“When Lockdown came, I think it just didn’t sink in.
The first week was okay. We got up early, went for walks and I would show Harper McDonalds is closed and all these places are closed. We had to go walking early in the morning, so we were walking at 5.45am. That’s because when he sees people he will just go and touch people.
He would say ‘there’s no people’ and I would say ‘it’s Covid-19’.
It was hard at first but the school was trying and then as it went further along, the government came out with the TV channel and all those things and I thought ‘nah, that’s not going to work for my kid’. I mean I liked Suzy Cato, but my kid did not care.
There were only certain things they did on Zoom which would hold his attention. The singing was good, sometimes a bit of drama was okay. You try and Zoom with the rest of them and they were saying hi to each other all the time. He was missing school and my parents.
Come the third week I was struggling, I was struggling, this guy was annoying, and we were just annoying each other.
In the third week, I decided to take him off the clonidine. He was just sleeping and of course, I was thinking ‘I can do all this stuff while he’s asleep, I can just have quiet’, because he’s so loud.
I also reduced his risperidone which was supposed to help him focus but it did the opposite.
The first few days it didn’t make a difference, it took more than a week.
By week four he’s realised what Covid-19 is. He’s seen all the ads on the street, on the bus shelters, and on the TV.
The supermarket was the thing (during Lockdown). I could not leave him at home so I would drive to the dairy and buy ice cream or a pie and then drive to the supermarket.
I realised you could get an appointment if you shopped in the middle of the night for Countdown. So, I would get the last appointment at 8 o’clock at night. And I would leave him in the car and quickly get my shopping done.
The school sent out a survey and asked the parents when would we be comfortable sending our kids back and I said, ‘Level 2’. Not many others said that!
I was going to work on the weekend, and doing work in the week.
I would catch up on the paperwork, there’s only so much paperwork you can do from home.
I’ve got my friends. Everybody is kind of separated.
The closest people are my mum and my dad. They know everyday stuff.
My friends, they know what we go through, but they don’t know, know. They don’t see it; they just know from what I tell them.
You know when you go to a park, you just want someone to play with him. It would be nice for normal kids to just engage with him.
But he comes across as this weird, scary kid that other people want to get away from. I want to take him to the park, but it ends up being not a good experience. I know it seems like something small.
From what he sees on TV and on social media, he sees people engaging, socialising, talking, and laughing, he wants someone to do that with. He understands, he remembers stuff, and he has his own way of communicating. What’s going to happen to him when he’s 21? Is he going to improve?” – 17 September 2020
- This article appeared in Life in a Pandemic, a book about disabled and autistic people in Covid-19 Lockdown, 2020. © Life Unlimited Charitable Trust (now known as Your Way | Kia Roha ).