Maria’s Story

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We have a new SEN class teacher. And we love her.

Maria, new to our SEN staff team.

This is Maria. We didn’t employ her because she has a masters in special needs education or comes with a blinding resume filled with relevant training courses and a steep progression of promotions. No, we employed Maria because he is a single mother of a child with cerebral palsy who has battled against the odds to bring up her son. And in our eyes, that  (along with her teaching qualification) makes her the perfect candidate for Small Steps Foundation.

This handsome guy is Aslam, Maria’s son.

Maria is not sure of the origin of Aslam’s CP. All she knows is that as he grew and it became clear that he had a disability, her husband grew unhappy. “He has many wives,” she told me. “He said ‘None of my other wives produce children like this. This is your fault! You go away with your child!'”
I asked her if she was sad when this happened. She laughed and said, “At first I cried but then I realised he wasn’t a good man and I’m better off alone.”

Maria went back to her mother’s home with Aslam and his older sister. Her mother is elderly, she told me, so other than a roof over their heads could offer no other assistance.

Maria’s love for Aslam is clear and prevailing

“I went from place to place looking for a job. I am a teacher so I thought it wouldn’t be too hard. But everywhere the told me they can’t accept me to come with Aslam and I didn’t want to leave him somewhere so I couldn’t work.

Maria helped Sosi with his writing in the SEN class

“The neighbours told me ‘You leave that child somewhere and get on with your life’ others told me I was wasting my time on him and I should abandon him. But he is my child and if I can’t care for him, who will? So I suffered like that. Some people we’re friends to me, others refused me as a friend because they thought I was cursed.”

It wasn’t until last year, when Mary, Buwenda Women in Action chairperson, SSF community liaison and mother/grandmother extraordinaire, was visiting her husband’s family in the village and met Maria that things started looking up.

Mary invited Maria to visit us a Glory Be Nursery so that Aslam could undergo assessment and referral. On realising that Maria was a qualified teacher and that we were looking to expand our SEN staff team, headteacher Immaculate did no hesitate in interviewing and subsequently employing Maria and offering a place to Aslam in the SEN class.

“I am so happy now,” smiles Maria. “I am working and my boy is learning. He is learning new words and how to help himself.” She says she has no regrets leaving her village and joining us and at least feels safe and accepted.

Aslam works on his prewriting skills while in the standing frame

Maria has the patience, adaptability and most of all the love for children with disability which is the cornerstone of SSF’s work. We feel so privileged to have the opportunity to work with such and strong, resilient and caring women.

Maria supporting the children to measure during a baking class

Aslam is now attending regular physiotherapy session in addition to his nursery education. He is at the upper age limit of our services but we hope to provide him with a sound basis for his continuing education and a smooth transition into primary education. With her wages, Maria will be able to afford to send Aslam to a special needs primary school.

Maria told me she was more than happy to share her story with anyone, anywhere in the world, who cared to listen.

Mary’s Determination

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When Mary’s daughter was 3 years old she thought was going to die. She developed an extremely high fever accompanied with convulsions and was admitted to the children’s hospital where the doctors advised Mary to begin making funeral arrangements.
Mary with SEN Class pupil, Sakira

However, days crept into weeks, and Mary’s daughter did not pass away. And though she remained weak and unresponsive hope returned. After sometime Mary was advised that she was out danger but that she would be left with permanent physical and learning disabilities.

Mary told me “everyone looked at me sadly as if my child was ruined, but inside my heart was happy because she was not dead. I was just happy that she was alive and I didn’t care if I would have to struggle with her being disabled”.
Eventually Mary took her daughter home. The once precocious and verbal 3 year old now lay weak on a mat unable to speak, unable to stand and still suffering spasms down one side of her body. Some friends and neighbours advised Mary not to waste her time with the child and to focus on her other ‘healthy’ children. But instead Mary spent hours playing with her daughter coaxing her to feed herself, to stand and to interact.
Mary encourages Winnie to walk during an outreach session.

One day, many months later, as Mary was administering some medicine to her child, she told her to open her mouth up wide. And for the first time since her sickness she followed an instruction. Bewildered and overjoyed Mary called to her other children to witness. They all laughed at their mother telling her she was imaging it until lo and behold she did it again for them. “Lift up your arms!” they told her and she did.

