I began the music workshops at the Kishti Centre without any verbal introduction, just using song and music as communication as each child/carer entered the room and was seated. At the first session, there was a wide age-range of children and I was a little anxious if it would work within such a range. But actually it proved a gift, where some of the older children were more able to play and maintain a beat on a drum or a tambourine, while I interacted with some of the younger babies.

Stimulating creativity and bonding through music

I trust the music and that a kind of magic is created where the children are ‘held’ by the songs and by the nature of the human voice. I moved around the circle, singing to them, making eye contact, deviating from my song if they made a little noise and copying them to encourage their creativity. I encouraged the mothers to join in, to sing the songs that I sang. I chose a repertoire that is simple, often with few words so that it is easy to mimic and I encouraged the mothers to hold their children close so that they could feel the sound through their bodies (ostephonics – much of what we perceive as ‘hearing’ is actually felt through our bones).

Gradually I added other ‘flavours’ to stimulate the children – a pretty bright bell sound that they can ring themselves, or the soft beat of a drum. They would stretch out and feel the drum skin and intuitively bang it in time to the music. An egg shaker, small enough for even the littlest child to hold means they could create their own rhythm to accompany the song and promote physical movement.

I encouraged ‘play songs’, where the lyrics promote a combined movement of mother and child – wiggling, lifting up into the air and clapping. I also used a coloured piece of silk material which can be thrown up into the air and then floats down. They all gazed at it and watched it fall and felt the movement of the air. I also used it to create a little intimate space, hiding under it with a child and mother or used it folded as an opaque mask to play ‘peek-a-boo’ from behind.

I asked the mothers about any songs they knew or if they could share with me any words or melodies. We had a volunteer who sang the words ‘Ala megum’ (the lyrics of which I sing at a concert at the conservatoire the next day). She sang a line and we all copied her and the sense of her courage and of the sharing in the room was inspiring. For me, it felt that everyone in the room was included, took part, communicated and shared, and that the music created a focus as well as an atmosphere of creativity and joyfulness.

Music therapy and autism

The sessions at the Autism Centre were equally well supported, despite adverse weather conditions making it difficult for some mums to journey in with their children. Within the two sessions I held, the first began at a cracking pace, led by a young boy whose physical energy and dynamism were to direct the energy of the music I used. We danced, stomped and clapped and the mums and children around the edge of the room joined in and laughed and moved in time to the music. I was grateful for the help of Pam who generated a great energy accompanying the song on a tablac drum. The energetic child in particular was free to move and dance and run in the room without a sense of need to be restrained, and naturally he fell into the beat of the music and expressed himself in his dancing, a huge smile across his face.

Other children joined in the centre of the room, compelled by the rhythm, some clapped and bounced at the sidelines. Some children were more vocal and after hearing my voice felt free to sing their own vocal lines, one boy in particular created soaring melodic lines which we copied and sang back to him. He gained confidence and sang higher and longer more sustained musical melodies, of his own making, moving his body with the shape of the melody. Some children hid behind their mothers, so I offered a percussion instrument in a ‘peek-a-boo’ style, to give a sense of play and they would leap forward to bash the instrument and go back again.

One child sat on my lap facing me and held my head between his hands, gazing into my eyes as I sang. He sat there for several minutes with this incredible eye contact. He would look at my mouth then the rest of my body, deciphering where the sound was coming from. He quietly mouthed words, as if to sing himself, and smiled and interacted. Another boy came out from hiding behind his mother, drawn to the hypnotic beat of a song and lay on the floor, rocking in time to the music, his movement becoming slower until he lay still, listening and gently squeezing my fingers to the still quiet beat of the tablac and the soft melody.

At one point, I just sang, and the children listened. Their attention was phenomenal. I sang a whole Italian operatic aria, at full pelt and they were completely held by the music, and watched and listened and when I sang the final note, they knew that the song was finished and suddenly bounced and smiled filled with happiness!

Well supported

The sessions were so well supported by the staff in the centres and the mothers really took part and were supportive and keen to see their child’s development and interaction through the sessions. They intuitively understood the purpose of the sessions and were delighted by their child’s interaction. The sessions for me were a wonderful experience, to play and sing with the children, to help bring out their own creative energies and accompany them in their dancing, singing and expression. To be supported by such compassionate helpers, mothers and staff was inspiring and such a joy.

