Monthly Archives: February 2022

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.”

Local Champion Award recipient – Roslyn Ferres

One of our remarkable volunteers, Ros Ferres, recently received the Australia Day, Local Champion Award for her long-term dedication and selfless commitment to helping others. This esteemed honour is well-deserved, as Ros has dedicated many years of her life to helping charities like Very Special Kids – supporting our services, since we first opened our doors in 1985.

Ros shares, “I heard about Very Special Kids through Tattersalls, when I discovered the great work the organisation does, I wanted to help out in any way I could. I always try to fundraise by selling merchandise, knitting quilts and selling items at the stalls.”

Ros has also been a volunteer with the Girl Guides Association for more than 30 years and is involved with numerous community groups assisting in various roles.

When asked what it is she loves about volunteering Ros shared, “it is nice to be able to help other people. One time while I was out fundraising with another volunteer, a lady asked me about Very Special Kids services. She had a family who was eligible and didn’t realise how much Very Special Kids could help her. Later that year, I saw her at one of the fairs. It was just beautiful to see her family getting the support that they didn’t realise was available to them.”

While COVID-19 has posed challenges for her level of involvement as a volunteer, Ros has still dedicated her time to knitting quilts for families and fundraising where possible. A modest volunteer, Ros did not expect to receive the Mornington Peninsula Shire’s award.

“I don’t need to be recognised. I just like to help. I have the time and I like to do it. I love volunteering for Very Special Kids, because everyone is treated equally, everyone is always included. It is just a really nice place to be”, she shares.

“If you are considering volunteering with Very Special Kids, don’t think about it, just do it. A lot of people don’t realise that being a volunteer means a lot more than just supporting at the hospice.

There is plenty of ways you can get involved and make a difference. Local crafts, working at the fair, admin jobs – there is something for everyone and each role plays an important part in making sure families receive the care they need.”

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.

Meet our new Family Support Manager – Jessica Birnbaum

We are excited to announce that Jessica Birnbaum has been appointed as our new Family Support Manager at Very Special Kids. Jessica has been with Very Special Kids for a decade, mostly as a Practitioner and more recently as the Deputy Manager of the department. She has significant experience in counselling support and has been a key support during COVID-19, helping to ensure families, staff and other stakeholders were continually considered and supported.

We had a sit down with Jessica to learn more about her new role, her background and her advice to families considering Very Special Kids services.

Can you share an overview of your new position at Very Special Kids and how you support the family support team?

The Family Support Team Manager oversees the daily operations of the Family Support Team. This includes the development and delivery of therapeutic programs, regular engagement with families to ensure their needs are being met by the provision of high-quality service delivery and clinically supervising and supporting practitioners in their role working directly with families.

You have been with Very Special Kids for 10 years, what has your journey been like so far? What inspired you to work as a Family Support Practitioner?

My journey with Very Special Kids began back in 2006 when I was a disenfranchised, out-of-work actress, seeking new meaning and purpose in my life. I heard Sister Margaret Noone on the radio talking about the Very Special Kids volunteer program which I then went on to join and become a home volunteer for five years. This was such a beautifully rich experience, and I was so impressed by the organisation and their capacity to really make a difference in the lives of others that I completely changed career paths and went back to university to study Social Work. I went on to obtain a Masters in Family Therapy and work with homeless families and young people in a variety of roles before joining the Family Support Team as a professional in 2011. I still maintain a connection with the sibling I supported as a home volunteer, she was eight when we met, and she is now 24.

What is something that other health professionals might not know about Very Special Kids?

Very Special Kids stays involved with a family indefinitely after the death of a child. Grief doesn’t follow a lineal path – it is messy, wild and unpredictable in nature. By not placing timeframes around this, Very Special Kids is able to support families to do the work and tend to their grief as needed. We help them integrate the loss through counselling, therapeutic programs, rituals, meaning making and ongoing connection to a compassionate community with shared experiences.

How would you like to see Very Special Kids programs advance in 2022?

I am looking forward to strengthening the therapeutic component of the programs we offer. This is an exciting time to engage in evidence-based practice that meets the diverse needs of the families we support. We have several carefully crafted program proposals, currently in development, that will further complement our existing suite of programs. I am also thrilled about the launch of our Youth Advisory Group and continuing to increase capacity to include the voice, opinions and ideas of children and young people in new and meaningful ways.

What is one piece of advice you offer when a parent is feeling overwhelmed navigating their child’s condition?

Being overwhelmed is a completely normal and understandable response to navigating uncertainty. In addition, the systemic challenges faced by the families we support, can intensify the emotional load and serve to further disenfranchise. At Very Special Kids, we view the family themselves as experts in their own lives and it’s our job to help them mobilise existing resources as a mechanism for advocacy, change and growth. This is about offering choice at all stages of their support journey and recognising diversity as a strength.

What is your favourite thing about working at Very Special Kids?

The opportunity to continuously learn, grow and evolve, both professionally and personally.

Do you have any advice for families thinking about using Very Special Kids services?

It can be daunting and unsettling engaging with a paediatric palliative care service for the first time and developing new relationships with health professionals takes time. Very Special Kids is focused on meetings families where they’re at and providing them with the opportunity to live fully. We try to support the system as a whole and offer a range of services in a kind, compassionate, consultative way.