We were back at our Uganda base, Red Chilli, with its wi-fi, pizza, pool, clean rooms and hot showers. We were back to schoolwork and neuroplasticity. Murchison had helped me emerge from my doldrums after losing Sam’s DS, and I was now feeling more positive and less homesick. My mood seemed to be up and down a lot, but I supposed that came with hard travel, and I’d added a child with autism into the mix. It also seemed like the end of the trip was rushing up at us, like a rhino with threatening body language. I felt panicked about doing as much as I could with Sam before we had to go home.
On the evening we returned, our group from the recent tour gathered poolside for pizza and a drink. Once again, Sam blurted out an insulting remark about a woman’s appearance. I was furious, and after demanding he apologise, dragged him away to read the riot act. He should have known better. He became angry, and physical, squeezing my head and then slowly butting it with his, and he refused my requests to return to the table and behave civilly. I walked away, recognising our pattern of overstretching him and then watching him lose the plot. I knew I was partially responsible given I was pushing him to his limits, but he would get a four out of ten tomorrow. This would take his tally down to two eights in a row, safely distant from the magic seven he needed to return to Australia.
I was relieved to Skype Benison the next morning, after being isolated in the boondocks for a few days. After the Murchison trip I was feeling more positive, but unfortunately she was not. Our absence, financial stresses and life in Sydney in the middle of winter were getting her down. Her mother was also unwell. But most of all I suspected, reading between the lines, that she had concluded that while Sam was making progress it was of the subtle, not profound, kind. The magic bullet outcome, while always a long shot, was not going to happen. In autism improvement is invariably incremental. Intellectually we knew that, but I guess we both still couldn’t help hoping.
And then that afternoon Sam soared. He played the best game of chess of his life. His boxing, which we hadn’t done for over a week because of illness and travel, was outstanding. He told me the combinations he wanted to do and then performed them with power and rhythm. Where did that come from? I couldn’t wait to tell Benison.
While we were back in Kampala, Sam and I visited the Butabika National Referral Mental Hospital, which was within walking distance of Red Chilli. I was interested to see how such a facility operated in the developing world, and, if they saw children with autism, what therapy or support was offered. It would also be another experience, another unpredictable activity, for Sam. He was worried we were going to hospital because of the scratch on his arm from a cat he had been pestering, despite my reassurances. Cold calling at a medical facility is awkward, especially when you look the way we did: grubby and frayed. We walked through the large gates and up to the front office. The receptionist was dubious but referred us down the hallway to the equally dubious secretary for the director. I had pre-prepared a typed letter, explaining our backgrounds, the purpose of our trip and why I wanted to visit the children’s ward of the hospital. I sat at the large polished desk across from the director while he read my letter, and Sam slumped on a nearby leather lounge chair. In the end the director was very accommodating and arranged a tour of the ward, on the proviso we didn’t film the patients, of course.
Sam had his feet up on the coffee table. I scolded him. ‘Sam, put your feet down!’
‘It’s okay, let him be,’ the director said.
Sam smiled at him. ‘You are an African!’ And then, fortunately out of earshot of the doctor, ‘He is an African wearing a tie.’
The director referred us to the child and adolescent psychiatrist for the hospital, a no-nonsense woman who showed us around the children’s ward. As well as the psychiatric conditions you would expect to see in a developed world mental health facility, they also treated medical conditions that had a neurological, psychological or psychiatric overlay.
These included several patients with epilepsy, which was often poorly treated prior to their presentation here, and also cerebral malaria. Trauma victims and substance abusers might also end up here, but fortunately numbers of the former had reduced in recent years as the conflict in the north resolved. The most common substances abused were alcohol, marijuana and mairungi, or chat, a chewable stimulant widely used across eastern Africa. Domestic violence and abuse victims were also seen here. Any child in Uganda, even one living in a remote village, could be assessed and treated here for free if a referral was considered warranted. I was impressed; medical services in Africa are not all doom and gloom.