I look forward to returning and building on the work and more importantly, to help encourage and train others to lead such workshops to build sustainable workshops for children’s creativity that can be enjoyed on a more regular basis.

Written by: Lynsey Docherty, HealthProm consultant music therapist

Mark and I worked together and separately with Saida, Nazira and the rest of the team. Our busy programme covered six days. Our work included direct work with children and parents, meetings with family groups and with local doctors, visits to EC offices, ministries and NGOs.

Visiting the new Autism Centre

We visited the new Autism Centre that grew out of the work of Kishti and opened six months ago. Lola and the parents she works with have created a valuable place for community support and child development.

Delivering teaching, advice and support

Mark conducted teaching sessions in Kishti with doctors and students. It is good that doctors come to Kishti to see the services that we offer. Mark also worked together with the Kishti team to offer advice and support on direct work with children and families.  He visisted the adjacent Baby Home and remarked that the children there are visibly happier and better cared for than a year ago, thanks to a large part to the continuing work of Ricardo from the Kishti team.

Child protection is an integral part of our work; Mark ensured that the Kishti team know what to do when a child appears to have suffered harm.

Zuchra is working to develop a crisis team as a new initiative based in the second Kishti building. She and Jonathan spent time planning how this service should operate.

Working with the government to bring about change

Notwithstanding the two coming years of funding secured from the British Government, Kishti is still not locally commissioned by the Tajik State. This has been an area of intensive work over several years that continued in this visit through meetings with the EC. The Ministry of Labour allows for partnerships with and funding of NGOs and we will be taking part in their commissioning process in the coming months.

At the end of our visit we took part in a strategy meeting about Early Years Support chaired by the Ministry of Health. This is the beginning of a process where the MoH sets and agenda and coordinates the work of the various NGOs and ministries that all contribute to the welfare of children under 5 and their families. The challenge remains of working across administrative and organisational boundaries in Tajikistan for the benefit of this vulnerable group.

Ambassador Trevor Moore kindly welcomed us in the British Embassy and offered helpful insights to guide our continuing negotiations with the Tajik government and the municipality of Dushanbe.

Mark and I thank all those who supported us through our visit.

Written by: Jonathan Watkins, HealthProm consultant social worker. 

Organising this years cycle ride has been one of my main jobs, and as much as I want to beat last year’s fundraising (which we will of course!) I am more thrilled that everyone enjoyed the day. Even though the sun shined down on us, perhaps a little too much(!) everything went very smoothly.

Parents and children at the Kishti Centre made a lovely banner to cheer on the cyclists!

The route we took went through the Lea valley which was gorgeous, it was lovely to see people out on their little boats and barges on the canal. I certainly wished I was swimming as opposed to cycling at times. The ride was raising funds for our project in Tajikistan, helping vulnerable children to stay with their families, keeping them out of institutions and supporting their development. Everyone has done a great job with their fundraising and the money is still coming in, so well done to everyone for all their efforts!

As for me, I am now a student once more, but I will miss the HP office and want to say thank you to everyone there for making me so welcome. I think the near future will be an exciting time for the charity and I would definitely like to stay in touch!

Written by: Christina Jiminez, HealthProm volunteer

Umut was born with cerebral palsy and paralysis of the arms and legs. Umut can’t speak, but she has the support of excellent professionals at our centre.

Umut is a member of the NGO “Association of Parents of Disabled Children” (ARDI) and in partnership with HealthProm we work as a day centre for children with special needs.

Her early life

So a girl was born, and of course the family did not expect that Umut would be different. The family was shocked, but immediately began to act and began to take Umut to various specialists. She was a year old before she was diagnosed with cerebral palsy.

The girl grew up and was passive, closed, did not pay any attention to the outside world. Physical conditions influenced her emotional state. Umut did not respond to the weather, showed no emotion, no interest in cartoons, games, and was only attracted by music.

She was frightened of strangers and would cry. Umut’s state was indeed very difficult. It seemed that there was no hope for her and the chances for improvement were minimal, but luckily our fears were not realised.

It is true what they say – never stop hoping. Magic happens, and my heroine and her wonderful family are a real life example of this.

Finding hope

Umut was frightened at first and did not want to take part at the centre. According to her mother, she was unpredictable and could not sit still the whole lesson. She would tire quickly. However, Claudia at the centre stimulated the interest of the child to learn and established personal contact with sweet gifts and good relations.

