Speaking up for your child doesn’t have to be complex. It can be as simple as listening and acting on your intuition.
We recently came across this personal story published by our friends at Source Kids about how parents are the experts on their own children, and how one parent built the confidence to advocate for her child, Amy.
Building confidence to advocate for your child.
Personal growth can happen in funny places. You can look for it in yoga class, or while you’re meditating, or running up a hill.
Often glimmers of it can be seen, grasped at, held on to during that tricky vinyasa or challenging last 200 metres but you don’t necessarily expect to find it crumpled down the back of the fold-out chair next to your child’s hospital bed.
Although, perhaps that’s the metaphor, the promise of all those asanas and kilometres – focus and breathe through the tough bits and clarity will be yours. And we’ve been through a tough bit health-wise over the past few months with my daughter.
Like with most testing periods, as we come to the tail end of it, battle-scarred but not broken, it is exciting to see how much has changed in my life perspective. How much I have learned. The paradigms that have shifted.
Entering the world of special needs parenting is just like entering the world of parenting – except completely different.
When you become a parent for the first time, you read some books, work out which one is the hungry cry and which one is the tired cry and hopefully manage to map out how to introduce solids and the best way to get your child to sleep in their own bed before they’re ten. You might see a GP on occasion for some antibiotics.
With Amy, we were released into the world with the same cheery wave by the midwives. But once we realised the milestones were not being met and that something else was at play, we re-entered the system.
Suddenly we were parenting alongside a neurology team, a gastro team, a geneticist, a cardiologist, an ophthalmologist, an audiologist; with a paediatrician coordinating the whole thing. There was not a whole lot of space to parent intuitively.
I was taught to respect my elders, people in authority, doctors as “they know better.” And it doesn’t get much more complex than neurology. How could I, an English lit graduate, know more than the esteemed professionals with years of experience?
And, of course, I don’t know more about neurology than the neurologists or the gastrointestinal system than the gastroenterologists – but I do know more about Amy than any of them.
I am the ‘Amyologist’ on the team and I think for a while there I forgot that. I was overawed by the jargon and medical process and the system. I lost sight of the fact that theirs were just opinions too – and not necessarily the correct ones.
While they were floundering, unsure of what to do next, I had a child who was just getting sicker – and so I had to step up. Now I am certainly not advocating that a whole legion of special needs parents join me and throw caution to the wind.
What I am saying is listen. Listen to your intuition. Listen in the space between you and your child where you communicate without words. Trust it. Because the more you listen, and the more you trust, the clearer the picture becomes and the more confident your voice will be.
I didn’t need to find my voice – I just needed to be quiet and listen for it. A whisper, unsure of being heard, at first.
But the more I listened, the louder and more confident it became. A true player in this game. A participant with an opinion just as merited as any of the others weighing in.
Check out our previous story Kids and the NDIS: Advocating for your child for more information about advocacy.
Leap in! can help.
Leap in! helps thousands of children and families to navigate the complexity of the NDIS. If you’d like more information about making the most of your child’s NDIS Plan, simply call us on 1300 05 78 78, chat online via our website, or email email@example.com.