The benefits of peer support
Many parents raising a child with a delay or disability have found comfort and support from talking to other parents who may be travelling a similar path. They have reported feeling less isolated and better understood, and a positive effect on the relationship with their child and their relationship with their partner.
Today we have a Q+A with Marie Vlahakis, mother of Kosta who shares with us her experience of peer support and how it has helped her and her family and motivated her to build her own peer support networks.
Tell us about your journey as a parent and how you came to reach out and find support through your peers:
Our journey started when Kosta was around 15 months old when we noticed he wasn’t meeting the milestones like other kids his age. At 18 months, he received a diagnosis of Autism, and we were told to go and start Early Intervention. We didn’t know what the diagnosis would mean for Kosta or our family and felt isolated. A few years later, our son got an inclusive placement at the preschool of our local early intervention provider, Plumtree. The day we walked through Plumtree’s doors changed our family’s life forever.
The preschool recommended I try out MyTime, a facilitated face to face peer support program where parents of children with disabilities meet and share experiences. I was a bit hesitant but went along anyway. Kosta was due to start school in 6 months, and we were urged to send him to a Special School. I wasn’t feeling comfortable about this, but I wasn’t sure what our choices were. I brought this up during My Time, and one of the parents said – Do you realise you don’t have to accept what they are telling you? I had no idea. They explained that we had options, such as a support unit in a mainstream setting, based on their experience and knowledge navigating this themselves. I felt empowered and informed. From the first visit, I could see the value that peer support through MyTime was already bringing to our family.
Around the same time, I went to a Toilet Training Workshop that Plumtree was running, and my husband Vayios came along. He was initially struggling with accepting the diagnosis and was not keen to engage or know anything about the disability world, which was hard. But going to the workshop, changed him. One of the leaders, Sylvana, shared the journey of her adult son who has a disability and their successes. It moved my husband and opened him up to the possibilities for Kosta. He saw the value in peer networks and from then on was keen to go to other workshops and connect with others. He then joined with me an 8-week program run by Plumtree called Now and Next. When it finished, we became part of the alumni community.
What benefits has peer support brought your life?
Where do I start… It’s opened up my eyes up to a whole new way of life. It’s enriched our lives. The people we’ve met in the peer groups have become our tribe, and we’ve made lifelong friends. My husband has made friends through MyTime Dads. He has grown so much from this, to be the best Dad to Kosta he can be.
With the right peer support network, you don’t have to feel isolated or lonely. I was lost beforehand. I had and have a lovely group of friends of typical children, but no one who understood some of the experiences I have with Kosta. They are fantastic, but they don’t always understand. I have to teach and educate them. With the parents I’ve become friends with that have a child with a disability, I don’t have to educate them. They get it.
I get inspired by all the other parents of children with disabilities, who are like me, focused on giving their child the best life they can. I have a community I connect with in ways I never realised I could have.
I have learnt so much from other parents sharing their knowledge and what they have found works well with their child. I’ve been able to find out and tap into the different things available to parents and families of children with a disability. It is great having a group of people to go to and ask about resources.
It’s opened so many opportunities for Kosta also, such as finding out about a chance for children to go on a Qantas Jumbo Jet Flight, which he loved! Another example was a parent told me about a supported program set up for Autistic children to learn how to surf. Kosta likes the pool and the beach and is a daredevil. He’s not afraid of the rough and tumble, so I thought we would give it a go. They put a safety vest on him and had two instructors take him out in the water and put him on a surfboard … He absolutely loved it, the whole time he wore a smile from ear to ear! I knew this was one of Kostas strengths, so I reached out to my parent network to find somewhere for Kosta to start surfing lessons. He’s in lessons now, and we love watching him from the sand and seeing how free and happy he is living his best life! All the locals want to get to know and learn about Kosta, they now know him and say hi, high five and have a little chat. He has built a community around him through this love of surfing.
Why did you decide to be a peer facilitator for MyTime and what other peer support have you been involved in?
When Kosta started school, in a support unit, none of the other parents from the support unit really chatted or were connected to each other. They didn’t always feel included at the school. So, I reached out to the head of the support to voice my concerns; they were great and asked me to be a parent rep for the support unit. I worked closely with the head of the support unit to bring the families together. We started a morning tea and built that community. Some of us became involved in the P+C and reached out to strengthen the relationship between the families in the mainstream classes and support unit. Now we don’t feel part of the school community. We have a mum’s group and have social catch-ups, that has led to our families catching up together too.
I got so much out of peer support myself I wanted to give back. It is something I have always enjoyed attending, and I love bringing people together. I am a huge advocate of the MyTime program. So, when I was approached with the possibility to run one myself, I jumped at the chance. It is a great forum and a safe space to learn and share with one another.
What advice would you give new parents who may be hesitant to connect with other parents initially?
Take that first step. Reach out. Find your tribe, your people. Don’t hold back and be open. Show your feelings and express how you feel. Someone has walked your path or very similar and can help guide you and be there for you if you need it. Don’t be afraid to make your own connections. It’s really important to not be alone – we are stronger together.
Thank you to Marie for sharing her experience of peer support.
If you are interested in connecting with other parents raising a child with a disability, you can join Reframing Disability’s free MyTime sessions on alternating Monday and Friday night’s. Marie and Kylie facilitate the MyTime groups and look forward to connecting with you there.