Success came quickly. Umut was filled with trust and sympathy for her teacher.

Surprisingly, her mother, Kauhar, saw changes in Umut after just 2-3 sessions. Her daughter began to show interest in the subjects, was courteous and began to communicate with people. Mum Kauhar said that little Umut had became more sociable and attentive to the processes going on around her. She shows interest in books, toys, cartoons and reacts to the weather.

She is beginning to get used to people. Two weeks ago she began to attend group sessions at the day centre. Mum Kauhar shared with me a good example of Umut’s achievements: at first she cried and cried when she was taken away from the day centre. She was afraid of the minibus and unknown people, but now when ARDI’s red car comes she gets excited.

Her mother was glad that her daughter in her absence did not cry when the car came, it may be due to the fact that she saw her teacher Torobekovu Saltanat. However, this is not the only reason Umut is already accustomed to waiting for a red car: she knows that she goes to school and there she can communicate with children who also visit the day centre.

Hopes for the future

Mum Kauhar wants her to study more and more to increase Umut’s success. The problem is that there are not enough good specialists, such as psychologists, masseurs, therapists and rehabilitation specialists. Umut’s mother really hopes the day centre will be able to continue and, like all parents, looks forward to continuing the project:

“Our children need the continuation and expansion of the day care centre, if it does not always operate, our children will lose their newly acquired skills. Children need constant support and continuous work with them. If the day centre will continue to operate and expand their capabilities, our children receive the necessary development for their future lives! ”

But the most surprising thing is that psychologists have been astonished by the achievements of our little heroine. They did not expect such good results.

We also, like the parents, believe that the day centre, as well as the activities of ARDI, will continue to flourish and continue to bring tangible results to the lives of children with special needs and their families.

We all believe that this is not the limit and will be the continuation of the story because we look forward to further successes for Umut and all our children!

We thank all those who help children to reach such heights, and help them have a happy future!

Written by: Seynep Dyykanbaeva, The Association of Parents of Disabled Children.

The four most powerful systems will go to the three clinics in the district with which the project now works, and also to the project building. The rest will be given to heads of village safe motherhood groups and men’s groups.

For the first time village women will be able to use the Indian sewing machines we provided and children will be able to do school homework without the harmful effects and cost of kerosene lamps. These units can also charge their mobile phones.

Repairing autoclave in hospital

We are delighted that the local Afghan trader found by Hussain Ali has shipped these units to Mazar from China for only $78, avoiding all the delays and time wasting caused by corrupt customs officers when we imported medical equipment last year.

Last month the hospital’s maternity department asked us to provide a new autoclave to replace one which had broken down. We treated this as an SOS as the department was carrying out about ten operations a day with unsterile instruments. We located the manufacturer of the autoclave in China, but they could not provide parts. Meanwhile Hussain Ali located the faulty part in Mazar and found a mechanic to fit it, so saving $1,200 for a new autoclave.


Written by: Dr Stewart Britten, HealthProm Project Manager – Afghanistan

What was encouraging to see is that in both areas we are creating and strengthening trusting relationships with local people, from mothers with disabled children to public health officials.

The goal of the Mellow Parenting groups is not to treat children or to discuss their illnesses, but to help parents discuss and share their personal experiences and feelings and to learn from each other. An increasing number of women are showing an interest in taking part in the program.

Tanya and I working at the Baby Home

HealthProm is working with its Tajik partners to address the real needs and priorities of families who have children with additional needs. The model is innovative and is leading the way in Early Years care in Tajikistan.

Feedback from the mothers has highlighted the importance of the groups in the support that they provide to them and the positive effects this has had in other aspects of their lives.

Through the project’s partnership with the Ministry of Health, we conducted two seminars for health professionals. The goal was to increase knowledge on the importance of early intervention for child development and also to raise awareness of issues such as autism which is often misunderstood.

Consultations at the baby home attached to the project and with groups of parents were also well received. We addressed practical issues in caring for children with disabilities and highlighted the impact of the work that has been done with these children showing the progress that they have made.

If you would like to see more pictures from the visit, please visit our Flickr page.

Learn more about HealthProm in Tajikistan.

Written by: Svyatoslav Dovbnya & Tatiana Morozova, HealthProm social care consultants

Whilst 78 percent of the population live in villages in Afghanistan, most of the government and NGO activities are concentrated in the cities. They are not sustainable, are top down (do no consult with villagers) and are just a demonstration.

