Author Professor Bukusi

Chronicles of Professor’s Professor Elizabeth Anne Bukusi: MBChB, M.Med (ObGyn), MPH, PhD, PGD (Research Ethics), MBE is a Fellow of the African Academy of Sciences(FAAS) and fellow of East Central and Southern College of Obstetricians and Gynaecologists(ECSACOG) experience in 2024 while climbing Mt. Kenya to raise awareness for Autism.

Day 1 – And off we go! (How it all started)

The best-laid plans of mice and men go awry. Despite all the plans being set for leaving Nairobi at 2 pm, delays were the order of the day. Two team members were delayed by paperwork that couldn’t wait, and this led to one of them having to drive down later that evening while the other worked into the night to complete the task on hand. The unplanned events felt very similar to what it’s like to care for a special needs child. No matter how well you plan, the unexpected happens. It’s just life. No one plans to have a child with special needs – it just happens. Their needs and lives unfold in the same way. Sometimes, it is as planned, but it is usually unexpected. You do not know how things will work out. You hope, pray, and plan, but you had better be ready to roll with the punches as they come as they will come.

Three of those who were set to climb, me included, made it to Naro Moru by evening. Then, the other team member arrived later at night, after a few wrong turns courtesy of Google Maps, reminding us how it does not do as well in rural settings. After several inaccurate directions, have you ever heard the Google voice say, “You have arrived at your destination,” and you look around and know this cannot be the place?” They finally arrived safely. We had a delicious dinner and a good cup of tea, and we were reminded that it was better to enjoy it now before the challenges of altitude and appetite took over on the mountain. We then retired to enjoy a good night’s sleep in the comfortable beds.

Day 2- The Mountain beckons!

The next day, it dawned warm and bright, and it began with a sumptuous breakfast followed by a kit inspection for the team to ensure that each individual on the trip was not carrying any cotton items as they tend to become deadweight because they don’t dry when wet and in high altitude. The inspection also ensured that everyone had enough warm layers for the journey ahead. Here is how I checked my bag; water bottle? Check gloves? Check, beanies? Check. One more check, did everyone carry enough wipes? Toothpaste? Allow me to draw parallels to raising children with special needs. What checklist does one need for a special needs child, and is it different from what a regular child needs?

We need:

• Resilience
• Patience
• Kindness
• Goodness
• Self-control

Back to my story, it was time to take the last shower. Yes, the last shower, as there would be no showering while on the mountain. The next shower would be when you were down the mountain and in your house. One needed to be prepared mentally for that. Have you ever thought you could stay 5 days without bathing? Well, this is a sure test for many.

Once we were done with grooming, the guides accompanying us on the trip came to meet us to check our gear and finalize the details for food and other essentials that we would require for the next five days on the mountain. After ensuring they had double-checked all the gear and packed all the essentials, they organized the transport to the gate for ourselves and their team. A short briefing was done before we left, where the head guide introduced his team to us, and we, in turn, introduced ourselves to the team. He checked again to see that we had the necessary items in our day pack, which consisted of a backpack we would carry as our luggage would go ahead. We also discussed the reason for our climb: to raise awareness of Autism, especially as April is Autism awareness month. Once we were done with debriefing, we drove up to the Naro Moru gate, where we were served by efficient wardens who were both polite and professional. The lead guide handled the payment for our park fees using his E e-citizen account. Entry to our national parks depends on payment of park fees, which differ based on whether one is a citizen. All citizens have to provide proof of citizenship. Porters also have some documentation which they have to provide to gain entry.

The wardens inspected our luggage before giving us entry into the park, as they wanted to avoid single-use plastics and to avoid litter. The only thing that can be left inside the park is biodegradable material, and the altitude means it also degrades slowly. To ensure the flora and fauna are preserved, the porters must show evidence that they have taken out what they carried.

The lead guide had already booked our accommodation in the bandas, which are charged per person per night. Booking in advance is recommended as the bandas can get full. Camping is an option with a lower fee, but you had better have a good-quality tent and adequate warm clothing to stay warm and dry.