Autistic children and adults were seen here, and offered services such as psychology and occupational therapy. The place resembled an Australian hospital from a bygone era: nurses in sky-blue pinafores and caps, patients in ballooning pink gowns, the long Nightingale ward lined with metal-framed beds. Outside were elegant gardens with clipped lawns. Old school, to be sure, but clean, organised and well staffed. Walking along the road back to the gate, I peeked inside the window of a parked ambulance. It looked exactly like the inside of an ambulance should, and I thought of Prince and his barren, equipment-less vehicle back in Malawi.
Back at the Red Chilli lounge room, a young English medical student working up-country was relaying a tale of woe. ‘I just nearly got robbed. A big guy standing behind me tapped me on the shoulder and then I noticed his other hand behind my back was lifting my wallet out of the front pocket of my jeans. The only reason I noticed was the corner of the wallet caught on the edge of the pocket.’
‘What did you do?’ I asked.
‘Well, I shouted out and he just dropped the wallet and walked away.’
‘Did anyone help you?’ I asked.
‘No, that’s what I couldn’t believe, everyone just laughed. In my country if someone is getting robbed people will help you out. It was like they thought it was okay to rob a mzungu. Even in the cab back the driver laughed when I told him about it. I mean, I was being robbed and they thought it was funny!’
I was also surprised. In my experience Ugandans were so friendly and relaxed. Maybe, in the eyes of some, the wealth Westerners have is so extreme it’s okay to rob them occasionally.
With heavy hearts we left Red Chilli and Kampala for the last time. I would miss the creature comforts, and the staff, as well as the chaotic charm of the city of seven hills, as Kampala was also known. For Sam, leaving was another blow to his hope that the blue DS would still turn up. I had to reassure him that if they did find it, they had my email so that we could arrange for it to be forwarded to us.
A driver dropped us at the minibus station, giving me the three-step African handshake I was finally getting used to: a shake, a grip and a shake. To me, the prolonged handshake was a reflection of how important greeting each other and treating each other with respect seemed to be in so many African cultures.
We were out again into the Ugandan countryside, wet and green. Let’s go get lost, Sam. Let’s go get lost. Trucks bore pineapples, melons and giant hands of green bananas. There were papyrus-lined wetlands, rainforest-covered mountains. Sam and I were deep in our own thoughts. Corn and cane, sunshine and rain.
Being the tallest person on the bus, I was moved from the back to sit up next to the driver so more children and bags could be squeezed onto more laps in the rear. While the view was better, I wasn’t at all sure I wanted to see it. Our driver operated on the disconcerting rationale that overtaking while an oncoming truck was approaching was not a problem as the truck would always make room. They did, and on we went.
At a roadside stop, the bus was accosted by a gang of hagglers carrying bowls of roasted bananas, cooked chicken on skewers and soft drinks in crates. The produce was thrust through windows and waved under noses. A man seated behind me tapped me on the shoulder, babbling about Fanta.
I waved him away. ‘No, I don’t want any.’
He persisted. ‘Your son has taken a Fanta. You need to pay.’
I spun around and eyeballed my son, who was avoiding my gaze. ‘Sam, you know no fizzy drinks in the morning.’
He pretended not to hear me as he sculled the drink. He would pay in points the next day, but secretly I liked it when Sam planned a deception; it requires a certain level of social sophistication to circumvent the agenda of another person. He was thinking about how I was thinking, and using strategy to deal with it. It was un-autistic.
We cruised into Jinja, the city astride the origin of the Nile. Its streets were full of noise and traffic and bustle under decaying colonial architecture. The minibus crossed a large bridge that spanned the river above a hydro-electric dam. In the Amin era, soldiers used to throw victims off the bridge here, and elsewhere, to be eaten by crocodiles. This allegedly included four thousand disabled people whom Amin didn’t feel deserved to live. Terrible images assaulted my thoughts when I heard this. I told Sam and it disturbed him as well. There was no point shielding him from the truth. If I wanted him to become worldlier I had to expose him to the truth, both good and bad. Sam was relieved to hear Amin was eventually overthrown and died in exile. Thus always to tyrants.
