Valuing the continuity of care

Our Family Support Team is a very important part of what Very Special Kids does and without them there would be a large gap in the services that we offer. Not only are our team specialised in counselling families who have a child with a life threatening illness, but they also support those who are bereaved too. One of our Family Support Practitioners wrote a piece about what it’s like working as a social worker, and provides insight into the amazing role.

“Very Special Kids provides holistic family centred care to more than 900 families across Victoria with ongoing support from diagnosis all the way through to recovery or bereavement. I have been a part of the family support team at Very Special Kids in my capacity as a social worker for almost six years now.  I think of myself as a co-creator, building authentic support relationships with families in an effort to provide choice at all stages of care. Very Special Kids provides a unique level of intervention that values continuity of care and longevity of support. Integral to this process is understanding the family as a system and favouring a flexible model of care rather than adopting a one size fits all approach. 

There is so much I value about working this way. Looking through the lens of a social worker allows me to think systemically, to consider the impact of environmental factors and past losses on families. My role is forever changing and is largely shaped by the alchemy of the people that I support, they are without a doubt my greatest teachers. In this way, what comes to me as seed moves on as blossom. We are bound together by kindness and generosity. For this reason, the family support role at Very Special Kids is hard to define. It means different things to different people and demands different things from me every day as a result.

We live in a culture that has been largely unwilling to accept the fact that sadly children do die and that we have an obligation as a community to adopt a village mindedness when it comes to caring for these children and their families. We must all bear witness and without a doubt providing families with choice at end of life lays at the heart of this commitment. Whether that’s helping families remain at home, in hospital or in the care of our hospice at Very Special Kids, we have an obligation to listen deeply, to educate and to co-create accordingly. 

I have been in the profound with families as they navigate the terrain of death and the oceanic tidal waves of their grief. At Very Special Kids we stay involved indefinitely after the death of a child and this continuum of care offers me privileged insight into the lessons grief teaches us about what it means to be human. It’s my job to lean in and listen. To welcome mystery and to be curious. My experience in paediatric palliative care has left an indelible mark on my soul, the work has polished and weathered me. I have learnt to allow whatever aspect of myself is needed to come forward. To dance with uncertainty means I must continue to cultivate the not knowing mind, offering a loop by which families can come into my calm t’s not so much where I can take the work, but more a question of where the work can take me. Simply put, being with the dying inspires me to live well.”

-Jessica Birnbaum, Very Special Kids