Tag Archives: Charity

Changing with the seasons

Very Special Kids ‘Seasonal Connections’ program acknowledges the seasonal nature of grief and how family’s individual experiences can change over time. It is a quarterly bereaved family event, which invites Very Special Kids families to participate in a therapeutic bonding activity in memory of their child or sibling.

To mark the end of summer, the first event was held on Sunday 27 February, families worked together to create immersive artwork using their hands and fingerprints. They also created wind twirls which were hung on the trees to catch in the breeze, creating beautiful art on the lawns of Very Special Kids.

Seasonal Connections brings bereaved families together four times a year to celebrate the changing seasons. At each event, families can sit on the Very Special Kids bench and capture the season in a portrait with their family. As seasons pass, new portraits and artwork will be created, providing a tangible representation of their growth and change over the season.

This Very Special Kids program was adapted from a program developed by the Child and Family Bereavement Service in Cardiff, UK (Hillock, Feeney & Rhinehart, 2017). Seasonal Connections aims to expand the Cardiff program’s design to be family-focused, rather than aimed only at siblings. It will allow families to remember and reflect on their grief across changing seasons, while also connecting with other families who understand what it is like. The program acknowledges the seasonal nature of grief and family lifespan changes over time, including unique significant events for each family.

Bereaved families can join together, share their stories, enjoy an afternoon picnic, play some games and create some beautiful works of art together.

Very Special Kids welcome bereaved families to join us on 1 May for the golden warmth of the next Seasonal Connection – celebrating autumn. For more information please contact Bernadette (bmcgregor@vsk.org.au), Edwina (ehargreaves@vsk.org.au) or Mei (mgoh@vsk.org.au).

Tips to help a grieving loved one

Facing childhood illness and death is an overwhelming and traumatic experience, and everyone in the family and wider community can struggle to find their place in the process of grief and loss.

In honour of World Social Work Day on 15 March, Family Support Practitioner, Edwina Hargreaves, has shared some important tips and advice, so the communities surrounding bereaved families can better connect and support their loved ones.

Although dealing with the loss of a child is a very personal process for each parent, the following seven tips are practical ways in which family and friends can provide support during this difficult time.

Get cleaning
Do some of their housework such as cleaning, washing or gardening. If your friend belongs to a community or school group, it may be useful to create a roster for those people who want to help out. If your friend is not comfortable with this, a simple visit to their home to observe and undertake daily tasks or jobs can make a big difference.

Answer their phone
Many parents of sick children find it overwhelming to respond to phone calls and repeatedly tell their story. It can be incredibly helpful to have someone who coordinates the sharing of updates and information (often via social media) and who can take the phone calls for them.

It is also important to check in on your friend with a text message, and don’t stop when you get no response. Even if they don’t respond, they notice and it can make a huge difference to their sense of being supported.

Start cooking
Bring over pre-cooked meals which just require reheating. Or send a text to your friend saying, “I am picking up dinner, can I pick up dinner for you too?”

Offer to drive
Takeover or support daily duties, like collecting children from school and taking them to their after-school activities, often siblings can miss out on these because their parents are overwhelmed and find it difficult to manage.

Another offer which can be appreciated is the offer to drive the family to hospital visits, particularly if one parent is still trying to work.

Be understanding
Remember that your role is to alleviate the family’s stress. They may not want these practical supports and it’s important that we are respectful of this (and do not take it personally). Navigating grief is a very personal process for each person, so their needs may vary. It is important to listen and respect.

Sending care packages
Fill a bag with DVDs for the other children, books, magazines, and personal care items. This is a way to show you are thinking of the family when you’re not able to physically be present.

Never stop the invitations
Include parents in everyday activities, even when you know that they will not be able to participate. Parents often feel disconnected from their friends, so always offer to meet for a coffee, go for a walk or go to the movies.

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Very Special Kids engages with the community, to improve conversations around illness, grief and death, and lead our society to become a more supportive and knowledgeable place for families who are suffering through the death of a child or young person.

Very Special Kids provides specialist palliative care for children and young people with life-limiting conditions, and tailored support for their families – through life, death and bereavement. Our integrated approach includes emotional, clinical and practical support to improve quality of life and create positive, lasting memories. Learn more about our services here.