The climb began! So did the rain. It’s literally uphill every step of the way. We wished for some ‘flattish land’ for a few moments of reprieve to our muscles that had started to knot a break. Clearly, the rain had no intention of letting up, and flat land was nothing but a sweet mirage. If only for a few moments?

“Does everyone have a raincoat?”

Oh no—one team member had left their raincoat in with the evening bags that went ahead with the porters and the food, and now there was nothing for it but for them to get soaked to the skin. Fortunately, one of the team members had a spare light rain poncho given to the affected member. At least now, the team members will not get soaked to the skin.

Having experienced a different type of road in my previous climbs, I noted that the road has now been paved with concrete and tarmac – all the way to Met station, the base station from this gate where the climb officially starts. The rain lets up for a few moments, only to begin again with hailstones. We walk for almost 3 and a half hours in heavy rain for nearly 2 or more of those hours. We did not stop for a break, as who stops for a break in the rain ??! Everyone was thinking of getting to our destination and having a hot cup of tea.

Drawing a parallel special needs parents, does a special needs child’s parent get a break? Do you stop parenting? Even in your sleep? The concern for the child remains. You have a lot of worst-case scenarios going through your mind. What if they have a fit at night? Or choke? Do they have a need they were not able to express? Or they are fitful sleepers, wide awake in the middle of the night—their sleep-wake cycle is completely off and not in sync with daylight!

Eventually, we got to the Met Station, and thankfully, the rain had also ceased.

A welcome sight was that cup of black hot tea, a treat, with or without sugar; the choice was yours. Even better, the final member of the team arrived just in the nick of time. They drove from Nairobi to the Met Station and missed the long walk in the rain. The park has strict rules and closes precisely at 6 pm, and the vehicle needs to leave immediately, or it will not be allowed out. This was a stark reminder that we were now on the animal’s turf- they have the right of way all the time – but they rule after 6 pm.

We all made it and took a moment to be thankful for the gift of friendship and family. Soon, it was time for dinner and an early night, as we had a long day ahead. The joy of the vertical bog would begin tomorrow.

Sleep was fitful for most of us packed into the long rectangular room filled with bunk beds. The chorus of snores, not to mention the altitude, made deep sleep impossible. The goal was to rest the muscles. One would awaken from slumber and think several hours had passed, only to discover that it was 10.30 pm, and you went to bed at 9 pm.

Day 3: Bog a who?

It’s cold, and the serious climb has not even begun. The debate in my mind runs constantly. I need to go, but it’s cold. Maybe I can hold it a bit before I have to go! But a full bladder makes it hard to sleep and stay warm.

Everyone is silent in the cabin, and I am afraid that I will wake up the rest. When I finally give in and look for my headlamp, I realize others are also awake, and several of us walk out one after the other. We settle back into a non-melodic tune of sleep talkers filled with loud snores and deep sighs. After multiple trips to the washrooms, it’s finally morning.

The day starts with breakfast, followed by a check on gear. Today, no one needs a reminder about rain gear after yesterday—no one is taking any chances. Experience is a great teacher. Each team member is given a packed lunch and reminded to confirm their full water bottle.

Are boots well laced? Check. Gaiters? Wait, so before you confuse gaiters with what used to be worn in the 50s to hold up a lady’s stockings, let me enlighten you on what they are. I would never have valued a pair or even known what they were until I started climbing mountains. Gaiters are protective as they stop you from getting small stones into your boots. They also keep the mud and rain out of your trousers.

Who are the ‘gaiters ‘in this special needs careers space? Who encourages the parents when those around them judge them, thinking they are ‘bad ‘parents and have an undisciplined child? Who keeps the mud and stones slung at them out of their hearts? Defending the rights of the children they care for? Giving them a break when they need it? Or cares that the special needs child may require diapers longer than the average child? They may take longer to potty train, so encourage the caregiver to keep trying. Understand they may not easily feed themselves and be at risk for choking?

Back to the climb, the scenery is beautiful, filled with alpine forest and moorland. Then comes the vertical bog, which seems endless, begins. Every time one thinks that you have reached a beacon and the bog is over, the joke is on you!

