Raising a kid with special needs in the country.
Some stories aren’t told by the data about distance and disadvantage and don’t fit with the dominant narrative of the bush being second best. My family’s story is one of these.
When you think about country Australia, excellent healthcare and top rate educational opportunities may not be the first things that spring to mind, especially if you have a child with complex needs. It can be a long wait to see a paediatrician, hard to get on the books with a speechie or an OT and if you are able to access a daycare centre, it’s not easy to find a centre with staff who are specially trained to support kids with additional needs.
These issues, these shortages, they have frustrating if not devastating impacts on families in country Australia. Regional, rural and remote families are allowed to demand better.
However, more millennials are moving to the country than ever before – there was a net gain for the regions of over 57,000 twenty-five to thirty-nine year olds in the last census period. So perhaps it’s not all bad news in the bush?
My experiences with my eldest son have taught me that whilst there are often less choices in the country, this doesn’t mean a lesser outcome.
Nearly 7 years ago, not long after having moved from Brisbane to regional Northern New South Wales, I was a first-time mum who received the news that my child had a severe developmental delay and a lifelong disability. Our son is autistic with ADHD and a severe language disorder – he’s largely non-verbal (this doesn’t mean quiet, by the way – he is without a doubt always the loudest person in Grafton Shoppingworld).
In those early days of trying to secure allied health supports, getting on a paediatric wait list and making that terrifying first call to the NDIA, I questioned if we could make it all work from our country home. Maybe we wouldn’t need to move straight away, but surely our son would have access to more and better supports in the city? I wondered if it was time to chuck the car into reverse and back out of our sea/tree change. And that made me really sad. I had a beautiful life planned for us here.
Spoiler alert, though, we stayed put. And it’s been the right decision for more reasons than I anticipated. Here are 5 things we’ve had access to for our son that I think are unique to regional life.
1. We have space
Our son needs a lot of it – space to be loud, space to run, space to be himself and we have that in buckets here. Outside of school holiday times in Yamba, we are quite often the only people on the beach, which still blows my mind. Also, we live on five acres, full of trees, animals and machinery – a block that is made for wild, paddock kids like ours (or perhaps, has made our wild, paddock kids). We are also lucky that my father-in-law has a small farm nearby with river frontage that our kids LOVE.
Beach day with the grandies - we were literally the only people there. This is at a place called Sandon.
2. Space for grandparents.
We have a granny flat which my dad lives in. He moved here to help us after my son was diagnosed. Our household would not function without him. We also have another ‘little house’ on our block which makes having other friends and family coming to stay much easier.
3. Amazing allied health, paediatrician and early intervention team
We have an allied health team whose expertise, support and sense of fun are second to none, just ten minutes away in our closest town. We could drive all the way to Sydney and would not find more educated, skilled, compassionate professionals. We have a speechie who has walked the path with us since day 1 and currently a totally overqualified allied health assistant who goes in to school once a week to support our son. We also have a wonderful paediatrician at our local public hospital. He’s a straight shooter, he responds to SOS emails when we need help and I try to remind myself not to bombard him with questions when I randomly see him in Coles, because I imagine the guy can’t leave the house without seeing the parents of most of his patients. Before our son started school, he attended an NSW Department of Education Early Intervention Program. The two women who taught and supported my son in that class made every accommodation possible and were just all-round beautiful people who welcomed us, no matter what had happened during the session. They saw inclusivity as the norm, not an added extra.
4. A nanny who gets it
Another unexpected gift from our regional home base has been our nanny. In the year leading up to school starting, to say that daycare was ‘challenging’ would be too meek a description. When things become almost entirely untenable at daycare, (right when we’d just had our third baby, of course), my husband and I needed to think outside the box. We decided to hire someone to support our son at home. Just a little PS here: there were some amazing staff at that centre who genuinely loved and cared for our son (you know who you are), but the environment and the ‘head office has said…. ‘ attitude were not compatible with us and we needed to switch things up.
Traditional channels of trying to find a nanny weren’t working. So, after a few weeks, I did as any desperate person does and I turned to the Facebook Buy, Swap, Sell. I laid my family’s situation bare for the whole of the Clarence Valley to read about and hoped for the best.
