by James Best
‘No, they didn’t start it,’ I said, firmly but calmly. ‘They just wanted to go near the water.’
‘But I don’t like them doing that,’ Sam protested.
‘They’re allowed, Sam. You’re not allowed to order around other people, especially little children.’
Negotiations continued. Tempers rose, and voices. I eventually went to breakfast without him, to give him time to calm down. As I arrived at the breakfast table, Gabriel brought out a chocolate cake with HAPPY BIRTHDAY JAMES piped across the top in white icing, and a small present wrapped in foil and tied up with a ribbon. It turned out to be a box of camping matches. He must have realised it was my birthday when I filled out the forms for the tour, cobbled the cake and present together in Swakop before we left and kept them hidden somewhere in the truck. I was taken aback at the effort and kindness involved. This moment, the birthday cake in the Namib Desert, would stay with me forever.
I retrieved Sam from the room. He was calm now, but more withdrawn and autistic than usual. Knees up, gaze averted, licking his lips, not engaging. The tantrum had distressed him, and he was retreating. I let him have whatever breakfast he wanted, let him eat with his fingers. I just backed off.
At least I was starting to read my son better—getting to know when to push and when not to. I now knew that his previous meltdowns had been followed by long recovery periods in which he needed some downtime. Throughout the morning he remained withdrawn, even during a visit to a cheetah reserve. Sam liked seeing the cheetahs, especially on foot from only ten metres away, but he was still in his shell and bothered by the glare and flies.
By lunch his mood was improving. Copious amounts of Vaseline had kept his resurgent facial rash—as much a consequence of the harsh corrosive environment as his lip-licking—mostly in check. He asked whether he could still get a score of eight today, despite the tantrum. I avoided answering.
The truck swung north, up through the Naukluft Mountains, German for ‘small gorge’. Red rock faces hung over us, ominous and foreboding. The mountains had sheltered tribal guerrilla leaders who were subsequently crushed by von Trotha and his Schutztruppe, rebel chiefs and warriors who were now commemorated on banknotes.
Our vehicle tumbled up onto the central Namibian plains. Arid certainly, but verdant in comparison to the parched earth and air of the ancient desert at our backs. There was a bonding in the vehicle, and we were all pleased with the few days we had had together. The others had seen Sam presenting the challenges he does and had seen that he was hard work in an extreme environment, but Sam had also been the entertainer, reframing the world in his own unique way, which had led to wry grins and chuckles. It seemed everyone who met Sam would not forget him.
CHAPTER 11
Namboobia
The tour over, we returned to Windhoek for the third time. I felt like I was starting to know the place. The staff at Chameleon greeted us, particularly Sam, with big smiles. He hurriedly bumped his way through the pool and bar areas determined to check-in as quickly as possible in order to use the wi-fi.
Our trip to the delta and Victoria Falls had been confirmed for eleven days time. For the first occasion in the trip I felt the pressure lift. I was able to focus fully on the task at hand: school and neuroplasticity exercises; neuroplasticity exercises and school. Algebra and geometry; a PowerPoint on the Namib Desert; cells, cell walls, and the role of nuclei; attempts at writing narratives. On Sam’s third narrative writing attempt he came up with the following:
The Adventures of Captain Pumpkin.
He is a Famous Captain who watches out for pirates. He has a big American boat called Steamwall boat.
It was built in January 1st 1900 at 12.00 am in New York in a town called hoyatas.
Captain Pumpkin was born in January 1st 1930 at 12.00 am in England in a city called London in UK in Europe. He moved to America in January 1st 1940 at 12.00 am in New York in a town called hoyatas which make him turn 10 years of age. He used this boat to travel since January 1st 1960 at 12.00 am when he just turned 30 years of age. In September 1984 he was 54 years old he enjoyed the big American boat called Steamwall boat. He started watching out for pirates in 1990. He was retired in 2011.
Story 7.5/10
Grammar 8/10
The marks were mine, the rest was his. Not too bad, I thought, though a bit keen on the dates and times. I suppose Captain Pumpkin could have been catching pirates in the 1990s off the Horn of Africa.
We continued with our boxing, cards, chess, catching a ball, and started drawing and checkers. I had wanted to include music, as Sam already had basic keyboard skills from a year of piano lessons, but there wasn’t a keyboard we could easily access.
The boxing and chess remained interesting. Sam was getting the idea of chess, certainly, but I’d expected him to be more of a natural given his impressive memory. He wasn’t as cautious or strategic as I thought he’d be. He did make the interesting observation that the queen was evil. He’d always had a problem with female monarchs since he encountered the White Witch queen in The Chronicles of Narnia.
Maybe the motivation just wasn’t quite there yet. I had let him win every game so far. Perhaps I needed to turn the screws a bit, but I also didn’t want to push too hard and make it a negative experience. I needed the jelly to wobble, not fall off the plate.
Sam found boxing the most challenging exercise, as it involved force and with it the risk that he might jar a wrist or finger joints if he didn’t get his technique correct. Over the days I introduced new challenges, such as uppercuts.
