Good Evening Ministers and friends.
I'd like to talk about the power of magical thinking. Don't worry I'm not going to talk about rainbows and unicorns.
It's two years since our once healthy daughter Mia was diagnosed with a rare genetic condition called Batten disease – she will be lucky to make her 10th birthday.
Mia was just about to turn 4 at the time of her diagnosis. She had been running around, singing songs and starting to count just like any other typical toddler – out of the blue she started having seizures…. and just as suddenly she was struggling to walk and talk.
So began our initiation into the confusing world of disability services – where Yes often means No. Where you are completely consumed just trying to navigate your way through a maze of hospital visits, access to education and equipment, funding issues, excruciating wait lists and of course piles of paperwork and endless red tape.
In the beginning Hamish and I simply believed what we had been told. How lucky we were to live in Australia – a country where the disability laws and policy settings were all about ensuring children like Mia led as normal a life as possible. That she would be welcomed to the child care centres and schools of our choice.
But what we quickly discovered is that even though denying access to children like Mia is against the law – in the disability world Yes does often mean No.
Our first shock came when we tried to get Mia in to the local community preschool she’d been enrolled at since her 2nd birthday. We had naively assumed Mia would be welcomed with open arms. But from the first meeting with the preschool director it was clear she saw Mia as a burden. Getting the funding for capital works was a major headache she told me. And what about the impact on the other children – the stress on her staff? Our 3 day placement was immediately dropped to just 2 days – and she strongly urged me that for Mia’s sake I really should consider one day a week or better still half a day!
Mia and I left that meeting in floods of tears. I couldn’t comprehend how this woman could be so concerned for everyone else except us - we’d just been told our beautiful child had a fatal illness and the preschool we’d always planned she’d attend was essentially turning us away.
That meeting at the preschool was such a shock I decided I should start preparations earlier with a local primary school– just to make sure they would be ready to take Mia when she turned 6 in 2 years time.
I was stone walled again. This time I didn’t get any further than the school receptionist. She didn’t see the point of setting up an appointment with the principal so far ahead of time. And she told me it would be almost impossible for Mia to attend there anyway because all the kindergarten classes were on the 1st floor.
I realised finding a school focused on inclusion was going to be more difficult than I had first anticipated.
After a few tours of schools for specific purposes there was a disconcerting process of Mia being put forward to a panel which determined – without any parental input or information of when the panel would be held or who would be in attendance – which school was most suitable for our child.
Luckily at this point the panel selected the preferred school we had visited.
Mia made friends instantly. But we discovered the limitations of sending our child to a small special needs school. At a time when we were already feeling isolated the school was tucked away and not many people in our local area had ever heard of it or even knew of it. Most of the parents relied on transport so there wasn't much sense of community, no play dates and we often felt kept at arms length. We always felt uncomfortable with the teachers referring to the children as "walkers or chairs".
It was at this time we were introduced to LifeStart - a breath of fresh air.
Our key worker coordinated round table discussions so Mia's goals were supported and helped us to make some progress so that everything didn’t fall through the cracks. Julia stepped in when necessary but allowed us to navigate. The processes were logical and helpful, she was always available and had a network that supported her offering practical resources and insightful information.
When Mia’s support teacher and two best friends left the school a year later things quickly fell apart. If Hamish or I arrived early to collect Mia from school it was common to find the students in the playground with out any engaging activity. Lined up against a wall just far enough away from the next child so they couldn't touch each other - it was heart breaking. In the classroom watching YouTube and videos was typical. Mia missed her friends Lukie and Poppy pushing her wheelchair and trying to cuddle her. The students in Mia's new class all had similar mobility and communication skills to her. It impacted Mia immensely all her physical and verbal interactions with her peers had vanished and school was no longer stimulating or fun. Her teachers also struggled to push all the wheelchairs in the classroom around the school at the same time. Collecting Mia from school one afternoon in April this year she was completely soiled through two nappies and her tracksuit pants, I met with the school the next week with our key worker to discuss our concerns and hopeful to resolve them but I left very disappointed and concerned about the care Mia would receive so withdrew her without another school to go too.
By this stage we couldn’t even throw money at the problem. Mia’s condition had deteriorated and we were told she wasn't eligible for the private school for children with disabilities because her needs were too high. And the alternative school the government selected for Mia wasn’t appropriate.
According to our disability liaison officer and network director from the department of education neither of whom had ever met Mia she wasn't suitable for mainstream school, they suggested home schooling to us. They also labelled us, pretty quickly I might add as another difficult family.
This is where the magical thinking comes in. Hamish and I have always been determined to give Mia the happiest, most loving and magical life possible.
That meant allowing Mia to experience life in a mainstream school. It was only a distant dream, and felt like we pushing the boundaries and I was scared I was setting us up to fail but we had to give it a shot.
Finally we met with our local primary school and honestly it felt like coming home after a really crazy long journey.
The colourful, bright classrooms. The singing, the happy buzz. I was already imagining us rolling down the hill from our house with no more lugging the wheel chair in and out of our van. Mia's cousins were part of the school so we knew children there already many of our neighbours kids and our younger son would eventually go there too.
It's six weeks since Mia started school at Harbord public. And you only have to look at this photo of Mia, surrounded by her classmates reading to her and holding her hand, to see how much it has transformed our lives – and the lives of those around us.
Being included in a vibrant, caring school community has offered up the support and connection we craved. its brought a warmer dimension to our lives with new friendships that will last and sustain us beyond Mia's lifetime.
The school principal is everything parents hope for..….He was empathetic about all the hoops we'd jumped through to get to this point and apologised for the bureaucratic processes. He stopped to ask us our hopes and dreams from the outset and never implied anything was too difficult.
Inclusion might not be taught as part of the school curriculum but I don't think anyone could have anticipated the positive impact Mia has had on her new teachers, peers and parents. Kindness, empathy and acceptance are beautiful qualities to foster in our children.
An older student smiles at me everyday when I passed her in the playground, she acknowledges Mia warmly. Surrounded by a little gaggle of friends one day she proudly tells me her sister Bianca uses a wheel chair too
"Mia is the best thing that's ever happened to our daughter Rose". I was told by the 6 year olds mother one afternoon, I've heard this sentiment from many parents over the past few weeks, at the recent P&C meeting parents and staff mentioned how positive its been having Mia join the school.
Mia is going to Chloe's 6th birthday party this Saturday and John's in a couple of weeks. Last Sunday was spent at an end of year class picnic and it was a magical day.
Without the support and encouragement from our key worker Julia and the team at LifeStart who helped navigate obstacles, were my sounding board, offered strategic and goal orientated support, came to meetings at the schools, offered insight into processes, encouraged and commiserated. Always with Mia's best interest at heart. Mia would not have made the transition to Harbord public school.
Thank you LifeStart for your support and helping our magical dream become our reality.
Stories of our love, heartache and friendship. Written by a mother.