Daily, thereafter, Mary and her other 4 children took turns doing home-made physio exercises and devising new ways of engaging their sister to talk and play. And slowly, slowly, over time the child began to regain her skills.
Today, that child is our formidable head teacher, Immaculate. Mary describes Immaculate as the brightest and most capable of all her children. She graduated at the top of her class in Early Childhood Education from Nile Vocational Institution where she was asked to stay on for an extra year to extend her studies and mentor the weaker students. At school and in the community she is a force to be reckoned with and is the model of a strong, confident, modern African woman who still maintains her family traditionalism. Apart from an almost imperceptible limp, there is no trace that remains that Immaculate was ever “physically and mentally handicapped”.
Immaculate playing party games with Baby Class
Immaculate has no problems leading the whole school!

 

Mary is chairperson of Buwenda Women in Action, the locally run Community Based Organisation (CBO) through which SSF run the nursery and most importantly the SEN project. She is our community liaison and outreach coordinator and she provides counselling and mentoring for the parents and guardians of the children with disability with whom we work.
Mary spent hours counselling Norman’s mother to cope with his special needs.

When we first came to work with Mary, we did not know this story. But we were impressed from the first by her commitment, modern attitude and never-ending faith in the children and families we work with. Mary has come to be the cornerstone of our community work and is an example to mothers the world over who face the sometimes overwhelming weight of supporting a child with additional needs.

Dust

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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!

Epilepsy

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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

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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

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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.

Preparing for School

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There is one week until the school year commences again and plenty to do. Children are enrolling, uniforms need to be made, learning materials need to be bought, resources need to be made, school shoes and boarding requirements are needed for the sponsor kids.

 

And yet I feel like I’m on holiday.

 

These days I entrust the majority of the work into the hands of Glory Be’s more than capable head teacher, Immaculate and her bursar/mother, Mary. This is part of our move towards encouraging the community to take ownership of the projects and be the ones driving the development of their village.
Bursar and Buwenda Women in Action Director, Mary busy at work in her office
I must say, it does free up a lot of my time, which means I get to do a lot more of what I enjoy (namely creating and laminating interactive learning aids for the SEN class, assessing special needs children and attending community outreach).

 

 But with it comes a certain anxiety. I put this down to a mix of concern about the potential misuse of funds and a personal issue with the loss of control! We still have in place rigorous checks. The budget is discussed and negotiated in advance. All the items are inventoried against the budget. Each and every item purchased comes with a receipt, each receipt is checked against the current going rate based on my own enquiries and the purchases of other organisations. And at least now we don’t have to worry about getting “muzungu price” in the market.

 

Uniforms, half sewn. The tailoring work is done by a local mum who’s son, Derick, we sponsor to attend special needs boarding school due to a developmental delay. 
I have come to learn through this process that Immaculate is a force to be reckoned with. She wants the best quality at the cheapest price – and she gets it. She wants posho fresh, even still warm, from the mill, identical collars on every uniform, the thickest paged exercise books. If you don’t meet her standards you’re likely to be axed. I even worry some days that if my colouring in isn’t up to scratch on the wall charts, my number might be up!
Headteacher Immaculate: A force to be reckoned with!

Whilst I will continue with the rigorous protocol regarding money handling, I have come to learn that the biggest issues with this process is simply my desire to be involved and in control of everything, all the time! Oh well, it could be a bigger fault.

Introducing Sadiki

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Sadi’s Grandmother has said she thinks the devil got into him. She says it with a sigh and a sadness which demonstrates her deep love for the boy. She does not blame him, or make him suffer in any way for this. But this is what she and most of the community at large believes. The devil got into him.