There is another beacon up ahead. The beautiful terrain is primarily uphill, and after a while, you are almost zoned out and simply place one foot in front of the other as there is yet another hill to climb. Eventually, we get to the rocky ledges, where walking here is more manageable. The rain has started again, but it is only a light drizzle. It’s not as bad as yesterday’s heavy downpour and cold rain. But your raincoat better be closed. The rain squalls come down suddenly, barely giving one the time to search for another coat if it’s deep in your day backpack. Soon, some of us are drenched in a heartbeat.

Soon, it’s lunchtime, and the guides tell us that some rock outcroppings are our lunch point, but no one is feeling hungry. The guides asked us if we had drunk enough water as it was evident that the team was starting to feel the altitude. This shows in appetites that are non-existent. But we must eat as we need the energy to keep going as we burn calories. We open our packed lunches to find some arrowroots, sweet potatoes, a piece of roast chicken, an apple, and juice. Plus, the constant water. Before we settle in and our muscles get too cold, it’s time to get up and keep going, or else it will be hard.

It’s one step after another as the stories flow for a while. Then, the stories end, and we get lost in our thoughts. The beauty is breath-taking.

Can anyone see this and not believe in a higher power? Could all this have come from nothingness? Was it just a big, ‘sudden ‘unexpected happening? Indeed, there is a God in heaven who is more knowledgeable than we mere mortals who discover and explore these wonders.

It’s hard to tell what time of the day it is. We have walked through clouds and strive to go above them. The path winds up and down and up and down again. Soon, the beauty around us blends into the landscape as our bodies protest the never-ending trek. We cross the Teleki River and stop to refill our water bottles. I have drunk at least 5 litres by now, but interestingly enough, I must be sweating quite a lot as I have not needed a bathroom break. The infamous sign 200m to Makinders breaks the monotony of the landscape, giving us the encouragement, we need to keep going. Whoever placed that sign there wanted it to encourage the weary climber. But instead, it has the opposite effect. The sign has been corrected. Someone not appreciative of the 200 m added an extra 0 at one point, turning it into 2000m. Because that’s what those last 200m usually feel like.

Giving it a final push, the Makinders cabin comes into sight. Several of our team members are already there and have even finished their tea and popcorn. Dusk has settled, and no matter how sore we feel, the day’s goal has been achieved. The guides provide a fresh hot tea and popcorn to revive our spirits. We cheerfully recount the day’s adventure and claim a bunk.

We change into warm layers as we all need to ensure that we don’t have any wet clothing on. No need to tell any of us twice; we are all quickly scrambling out of our wet clothes into warm, dry ones. It’s incredible the things we take for granted, such as dry clothes until you are wet and the last thing you want is to sleep in a damp sleeping bag, though the guides do tell us that your body heat dries it eventually, but this is an experiment that thankfully none of us get to test out.

We have supper, and the food is tasty, but you eat only because you have to. Hunger pangs? What is that? Then it’s time to sleep. Even though it is only 8 p.m., the day’s activities and altitude have worn us out. We snuggle into our sleeping bags and try to find a comfortable position. The night is cold as we are higher up the mountain, and we feel it. One of the team members had carried a hot water bottle, and some of us sent envious looks her way. It starts raining again, and it rains all night.

It’s nice to hear the rain pelting the iron sheets when you are warm in your sleeping bag. Until your bladder is full, you have to go out in the rain, and you realize the toilet has no roof. The distance to the toilets, which seemed reasonable in the daylight, now stretches out due to the pouring rain and buffeting winds, giving one pause for thought if they really need to go all the way or if a rock is a suitable substitute. It rains the entire time you are out there, forcing you to wear your raincoat or else you will be wet, and then your sleeping bag will also be wet!

The night symphony has more contributions to make, filled with more sleep talkers and whisperers. But it’s hard to make out what secrets they are sharing. The altitude is definitely being felt, and it shows up in the form of more headaches, nausea, tiredness, and insomnia.