Sam didn’t like them. ‘Uppercuts are for losers.’
‘Oh, I don’t know,’ I replied, ‘good boxers should have all types of hits.’
Sam clenched his fist inside the glove. ‘I want to do a power spin instead,’ he said, and spun around 360 degrees. I think he was referring to a Mario Kart manoeuvre.
‘I don’t know how to do one of those, but I wish I did,’ I said, truthfully.
We pushed on: uppercut, jab, right cross, left kick, right kick. No more power spins, but he was getting better.
A couple of days into our enforced hiatus, I decided to tackle another adaptive skill: planning, buying for and preparing an evening meal. This was a good example of an activity I intuitively knew we should have been focusing on with Sam back home in Sydney, but it just never seemed to happen. Benison and I just ended up doing it ourselves because it was easier.
Sam and I wrote a shopping list together and walked down to the local supermarket. Sam collected the items and paid at the checkout, while I watched. It took about three times longer than it would have if I had been shopping, but he got there. That evening at the hostel I cooked the sausages while Sam prepared the noodles in the saucepan and tore up some lettuce leaves. His fear of being burnt meant I had to drain the noodles, but that was okay. There was a hint of pride in Sam’s smile as the plates hit the table.
Our prolonged stay in Windhoek meant that we also came to know a range of different people from different parts of the world. As well as backpackers and aid workers, we met academics, professionals taking a break, and some interesting free spirits. There was a softly spoken Scot with long dreadlocks and a beard doing his master’s in environmental studies in northern Namibia. A couple from Wisconsin—a biologist and a geologist—were deciding in which direction they wanted to head, torn between developed-world academia and the wilds of Namibia’s natural environment. Two young pilots, Swiss and English, were trying to build up their flying hours over southern Africa’s long stretches. A charming older Spanish man, who was travelling the country with his new Namibian bride, enjoyed a glass of red wine and cigarette at sunset each day after working on a LandCruiser parked in the driveway. A Caribbean-born Frenchwoman with a crew cut had been travelling hard solo through Africa for two years. She had a Range Rover so well equipped for her nomadic lifestyle it included a solar panel, a soldering iron, a sewing machine and an angle grinder. She could replace a drive shaft or make p
anel-beating repairs on her car in middle of the desert.
Sometimes Sam would interact with them, sometimes he wouldn’t. They were often curious about Sam, and our day-to-day activities: our lessons on the computer, boxing in the driveway, playing chess and cards in the lounge.
But I would find out that Sam did occasionally approach some of the girls in the hostel when I wasn’t around. A pretty young German woman with straight dark hair told me, ‘He came up to me, stroked my hair, and said “Ginny Weasley,” and then walked off. What’s that about?’ And a youthful-looking Canadian woman had a similar experience. ‘Sam came up to me in the lounge room and asked, “How old are you?” I said, “Twenty-six” and he just said, “Oh,” and walked off.’ I can only assume Sam thought she was too old to attract his interest.
One afternoon we were doing Sam’s maths lesson in our room at the hostel. The first exercise was a mini-test, which I got Sam to attempt by himself while I tidied up the room.
‘Sam, how many questions are there in the test?’ I asked.
‘It goes up to “u”,’ he replied.
‘How many is that?’ I asked, expecting him to have to work it out.
Without hesitation, he answered, ‘Twenty-one’.
I worked it out on my fingers. I don’t know why I bothered; I knew he was going to be correct. By the end of the exercise he had also answered questions ‘v’, ‘w’, ‘x’, ‘y’ and ‘z’.
‘I thought it only went up to “u”,’ I said.
‘I made up five more questions so it went up to “z”,’ Sam said.
I smiled to myself. Of course he did.
Writing postcards was proving to be a good way to develop Sam’s handwriting and narrative skills. Sam knew he had to write neatly enough for it to be legible, and that the other person’s needs, for example, wanting to know how the trip was going and whether he was enjoying himself, should be considered. From Windhoek he wrote cards to his maternal grandparents and to his aunty and uncle. The former was a pretty good effort. The latter, well, I don’t know what to say.
Dear Gran and Grandad
We’ve been to Etosha National park. We saw lots of elephants, zebras and lots of other animals. It was a bit boring because we had to stay in a tent.
We also went to the sand dunes in the namib desert. It was a bit okay. I climbed a sand dune.
Cheers Sam XX
Dear Roslyn and John and family
Is your surname a biskit?
Do you have a rabbit?
We drove down this road.
Roslyn your name sounds like a royal family. There is a picture of a lion roaring.
Cheers Sam
To be fair, there was a picture on the front of the postcard of the road that he was referring to, and there was a lion roaring in a small emblem imprinted at the bottom of the card. But for the life of me, I had no idea what their surname, Driscoll, had to do with a biscuit!