A Very Special Home

Award winning new home builder, Henley Homes are well entrenched in many communities across Victoria, and so too is their dedication to making a difference in these communities. This year, Henley Homes will help build a better quality of life for sick children and their families by building and selling a stunning double storey home to raise much-needed funds for Very Special Kids.

Construction of one of Henley’s most popular home designs, the Ashbury 30, commenced yesterday at The Dales, Bonnie Brook; an exclusive Henley community in Melbourne’s outer west, just 10 minutes from Caroline Springs.

Ben Griffiths, General Manager of Henley’s completed homes division said, “We are very proud to be in a position to assist Very Special Kids raise funds to rebuild their hospice. The work they do makes a big difference to a lot of Victorian families. Our aim with the building and auction of this double storey home is to ensure Very Special Kids has the resources to continue the care and support for children and young people with life-limiting conditions and their families.”

One lucky buyer will get to enjoy a beautiful home and the serenity of living in Bonnie Brook. Only 10 minutes from Caroline Springs, The Dales will feature beautifully manicured landscaping with all the amenities you need close by including, schools, shops, medical facilities, freeways and train stations,” added Ben.

Michael Wasley, Chief Executive Officer of Very Special Kids said, “We are thrilled to be working with Henley Homes on this exciting new partnership. Their incredible generosity will help future proof the operations of our new world-class hospice which is set for completion in early 2023.

“Corporate partnerships like these play such an important role in ensuring that we can continue to provide specialist palliative care to improve the lives of many children and young people, and their families well into the future,” Michael said.

Image of new Henley Homes house The double storey 30-square home boasting Henley’s popular Novello façade includes four-bedrooms all with walk in robes, four living areas and an expansive master suite with an oversized dressing room.

The home will be appointed with luxury fittings and fixtures, and finished with professional landscaping, decking, ducted heating and window coverings – everything a buyer needs to move straight in.

It will hit the market in early November with all proceeds from the auction going to Very Special Kids.

Yarraville Family Day

On Saturday 19 February, Very Special Kids’ Family Support Team opened the doors to our new Yarraville office for its first Western-Metro Family Day event. The Yarraville office is set on a green reserve which provides the ideal space to bring families together.

We welcomed families from the Western suburbs of Melbourne to view the office and meet other Very Special Kids families for a day of fun and activities. Families enjoyed a paper flower making activity and a pizza lunch in the park. The weather was perfect, families were excited, and the Very Special Kids volunteers were crowned the “Seven wonders of the natural world,” as they kept the little ones entertained.

Intimate local events, like this, offer Very Special Kids families a safe space to meet other families who understand what it is like to navigate childhood illness. As a result of COVID-19 this is the first opportunity a lot of families have had to reconnect. One Very Special Kids parent shared, “It’s really good for my kids to be able to see other Very Special Kids children in person again.”

For the children and young people who attended, it was great to have the opportunity to play and have fun with other Very Special children and their siblings. One, 10-year-old child excitedly said, “I love coming to family days and to sibling days…can you do more of them?!”

Very Special Kids support over 850 families across Victoria through life, death and bereavement. Our integrated approach includes emotional, clinical and practical support to improve quality of life and create positive, lasting memories.

We are very grateful to Freemasons Foundation Victoria, for their generous support in making the Yarraville Family Day possible.

World Music Therapy Day

To honour the vital role music therapy plays at Very Special Kids, our Registered Music Therapist and Zoom Room facilitator, Helena has shared the important role music plays and how we can use World Music Therapy Day as a reminder to appreciate music and it’s healing powers.

The importance of World Music Therapy Day

World Music Therapy Day provides us with an opportunity to reflect on the healing power of music and how we use music to enhance our wellbeing. Music has been used for thousands of years across many cultures to foster healing, connection and community, and music therapy draws on these fundamental aspects to support people in their daily lives.

Music therapists are trained to use music to support the physical, cognitive, emotional and social needs of people of all ages and abilities. Music therapy helps create a safe space for processing some of the challenges we face. Through creating and sharing music, we aim to foster trust and connection with others, promoting a sense of belonging and community.

A nurse is helping a young boy play maracas and drums. He is smiling and enjoying himself.

