Four out of ten

Yesterday, from the word go Sam seemed to not be in a good mood. He didn’t want to get his breakfast, he didn’t want to walk to the shops, he didn’t want to do anything. I hoped he wasn’t getting sick; maybe he just hadn’t slept well.

When we arrived at the shops I tried to get him to buy some takeaway food for lunch. It was his worst African retail performance.

Standing in front of the counter in a daze, Sam occasionally twitched and muttered. The two female attendants behind the counter waited for what must have been over half a minute. They glanced at each other occasionally as they tried to figure out what this guy was about. Eventually with some prompting from me Sam mumbled an incomprehensible order, and I had to jump in.click tab to read further

I told them the order and took the money from Sam to pay them myself. Sam got angry and snatched the change from me as I collected it from the girls. It quickly escalated.

‘Give me back the money!’

‘Sam, I had to pay, you were taking too long.’

‘NO! I will do it.’

‘It’s too late now, I’ve paid. That was not a very good performance. I give that three out of ten.’

‘NOT THREE! NO!’

He grabbed my head and squeezed and growled. I eventually calmed him down, but not before the security folk noticed us. We scuttled into the supermarket to get some other supplies for the Spaghetti Bolognese I planned for us to cook that night, and he did a bit better at the checkout, where I was able to give him a seven (a fairly generous concession from the judging panel).

Later in the day, Sam and I were meant to be meeting up with the Chairperson of Autism Namibia. Benison had found Petra’s details on the web and established contact with her. Petra had agreed to meet with Sam and me and had kindly offered to pick us up from the hostel, take us over to her association’s resource centre to show us around and then back to her place afterwards.

Petra has two boys and her older son Michael has autism. Michael is 26 years old and non-verbal. I had wondered how Sam would interact with Michael. He had known a lot of autistic children through his primary school and our social circles back home, but not an adult before.

Sam and I sat in the strong Namibian sunlight on the concrete footpath outside the hostel, leaning on the stone fence waiting for Petra to pick us up. Sam started up his objections to the trip again, but with a more aggressive tone than usual.

‘I want to end the trip now. I demand to go back to Sydney.’

‘No Sam, you know the deal. You know what you have to do.’

‘You are being too strict. You are being mean and cruel. I don’t want to go to the M countries.’

By that he meant Malawi and Mozambique, which he knew were very poor. He had had trouble remembering their names. Poor means bad internet. I tried to ignore his comment in order to end the conversation. He grabbed my arm and looked me in the eye.

‘Go home now Dad.’

‘No, we are not going home until the job is done.’

He pointed with a straight arm and a bent wrist.  ‘I will go home. I will go without you.’

‘You can’t Sam. I have your passport and you need to buy a plane ticket and you have no money.’

‘I will steal some money.’

‘Don’t be silly.’

Petra and Michael drove up. I wondered how this was going to go with Sam in a mood.

I sat in the passenger seat and Sam sat next to Michael in the back seat. Michael grunted and rocked as he looked at us with curiosity. Sam looked a bit worried; Michael was a solid unit.

‘Are you a bully?’

Petra reassured Sam. ‘Michael can’t talk Sam, but he won’t hurt you. He is not a bully.’

We drove over to the resource centre, a lovely small stone building in Klein Windhoek. Built in 1910, it had been the original primary school in the hilly enclave. Klein Windhoek was a well-to-do part of the city that reminded me of the Hollywood Hills area overlooking LA; picturesque in an arid sort of way, with date palms and stylish old houses.

The centre is a work in progress, and also somewhere where a lot of work was clearly done. Books, magazines, boxed games and toys filled and overflowed from the shelves and cupboards that dominated the rooms. A central table was where activities and therapies took place. Sam hovered around the shelves, looking for anything on Harry Potter or Pokémon (which unfortunately has made a surprise return to appear on his radar), Michael played with some plastic blocks, and Petra and I had a chat about autism, therapies and funding, and disability in Africa.

Earlier in the week I had seen a quadriplegic man in a motorised wheelchair being escorted around the city by his carer. It had caused me to reflect on how a serious disability could be managed in a country with next-to-no social security net, or even in poorer countries where children could be stunted from chronic malnutrition and preventable infectious diseases ravaged the populace.

Even in the first world, the disabled historically have been treated as a disenfranchised and discomforting section of society, with exhausted carers unable to gather the strength to effectively rally. In many people’s eyes (but by no means all) they were merely a burden, a drain; the type of people you didn’t want to think about, in case it happened to you or your kin.

Petra is impressive; her extensive knowledge and commitment to the cause soon became clear. She outlined the same old depressing themes I was familiar with in autism and disability in Australia; a lack of awareness, understanding and funding, but of course all the more brutally evident here in a developing economy. She and her colleagues just do the best with what they have, which is never enough. Her type, many of whom I know in Australian autism and disability circles, are unsung heroes.

We drove back to Petra’s house nearby, also dominated by books and shelves (I love a house full of books) where I met her architect husband Reiner, her three dogs and an Afrikaans-talking grey African parrot. Sam refused to talk much and kept escaping to explore more book shelves in other rooms, but he was a bit interested in the parrot. Petra and I chatted further on the veranda while Michael sat between us and played with music on his iPad. Every day after listening to a range of music, he would delete all that he listened to, and Petra would need to re-sync it again in the evening. Tedious, but that was the score.

Michael had good taste in music, I must say. A string quartet from South Africa played traditional African music. He seemed to like that I took an interest. He pointed off across to the trees outside the veranda and said what Petra interpreted as bahn (German for train). Was it the lines of the branches of the trees looking like railway tracks? He didn’t mind that the message was having trouble getting through. He was a very accepting individual, happy in his space.

As we went outside to get in the car Michael spun around plastic pool filter covers because he liked the sound they made as they wobbled to a stop. So did I actually. Sam watched him with curiosity while keeping an eye on the dogs that were eager for attention and keen to jump up on him. The visit had been illuminating, and I promised Petra that Benison and I would keep in touch.

That evening Sam had another tantrum when I pushed him a bit to help with dinner preparation. Probably not a good call on my part. Anyway, as part of the tantrum he wrote me a note (after he had disassembled the backpack’s contents all over the dorm to find the note pad).

Take me back to Sydney and not go back to Africa. This must Happen Tomorrrow. If you don’t you will be sentenced to life in gaol.

Give me 10/10 for this.

I smiled in spite of myself.

This morning, Sam seemed to accept his score for the day; four out of ten, his worst yet. Sam and I had a debrief on the reasons for his score. Today is another day.