They spend a lot of money training health workers in the cities, but when the health workers are sent out to the villages where there are no facilities, no buildings or equipment for health centers, not enough medicine, no electricity and no running water, the health workers are not able to deliver health services.

This hasn’t helped the negative perception of health workers. That is why Afghanistan has recorded the highest rate of maternal mortality in the world.  The rate of maternal mortality is 1,575 per 100,000 live births and newborn deaths are 220 per 1000 live births. This was recorded in Badakhshan in the north province of Afghanistan in 2010.

HealthProm’s project is fully participatory and bottom up and all of the activities are aimed at being sustainable and to empower the marginalized village men and women to help them to assess their health problems and devise steps to solve them locally.

The main aim of the project is to achieve Millennium Development Goal 5A, that is, the reduction of the maternal mortality rate by three quarters by 2015. We aim to show that this can be done in Afghanistan and how.

The project facilitators  are two couples who are trained in Participatory Methods locally and travel around on motorbikes to the villages.

The facilitators have set up 46 motherhood groups and 20 men support groups (all the village women and men are members of the groups) in 20 villages in Charkent. The heads of the groups participate in a monthly meeting with the project administrator and health centre staff.

During the meetings the heads discuss their health problems with staff to find ways to solve them locally and receive health massages, bearing them to their group members in the villages.

This has helped decrease the negative perception of health workers among the villagers and the villagers to have ownership for the health centre and also the security threat for the health workers is decreased.

Training health workers

To help the health workers to improve their skills and to provide health services for the villagers, HealthProm provides monthly training for them. The trainings are not in a room setting and focus not only on health issues but on their jobs and on behavioral issues (to help the health workers to behave properly with the villagers and to draw the villagers trust). Because most of the health workers are from cities and do not know how to behave with the villagers.

The topic of the trainings are also being selected after joint discussion with health workers, and HealthProm is playing a facilitating role in helping the health worker to recognize their need for training.

Providing CBKs (clean birth kits)

As infection and heat loss are known as major killers of  newborns in Charkent, HealthProm provides every pregnant women with a clean birth kit and baby blanket.  To make it sustainable that the villagers will be able to continue in the future, the heads of motherhood groups are shown how to make clean birth kits from materials found locally. The clean birth kits contain:

1- Squares of cloths and plastic sheets
2- A bar of soap
3- A razor blade to cut the umbilical cord
4- Gauze pad
5- An adhesive bandage
6- String to tie the cord

They also make baby blankets out of full-sized blankets.

Emergency Transportation

pregnant Afghan woman helped into car

It is a great challenge for the poor village women in labour to travel on donkeys or horses for 2 to 6 hours to get to the health centre for childbirth, especially in winter when the rough roads are covered with snow or in spring when it is destroyed by floods.

To support the women, HealthProm has provided a vehicle for emergency transportation for women in labour, transferring the women from villages to the health centre and, when it is needed, from the health centre to hospital in Mazar city.

To make it sustainable, HealthProm is working with the villagers to make a low-cost means of transportation that the villagers will be able to use when the project ends.

Written by: Dr. Hussain Ali Jahid, In-country Project Manager – Afghanistan

Before joining ARDI I had not worked for 22 years as my real job was to take care of my disabled child.

In March of 2011, HealthProm organized its second international conference in Bishkek on children with special needs. It has become a large event with many international experts and it is a good chance for exchanging experience, new information and skills, as well as for establishing new contacts.

The overall aim of the conference is to improve the situation for children with special needs and their families in the Kyrgyz Republic and abroad.

ARDI’s participation at the conference made me happy, as our work had been seen and recognized. I believe we have achieved all that we expected of the conference, and even more.

The conference has become useful not only for ARDI but for many parents and our colleagues from local and international organizations. This is one of the fundamental principles of our organization: that only in cooperation we can ensure that our voices and actions are heard and taken into account for improving the lives of not only disabled children but for all the children of Kyrgyzstan.

Since the conference, we have created an informal national network of organizations working on children with special needs (parent-led NGOs and rehabilitation centers) with 10 NGOs from different regions of the country joined by the end of the conference. ARDI will be a central point of the network.