One day in Windhoek, we walked down to the hostel driveway to throw and catch the rubber ball. Halfway through the exercise I had an idea. ‘Hey, Sam, see if you can just hit it back to me with your hand and not catch it.’ I demonstrated. He did it straightaway, and before I knew it we were having handball rallies with five or ten shots in a row. He was really good! I was amazed. This was a fundamental lunchtime activity at any boy’s secondary school but I had never expected he would be able to do it, let alone pick it up so quickly. It was such a normal thing for a fourteen-year-old boy to do. It’s amazing what will grow in the rich, tilled soil of opportunity.
At 3 a.m. that night, I awoke with nausea, cramps and a rumbling stomach. I rushed to the bathroom, the first of about twenty visits. The vomiting and diarrhoea eased off mid morning, but I was left a mess. I knew I needed some oral rehydration solution and anti-nausea medication. Leaving Sam at the hostel, I struggled slowly down the hill to the shopping centre. My muscles ached and I was shivering but I was wary of looking too vulnerable in an African city. Even so, I needed to stop and rest in the gutter a few times. I was sweating profusely by the time I reached the shops, and stumbled past the beggars and street vendors hovering near the entrance, hustling for baksheesh or to sell cheap sunglasses and jewellery.
The pharmacy was open, and I got what I needed. Back to the hostel, this time uphill. I was relieved to make it through the locked gate and back to the room. There was certainly not going to be any boxing or handball for Sam today. I ended up sleeping for most of the day.
The next morning I had mostly recovered, but the day would prove much worse than a stomach bug. From the get-go Sam was in a bad 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, really. I hoped he hadn’t caught my virus. 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 Sam’s worst African retail performance. He stood in front of the shop counter in a daze, twitching and grunting. 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. I told them the order and took the money from Sam to pay them myself. Angered, Sam attempted to snatch the change from me. ‘Give me back the money!’ he demanded.
I held the change aloft. ‘Sam, I had to pay, you were taking too long.’ It quickly escalated.
He grasped again at the money. ‘No! I will do it.’
‘It’s too late. I’ve paid.’ I was cross now too. Through gritted teeth I told him it had been only a three-out-of-ten performance.
‘Not three! No!’ he screamed at me. He grabbed my head and squeezed and growled. I eventually calmed him down, but not before attracting the attention of security.
We scuttled into the supermarket to get some supplies for the spaghetti bolognaise I planned to cook for us that night. He did better at the checkout, and scored 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 and Petra had kindly offered to show us around her association’s resource centre and take us to visit her home afterwards.
Petra had two sons and her eldest, Michael, had autism. Michael was twenty-six years old and non-verbal. I wondered how Sam would interact with him. He knew lots of autistic children through his primary school and our family’s social circles, but he had never met an autistic adult before.
As Sam and I sat in the penetrating Namibian sunlight outside the hostel, waiting for Petra to pick us up, he began his usual objections to the trip but in an unusually aggressive tone. ‘I want to end the trip now,’ he snapped. ‘I demand to go back to Sydney.’
I was resolute. ‘No, Sam. You know the deal. You know what you have to do.’
‘You’re being too strict,’ he complained. ‘You’re being mean and cruel. I don’t want to go to the M countries.’ By that he meant Malawi and Mozambique—he had trouble remembering their names but he knew they were very poor. I tried to ignore him but he grabbed my arm and looked me in the eye. ‘Go home now, Dad.’
‘No, we’re not going home until the job is done,’ I said through a clenched jaw.
He pointed at me in his unique style, with a straight arm and wrist bent down. ‘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, given Sam’s mood. I sat in the passenger seat and Sam sat next to Michael in the back seat. Michael had a solid build and grunted and rocked as he looked at us with curiosity. He didn’t appear threatening in any way to me but Sam looked worried. ‘Are yo
u a bully?’ he asked, with his head tilted.
Petra reassured Sam. ‘Michael can’t talk, Sam, but he won’t hurt you. He’s not a bully.’
The resource centre was housed in a lovely hundred-year-old small stone building in Klein Windhoek. It had originally been the primary school. Klein Windhoek was a well-to-do part of the city that reminded me of the Hollywood Hills: hilly and picturesque in an arid sort of way, with date palms and stylish old houses.
The centre was still a work in progress, but also a place of great energy and activity. Books, magazines, boxed games and toys overflowed from shelves. Sam looking for anything Harry Potter or Pokémon themed, Michael played with some plastic blocks, and Petra and I chatted about autism, therapies, 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 would be handled in a country with next to no social security, where children would be stunted from chronic malnutrition and preventable infectious diseases ravaged the populace. Even in the developed world, the disabled have historically been disenfranchised, their exhausted carers frequently lacking the strength to rally for resources and rights. In many people’s eyes they were regarded as a burden, a drain; people you didn’t want to think about, in case it happened to you or your kin.
Petra was impressive; her extensive knowledge and commitment to autism and disability soon became clear. She outlined the same old depressing themes I was familiar with in Australia: a lack of awareness, understanding and funding. But, of course, it was all the more brutally evident here in a developing economy. She and her colleagues did the best they could with what they had, which was never enough. Her type, many of whom I know in Australian autism and disability circles, are our unsung heroes.