Jett loves music therapy with the hospice team.

The versatile nature of music and the differing ways in which people connect with music makes my role quite unique, in that I can therapeutically adapt musical interventions to meet different needs. Within a single day at Very Special Kids, I can collaborate and co-facilitate a music session with Leo (Occupational Therapist) and Belinda (Physiotherapist), focussing on physical needs such as trunk control and reaching forward, making choices and communicating with them, and of course having fun. Within the same day, I might also facilitate a music session for a family where I’m cultivating a safe space for parents and siblings to process grief and loss. Using music as a support tool that is motivating for engagement and emotionally meaningful is very special to my role.

World Music Therapy Day is also an opportunity to look at how we use music currently, and perhaps how we can use it more intentionally in our daily lives to support our own wellbeing. Whether it’s singing your favourite song in the car or having impromptu jam sessions using homemade instruments with your children, music is a resource that anyone can benefit from. Music provides us with an avenue to communicate and express our feelings in ways that extend beyond words and can take us on a journey, allowing us to explore and experience different emotions. It provides comfort in times of need, it motivates us to move and dance, and it provides relief from the chaos of the outside world.

The next time you listen to music, consider being more present and allow yourself to be purposefully engaged in the experience and how it feels. There’s no right or wrong way to do it and participating in music doesn’t require specific skills or knowledge to feel the benefits. There are many different ways to engage with music and it is a powerful tool that can positively impact our lives.

Thank you to the Campbell Foundation, whose generous support allows Helena to bring the joy of music to the children, young people and families in our care.

Navigating the ‘return to school’ when your child is high risk

Everyone has felt the impact and lasting ramifications of the COVID-19 pandemic, no one more so than the children and families we support at Very Special Kids. Not only are they facing the difficulties of navigating their child’s life-limiting illness, but ongoing isolation from social and support networks has been tough for families throughout the pandemic.

When schools reopened at the beginning of the month, many Very Special Kids families were faced with a difficult decision. Do I send my child/ren to school? Or do I keep them home?

“There is no right or wrong decision, but it is fair to say the question has weighed heavily on families with vulnerable children, as they struggle to find the right balance for their child, themselves and the whole family unit,” shares Family Support Practitioner, Angela.

The impact on families

Kylie is one Very Special Kids mum who has faced this difficult decision. Her son Mitchell, who is seven-years-old, was born with a severe brain condition that causes him to have unprovoked and recurring seizures.

“The last two years have been the hardest,” she shares. “Mitchell has been put on life support six times because they haven’t been able to control the seizures. It’s terribly traumatic for him and because of COVID only one parent can be there to support him.”

Mitchell started school when the pandemic first broke out in 2020, while his condition has caused him to miss school, the anxiety of the pandemic and Mitchell being high-risk, has added another level of disruption for the family.

“While many people are so happy for school to return and yes, it is important for children, their education and their mental health. There’s a portion of the community that unfortunately don’t have the same feelings when it comes to returning to school,” says Kylie.

Another mum supported by Very Special Kids, Bronwyn, mirrors this sentiment. “I am having to make uncomfortable and possibly life-threatening choices every day sending my child and their sibling to school… We live in lockdown and my kids miss out on social events just to keep my very vulnerable child safe.”

Families are experiencing a constant heart and head struggle. They want to ensure their child has the best quality of life, but the risk of exposing them is a very real threat for families of children battling illness.

Family Support Practitioner, Damienne explains, “Very Special Kids families have felt a whole mixed bag of emotions. They are frustrated, worried, infuriated and lonely at times. One family shared with me that the “opening back up” has been even more isolating for their family as they try to keep their vulnerable child safe and well until things feel more stable. For now, they’ve had to make the difficult decisions around cutting back on work, keeping a sibling home from school and minimising any social interaction.”

Angela continues, “As a Family Support Practitioner our role is to listen and support families facing these challenges and where possible, create opportunities that may help them keep their children engaged while the wait continues or to manage the feelings of uncertainty that comes with returning to the ‘world’ out there.”

The impact on siblings

For Kylie’s eldest daughter, Isabelle, school should be a time of excitement and joy, however, the ten-year-old has felt quite nervous and anxious about the impact this could have on her brother Mitchell.

