What lessons has your life journey taught you?

Jess | Kirikiriroa

In Part 2 of her kōrero, Jess reflects on how her whānau journey with takiwātanga (autism) has transformed into a powerful mission – educating others and fiercely advocating for other tamariki like her son.

“We actually started a Facebook page and that was the starting point for us to kind of share that information. And it mainly was actually to educate our own whānau, because like I said, no one had previous interactions with autism. And so, when Te Aurere was banging his head against the fridge and my Aunty was saying, ‘Jess! Te Aurere,’ I’m like, okay well, he’s communicating to you and saying ‘open’ or ‘huakina’. All you have to do is just open the fridge and he’ll grab his snack.

I got really fed up with having that responsibility. So I thought that an easy way to actually share everything we were learning at that time was just to put it on Facebook and share with our whānau. Through that information sharing, I feel like that really empowered us as a collective, as a whānau, to change our mindsets. And if our whānau weren’t on board with that, then well ka kite (see you). We’ll see you when you’re ready to come jump on this waka.

It has been hard. And if you know anything about me, I don’t sugarcoat anything. We’re very raw and honest about the experiences that we have because I understand the power of sharing that. But what comes with that is a very heavy responsibility – not only advocating for ourselves and for our son – but also for all the other whānau that are navigating this journey. And I don’t take that lightly.

If someone is not getting access to the right support at kura (school), I’m at that kura throwing policies and legislation and their own practices back at those kaiako (teachers) to help them understand that this taonga (gift) is deserving of support just like any other tamariki (children) in this kura.

Or if a whānau has been waiting for a diagnosis assessment but has been constantly told by a GP, ‘Wait it out. Just be patient. Boys develop slower than girls’, I’m at that GP meeting advocating for that whānau. Because I know personally how hard it can be, and my biggest thing is that I don’t want whānau to experience that trauma that we had.

And if I can be that loud voice in the room for them, I will absolutely do that – because that’s all I wanted at the time.”