Dust

When I said I was going to write a blog about “dust” people laughed. But I’m doing it anyway!

Dust hangs off banana trees along the Budondo Road

People underestimate the effect dust has on lives! They think of it as an inconvenience, which of course it is. During dry season you cannot go along for even 5 minutes along a dirt road without your entire body being covered in a thick film of orange. Boda drivers wear their jackets backwards and wrap scarves around their faces to protect their clothing and faces but you’ll usually find they still end up with bright orange eyelashes.

 

Boda driver, Sam, in his “dust proof” outfit!

 

My foot, thoroughly dusted!

But I have a more intense objection to dust. It’s dangerous!

Firstly, think about the consequences of a five year old walking 5 km to school everyday along this road breathing this in. Numerous kids in Buwenda have health complications due to dust, mainly respiratory: persistent coughs, chest and sinus infections and of course continually runny noses.

 

The roadside along which the children walk to nursery. Hundred’s more walk kilometres to school everyday!

The dust blinds you when a truck or a car speeds past, temporarily of course. But actually, the bacteria contained within the dust can cause both simple and complicated eye infections as well as irritation. And not to mention the danger of a boda driver missing a potential hazard – perhaps a child – has he struggles to keep the dust out of his eyes!

One effect of dust that I had not ever considered before living in Uganda is this: during dry season water is scarce. Most people who live in Buwenda collect water from boreholes, the river and if they can scrape together enough pennies, they buy it from  a local tap. To ease this burden collecting rainwater in tanks or even simply basins as it rolls of the corrugated iron roofs is commonplace. In dry season, when the rains come as infrequently as once every six weeks, one would wait with great anticipation to catch it! But alas, the roof is coated with dust! And the only water you can catch is thick and dirty and completely unusable.

 

Okay, so that is pretty much all I’ve got to say on the subject of dust. But I still think it’s worth thinking about!

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Epilepsy


Epilepsy does not have a good PR rating in Uganda. Traditionally it is associated with witchcraft, madness and is thought of as being contagious. And unfortunate as it is, it’s not hard to see where these stigmas come from.

 

Over and over you hear the same stories “she was okay, but then the devil got her and gave her convulsions and now she’s mad”, “he was okay until he went to the village when he was six and there someone was jealous because he was a handsome boy so they witched him and now he’s like this” and so on…
Christine’s epilepsy went uncontrolled for years unfortunately leaving her with irreversible brain damage. Luckily, her parents now know where to access medication for her and she will be starting the SSF SEN class this term
It is not uncommon around both village and town to bump into the local “crazy” from time to time. I was saddened to hear that the “crazy” most local to our nursery, is in fact a man who suffers with epilepsy. “You see he used to be okay,” they told me, “but from time to time he falls down and shakes and the convulsions take him. And after some time, his minds went off and now he’s like this. He can’t look after himself and most people are scared to go near him.” It is clear to me, this man is not “crazy” but moreover the victim of preventable brain damage caused by uncontrolled seizures.

 

On an outreach with Home of Hope Ministries earlier this year, we came across a local government leader who quite calmly and pleasantly told us we were mistaken and of course epilepsy was catching. He remembered fondly, with a big grin, the times when he was a boy when they took the local epileptic, who was isolated in a hut alone, food that they pushed to the door with a long stick for fear of catching the sickness. He thanked us for our “sensitization” and for correcting him on this fact, but I fear this old man’s thoughts and opinions had not really changed.

 

Home of Hope Ministries Director, Edith, gives a sensitisation speech during an outreach.

 

 

Luckily, Home of Hope Ministries achieved what they set out to do that day, which was to distribute monthly anticonvulsant medication to the epileptic children of the rural communities. Epilepsy medication is free from government hospitals, but how are you to know that? And even if you know, how are you to afford transportation? With initiative like this, replicated by many organisations, many remote villagers are getting the chance to treat their children and, just as importantly, learning about the true nature of epilepsy, that is: it is not contagious; it is not the devil; it is congenital or the result of brain injury or sickness and; it is usually controllable.
The medical officer with Home of Hope Ministries distributes anticonvulsant medication free of charge in the community

 

 

Hopefully these children will have a chance of a happy and productive future, unlike their “crazy” and isolated adult counterparts.

Communication in Small Steps


Recently I’ve noticed the communication skills of the kids in the SEN nursery  class have improved dramatically.

