The following are the real, experiences (identities withheld) of whānau in Tairāwhiti, caring for a takiwātanga (autistic) tamariki. They have been shared with Taonga Takiwātanga founder Dorothy Taare-Smith. Their quotes are in bold, followed by my wonderings on how we can do better for these families, right now and in the future.
“We’ve been waiting for help, we’ve got no power, no water, no wifi. They’ve forgotten about us”
Us parents rely hard on power and technology, not just to keep our kids calm, but also to connect us to our support networks when it is not possible to go out and meet kanohi ki te kanohi (face to face). Social media is also our connector to support services, because who has time to sit on hold on 0800 numbers when you are time poor and your phone has just switched to energy saver mode.
What do you do when all of a sudden that connection is cut off? Like literally, cut off! How do you explain to takiwātanga tamariki that it simply is not available, and have no idea how long until it comes back on? I wonder when (if ever) will there be an opportunity to mend severed connections between whānau and the disability providers who have left them out in the rain long after Gabrielle left town.
“I can’t keep my child occupied anymore”
We only have so much energy to give, what happens when that is no longer enough? The car is damaged, so driving isn’t an option, and the playground is buried under layers of silt. The single petrol station open has long lines, and our tamariki don’t like sitting in stationary cars, so that’s not an option either. The shops are closed, the iPad has run out of charge and school hasn’t started back yet.
Routines are out the window, and nobody knows or feels this more acutely than our takiwātanga tamariki. It creates a snowball effect of stress and anxiety, impacting the whole household.
And yet, when it comes to the emergency response, tangata whaitakiwātanga sensory needs seem to be classed as non-essential.
“My child loves their toys and Pokemon cards and now they’re all gone”
In challenging times, we want to take the mamae and feeling of loss away from our tamariki. We treasure the things they hold close, as taonga. When they get taken away, we cry with them. We want them to have treasures that they hold in the palm of their hands for comfort. How do we comfort them through their loss, and how do we answer impossible questions like “when will everything go back to normal?”
“My child has got no more undies because he keeps having accidents and I can’t do the washing”
I read this statement and tears sting my eyes. This māmā has my whole heart and I wish I could reach out to give her a hug. No matter how hard you try, in strange times like this, you can’t do all the things you want to do as a parent. There’s no water, there’s no washing powder. That’s no reflection on you, māmā. Know that you are doing a great job, and it will get better one day soon.
“A bit of a rough week, my spouses routines are all out the window”
An important point in this korero, is that sometimes takiwātanga tamariki have a takiwātanga sibling, or parent too. We all rely on routines to keep our tamariki feeling safe and secure, and their emotions regulated. Some of us understand our tamariki struggle more intensely than others because we share the same view of te ao takiwātanga. As Dorothy says, “we need a different kind of help,” that wraps around the whole whānau, not just one child.
“One of my parents had a mental health episode, they were swearing and yelling, my kids were scared”
Lots of our whānau have been displaced as a result of the cyclone, staying with extended whānau, friends and sometimes strangers. What do you do if your sanctuary doesn’t feel safe but you have nowhere else to go?
And where do you go for help if you or a loved one has a mental health emergency? If you have no car, no phone, no access to a hospital, what do you do? Who is caring for the carers who are coping with their own post-cyclone trauma on top of supporting their child’s disability?
“We got a kai parcel but my child doesn’t eat the kai in the box. I’m not ungrateful but if it’s not his kai, he won’t eat anything”
Sometimes we feel whakamā to ask for more, or something different. We fear the judgement by those who don’t see the world through takiwātanga eyes. Some will judge our parenting, saying that our child is being naughty, not autistic; that they will eat if they are hungry. Other people don’t understand that some textures or tastes of foods are so disgusting to our tamariki, that it will make them sick, and by forcing them to eat, we are hurting them and depleting their mana in the process. If civil defence/support providers valued and accommodated tangata whaikaha, every response would include the needs of our community, every evacuation centre would be a welcoming space for everyone, every aid effort would accommodate individuals needs.
“The school is closed and I’ve got to go back to mahi”
Life goes on, so they say - and yet the ripples of disruption lap at their feet long after the floodwaters subside. Bills have to be paid, items replaced. Sometimes there is no insurance to cover the shortfall. But the school has no running water, or silt is all through the playground, or the classrooms are damaged. And when the school bell eventually rings, and our most important daily routines return, we are still changed. Our tamariki see the world through different eyes. Everything has changed, nothing is the same any more. How do we balance a trauma informed response with the need to return to normality asap?
Resilience is a very pakeha-focussed response to facing adversity. Look at the Christchurch earthquakes and mosque attack. Time after time, we hear people who have lost everything there saying that they have no choice but to be resilient, and to choose to rebuild their lives. I hate it when schools have resilience built into their vision. I think resilience is only part of a solution. So is reflection, and connection. Maybe this is an opportunity to look at how our decision makers address problems face. And maybe we need to have another look at who is around the table making these decisions, and see whose voices need to be added to the conversation (hint, it’s you).
“You really see peoples true colours in times like this, even your own whānau – I see a shitload of greed”
Āe, in times of crisis, people choose whether they take flight, or stay and fight. Neither reaction is superior, it’s just a reflection of who we are, and how desperate we are at the time to feel safe. If someone is taking from you, maybe they are acting out of fear. That’s not an excuse. It still feels like shit, when someone you trust takes something from you.
Times like this bring the best and the worst out in people. Sometimes we see sides to people that we like, or don’t like.
This cyclone has wiped out roads and bridges and caused absolute chaos. I hope one day these bridges can be rebuilt, and that relationships can also be mended.
“Some asshole stole our parcel”
“One of the bro’s drove through a closed road to bring us some diesel and water”
For every greedy asshole, there are also good people and helpers everywhere. As hard at it is, please keep hold of that thought. Avoid the urge to become another greedy asshole 😂
“When we got our parcel, my boy said ‘someone does care mum.’ He cried, then our whole household cried”
Our beautiful takiwātanga babies, who people so often assume are indifferent to human emotion. We know better. We know that they are little sponges that soak up all the feelings around them, more intensely than you or I. They know what’s what.
To feel visible, and valued is the human quality that we should all strive for, in times of need, in times of prosperity.
That’s why it is important to share these voices, because the news bulletins we watch from the comfort of our own homes share only a narrow window of experience with viewers, and only very rarely reflect the experience of tangata whaikaha and takiwātanga.
Whanau feel ‘judged’ at best, ‘abandoned’ at worst. Where is their help? Who is protecting their mana? Where is there respite?
This and many more 'big picture questions’ will need to be answered in following days. It is not acceptable to leave tangata whaitakiwātanga and their whanau out in the cold, not a second longer.
You’re doing SUCH important mahi raising and boosting these voices Rebekah. I’m so grateful. We all need to know that this is happening.
❤️