The difference between surviving and thriving!

Lived experience

Our contributors, our supporters and our board all have lived experiences. Here is mine.

Often when a parent contemplates raising a child with a disability, they are filled with concerns. It is not only a question of ‘How will I get through today?’, but ‘What does the future look like for my child?’. It’s daunting. Accessing information and understanding your circumstances while trying to navigate the possibilities for your child seem overwhelming. I know this firsthand.

As a child, I’m one of nine children. My big sister, three years older than me, was neurologically diverse and managing grand mal epilepsy. Life for her was tough. I saw the challenges my mother faced daily when trying to offer my sister opportunities and dealing with ignorance and a lack of support. Living in a regional area did not help matters. Yet my mother pressed forward: pulling my sister out of the mainstream school system when the bullying became too much to bear and home schooling her; continuing to seek opportunities for my sister and helping her develop new skills in the hope of attaining long-term employment. My mother was tireless and inspirational, I often consider now, that at times it must have been a lonely road navigating that path for her child.

Jump some years ahead and I’m the mother of five beautiful children. My third child is autistic. He is delicious and we could not have imagined the richness that he would bring the fabric of our family. Like most parents of children with disabilities, at first, I was struck with feelings of isolation and concern. I accessed multiple doctors and therapists for support of my child. Still, it wasn’t until I genuinely engaged with other parents who understood my worries, our needs and most importantly understood my child, that we began to thrive as a family and my child began to blossom. Finally, I understood what success might look like for him.

I had parented two children before my son arrived, but parenting an autistic child was new territory for me. The fact is, as a parent you don’t know what you don’t know. Meeting other parents with lived experience opened my eyes and allowed me to parent better. Talking with other parents encouraged me to seek new understandings and contemporary practice. It gave me tools to elevate my child’s day-to-day and help him thrive – it empowered him.

Reframing disability

What do we mean by that? Often society comes to the table with preconceived ideas about children with disabilities. In the past, we have seen practices and approaches that kept children segregated, invisible and pitied. Thank goodness things have improved, but there is a long way to go. We want to shift limited thinking, erase preconceived ideas and move away from the medical model. Instead we will create a model that looks at each of our children as a whole person – to make genuine citizens of our children. To have them reach their highest goals and to help them find their voices. In order to do that we need to set an example – we need to speak up. We need to empower ourselves to empower our children.

The difference between surviving and thriving!

In our daily lives we upskill in all areas. We have fitness goals and work goals – we upskill at work with training all the time. Our jobs depend on it.  Businesses allocate funding to make sure their staff remain current and on the frontier of best practice. Yet as parents, we don’t seek education in helping us to parent better – even though it is the most important and long-term job of our lives. We remain dormant, relying on habits that were passed on by those who raised us. Yet the fact is parenting can be supported with better education. When you know better, you do better.

When talking to groups about upskilling and developing their knowledge, I often tell a story. A young man is cooking a chicken for his girlfriend. She asks him why he cuts off the legs and wings to bake it. He doesn’t know – that’s how his mum has always done it. He calls his mum and asks her, ‘Why do you cut the legs and wings off the chicken before you bake it?’ She doesn’t know – that’s how Grandma has always done it. He calls his grandma and asks, ‘Grandma why do you cut off the legs and wings of the chicken before you bake it? She replies, ‘Because my stove was only ever that wide.’

We rely on what we have experienced.

We know that parents of children with disabilities want their kids to reach their full potential. It’s what keeps many of us awake at night. We know that nationwide parents of children with disabilities need access to information and resources, regardless of where they are living. We understand that the greatest asset we have is peer support. Travelling this path with peers who have broken ground before us can help us reach the desired outcome more quickly. Travelling this path with peers who appreciate our challenges and who can celebrate our wins – no matter how big or how small – is the difference between surviving and thriving. We understand that with the right support we can see our children live fruitful and rewarding lives.

Kindred is offering a scaffolding to families like ours, especially those in the formative years of this journey. It will set families on a path to success early, to fill their buckets with knowledge, networks and tools.

So how do we plan to do this?

1. Tools and resources

We offer parents a host of useful tools to help them navigate the day-to-day realities for families like ours. We are grateful for the NDIS, but applying and updating for funding can be overwhelming, so we plan to offer insights to help families navigate this process. We hope to support the most vulnerable families who were once supported by state funding programs and now struggle to transfer to the new system. We plan to offer links and downloadable content for parents to use when working with medical practitioners, therapists, schools and support care.

2. Learning workshops

Education is transformative. When our families thrive, our children thrive. We offer online workshops, webinars, conferences and mentoring. We plan to link our supporters to providers that offer the best contemporary practice. We aim to help parents of young children by providing them with online educational courses so they can improve their circumstances. 

3. Connecting families

Most importantly, we offer what every family needs, a community. A place where they are not alone. A chance for young families to engage with others who have similar lived experiences and whose advice could enhance their own realities. This is an opportunity to introduce mentors and peers, and hopefully create some lifelong friendships. We will host opportunities for families to connect and learn from experienced family leaders.

This site is a hub where parents can seek advice, gain resources and recommendations, and be heard. We know that this site will not only help the parents and children themselves, but the ripple effect will be far greater – for relationships, siblings, schools and communities. But most importantly, we hope that by developing better skills in our parent community, we will be raising a community of children who are empowered to advocate for themselves and reach their full potential. I often wonder what life would have been like for my sister, my parents, my family if we had resources, tools and support. Every child deserves a bright future, and we plan to create the ‘village’ that will help them get there.