Jinja is billed as the adventure capital of Uganda. Our entertainment options included white-water rafting, kayaking, bungy jumping and horse-riding. The white-water rafting features some of the wildest rapids in the world as the river charges down to Murchison, eighty kilometres of rough and tumble. I thought, what the heck, and booked Sam and me to go horse-riding and then rafting over the next two days. When I mentioned this to Benison, she was okay about the horse-riding, but nearly had a fit about the white-water rafting. She was terrified Sam wouldn’t cope or that he would get injured or worse, but I persisted. I wanted him to do it.
Our accommodation outside Jinja sat on a ridge with dramatic views down to the great river. We’d arrived on boda bodas from the minibus station relatively early in the day, and with several hours of daylight still remaining were able to fit in some schoolwork and neuroplasticity exercises.
In her 2013 book, The Autistic Brain, Temple Grandin explained her discovery that, contrary to what she once believed, not all people on the spectrum think in pictures like she does, that in fact there are actually three types of dominant thinking patterns.
In an article in The Smithsonian she describes it thus:
In addition to visual thinking, there is pattern thinking and word thinking. Each of the three types of thinking is a continuum. People without autism may have some specialization, but people with autism are often on the extreme end of a continuum…A pattern-thinking child typically has great ability in math and difficulty reading.
In recent years it had become apparent to Benison and me that Sam was a pattern thinker. A complicated mathematical theory would be picked up quickly, yet this was combined with a below-average verbal IQ. He is also naturally adept at reading music, and has the rare and disconcerting ability of perfect pitch; if Sam hears a note played on a piano or guitar he instantly knows which it is. While listening to a piece of music, he can correctly label which chords are being played. Even a car horn or a siren can be identified as a note. It’s weird but also, as his brothers would point out, kind of cool.
For a pattern thinker such as Sam, chess seemed a natural fit, and now he was rapidly improving. I allowed myself to occasionally win games, in order for him to develop the altogether more difficult skill of losing gracefully, but as his chess ability improved wins proved more difficult for me to orchestrate. That afternoon, as part of our schoolwork, I set him the task of writing about chess.
This is the description of chess.
They are 16 pawns, 4 knights, 4 bishops, 4 rooks, 2 queens and 2 kings.
Chess was invaded [sic] in the UK. A pawn can move 1 or 2 platforms straight and can take 1 piece sideways. A knight can jump of a shape of a capital L and can take 1 piece if it does that. A bishop can go any sideways but only on the certain colour and can take 1 piece. A rook can go anywhere straight and can take 1 piece. A Queen can use both the rook and the bishop’s moves and can take 1 piece if it is able for the Queen to move on the platform.
A King is the most important and it is nearly impossible to be taken and can use the Queen’s moves except it can only move 1 square but it can take any piece and if other that are able to take the king it is check and if it is worse and it’s checkmate and game over.
Checkmate is a bad thing it is game over and you can lose when you are in checkmate.
Overall I love chess because it is fun.
And that was from a boy who had never played chess before we left Australia.
The next day we had another game. Sam was more determined and had me on the ropes. He refused to enforce the checkmate that was available to him, insisting on taking every single piece before trapping the king instead.
‘You’re annihilating me!’ I complained.
Sam had a big grin. ‘I am the enforcer.’
Playing cards was not going as well. The complexity of Five Hundred was proving too much for him, so I decided to teach him a few simpler games that still involved some strategy, like Twenty-One and poker. As had proved to be the case so many times earlier in the trip, I was constantly having to adapt and adjust my approach to Sam and the challenges I was setting him, based on how well he responded. The intervention was a work in progress.