Meet our essential workers

How long have you worked at Very Special Kids?

I’ve been employed at Very Special Kids with the Family Support Team since May 2008 – 12 years.

How would you describe your role?

My role within the Family Support Team as a Regional Practitioner is very diverse and at times challenging. I currently support 53 families across the Hume Region and almost half of those families are bereaved. Prior to COVID-19 a normal working week would include counselling and emotional support to family members, either by visiting them at home, Hume Region office visit, phone, Skype or Zoom. Supporting families through the development and planning of family days, pamper days, joint events with Loddon Mallee worker, coffee mornings and bereaved coffee mornings.

Another aspect of my role is community engagement in the form of presentations to community organisations, regional hospitals and other health sector organisations, involvement in Hume Region Bereavement Network & Palliative organisations. The Ballarat Family Support Practitioner and I are to head up the Bereaved Parent Weekend which has now been rescheduled from end July 2020 to May 2021.

Describe a moment at Very Special Kids that stands out for you.

I will never forget the joy that I saw on Aiden Koch’s face at a Christmas party in Shepparton, as he went for a ride on a Harley Davidson motorbike. Aiden also loved horses and was able to have a horse ride at Riding for Disabled in Shepparton. Because it became more difficult to transport Aiden, three volunteers from RDA took a little pony called Pirot to the family’s farm in June 2013 so that Aiden could enjoy another ride. We didn’t know if it would happen because of threatening rain but Bonita & Merv were determined that Aiden would get his ride.

As he rode that pony Aiden’s face lit up and he loved every moment, even if we all did get wet. Tears of joy were shed that day.

How long have you supported the Koch family?

I have supported the Koch family since 2011. Over the last few years I have been inspired by the strength and courage of Bonita and Merv Koch as they faced the ongoing challenges to ensure that their beautiful boy Aiden’s life was the very best that it possibly could be. Sleep deprivation and exhaustion never stopped this couple from treasuring every precious moment of Aiden’s short life, and never losing hope. What stands out about this family; Merv, Bonita, Aiden, & Amber are the close relationships, each with the other, and the strength of their love for each other.

Aiden was an amazing little boy and although his life was emphasized by struggle, his strength, courage and his love of life enabled him to fight his way through many health crises.

How do you provide support to the Koch family?

Supports provided to the Koch family include ongoing counselling and bereavement support; both individually and as a family. Prior to COVID-19 counselling has been a mix of home visits, individual sessions at Very Special Kids’ Hume Region office and by phone. We have recently moved to Zoom and phone counselling support due to the situation. The family have actively attended local events and parent groups and have also attended the Malvern based Remembrance Day service.

Can you describe some of the challenges you normally face in your role as a Family Support Practitioner and what has changed during COVID-19?

Some of the challenges within the Family Support Team as a regional worker are the effective provision of support to regionally isolated families, the number of families on my caseload spread over such a large region, the issues around connectivity via Zoom or Skype where there is a lack of reliable Wi-Fi, size of my caseload with current families in Hume (now 53). It has been very challenging to support the numbers of families during COVID-19 while working from home. The usually highly diverse role is currently restricted to online & telephone or email contact and support to families. With some families having unreliable network or phone connections, the issue is exacerbated.

What does end-of-life care at Very Special Kids mean to the children and families we care for?

Because I am a regional Family Support Practitioner I have had minimal experience of end of life care at the hospice. Another bereaved family on my caseload whose baby girl died at the hospice a few years ago spoke very highly of the medical care and support their child received in the final days of her life. As a family they felt totally supported through the sensitive, compassionate care they received as a family at the hospice which helped them in their ongoing grief.

What’s involved in supporting children and young people receiving end-of-life care at the home?

Travelling alongside families whose child is dying or has died and sharing the intimate loneliness of the death of a child is a huge privilege. My role in the deteriorating days of Aiden’s life, as with many other families, was the provision of practical and counselling support to the whole family.

Following Aiden’s death, I was invited to spend time with, and support the family at Very Special Kids Hospice. It was an honour to be included in this precious and sacred space and is something that I will always remember and hold near to me. Simply sitting with the family in their grief and being present in that time.

How do you support the whole family through this experience?

Ongoing bereavement support is provided to families for as long as they need it. The support is offered through bereavement counselling and other bereavement programs available through Malvern and within the Hume Region.

How do you think COVID-19 is impacting the families supported by Very Special Kids?

Some families report that they are managing well and enjoying being able to be at home with their families. Others, and vulnerable or more recently bereaved families are indicating a further sense of isolation compounded through COVID-19.

What support is available to you as a professional working in paediatric palliative care?

Very Special Kids provides a beautiful culture and supports staff in many ways. Ongoing individual and group supervision sessions are complimented by the opportunity to seek external support and supervision as needed.

How do you look after yourself and recharge at the end of a difficult workday?

My home is on 20 acres with 10 acres of beautiful forest garden and has 5 labyrinths where I can meditate and reflect. I love to garden and working with plants, trees and the soil is very restorative.