To us, Sadi is a delight. He brings light and joy into even my most stressful days. We laugh together, play together and despite his dramatic language delay, we chat together in a mixture of English, Lusoga and pre-verbal babble. Sure, sometimes he bites us, stabs us with a pencil or throws a shoe at us, but that’s just par for course when working with children like Sadi.
Mukwanos: Me, Sadi and Norman

 

Sadi has severe communication, social and behavioural difficulties. In the UK he would most probably be diagnosed with an autistic spectrum disorder, but since that is almost impossible in Uganda, he is just Sadi.
Sadi “helps” Teacher Christine during shape sorting

Sadi was born to a single mother, who unable to cope with his constant screaming, crying and head banging entrusted his care to the grandmother at the age of 2. Sadi lives with around 18 other children who share his care since he needs constant attention to ensure his own and other’s safety.

Sadi with his baby cousin, Shakira
Chai: Sadi’s favourite game, dolly’s teaparty
His grandmother, or Daada, dotes on him. She sleeps with him in her bed so she can sooth his night terrors, she helps him to bathe and eat and she rocks him in her arms when the “daemon’s come to attack him” and cause him to lash out at himself or others.

 

Sadi works hard on an activity sheet: 1 year ago Sadi could not sit still or hold a pencil.
Since joining the Small Steps Foundation SEN Class at Glory Be Nursery there has been a dramatic change in Sadi. Previously nonverbal until the age of 5, Sadi learns new words daily and enjoys sharing his linguistic knowledge with others. Our amazing teachers and support staff have nurtured Sadi and drawn out of him so much knowledge. He can now count, recognise some letters, toilet himself, brush his teeth and share toys. Most impressively of all, he can now go a whole day without an incident of challenging behaviour.
Sadi washes the “babies” during a “Taking care of myself” lesson
Sadi embraces his paternal side

 

 

 

Sadi learning to sort shapes

 

 

Initially it came as a surprise, but Sadi is popular at nursery. Every child wants to be friends with this quirky, creative, fun loving little boy.
Sadi swimming for the first time – with Chloe
I will write a lot about Sadi in times to come as he is a constant source of inspiration and joy to me. So now, hopefully you know a bit about his background.

 

Sadi shows off his visual timetable which helps to orientate him during the nursery day.

Disability in Uganda

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When you talk of disability in Uganda, people usually conjure the image of the “lame”. And indeed, this is a common sight. Not a day goes past without seeing the hand peddled tricycle of an individual crippled by polio, untreated clubfoot, unmanaged cerebral palsy. People are often ready to share their stories of the girl at the high school in town who writes with her feet or so-and-so’s cousin who walks on their hands but is teacher/doctor/local government leader.

 

Gorgeous girls: Gloria and Sakira both have Down’s syndrome. Due to their similar appearance, the community assumed they had the same father.
Dig a little deeper and you get to the deaf. People know about the deaf, yes. There are schools and a language. There is even a deaf culture beginning to thrive these days. The blind? Yes, we know about that too. Difficulties persist: insensitivity fuelled by ignorance and unfortunate stereotypes; lack of resources or proximity to support; isolation in a community where even the most able struggle to survive. But still, people know what it is.

 

Winnie has cerebral palsy. Her father used to lock her inside, out of sight, all day while he went to work until he finally abandoned her with a local grandmother.
But learning disability, what it that?

 

It meets with a lot of surprise, interest and confusion, sometimes sadly, even from those who claim to be trained in special needs. I have lost count of the number of times I’ve explained learning disability, possible causes, effects and difficulties and possibilities to a lively, receptive and seemingly intuitive crown,  only to later present a child as an example and be meet with “Him, oh, he’s mentally disturbed, you can’t do anything thing with him.”

 

Sadi has communication, social and behavioural problems. The community believe he has the devil in him.

Learning disability is profoundly misunderstood in Uganda, as indeed it is the world over. Daemon’s, witchcraft, the sins of the father, staring at the light too long as a baby, retribution for wrong doing, bearing witness to the wicked – all these explanation have been offered to me as the source of learning disability in the children with which I work. God’s will is a more welcome, though still hopelessly shallow, explanation for parents who struggle to understand their burden.

Nasabu and Oliva were both left with developmental delay after early childhood sickness.  With support from the Small Steps Foundation Special Educational Needs Nursery Class they are now catching up and have been integrated back into mainstream classes.

 

 

But as I will continue to demonstrate in this blog, almost everyone I have met has been open-minded , willing to learn and to allow and embrace the change and development in the children they had once thought of as useless or hopeless….

 

TBC.