“It’s a big responsibility sending her back and knowing that she could potentially get sick and bring it home, because at the end of the day she knows what the outcome could be. We know for her mental health, she needed to go to be with her friends and teachers.” Kylie says.

While the return to school has caused a lot of guilt, Kylie has learnt it was best to be completely honest with Isabelle and not try to sugar coat the situation. “We can’t say that everything’s going to be okay because we don’t know that it will be. We can only do the best we can. Whenever Isabelle would say she was nervous about going back to school, I would say, “Well, I’m really nervous too.” Just so that she doesn’t feel alone.”

Kylie’s family have been supported by Very Special Kids since 2019. She shared that this family support has been extremely helpful to Isabelle, making sure she receives the attention and care she needs.

“It’s been amazing to receive support for the whole family, especially Isabelle. We have a Very Special Kids volunteer who is like a big sister to Isabelle. She suffers from terrible anxiety, and it can be very difficult for her as Mitchell’s sister. She doesn’t get a normal childhood, so having dedicated time for her and her volunteer has just been great.”

The therapeutic support from her Family Support Practitioner Damienne, has also helped Kylie to navigate her emotions during this difficult time.

“I’m very thankful for Damienne. She is there whenever I need her. She’s always checking in, just seeing how Mitchell, Isabelle, myself and Shane are coping. She’s also done some sessions with Isabelle to try and help her manage her worries. I am extremely thankful. Thankful for all the resources she sent to me and the hours on the phone talking – it’s been wonderful.”

“As parents of vulnerable children, we have to be hypervigilant. Even with Isabelle, now that she’s at school we have to be careful what she does at home. Making sure that her hands are clean when she plays with Mitchell and telling her she can’t really give him kisses is heart-breaking. Things like that is just what other people would take for granted”.

Feeling isolated from the world

For families who have made the decision to keep their children home full-time, the decision does not weigh any easier. One family shared, “since June 2021, we have not been anywhere, prisoners in our own home… We are isolated even in normal times let alone now, more so now because no contact with work and school, social circle even smaller. We’ve been forced to keep our children home and continue remote learning…I have effectively lost 75 per cent of my income due to needing flexibility.”

Many families with children and young people who are high-risk have felt isolated during the pandemic, their support networks shrinking as they need to limit their families amount of contact for the safety of their child.

Kylie shares how her mental health has been impacted. “I really feel for all the families that are looking after vulnerable children. It’s not only the daily stress and anxiety that comes with looking after a sick child, but it’s also looking after your own mental health.”

“I’ve been struggling with PTSD just because of all the trauma that I’ve seen Mitchell go through. There is layer upon layer, and it’s tough. At the moment, there doesn’t really seem to be a light at the end of the tunnel because we don’t really know how long this is going to hang around for.”

When asked what she would like to say to other Very Special Kids families who are experiencing these similar emotions she said, “I hope that by hearing how much others are struggling, other parents can feel a little bit more normal. It does bring a bit more comfort to know you are not alone and are supported.

“I know from the outside, it might look like we are coping okay, but the reality is that every day can be a struggle and every day there are challenges. I think it’s a good reminder for other families to know they are not alone here. Reach out to Very Special Kids or your family and friends. Try to stay strong and lean on those who are in your corner.”

10,000 swings for Very Special Kids

10,000 golf shots in 24 hours, might sound like a difficult feat, but for Very Special Kids’ parent, Trevor, it is a welcomed challenge to support his son Harry and fundraise for other families who are facing life-limiting childhood illnesses.

Trevor and his friend Damien will be fundraising for Very Special Kids at the Curlewis Golf Range on Monday 21 February 2022 by taking 10,000 golf shots in 24 hours. They will be livestreaming the entire event on their Tredam Golf YouTube Channel and hope to raise $5,000 to help other Very Special Kids families, like his own.

Trevor shares, “Throughout our journey, Very Special Kids have supported Harry and my entire family, so I really wanted to give back and help raise as much money as possible for this wonderful charity that helps so many families, including my own.”

When Trevor and his wife Eileen were expecting their third son, they imagined the pregnancy would run like any other. However, during a routine pregnancy scan, they were given the news that their baby’s kidneys were larger than normal.

