Very Special Kids for Palliative Care

Very Special kids is very close to our hearts as they were the first people to introduce us to a world where our child, and the prognosis we were facing wasn’t abnormal.

I will never forget my first visit to the Very Special Kids Hospice.

A Very Special Kid in a disability swing, sitting next it, his wheelchair - a child in palliative care
Very Special Kids provide support for children with life limiting illness and their families. It’s far more than end of life care, its a place whether families facing a stark prognosis can come together and be supported

We toured VSK

They invited us down for an open day. Were other new – to their service – parents came down, we probably had morning tea.

We met their chief medical officer – the GP in charge.

We heard from the incredible founder, sister Margaret about her passion. How she led the way in creating and transforming the way children in palliative care were managed and cared for.

Palliative care is a lifestyle support service, more than only for end of life.

They addressed every known pain point a carer has about asking (entrusting) someone else to care for their – sometimes super complex – children.

Even invited a parent down who often used the hospice to share their story.

VSK Knew What Issues We Faced

There is a lot of weight that comes with knowing;

Mismanaged care, even small mistakes, can tip a child onto a downhill slide that can’t be stopped.

They take that all in their stride. They have seen a lot of things, and understand the importance of the details.

The Facilities

The facilities are beautiful, they have a great size property.

We walked the grounds, visited the two apartments on the grounds in which families can stay.

Families can have their Very Special Kids stay in the apartment. Or have the child looked after in the hospice, so the family can come and go as they please.

This is a great opportunity to keep and eye on the care they receive, or for parents to have their input and share their experiences. This suits lots of parents, who feel that is best.

Or to let the child adjust slowly to a new place and routine of sleepovers without their primary carers. (Or the parents to get used to it.)

The Friendships

It was here I met my good friend Kat. She and my husband Luke were like the naughty kids in the back cracking jokes, and getting up to mischief.

Her sense of humour connected with Luke right away. The almost totally inappropriate jokes or as Kat likes to say ‘irreverence’ was a brilliant addition to our lives.

She was one of our first great connections. A mum who had a super complex child with a life limiting illness who didn’t stay in survival mode, or do anything by halves.

While she is one of a kind, so are all the families you meet at VSK. All parents to beautiful children with complicated life limiting illnesses.

This is reassuring in a strange and uncomfortable way.

The Staff

VSK hospice staff is made up of the doctors, nurses, carers, allied health team, some visiting guest like an art therapist, or a petting zoo or musical talent to entertain and delight the kids.

I am sure there are many admin people and managers too. Another side of the staff is the family support workers.

Family Support Coordinators

They also are mental health professionals but you never feel like its a specific focus as their approach is very relaxed. They come along side and chat.

Making connections where there is a need, or recommending who you need to look for. Answering concerns or just being a listening ear.

We’ve had two family support coordinators in our 4 plus years with VSK. I have appreciated having them both.

Our first connected us in with the area coffee mornings. It was again ressuring that people going through similar things to us, lived all over the place.

Our family support worker called in the heartfelt photography team when Matthew received his prognoses, the photo shoot is an absolute treasure.

Theyreferred us to places like TLC & Lions Club for small batches of funding as well.

Peer Support Events

VSK would pay for coffees (& sometimes breakfast or at least a snack for morning tea) while we parents talked and talked. Sometimes there would be two people, other times 5 or 6.

I don’t recall there being too many more than that.

Most locations didn’t have children along so adults could relax and talk. Take a breather.

Some parents, had lost their ‘Very Special Kid’ & those parents were just as welcome as those who had not.

I had several fears about what would happen if we lost Matthew one day. One, losing everything that we had gained from having him in our lives.

The special needs community & the hospital community were part of that. VSK has addressed that beautifully.

Their services begin with a life limiting diagnosis, and doesn’t end with the passing of the child.

They focus on supporting the parents to look after how they and their family cope with the unfolding tragedy.

We Used The Hospice Often

It took a while before the first time Matthew stayed at the hospice.

We had intended to stay with him at the parent apartments or him at the hospice and us at the apartments.

In the end we used it like we would a grandparent, for our other two typical children.

If we had work conferences or wanted a parent’s weekend away we would book Matthew into the Very Special Kids Hospice.

When you arrived at the hospice you entered the double electronic locking doors to the main room/foyer.

It was like a living room at home, with the nurses station tucked into one corner. The kitchen was off to one side, and oversized but not completely commercial . Therapy, meal times, hanging out could all be done in this space. There was even couch space with TV and play station hooked up.

After a couple of times, when we rolled in Matthew started doing his happy/excited dance and the staff soon rocked over to gush over having him.

Matthew clearly knew exactly where he was and loved it!

It was a huge relief, we needed a response like this. To be sure he knew where he was and that he loved it.

The whole team there was always reassuring.

Their in-house physio took great interest in Matthew and was super keen to make contact with his regular therapists to assist with his normal therapy.

Very Special Kids gave us treasured memories, great friends.

Most of all they gave us a place we didn’t feel alone and like nobody could understand. All the while pouring love into our family.