There’s something about carers of neurodivergent kids and children with disability that is often forgotten: They all started their journey from a place of believing that they would be able to care for their children on their own.
No parent starts their journey expecting that they will one day need to ask for help, and invariably when parents do ask for support, it is at a point that is far beyond the threshold where it should have been offered.
Asking for help, for many parents, feels like failure. It can feel like swallowing your pride and saying, I’m not good enough. And that’s hard because when their children started showing signs of difference, they probably assumed it was because of something in their power to change; more tummy time, a more structured sleep routine, the right feeding tools, enough ‘sensory play,’ and of course talking, singing and reading to them day and night.
And over time, when development continues to move slowly, or seems to be stuck despite doing all the ‘right’ things, parents start to wonder whether the different patterns they are observing are actually an expression of their child’s unique brain and body.
Their research shifts a bit. They move away from standard parenting advice, to seeking information about what to do when your baby or child is not the same as most other kids. When they’re delayed. When they seem to be experiencing the world differently.
But these parents also worry about the possibility that they’re imagining it. They worry others won’t see what they see. They worry about how it will feel if they do get that validation too. Their heart and mind is torn between heartbreaking worry and glimmers that seem to contradict what their gut might tell them in hard or quiet moments.
If a parent has the resources and access to support, often that will look like a community nurse visit, a trip to the GP or perhaps an allied health professional like an occupational therapist or speech pathologist. Those supports are necessary stepping stones on the path towards accessing robust care, but on their own they don’t move the needle from survival to sustainability, let alone flourishing.
In Australia, children with developmental delay or kids who are likely to have a permanent disability, have been eligible for Early Intervention funding via the National Disability Insurance Scheme. While eligibility criteria are currently changing and we are seeing the slow roll out of Thriving Kids, for this discussion let’s set that aside and think about the parents whose kids have been accepted into the scheme.
The parents/caregivers of children accepted into the NDIS will need to attend a planning meeting for the purpose of setting goals and establishing support needs. When they are asked about their everyday life and the sort of support their child needs, many are told that the care their child needs is parental responsibility. They’re told the very thing they believed in the beginning – the very belief that had to be unlearned in order to recognise the need for support.
For many, meetings that reduce very real disability support needs to parental responsibility, are just the beginning. It’s easy to understand why some parents react with aggression, and it’s easy to understand why some just shut down.
And this is not a piece about children being denied funding.
It’s about the emotional impact of being confronted with a message that threatens to undo years of learning, acceptance and recalibration of what good parenting looks like.
For parents who have spent years learning that asking for help is not a failure, being told that their child’s support needs are simply their parental responsibility can take them straight back to where they started.
I wonder how differently these meetings might unfold if the people sitting across the table understood what parents had already been through just to get there.
