and being creative. He’s a solitary little figure who adores his cat and has a beautiful bond with his mother.
He also has an amazing memory and can recall people and places he visited in the past; we’ve all been in a multistorey car park not recalling from the thousands of parked cars where we left ours – even questioning if we know what our car is – but Eli came to the rescue after a long drive, an intense day visiting schools and, as dusk settled, found our transport – he never ceases to amaze me.
Faith and the future
Eli’s challenges are in some ways typical to those experienced by many children with acquired brain injuries, but with additional expectations aligned to his heritage and culture. His faith as a Muslim plays a massive part in who he is but also what his future holds. Being the only boy in a Muslim family brings cultural responsibilities around growing up into a man who can deliver teachings, learn prayers, fulfill religious family duties and be a figure in the community.
When I first took on Eli’s case it had settled and the family had been struggling for some time. I didn’t meet Eli on day one, I met with his parents. Walking in to their home I was stuck by the physical environment it was a loving home but it was dark and cluttered, leading to an oppressive atmosphere. They lived in difficult circumstances and it quickly became clear that this was a manifestation of how Eli’s mum was feeling. I knew straight away that addressing the parent’s mental health and their ability to support Eli was a key role.
A mother’s loss
Struggling with their own health issues, I saw in Eli’s parents what you see all too often as a case manager – anxiety, mistrust, hopelessness, confusion and an overwhelming frustration of not knowing where to turn. Mum wanted to talk first about the impact on her before we even started to talk about Eli. This is not unusual in some child ABI cases and so I listened to what consumed her; the thought of a life she hadn’t felt she could fulfill as a career woman, a parent and a wife.
What consumed her wasn’t selfish, her feelings were all valid, but it was important that alongside her concerns, everything we did and unpicked was for the benefit of Eli. At school he was independent but at home he was taken to the toilet, had his clothes picked out for him and was not being given the chance to think for himself.
When I met Eli he hadn’t been in school for over a year; the usual transition from primary to secondary hadn’t been successful for him without support in place. His primary school did an amazing job at meeting his needs, but this masked the extent of the help that he required and his EHCP was not geared to his transition into secondary education.. The decision had been made to take him out of the secondary school he had been placed in and appeal his place. One of my first goals to set was to secure a suitable school place for Eli and help him regain some independence.
Finding Eli’s independence
With very few specialist Speech and Language Therapy (SALT) schools in the UK our options for Eli were limited. Either he would have to board, which wasn’t right for Eli, or the family would have to move. Working with colleagues and contacts in the local area we eventually found a small, niche private school which, despite not being a specialist SALT school, is able to sufficiently meet Eli’s needs. He is due to attend a two day trial to assess the suitability further. I know this will be a massive step forward for Eli and should set him back on track towards a more positive future Outside of school he struggles to keep friendship groups going and school gave him that sense of friendship and peer support.
I found Eli appropriate therapists including Speech and Language, Occupational Therapy and an amazing counsellor so he has someone he can talk to. I arranged for social services to fund a PA for Eli to support with social inclusion and engagement and they have such a great bond. The PA takes him to his counsellor and for social activities and I think it’s important for Eli to know he’s supported and can begin to step out into independence. Home tutoring in lieu of education for Eli has also been another goal to feed his curiosity and creative mind.
Finding suitable accommodation is where we’re moving on to now. A house that is Eli’s and will ensure he is safe and protected for the rest of his life; a house with space for his therapies, for him to grow up to be a man with hopefully have his own family and interests. A key role is to help manage the family’s expectations and work within the budget.
Work with the parents will be ongoing. They’re his biggest enablers but there is also a risk of them being his biggest disablers. As we continue to achieve Eli’s goals and move him forward it’s time for them to look to their own goals; get back to work and keep trusting the support networks in place.
I’m extremely humbled in my role as a case manager. Working with children like Eli I have experience of the practical support and resources that I can put in places. As a social worker I have experience of commissioning direct payments, managing multi-disciplinary teams and, working within complex family dynamics. I love using and developing these skills, but I get so much more than that from this role.
With Eli in particular I get to help him shape his future. Today he’s an anxious little boy but he’s also a little boy who is looking forward to the rest of his life, having a job and a family of his own. That proves to me that hope is never lost it just needs uncovering with calm, openness, trust, reassurance, support and understanding.
Joanna Bamberger is a social worker and case manager for the Child Brain Injury Rehabilitation Service. She has over 20 year’s clinical experience and is an open, honest and compassionate individual which enables her to swiftly build good rapport. Her specialist knowledge in the area of paediatrics and young adults makes her particularly suited to support younger clients, acting as a knowledgeable, strong advocate to ensure their immediate and long-term needs are met. Throughout her career, Joanna has developed highly specialised skills working with complex cases with children and young adults with significant and multiple disabilities. This includes clients with physical, behavioural, learning and sensory disabilities, as well as working with parents or carers with their own learning or physical disability needs.
View Joanna’s full CV here: https://search.cbirs.co.uk/consultants/profile/96164080