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Maria’s Story
We have a new SEN class teacher. And we love her.
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| 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.
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| 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.
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| 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.
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| 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.
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| 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.
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| 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.
Because Children Belong In Families! (even if they have a disability)
Yesterday I was in a meeting. As I introduced the subject of the meeting I said:
“…We are concerned that this mother might abandon two of her children as she is struggling to cope…”
The reply from the person with whom I was speaking:
“Have you tried “X” Home?”
I was confused for a moment and then, I’m not going to lie, a little horrified!
“But we don’t want her to abandon them?! We want to support her keep them,” I replied.
Now it was her turn to look confused.
I am so sad that this seems to have become the standard response to a struggling family. We seem to have collectively become confused somewhere. Let me serve a reminder: CHILDREN BELONG IN FAMILIES. We know this. We recognised this many decades ago in our care model in the UK. We recogise this time and time again when we read the statistics that show the correlation between criminal convictions and growing up in care or when appalling conditions of orphanages are revealed for instance in Eastern Europe are exposed. Just today the BBC shared an article on facebook entitled “A look into the heartbreaking world of institutionalised children in Japan.” (http://www.bbc.com/news/world-asia-28636008).
In what world would we suggested a parent in the UK give up a child they love??? Albeit the child is disabled. Albeit the parent is a single parent. Albeit she is poor.
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| Gloria with her single mum. |
No, rather, that parent would be offered support. She would be offered educational support for herself and her child. She would be provided financial support. She would be provided parenting and social support.
So why should that be different in Uganda? Of course poverty is a factor. But why do we, as donors, choose to funnel our £$ into residential care homes rather than family support? A couple of months sponsorship that might be paid to an orphanage is often enough to set up a small business for a family.
Of course there are children who have been abandoned and are untraceable. Of course there are (a few) children who literally have no living family members to take on their care if they had the means. But these children, disabled or not, are surprisingly few and far between.
Every single one of the children with disability we work with has someone who loves them. And all of them, with the exception of two children, live with family members: parents, aunties, grandmas. As for the other two, they were both taken in and fostered by community members who chose to love them and provide them with a family*. This makes me so happy.
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| Linda with her doting grandmother |
Of course many orphanages are doing a good job. Children’s needs are being met; they are clean, well dressed, healthy and educated. But wouldn’t it be lovely if children were these things AND living with a family?
From the BBC article cited above: “Kevin Browne, a professor of Forensic Psychology and Child Health at Nottingham University, said in the Human Rights Watch report entitled, “Without Dreams” that “even apparently ‘good quality’ institutional care can have a detrimental effect on children’s ability to form relationships throughout life”.
Having a child with disability is sometimes seen as a curse in Uganda. And more frequently, and understandably, it is seen as a burden. Life can be hard here and add to that the additional health and nutritional needs of that child, the difficultly of transporting a child with mobility issues, difficulty accessing education (that’s where we come in!) and so on.
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| All four of Maama Nam’s children have learning difficulties. Does that make her life hard? Yes. Would she give up Nam or any of her siblings? No. |
But I would really like us collectively, as a community (Ugandan and global), to start thinking of ways to help families stay with their children and support them to carry their burden as opposed to simply “alleviating” it and by doing so creating an “orphan” on one hand and a mother who has to carry the grief of being separated from their child on the other. It is not only an ideal but our responsibility.
Let’s start thinking about family support.
Let’s start thinking about providing networks of people to provide respite and a shoulder to lean on and perhaps sometimes cry on.
Let’s start thinking about capacity building and income generation so that poverty is not the overriding factor.
Let’s start giving options to parents so that they don’t feel trapped into giving up.
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| Maama Derrick tailors the Glory Be school uniforms, using the money to contribure to Dericks’ SEN boarding school fees. |
And where this fails, or has already failed:
Let’s find and support the children’s wider family so that they can still grow up with their relatives; tucked into bed at night by an auntie, a grandmother; playing with their siblings and cousins; learning the culture and customs of their tribe; knowing they are loved, are wanted and belong.