Their son, Harry, had a condition called posterior urethral valves, which causes a blockage near the bladder leading to kidney swelling and damage. Harry was born eight-weeks premature, with severe kidney failure.

“When Harry was born, he had less than 10% kidney function between the two. After two weeks in hospital the doctors told us that he’s not going to make it, and to start preparing for the fact that he wasn’t going to live,” says Trevor.

Trevor and Eileen never gave up, they stayed by their son’s side and after four months in hospital, the family were finally able to bring Harry home. He was on dialysis until 2017, and when he was old enough his father Trevor donated his own kidney for Harry’s kidney transplant. This changed his life and now at nine-years-old, Harry is thriving.

“It was a challenging time for my whole family, and we are so grateful Very Special Kids was there to support us. When we had the transplant, Very Special Kids put us up in an apartment near the hospital so that we could be close to Harry. It allowed myself and the kids to be there to support him.

“It’s not often, a charity looks after the whole family of the people who have an illness. The impact on siblings is often forgotten, but we have two other kids that are going through the same thing and aren’t receiving the same level of attention as their brother. So, support for them and family days is something we can all look forward to together,” he says.

This was the reason Trevor wanted to give back to Very Special Kids and decided to take on 10,000 shots in 24 hours at the Curlewis Golf Range. The challenge will be livestreamed for the entire 24 Hours, and Trevor shared that there will be some great prizes up for grabs every few hours.

“We’ve got a round of golf for four at The Kew Golf Course, Lara Tyre and Battery are giving away $600 worth of tires, and there is plenty more prizes set to be announced during the event. I am so grateful to everyone who has supported, especially Curlewis Golf Range for hosting me and Damian for the 24 Hours so we can raise money for Very Special Kids.”

“I look at the other families going through similar things to what we have been through, and my heart goes out to them. Fundraising can help other families like ours, receive the care and support they need. I am doing what I can to help these other families who are going through a tough time or worse than what we’ve been through. Every dollar counts.”

If you would like to support Trevor, you can donate to his community fundraising page here. Or tune into the livestream on the Tredam Golf YouTube channel any time between 7pm Monday 21 February to 7pm Tuesday 22 February.

A parent’s view on the Bereaved Parent Support Group

Very Special Kids supports hundreds of bereaved families, and over the past 12 months we have stayed connected with these families through an online Bereaved Parent Support Group. Every session has been different, some small and some large, with attendees from across Victoria and some interstate. Connections have been made and relationships formed, with acknowledgement that while everyone has a different story, they are on a similar journey.

An anonymous mother, who has attended the Bereaved Parent Support Group has kindly shared her own reflection on how the support group has supported her through the grief of losing her child. She shares:

“In 2015, Very Special Kids joined us on our extraordinary journey with our two very special children.

Over the many years, we have received support and care beyond our expectations. Mostly recently, I was offered support through the Bereaved Parent Group. I didn’t think that any kind of support would work for me, I was and still am in disbelief of my life’s greatest tragedy. However, I agreed to join the session after talking to my Family Support Practitioner.

As I waited for the first session, I could not believe the intense emotions I was feeling. A part of me did not want to attend because it would mean I was accepting what happened. The roller coaster of emotions was quite draining.

On the day of my first session, I decided I will be invisible. I will turn off my microphone and video, so I am there but not there. This was the first time I met Family Support Practitioner’s, Edwina and Kevin. I realised here are two absolute strangers giving their time after work to support parents like myself, how could I not want to speak with them?

When other parents joined the session and shared about their precious child, I was speechless and relieved. Speechless because of their courage and relieved to know they have been where I am.

The more parents I met the more I realised I have found people who “get me”. I have a space where I can cry my heart out, feel another parent’s pain, be inspired by another parent’s journey and listen, listen, listen to others speak my words… a connection I cannot find anywhere else.

I felt it is a space where I can “be me”, free to talk about my precious daughter. Tell her story, share our rich and blessed life with supportive parents who understand my grief.

When I was a child, I learnt a beautiful song “Count your blessings, name them one by one”.

I count Very Special Kids, as one of my blessings.”

