For over 14 years I have provided emotional support, counselling and advocacy to families or individuals in a family whose child has a life-threatening condition or has died from one. I also train, support and supervise family volunteers and facilitate a range of group therapeutic programs for children, parents and families at Very Special Kids.

But right now during COVID-19 I have been supporting families with online counselling sessions and being with those that are at end-of-life in the Very Special Kids Hospice. The exceptional care these families have experienced and the opportunity to have the hospice and staff entirely to themselves has been unique. I believe it’s provided families with a haven at a time when the world seems to be a  little unsafe.

End-of-life care at Very Special Kids means hopefully that families can be together in a supportive environment where they can focus on spending time with their child without the worry of managing the
medical aspects of their child’s care. It allows for families to create special memories in an environment of love and support. I think COVID-19 is adding to the sense of isolation many of the families we work with already feel as a result of having an unwell child. For families with a vulnerable child they have been forced to make choices especially around care and support in order to protect their children, but this comes at the cost of bearing the care burden alone. They, like many, are also juggling having siblings at home and educating them whilst caring for an unwell child. I think for many bereaved families it has heightened their grief, whilst many have also acknowledged that nothing can be worse than when their child died.

I have learnt that ‘normal’ death and dying does not stop because the world is partly shutdown due to a pandemic. Death and dying during a time like this can add additional stresses to the families we work with who are sadly going through the death of their child. The additional pressures surrounding planning a funeral or memorial are a big challenge with restricted numbers and locations. For some the thought of a small funeral may be appealing but for others it can be devastating not being able to give your child the farewell you wish to. The option of delaying a memorial until the restrictions are lifted is a possibility but a funeral can also be a stepping stone to the next part of the grief journey and the absence of this may impact how families cope during this time.

I think supporting families at the end of their child’s life is such a privilege. I know I cannot prevent the inevitable pain that a child and family experience from the diagnosis and subsequent journey and death of their child. I only hope that the support Very Special Kids helps the pain to be more manageable in some meaningful way.

Please donate to ensure we can continue to provide this essential care to families.

The importance of play is well documented in early childhood literature. This importance is attached to the functions of play in assisting children to:

• express thoughts and ideas
• demonstrate emotions and understand feelings
• develop thinking and reasoning
• build relationships
• understand and make sense of the world.

Play offers opportunity to learn, grow and develop across all domains including social, cognitive, physical and spiritual. Play is a fundamental tool for children and access to play has been acknowledged as an important human right through the United Nations Convention on the Rights of the Child.

At the corner stone of play is the opportunity to develop, maintain and sustain meaningful relationships. In the wake of recent events this has never been more important. As we find ourselves locked down in our homes, isolated from community and networks we are reliant on finding ways in which to nurture our own wellbeing at the same time as our children.

In times of crisis and uncertainty play becomes a critically important tool for children and adults in order to construct and reconstruct their understand of what is happening, why it is happening and what does it all mean? Play has never been more important as we find ourselves forced into lockdown, physically distancing and managing new uncertainties of how long will this go on for and how long can I do this for? Play is a meaningful device for both children and adults.

The very nature of play invites a multitude of languages from which participants can pick and choose according to their likes, dislikes and strengths. Languages of play include speaking, moving, showing, looking, pointing, singing, painting, sculpting, making, constructing and many more. Play experiences to support these languages include:

• splashing water, making waves, e.g. bath time, water tubs, doing the dishes
• drawing, painting, making, cooking
• constructing, building e.g. LEGO, blocks, sticks, puzzles, cubby houses
• talking, telling, saying, singing e.g. stories, dressing up, puppets, plays, music
• problem solving e.g. board games, hide and seek, puzzles
• moving e.g. dancing, exercise and sports

For children where all or some of these languages are not accessible then enjoyment and understanding can come from watching others play and responding through smiling, speaking, seeing, watching, hearing and knowing. Play experiences are a means to provide active care to children and ourselves, they can provide relief from discomfort and immediate and lasting connections to support health, wellbeing and development.

Engaging in play with children and co-constructing new meaning relives the burden from the adult to ‘fix’ or ‘make better’ situations that are beyond their control. Play experiences offer the opportunity to engage in true acceptance of the current situation and sit in the uncomfortability of not knowing. Of being truly present in the company of another and through this process making memories together; developing ideas, thoughts and new understandings. Play offers unlimited access to different ways of doing and in these uncertain times can bring some comfort through releasing the need to go back to ‘normal’. Watching a child in the experience of play is mesmerising and enchanting. There is so much to be learned and so much to be gained from playing more, expressing more and fixing less.