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| Sadi lives with his grandparents and eighteen cousins. He co-sleeps with his grandma who run’s her busy household around Sadi’s additional needs. |
And where this fails, let’s move towards a model of fostering and adoption, within country where possible, and away from a culture of “homes” and “orphanages”. This may sound unlikely if not impossible, in a country where people are often already stretched to the max…but it turns out, it’s not!
I was recently touched by a story from our friends at Ekisa Ministries. Ekisa provide residential care for disabled children who have no one. But they are committed to keeping children in families. They have a dedicated team of social workers who trace families and provide the support and motivation for relatives to take their children home.They also provide community based support, employment and capacity building for families with children who are disabled.
This article tells a really special story of a child with special needs who has been adopted by a Ugandan lady who is no relation of his: http://ugandansadopt.ug/2014/08/love-conquers-all/
So let’s try and keep focus, and remember, that every child deserves a family.And it is our responsibility to support this.
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| Sakira and her Grandmother adore each other. |
*One of these children does now live in a residential care home as her foster-grandmothers health deteriored with age and she was unable to physically care for her any longer. No family members could be traced. The home that was chosen for her follows a family style model of care.
How educating children with learning disability can contribute to sustainability….
I’ve been thinking a lot about sustainability lately. I’ve been involved in a few conversations about it. I would call them debates except, given that I *usually* surround myself with rational people, we usually agree: sustainable, good; non sustainable, try a bit harder.
It got me to thinking about the sustainability of our own project. Sustainability is a complex issues. It’s not as simple as making something financially sustainable; self-funding and therefore lasting. Of course, this is one of our aims. One that we are moving, slowly, towards. I’m currently working on funding proposals for grants which will provide Glory Be Nursery with income generating agricultural projects. This will have to be a on large scale otherwise we simple wont make enough funds to make it worth while.
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| This is our cow, Rachael. She provides milk for the kids in their porridge. |
At present the school fees are subsidised to make a quality education accessible to all the families in the village. The easiest way to make the school sustainable would be to raise the school fees. However, we would need to at least quadruple the school fees in order to cover all the cost associated with running the nursery. This would be impossible unless we worked with all of our 150 odd families to increase their own capacity (and consequently income) so that they be able to pay these new fees.This would be ideal, this would be wonderful.
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| Our uniforms are tailored by Maama Derick (not pictured) which provides employment for one of our parents of a child with learning difficulties. |
Capacity building through vocational training and micro-finance is one of the aims of Buwenda Women in Action, our community based partner organization. At present BWA have a goat rearing program whereby goats are bread and passed on to the next member with the aim that each member will soon have their own goat. It’s small but it’s a start. BWA have numerous income generation plans for individuals or collectives, the current issue being funding and start up capital. However, this aside, it would be simplistic to think that every family would be able or indeed willing to engage in these programs let alone that the kind of income generated would be enough to make it possible to pay four times the current nursery fees (plus uniform, plus porridge etc etc) as well as supporting their other children’s education.
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| Bernard chills out with one of BWA’s goats. |
Instead, we’re looking at the wider picture of sustainability. Education, in itself is sustainable. It’s goals are longer term, of course. It will take 20 years, but *hopefully* little Gift who enrolled in Baby Class this year will have been afforded a quality education, and more than that, a positive attitude toward education, that means she will be both financially stable enough and motivated to pay her for own children’s quality education…and health care….and all the other associated cost of bringing up a healthy, happy child. And perhaps she will be doctor, or an engineer, or a (honest!!) politician…
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| I just love this photo. |
This is why we concentrate on early years education. We feel strongly that by giving children a foundation of core skills and values they are far more likely to succeed in education. Of course, the very fact that children who have attended nursery will know their alphabet, numbers and have mastered basic pencil skills before they reach their Primary 1 class of 120 pupils is a huge advantage. But not only that, by learning from the youngest of age that education is fun and valuable they will go on to have a positive relationship with education in the future.