 

In particular I love Sadi’s “story telling”. The other week there was a bird caught in the ceiling of the school flying backwards and forwards looking for a way out. Sadi repeatedly pointed to it saying “Nkoko, ki ki ki?” (“Chicken, what is it?”) shrugging his little shoulders and looking very concerned.

 

The next day I came to school late. Sadi ran directly to me and pointed to the ceiling saying “Nkoko, ki ki ki?” again but then held his nose and mimed wafting. It turned out that when they arrived at school early that morning they had found the bird dead on the floor. This is what Sadi was telling me.
Sadi using resources as a means of communication

 

Another time, Sadi could hear the noise of a chainsaw somewhere nearby, which is very unusual for the village where most work is done by hand. He went to investigate with TA Lydia. On their return Sadi mimed the whole story punctuating it with some words of seeing the chain saw cutting down the big tree and the man “sleeping”.  Lydia filled us in that the man had been lying down in order to get full reach across the tree.

 

For a child who was up until a few months ago almost entirely non verbal with and showed no particular desire to communicate and story tell I find this development both astounding and extremely pleasing.

 

Sadi tells us about his number work sheet
Then there is Destiny, 4 years old with cerebral palsy and learning difficulties. He’s still only has a few words but is showing an exciting amount of pre-verbal babble. Destiny used to sit still and passive only engaging when excessively encouraged. Now this little munchkin runs around in circles screaming when he’s excited, stamps his feet and cries when he’s annoyed and runs to greet you in the morning calling “Hi, hi, hi!”

 

Destiny “chats” to Teacher Christine
They might be small steps…but we’re going somewhere!

Feeding Difficulties

One of the biggest challenges facing disabled children in Uganda is feeding.

 

It’s a sad fact that many of Uganda’s disabled children will die not only from poor nourishment but being unable to feed, or their care givers being unable to feed them appropriately.

 

It is common for disabled children, for instance those with cerebral palsy or profound and multiple learning difficulties (PMLD) the world over the have feeding problems. Difficulties sucking, swallowing, gag reflex, oesophageal reflux, bite reflex, frequent vomiting and digestive issues are  frequent and can cause a magnitude of issues for both child and care giver not least of which include severe anxiety surrounding eating, malnourishment and risk or injury or even death from choking.
In Uganda these problems are only exacerbated by lack of resources, support and information for the care givers. In the UK you would be offered support from a multidisciplinary team of doctors, nurses, dietitians, occupational therapists, physiotherapists and speech and language therapists. They would teach you about how to position your child, how to improve their muscles and capacity to chew, suck or swallow, what foods and nutrients to give them. They would provide adapted utensils, furniture and other equipment and may even introduce tube feeding in some cases.

 

Home of Hope OT, Eddie, kneels behind David while feeding him to help support the correct posture for swallowing.
Picture, if you will, living in a remote village where no one has ever seen a disabled child before. Access to medical officers is limited and their experience with children like your own sparse to nonexistent. With stigma and ignorance facing you at every turn, how do you go about supporting your child’s feeding problems?
Luckily for Isaac, he lives close to a Soft Power Education SEN outreach clinic where he attends with his mum to improve his posture, muscle tone and his mum’s knowledge on feeding.

 

For most babies and children who cannot suckle they are given cow’s milk (if available) or, more often, thin posho porridge (maize flour cooked with water). Whilst this may ensure the child does not wither away it becomes clear that, without even considering the immune benefits of a breast milk diet, once the child reaches a certain ages, maize flour and water simply does not contain enough nutrients to support a child’s development. Disabled children are frequently malnourished and dehydrated. Parents are not neglectful and will struggle at great length to feed the but physically cannot manage it.

 

Rachel, who has cerebral palsy and feeding problems, with her mum. Maama Rachel feeds her posho porridge and biscuits soaked in cows milk if she can get hold of it.
Choking is a continual risk and without first aid training care givers often do not know how to manage this. In a recent visit to the Mukisa Foundation in Kampala I noted that by far their biggest activity was a feeding programme whereby mothers are invited daily to come together to feed their children and learn from professionals and their peers how to support their child’s feeding. The support the organisation are providing is not only vital but effective and it was a pleasure to see the Mum’s chatting away and casually but successfully providing their children with the nutrition they need. However, I was also deeply saddened by the wall of photos of children supported by the foundation who have died, many of whom, I was informed, were victims of chocking. This more than anything highlighted the importance of the work they are doing.