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.”
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.
“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.