So, how do children with disability fit into this model? I often feel that this is our biggest obstacle; convincing the skeptical that educating children with learning difficulties is worthwhile and even sustainable. Here’s how it works:
1. By providing a safe, nurturing environment for children with learning disability, we are providing their carer respite. Many of our guardians would be unable to get on even the most simple of daily tasks whilst taking full time care of the child. Constant supervision to ward of dangers, additional toileting needs, feeding issues can get in the way of basic cooking, cleaning and washing, let alone digging or formal employment.
Where employment is an option, many of our guardians have been unable to take this on as they cannot find appropriate childcare.
Similarly, some of our children have been cared for by their older siblings or cousins to the extent that they are kept home from educational opportunities. This, obviously, is not sustainable.
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| Christine (left) helps to look after her auntie (!) Peace (right) when they’re not at nursery so that their grandparents can work. |
Even four hours a day (some of children with special needs stay for up to 8 hours daily), can give carers enough time to run the house hold, access work and/or education and even just to recoop. This is helping to support a family to be hold itself together and sustain itself.
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| All four of Maama Nam’s children have learning difficulties. We have supported three of her children over the past three years so that she can get some time to carry out day to day activities. |
2. We provide children with learning disability skills that can help them be more independent and even help out at home. Self-care skills (not least, independent toileting!), life skills (e.g. washing up, sweeping etc), a sense of personal identity, independence, personal safety and so on. By increasing a child’s skills base, we are freeing their carers up to participate in other meaningful activities.
3. We work with children with developmental delay (usually from infantile sickness but sometimes from neglect or malnourishment). These children are sometimes discounted educationally and left at home by parents, community or teachers. In fact, many children in this situation do not have a pervasive disability. With our support, these children can often catch up their milestones and move on to mainstream education and never look back.
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| Nasabu was sick for a long period of time as a toddler and her milestones were delayed so her parents decided not to send her to school until she they heard about the SSF SEN class when she 6 years old. Nasabu is now coming top of the mainstream Top Class as ready to go to primary school next year! |
4. Despite some people’s beliefs, people with learning difficulties can go on to have jobs, families and a wonderful existence. I have hopes and dreams for all of the kids we support. I can envisage Sakira working in a restaurant in town, and I can see Sadi as a sought after technician fixing every bust radio and mobile in Jinja District….These children may go on to be adults who can support and sustain themselves. (Okay this might not be realistic for all our kids, but we should be working towards it!)
If we give up on these kids before they are even primary age they will not have the support and education they need to enter employment and will continue to be added pressure on their families or, in the worst case scenario, they may be abandoned.
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| Sadi is considering a career as a hair stylist |
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| Nam would like to be a nurse when she grows up. An operating theater nurse. Who assists with screwdrivers. |
5. By focusing on inclusion from an early age we are challenging society’s stigma relating to learning difficulties. Children are not born to marginalize and I am constantly delighted by how well the children with special needs are accepted at Glory Be Nursery. I am confident that these kids will grow up to be accepted within their community. They will not be refused jobs on the basis of their disability but given chances on the basis of what they have achieved. With a peer support network their additional needs will hopefully be catered for and their vulnerability reduced.
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| Destiny sharing snack with friends at play time. |
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| Sakira is a lively and popular member of Top Class. |
So there you have it. My case for why educating children with learning disability is, in itself sustainable at least to some degree. Yes, we have some work to do to make our current projects self-sustaining, and we have a long road ahead to ensure each individual child we work with can participate in the sustainability of their own future but I like to think we’re on the right path.
Mary’s Determination
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.
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| 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.
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| 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”.
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| Immaculate playing party games with Baby Class |
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| 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.
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| 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
When I said I was going to write a blog about “dust” people laughed. But I’m doing it anyway!
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| 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.
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| Boda driver, Sam, in his “dust proof” outfit! |
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| 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.
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| 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
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…
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| 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.
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| 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.
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| 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.
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| 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.
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| 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!”
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| 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.
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| 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?
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| 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.
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| 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.
smallstepsfoundation.co.uk 