Consider for a moment what does play look like for you and your family? How can you play more today?

Resources:

https://www.abc.net.au/abckids/shows/play-school/covid-19/12114308
https://www.chop.edu/news/health-tip/talking-children-about-new-coronavirus-disease-covid-19
https://www.startingblocks.gov.au/covid-19/activities-to-do-at-home-with-children/activities-to-do-at-home-with-your-child-during-the-covid-19-shutdown/
https://www.unicef.org/parenting/coronavirus-covid-19-guide-parents/indoor-play-ideas-stimulate-young-children-home
https://playgroupaustralia.org.au/covid-19-community-playgroups/

What is a child life therapist?

Child Life Therapists (CLT) work in healthcare settings supporting children and their families through their specific and individual journeys. The work of the CLT is primarily to support the child to have their rights, desires and needs met and where possible enable the child to find their voice in the healthcare environment. CLT work within the allied health team supporting families, professionals and the wider community to understand children’s capabilities and to create environments where children are listened to and respected. The professional boundaries of CLT extend beyond individual experiences with children, the work is designed to impact the environment and the people in it to ensure that children have the opportunity to express their wishes, be actively involved in decision making and find joy through play and recreational experiences.

What does it mean for you to be a child life therapist?

CLT offers broad and varied professional experiences that enable me to explore the many aspects of work that I enjoy including teaching, creative thinking, problem solving, team work, nurturing children and engaging with people of all ages.

I first found CLT at the Royal Children’s Hospital in 2000, I was initially challenged and intimidated by the fast paced, medically driven environment but soon realised that I thrived on the action of paediatric healthcare,  in particular the opportunity to learn new things every day and work with a wide range of disciplines including nursing, medicine and allied health. I also love the families, meeting new people, providing assistance as it is required and spending each day making a difference to their experience of hospital. I came to understand that there is no other job like CLT and that it allowed me to explore and enhance many aspects of my character including my interest in advocating for children, educating others, creating new programs, listening to children, responding to their wishes and supporting children to navigate their healthcare journeys with confidence and success.

I am thrilled to be at Very Special Kids and the opportunity this provides to create a CLT program specific to the hospice environment, bringing all my previous professional experience with me and working with others to design a service that meets the needs of children and families who stay at Very Special Kids.

What attracted you to the position?

I have always been drawn to CLT work and have been investigating ways to re-enter the healthcare environment after time away teaching in the Tertiary sector. The position at Very Special Kids came into my awareness from a number of angles, including 2 previous colleagues and a close friend. I knew that with this many people telling me about the position, I had to apply. And I’m so glad I did. The parts of the job that attracted me most was the opportunity to create a CLT program from scratch, working closely with the nursing team and the challenge of the palliative context. I thrive in environments where creativity is encouraged and ideas are nurtured and I knew that was possible here.

What is your reflection within working in a hospice setting as opposed to a clinical area and how do these differ?

The hospice setting is so different to a hospital. My first impression was of the nurses and the pure love, care and kindness shown to the children. The children are not referred to as patients and there is so much room for children to be themselves. The general feel of the environment is more relaxed, but I think the nurses hide their stress well. I do notice the absence of family, in previous roles I have worked closely with the family which helps to get to know the child but that is more difficult here. I like the communal and shared spaces as this allows me to ‘share’ my therapy and approach with others, although this does present some unique challenges.

How do you work with the other hospice therapist?

I am loving the opportunity to work in such a collaborative way with other allied health therapists. I share most of my days with Belinda (Physiotherapist) and she has been a huge help in assisting me to adjust to the environment. It’s so great to work with someone who is willing to collaborate as this has great outcomes professionally and for the children. Since starting we have had our first Allied Health Team meeting and we are working on ways to collaborate, such as planning for children, creating shared therapy goals and providing a comprehensive service to families. We are also very keen to make connections with the Family Support Team in order to understand the needs of children and families in more detail and provide services accordingly.

What have you enjoyed most about your role within Very Special Kids?

I have enjoyed being challenged. It took me a little while to feel comfortable with this but now I accept the gaps in my knowledge and the need to be proactive in filling these. I love to learn, which is what drew me to teaching in the first place, so I am thrilled that I get to do so much learning here, with so many wonderful people

What are you most excited/passionate about to develop within CLT within the hospice?

CLT is about relationships. I am excited to see what influence I can have over how these relationships are developed, nurtured and maintained over time. In addition, how these relationships impact the environment and ultimately outcomes for children, families and staff.