By Heather Cox
As a mum of a child with a delay or disability you are taught to focus on your child’s progress; you’re advised to not compare them to other children, just focus on their next step.
Therapy is aimed at taking your child from where they are towards their potential, and, in the early years especially, we put all our energies into helping them reach this.
It’s one of the ways us parents cope, focusing on progress one day at a time, one inchstone forward at a time, the step just in front of us.
‘It’s not important where other children are’, they say, ‘focus on your own child’s journey’. ‘All children are different’. We work hard to do this and for the most part, once the initial shock of a diagnosis has passed, many of us are pretty good at celebrating our children’s wins and their experiences, whatever form they come in.
But every now and then we are reminded that the world doesn’t always look at our children in the same way that we do. The world does compare and put children into boxes.
We realise this with every NDIS plan review.
With every form that we need to fill in that says ‘Can your child do X yet’
With each school submission that requires a developmental assessment, to understand where a child is at.
There are so many reminders that the world has yet to catch on to the idea that wherever your child is at they are valued. Wherever your child is at they deserve to be included. Wherever your child is at they will be supported.
Although we may understand the reasons behind some of these tests and assessments – to get the support our child needs for example – it also shakes us each time and can bring us back to how we felt when our child was first diagnosed or when we first learnt about the unique path they would lead us on.
After these reviews, these assessments, these forms, we eventually shake these feelings off; we find our tribe who understand, talk them through and return as quickly as possible to focusing on our child; a child who is loved, who is perfectly made, with some extra challenges, who is entitled to be as valued, supported and included as any other.
I hope that one day the world recognises that too. Maybe one day there won’t be a need for all these assessments and forms – just a meeting with a parent who explains their needs and a system that supports them.
About Heather and Arianna
Heather is mum to two girls, Erica, who has developed typically and Arianna, whose journey will be different. Heather writes a blog and has a FB page called Arianna’s Army which she uses to share her journey, educate and raise awareness and as an outlet for her own feelings.
Arianna has an overgrowth condition called Sotos Syndrome, for her it means she is developmentally delayed and has scoliosis, which she wears a brace for. She is showing her mum every day that she is a fighter.