The night is very long. Every time I look at my watch, only 15 minutes have passed. Just when I actually start to fall asleep, my alarm goes off. It’s 5 a.m. We were told to be up by 6 a.m. so we could have an early breakfast at 6.30 a.m., allowing us to start climbing by 7 a.m. Today is D-day, i.e., summit day.

Day 4: D- Day (Summit Manenos )

The rain has finally stopped, though it rained all night, leaving frost on the ground. The mountain glistens white and beautiful, and we take a moment to enjoy the sunrise and take lots of photos. This means we will climb in the snow. The altitude is affecting most of our team members. Nausea, headaches, loss of appetite, tiredness. For me, the greatest challenge is sleep. It’s difficult when you are tired yet cannot sleep. The guides say just rest. Rest? How? My mind wanders to many places. What is life like for a person who has Autism? How do they experience sound? What would it be like to feel pain whenever a loud sound is heard? Or to feel pain if you look someone directly in the eye? My grandson likes to feel certain textures. He slowly places his hand carefully along particular objects. Carefully touching them as if to memorize every part of them. Over and over again if he likes the feel of them. He will touch it once and push it away when he does not. He has a fantastic memory for where things are kept. He remembers exactly where it was or which toys, he played with last. If you exchange even one of them, he will know and create a fuss if he is not ready to move on. Why is it so hard for most of us to accept diversity? Why do we want everyone to be the same as us? Why do we think we are the standard of normal?

The summit ascent begins, and the rains return, though they are light. Enough for one to use a raincoat but not enough to make anyone fuss or get particularly wet. We set up hopeful even though each step feels like work. It’s too early in the day to be struggling. There is a long climb ahead, and we walk in a single file along the path with me as the pacesetter. Probably because I am the slowest climber. It means the fit young team members are more likely to reduce their chances of more severe altitude sickness if they climb at a slower pace. This gives them more time to acclimatize, and little effort is needed to feel breathless. That comes easily, and the guides keep reminding us to drink water. We carry some snacks with us; hopefully, everyone has a snack they like. Something you can eat even when food tastes like cotton wool or sawdust.

We have made good progress on the gentler slope and crossed the Teleki River again. It’s time to face the scree, small pebbles, and loose rock on the steep surface of the mountain. This has been formed by many years of weather. The scree is covered by a layer of snow, enough to see and step on. Stepping onto the scree turns it into mud after several climbers have stepped into the same place, melting the snow into water and soaking the mud. The distance does not look long, and the climb is endless. After what seems like a very long time, the guide asks if we want to stop for a break and take a snack. He informs us that we have progressed and are almost halfway up the Austrian hut. A third! I feel discouraged. I was hoping we were halfway there. I have to repeat what I have done twice more!

I imagine how it feels like raising a child who is on the spectrum; every day is a repetition of care. We hope they will see a change. Today might be the day he finally says a word. Maybe today, she will spontaneously smile. Or, the big one, they will finally learn to use the potty. I am sure it must be discouraging for caregivers. The hope that sometimes never seems to be realized. The wishes that we never know if they will ever be fulfilled. Living with the hope of uncertain dreams beyond our control or action.

We trudge on as the legs feel heavier. We carry lighter packs filled with water, snacks, and warm layers. The sunlight glares off the snow, and we are advised to bring sunglasses or goggles as the bright light can damage the eyes. It can cause some temporary loss of sight. Most team members are upbeat, but it is not easygoing. Even though we have been going uphill, we get to the steep part. The first time I climbed this peak, there were no guiding ropes. The sheer drop on this side caused terror to anyone with a fear of heights. Thankfully, now there is a rope.

But you cannot pull yourself up unless your arms are strong. Your feet still need to carry you. The guides kept saying we were almost there; this was to be a 45-minute climb… We have been at it longer than that; it’s very cold and slippery. Most of us feel tired from the altitude … and thin oxygen levels……

Do caregivers ever feel like they are not quite getting there? Keep at it. They will walk and grow stronger. They will be able to eat better or chew. They may smile one day. They are past their teenage years and still nonverbal. How do you keep hope alive?

