Finding the 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 that hill – and often glimmers of it can be seen, grasped at, held on to during that tricky vinyasa or challenging last 200 meters 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 then, once we realised that the milestones were not being met and that something more sinister was at play, we re-entered the system and were suddenly parenting alongside a Neurology team, a Gastro team, a Geneticist, a Cardiologist, an Ophthalmologist, an Audiologist; with a Paediatrician co-ordinating the whole shooting match. Which meant there was not a whole lot of space to parent intuitively.

Like most of us, I imagine, I was taught to respect my elders, people in authority, doctors. They know better. And it doesn’t get much more complex than neurology. How could I, 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, throw caution to the wind, go rogue, take their kids off their meds.

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. 

This article was also published on The Mighty.