Adventure Park – Family Fun Day

On Sunday 30 January Very Special Kids hosted our first family event of the year! Families supported in the Barwon, Grampians and Southwest Victoria regions reunited for a Family Fun Day at Wallington Adventure Park for a fun day roaming the grounds, enjoying all the rides and activities on offer.

The Adventure Park has hosted Very Special Kids Family Fun Day for over a decade. This year, 120 attended, the kids enjoyed splashing in the water, and going on all the rides, most not leaving until the last possible moment!

Families have reported a very successful day at the adventure park, sharing their feedback on the enjoyment the day has brought to their whole family. Read some of the positive feedback parents had to share about their day:

“I loved the activities and the chance to talk with other families.”

“Since losing Jonah, it’s a way my family remain connected with him. It’s also a pleasure to meet other families and build long lasting friendships where we can all support each other. It’s a great day out to simply have fun splashing around and enjoy a day away from grief.”

“It was great to have the chance to do something fun together!”

“The friendships we continue to make within Very Special Kids to know we are not alone. It’s a great day out were we all can enjoy a ride, waterpark or just hang out away from grief. It is now our annual event for us as a family to enjoy.”

“I am not in a position to afford this once yearly trip for my boys without the support of Very Special Kids.”

“Very organised, staff and volunteers are available if needed. Lots of fun for all the family”

“To make family memories, enjoy an outing with family that we normally couldn’t do”

“Fun day out for the whole family, nice to catch up with the faces behind Very Special Kids, who help our family, not concerned about having all of our medical equipment with us because the staff and volunteers are around.”

Youth Advisory Group Q&A

The Youth Advisory Group (YAG) is a new initiative, set to give very special siblings between the ages of 14 to 25 a platform to be heard. We spoke with Very Special Kids’ sibling, Jude about the new program and what it means to him to have the chance to join the conversation.

In what way has having a sibling with a life-limiting condition changed your life?

When some people go to the hospital or maybe the emergency room, it feels slightly stressful, or it feels very cramped. The smell of hand sanitiser might be a new thing to most people in 2020 and 2021 because of COVID-19, but for me, it’s just the smells of my childhood.

Since I was 13, when my brother Joel passed away, I’ve learned a lot about myself. I learned a lot about life in general. It can sometimes be difficult to separate what has changed my life because of my brother, and what I have learnt from just growing up.

What does it mean to you to be part of the Very Special Kids community? Has it helped to connect with other Very Special Kids’ siblings?

I count Very Special Kids as a second family. Not just because of the support, but because of the genuine friendships that I’ve developed with volunteers and the other siblings who understand what I’m going through. The conversations I’ve been able to have and the relationships I’ve been able to build with different people has been amazing.

A lot of people don’t understand that even when I’m smiling and I’m genuinely having a good time with them, there’s always a bit of sadness. Kind of just lingering there. But Very Special Kids is one of those places where I feel like I can truly be happy and be myself, having a great time, there is just a different type of understanding.

Why do you think it’s important for young people to have a say?

In this decade, young people are a bit more vocal and want to get involved. As the youth who are being supported by Very Special Kids, we can talk to other youth members, and understand what they want out of each program. Let’s say, I’ve gone to a camp, I’m able to see what the other youth members are experiencing and can take that experience back to the group. It really can allow events to be tailored to better fit the needs of different youth. Which is really awesome.

Every sibling has a unique perspective and experience, why do you believe diversity is important in decision making?

It is important to have diversity, especially in age, but also in experiences. Each person is so different, and those different voices are going to make the experience much more inclusive to everyone.

What excites you most about joining the Youth Advisory Group?

It couldn’t be a better cause, or a better group to volunteer with than Very Special Kids, because it’s so close to my heart. Personally, Very Special Kids has impacted my life so much, so to give back in this way and be able to have the privilege of having a say means a lot to me.

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YAG meetings will be held bi-monthly and can be attended by siblings from across Victoria. We want you to lead us and advocate for what is important to you, so we can work to make it happen.

If you ticked YES to all these boxes than take the next steps and apply to make a change! Please complete the expression of interest form here by Friday 18 February and we will be in contact soon.

If you have any further questions about the Youth Advisory Group, please contact Jess at jbirnbaum@vsk.org.au or Damienne at dmor@vsk.org.au.