Finally, we are at the final stretch and can see the steel steps put into the rock. How did we get to this last part? We were tired yet had no easy holds. The guides would position themselves strategically, as a fall could be fatal… and you could take the guide down with you. Each of the team members scales up the last steps. Tiredness and altitude are forgotten temporarily. Yes, we have all made it. It is humbling, and we stop to savour our victory at the summit. The weather is kind, with no harsh wind. No rain and the sun is actually shining……

A young boy, fifteen years old, is part of our crew for a few moments, and he is climbing for an entirely different reason. Another team makes the final summit while we are there, and we realize that each of us, while united in our victory, means different things to each of us. We pose, take pictures, take a video, and shout out our reason for making this climb. It’s important. Those on the spectrum are important. Anyone with special needs and disabilities is important. We do this for them. We climb and stand for them.

After a few minutes, more than usual because of the kind weather, we begin our ascent down. We do so carefully, as more mistakes and accidents happen going down than going up. People are more tired and perhaps less careful. And it’s still steep and more slippery since we have created a mushy mess of ice and soil. In some places, you must hold the steel rope and move backward……

We eat a snack at the Austrian hut and descend back to Mackinders…. We are jubilant. We did it…. but the descent is not that easy either. This one takes a toll on the muscles as you continually slow down. The team is elated but tired when we get to the Mackinders campsite. The adrenaline rush is over. It was a successful but challenging day. We drink tea and eat popcorn. When I think of it, popcorn is not something I even think about, but it certainly tastes good on the mountain. Really good. I had carried a pack of UNO to while away the time, and this seemed like a good time to play a game. Soon, most of the team joins in. It’s a do-or-die game. Everyone is determined to win with no holds barred.

No quarters were given. It’s UNO gone wild. The requests get more bizarre.

I think about my grandson. Will he be able to enjoy a social game like UNO? Where aspects around social cues count? Will he be able to watch body language and tell when people are probably cheating or, with his trusting and innocent self, likely be on the receiving end of the short end of the stick? There is so much that we quickly take for granted that, for him, will have to be learned the hard way. The game gets very noisy. Noise is painful for him. If he were to play, we would have to mute our voices a little. He catches on quickly and understands so many things that we cannot tell because he does not vocalize them. His world is one I want to understand. A world I want to live in as best I can.

There is a commotion at the end of our large cabin. The big cabin has several rooms with double-bed bunkers. Each team is assigned a room. A long corridor has tables and benches where we have our meals.

A new team arrived today, but one seems not doing too well. There is a whole crowd huddled around her. My dear friend, a medical doctor, goes to check on her. She has developed symptoms of pulmonary oedema, which is altitude sickness, where the water starts to seep into the lungs, making it difficult for the person to breathe. If not treated or if it escalates rapidly, it can be fatal. Arrangements are made to get the rangers to rescue her and take her down to a lower altitude. It is the only way to manage this dangerous condition. Guides should watch out for it and alert the trained rangers. Sadly, it has caused many deaths in the mountains, not just in Kenya but the world over.

I am glad they picked it up quickly, as timely diagnosis is key. Action to make a difference is critical. Is this not just the same for Autism? Diagnosis and intervention. Denial or lack of action for severe mountain sickness leads to death or disability. Denial, the lack of training, and the sheer cost of the therapy and other needed interventions for children with special needs is truly a death sentence for them. Some children are locked up, kept away from social interaction, and Left in a world where they cannot share the gifts they possess. Think of the talents never explored or discovered. We allow them to die a slow or quick death from neglect and inattention.

I hope to sleep better because I have gone from a higher altitude and now am sleeping lower. But it is not to be. After fitfully dozing off, every time I check my watch, only another half an hour has passed. I wonder about the lady who was evacuated off the mountain. Did she get down on time? Is she okay?

