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.
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.
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.
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.
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.
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.
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. 

 

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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.

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.

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.

 

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…

 

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.

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.

 

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.

 

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.

Sadi is considering a career as a hair stylist

 

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.

 

Destiny sharing snack with friends at play time.
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.

 

Disability in Uganda

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.