Wednesday, 15 August 2012

Helping disabled children in rural Mongolia

Recently, for those who follow this blog, you will have read about my trip through the south and west of Mongolia's stunning and wild countryside. The reason for this exciting journey was for me to document the work carried out by a number of physical and occupational therapists; Ben and Casey from Australia who are in Mongolia for a year on the AYAD programme (Australian Youth Ambassadors for Development), and Unuru and Zaya, two Mongolian therapists trained in Ulaanbaatar and who work alongside Ben in Kindergarten #10 in UB. We were also accompanied by a woman named Badmaa who worked as our translator, and Baterdene the driver, who was nicknamed Derek due to my initial difficulty in both remembering and pronouncing his name.

The idea for the trip was spawned from Ben, who realised that children with disabilities in Ulaanbaatar receive relatively good treatment, with a number of agencies operating offering occupational and physical therapy, as well as other treatments. However the children outside of the capital, and where the majority of disabled children live, have access to fairly low standards of treatments, as there are few trained staff and little funding available - and so it was planned to visit the countryside to offer some level of advice and assistance. 

The APDC were approached, as they have a presence in the majority of Mongolia's aimags (administrative regions) and were the ideal partner agency for running and organising a project like this. They knew the children in these regions, they mostly had a centre they operated from and would be able to inform families that the therapists from UB were visiting and so to bring their children along for assessment and advice.

The trip was predominantly funded by a number of mining companies who operate within Mongolia, as huge mineral deposits have been discovered in the country in the last decade and with more productive exploration still ongoing, Mongolia is set to be transformed due to the wealth locked under it's hills. Hopefully the financial reward of such natural assets will be felt by the people, and also used by the government to improve the desperately lacking infrastructure, rather than just lining the pockets of politicians and foreign corporations. Ben and Casey however approached the mining companies who have a presence in the different aimags that they planned to hold their clinics and workshops in, and found funding for the trip as nearly all companies of this kind have money set aside for social and community projects - a mixture of philanthropy and public relations. 

In fact, this was the last, but biggest, of three trips the group were to be taking, and I was only joining for this one final journey. Previously they had been to other parts of Mongolia; Dornod in the east and the Gobi in the south, running the same programme that I would be witnessing in the west. 

In each of the five different towns I visited with the group; Bayankhongor, Altai, Uliastai, Khovd and Olgii, the format for the event was the same. Two days would be spent operating from a centre in each town, with one half day session dedicated to a training presentation, where different disabilities such as Cerebral Palsy and Downs Syndrome were explained to parents, as well as information on the stages of child development, and the signs to indicate that a child's progress is not as it should be, possibly highlighting a disability. Parents took notes and were able to ask questions, and most sat their studying hard as if they were back in college, if they had ever been. One thing that did strike me during these sessions were the attitudes to mobile phones. If one rang at home in this situation the owner would usually be embarrassed and apologetic for interrupting - not in Mongolia, they mostly answer it and have a conversation without discretion. These sessions seemed to be successful, they were well attended, parents were very attentive aside from the odd phone call, in some cases what seemed to be productive discussions erupted, though I'll admit I didn't have a clue what they were talking about, and the therapists themselves seemed to be very happy with how it all went. 

Badmaa translates Ben's presentation
Ben talks to parents.
A full and attentive classroom.
Casey talks about child development.
Parents listen to the talks.
The remaining three quarters of the time was spent running clinics. Parents would bring their children to these sessions, to seek one on one advice, they could ask questions, and after an assessment by the therapists they were shown exercises and methods of helping their children, to improve their mobility and cognitive skills. Families would have around 45 minutes each and in most cases went away happy as they had been shown new ideas, exercises and treatments which would help their children in one way or another. Sometimes children were brought to the clinics who suffered from problems in which the therapists were not trained, and so the parents were given telephone numbers or names of people to contact in other agencies who may be able to help their children, rather than turn them away empty handed. 

Some families who lived in more remote and rural areas had travelled a long way to attend the clinics, such was the need and desire to help their children. In some cases young children were brought along by their older siblings, but they themselves were no older than 10 years old. The hardships that many of these families struggle through; the difficulties in raising children often with severe disabilities, without proper education, resources or the finances for doing so; often their only resource was love - struck me on the first session of the clinics in Bayankhongor, and I felt slightly emotional. I had to take 5 seconds to draw a breath and not let their unfortunate plight get the better of my sensitivities. They got on with things, and so would I. 

The majority of the children visiting the clinics seemed to have been diagnosed with Cerebral Palsy (CP), which is a condition that generally affects movement and motor control, caused by some degree of brain damage. The symptoms can vary from minor to severe, some children appeared to have some difficulty in walking correctly or performing certain physical tasks, other children appeared to be completely debilitated and dependent on their parents for 24 hour care. In each case the children were assessed, and then various exercises which would help them gain more muscle control were shown to the parents, which they were encouraged to do with their children on a daily basis if they wanted to improve their child's mobility and quality of life. 

Children with a whole range of different disabilities came through the clinics. Some had birth defects that would really require corrective surgery for them to make the progress which they were capable of. Others suffered from conditions that had escalated because minor problems had not been intervened with and corrected at an earlier age, and now for some of them the damage was done and could not be reversed. These were problems that would be diagnosed and treated at an early age in the West, so as they grew the problems would wane and they would be able to live normal lives. Due to the lack of provision of quality healthcare in rural Mongolia, these relatively simple problems had gone unchecked and created disabled young adults when it needn't have been the case. Some children showed symptons of conditions caused by malnutrition such as Rickets, a vitamin D deficiency, or other problems caused during pregnancy or childbirth, which just don't occur at home thanks to the level of care.

I learnt an awful lot from this trip and experience, that's difficult to list in it's entirety. I learnt about the fantastic work that various agencies, such as the APDC do in Mongolia. I learnt about the challenges facing families in rural areas, especially those with disabled children. I gained a new understanding of a range of conditions and how they affect people individually. I was offered an insight into life in western Mongolia, the culture, the politics, the people and it was an experience I shall carry with me for the rest of my life. 

My time on the trip was spent documenting in photographs the work that was going on, as well as making a short documentary film, which you can view here. This was the first time I had ever attempted to produce anything of this kind, so it was a learning curve in using the camera which I had never really filmed with before (it's new), in using the software and in undertaking a project of this kind. I'll leave you with a collection of photographs from the trip. 

Early intervention is incredibly important for children with Cerebral Palsy.
A boy with difficulties walking is encouraged to stand on his own two feet.
A father brings his daughter to the clinic, but the therapists are unable to treat a cleft lip.
A sister brings he younger brother to the clinic. 
A child born with deformity of the foot requires corrective surgery to help them walk.  
This baby was the most expressive and smiley we encountered, like a Cow&Gate advert.

Ben examines a boy who doesn't walk correctly. 
All smiles now.
A child with Vitamin D deficiency or Rickets, a bending of the bones caused by malnutrition. 
Ben examines a brain scan of a child who suffered a stroke. 
This sweet girl was very curious about the camera. 
Magda, a Dutch nurse working out in Altai with a Christian programme. 
A father and daughter in Altai.
A boy is assessed for his mobility.  
A baby with Downs Syndrome is entertained whilst an examination can take place. 
Zaya and a baby boy.
Waiting to be seen. 
Zaya examines a teenage boy with difficulty walking.

Casey encouraging a girl to take up activities such as colouring which would helo her development.

Encouraging children to perform tasks on their own.
Zolbo the speech therapist at work. 

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