At 2 a.m., the rest of her team is awake and having breakfast, and they are very noisy. They intend to summit at sunrise, which means climbing the steep scree in the dead of the night. It’s no longer raining, but it’s really windy. It’s been so windy that the doors in the cabin needed to be locked. The wind slams the door open when simply closed. They finally leave, but strangely, as I struggle with my fitful dozing, I hear sounds of return. In the morning, we learned that half of their team had not summited as it was too cold and windy. There was a concern about people being blown off the mountain in the less protected areas with sharp drops. Safety first is the motto on the mountain. No heroics or unnecessary risk-taking, as this can cost a life.

Speaking about safety first, if it’s not keeping the child safe, walk away. Unsure of the caregiver? Bad vibes about the therapist? A lack of understanding, unkindness. Place the needs of the child first. I am reminded of a child on the spectrum who was in class with my grandson. I do not recall the whole story as I heard it from other sources. It might have been a new caregiver, and he choked. Probably struggling with texture and taste. Did they force him to eat? Or was it just a simple accident? We will never know, yet the shock remains. Yes, even children who are not on the spectrum sometimes have these sad and fatal accidents. But those with special needs are much more likely to experience this as they are not able to say ‘stop ‘and no and speak up when someone may not be treating them right!

Day 5: And Down We Went

We enjoyed a hearty breakfast and set off on our descent, which was relatively easy. Muscles are sore from the days of exertion, but the mood is light. The stories start to flow once more as the team basks in the glory of a task accomplished. One mountain conquered, yet it’s never done until it’s done. Coming down is hard on joints. The action of continually breaking makes for stiff knees and ankles.

We did not see many animals except for the waterbuck and buffalo as we entered the park and the rock hyrax, which are plentiful around the camp, though the presence of other animals is evident by animal spoor. The droppings of both a leopard and buffalo line our winded paths. The rain drizzles on and off as we come down. This is mountain weather, which changes constantly. It’s the mountain, and you simply take it in stride. You anticipate it, prepare for it, and accept it.

Like the special needs for children on the Spectrum, you expect the unexpected and deal with it as best as possible. We are back at the Met station early and have an afternoon and evening to while away with our card game challenge. Some team members are determined to win, but victory eludes them. They strategize but discover it’s also pure chance. You cannot determine which cards you pick. You play the hand you have been dealt. When victory seems at hand, someone deals you a card to get extra cards, and you watch helplessly as your victory slips away. Or they make you skip a turn, and the colour of the card’s changes. You no longer have a finishing card.

Day 6: Off the Mountain, done but not Dusted … it is an End and a Beginning

We are ready to get off the mountain. The road from Met station to the Naro Moru gate is paved, making it easy but also hard, as a paved surface is harder on joints. Once we eat our breakfast, we start our rapid march downhill.

What stories have we not told? What burdens did we carry that we have left up on the mountain? 5 days of walking continuously for the better part of the day is a lot of time to reflect. You cannot always talk to other climbers, especially when climbing, as you get breathless.

You think about life, your origins, accomplishments, hopes, desires, dreams, purpose, and identity. For me, a lot of the time was also spent in prayer: for my grandson and many children like him who are like him yet not him, for my other grandchildren and my children and their partners, for many other children who are mine by bonds of love, for my family, friends, and those working to make a difference for children with special needs.

My church, Nairobi Chapel Ngong Road, has a sensory room to accommodate children with special needs so they can be included in our church services. It is also training staff and volunteers on how to work with those with special needs and be inclusive.

In just a moment, the 10 km walk is done. We can see the herd of waterbucks graze at the gate, a small, shy, seemingly tame group. They never let you get close to them and glide away as a team the moment you approach.

The friendly wardens congratulate us as we leave the entrance, and our guide checks us out to confirm that we have all returned. The porters need to show that we carried our non-biodegradable waste down and did not litter the mountain.

It’s time to pose for a photo. The Eastern African Alliance of Childhood Disability (EAACD) team has come to meet us.

They are working relentlessly to improve life for children with special needs in this region. What a privilege to partner with them on this. This is not the end. Instead, It’s a comma, not a full stop. This one climb is done, but there are many more to come. When you sit for a while as you get up, you realize your muscles have taken a beating, and it’s been 5 days since your last shower!

It’s a thanksgiving for time well spent and for completing one step in the journey.

The journey has just begun………….