Low and behold, a nineteen-year-old girl happened to be scrolling through the buy, swap, sell that day, looking to buy a pet goat. She saw my ad and thought “I could help them”. Over eighteen months on and she feels like a part of our family. She has a way with our son that is both rare and perfect. She’s taught him to swim and ride a horse and has carved this very out-there-in-the-community sort of life for our son that I can’t manage on my own with two other kids in tow.
Casual Thursday arvo swim. It was just us and the unrelenting midgies.
5. School – the most fraught topic for me (perhaps it’s the teacher in me)
The ‘we need to pack up and move’ freak out did flare up again for me, just as we were getting our son ready to start Kindergarten (the first year of primary school here in New South Wales). We had our son enrolled at our local public school and he had started his transition days there. It is a beautiful small school - less than 20 kids, lots of trees, space and lovely staff. Those taster mornings were pretty wild for everyone involved though and as the Kindy start date loomed closer, I feared my son would not cope in a mainstream setting. I felt out of options and I was a wreck in the meetings we were having with school - nothing to do with them and all to do with them. I had absolutely no idea how my little fella was even going to be able to stay in a classroom let alone actually learn (or allow anyone else in the room to do so). We didn’t have any non-mainstream options available in the nearby towns for Kindy and I felt scared. I totally know why people are driven to it, but for a whole lot of reasons, I did not want to homeschool.
An hour and half from us (in Coffs Harbour) there is a special school for kids with autism. I thought about trying to get him in there and somehow managing the 240 kilometre round trip commute each day. I booked a visit at the school and called my husband to tell him.
“Cancel the visit,” he said. “We can’t do that.”
“What if we got a rental down there for during the week?”
“No.”
I wasn’t upset, I wasn’t angry. I was relieved to hear him veto the idea. Because I knew he was right. And I knew I had the answer already – our local school was the place for our son, or at least the place we needed to try first. In hindsight I can see I was screaming out to be told it would all be OK. And there is no one who makes me feel more like it will be OK than my husband.
The ‘we need to move’ panic probably stems from thinking there’s some elusive solution just out of reach. If we shifted post codes, crossed state borders, it would be easier, right?
No, not always, not for us, not now.
School is not easy for our son. But it would be exponentially harder in a city school. It’s a more relaxed vibe when there’s lots of space and not as many people. It’s also very reassuring to be able to say to the other parents whose kids catch the same bus, “look, if my son ever does a runner off the bus, please just grab him” and knowing they will. He’s not just going to school with other kids, he’s going to school with neighbours, which has a looser definition but infinitely weightier meaning when you live in the country.
And he’s actually just finished his first full year. And had his backpack on at 5am in the first week of the school holidays. He misses school and it flummoxes me now to think of how I felt a year ago, where I honestly didn’t know if he’d be able to go.
We are lucky enough that the school bus comes right past our front gate, with lovely bus drivers who care a lot about the kids.
At school, he lines up for class. He sits down at story time (sometimes, but more and more). He likes doing his Maths and English work in the morning. He catches the bus. Twelve months ago none of that seemed possible. It’s not all smooth sailing. There’s challenging moments, rough days, but he is able to go to a school, near his home, learn a bunch of stuff with a lovely bunch of other wild paddock kids and I don’t know if I’ve ever felt more grateful for something in my whole life.
There’s also something very grounding about being committed to making it work where you are and not constantly being on the lookout for the next option. Less has in some ways lead to more. Less choices has meant less agonising. Less choices meant I stuck to my gut feeling about the little school down the road.
Where we live, we are only 3 hours from Brisbane and also, our son is physically very healthy. I know it’s a different story for families much further west. And there are even bigger differences for families with kids who need ongoing, lifesaving medical procedures. There are cases where the country cannot cater. That is the reality in a continent as spread out as ours but that doesn’t mean we can’t ask for or expect more.
Raising a kid with additional needs in the country is a complicated topic with many opposing ideas and caveats: it’s fantastic here, but the challenges are real; my family have been well supported, but some others have not; we’ve had access to quality health and education services, but this doesn’t change the fact that those systems are all under immense pressure.
The lesson for me in raising my own kids in the country is that the city is not always the gold standard. The country is not always the poor cousin. The bush is not always second best. For my son, who needs more than most other kids, the place we call home and the people that live here wrap around him, shelter him, water him, nurture him and allow him the freedom to grow and stretch out in ways that are so uniquely him. And that has extended to our entire family.
Family Christmas by the river.