At the conference we were able to show our work with disabled children that visit the day care center of the Association. Master-class’ participants – experts and our local organizations gave positive feedback and we exchanged contacts. Right after the conference we arranged for those wishing a study visit to our day care center – these were colleagues from Tajikistan, local NGOs from Osh region. I was thrilled that they had seen and recognized our work. And we were able to prove that we can work with and develop children with severe disabilities on an individual basis; we have the technique, skills, systematic approach and experience in organizing and running a day center.

Participants from Kazakhstan asked us: “Your approach is unique, can you teach our staff how to use the “Board Maker” program (a computer program for making individual illustrated books for children’s development), if we invite you?” We have agreed to write a joint training project.

Director of the rehabilitation center “Umut-Nadezhda” B. Sherllike admitted: “The main thing that you have is your approach of developing children with special needs, which is not developed in our country. You have to develop and officially approve this methodology! ”

After the conference the first thing we started is to develop our own methodology of working with children special needs.

Seynep Dyykanbaeva, our PR manager is a member of post-conference working group which is working on developing recommendations for the government agencies. They should be sent out by the end of March.

We are also developing regulations for the National Network of the parent-led organizations.

We have agreed with the Kyrgyzstan participants that they will share their experience of the visit with their colleagues, as well as will address the issues of disabled children and their parents at a round table with partners and government officials. ARDI will organize a round table in Bishkek, and then hold a press conference to share the results of our efforts on disabled children with public and government agencies.

We express our deepest gratitude to HealthProm for supporting this unique international conference, the results of which we already see.

“Is it better to ask for permission or forgiveness?” was the question we asked ourselves in the arrivals hall.  In our bag were 3500 tablets of an anti-convulsant destined for an internat (children’s home) close to Bishkek in Kyrgyzstan.

Also in our bag were several letters in Russian (all with essential and impressive  looking official stamps) explaining our consignment and its justification.  Unfortunately there was no guarantee the young border guards could read Russian and our combined spoken Russian and English would struggle to get past, “Dva piva pazhalusta” or, “Two beers please”.

Since nobody looked very interested at four o’clock in the morning the decision made was to rely upon forgiveness. We applied our most nonchalant expressions and strolled through to the scrum of waiting relatives, taxi drivers and hangers on thronging the airport concourse.

A few hours later we were once again wandering around Bishkek slightly disoriented by the contrast between the angled hardness of the Soviet architecture and the rounded softness of the mongoloid features of most of the people.  Kyrgyzstan is a small mountainous country caught between Kazakhstan and China, artificially created by the Russians from the territories of nomadic tribes in the time of Stalin.  It sits astride several strands of the Silk Road but no longer sees much in the way of through trade.  The country’s economy is in decline with the gross domestic product more than halving in the 1990’s and Kyrgyzstan now ranks 141st in the world list of economies.  The average wage is less than $100 US per month and 40% of the population live below the poverty line.

The aim of our trip was to try and improve the lives of children with disability both through working with families and also within the internat.  For many children, once a disability is confirmed they are given up by the families into the care of the state.  This means living in an internat with around 200 other children aged from a few months to 18 years.  Facilities are best described as sparse with few soft furnishings and nothing constructive for children to do.  A mixture of disabling conditions affect the children and even a simple case of epilepsy can be sufficient to cause a child to be
given up.  There is little formal education and little prospect of ever leaving institutional care.

HealthProm’s approach is to try and tackle the problem directly but more importantly to try and prevent families feeling that they must give their children up by improving their knowledge and confidence and altering the attitude of local professionals.

Within the internat we bring a practical solution to the problem of epilepsy for some of the children.  The stark reality that the cost of a year’s treatment for one child exceeds the average wage was sufficient to inspire our minor act of cross border concealment.  This and the offer to teach staff about the management of epileptic seizures provided a route into the once closed institution.  Last year we asked and were denied permission to look around some areas of the internat – this year we were welcomed to all rooms and encouraged to find fresh paint, names on doors and a remarkable absence of the aroma of urine.  £1800 pays for 30 children to go on holiday to an alpine lake for a week, comparing favourably with our last family ski trip.

Outside of the internat we are working with parents groups to bring about changes that will reduce the numbers of children entering.  This is achieved by practical measures such as assisting with the provision of day centres and buses that allow children to be brought to the centres or alternatively workers to travel out to isolated families.  We are assisting with the production of information leaflets and booklets that guide parents where to go for help and give them some pointers of what they should be asking for when they get there.

The foundation of the work is achieved through teaching and training.  Again we tread the line of seeking permission or asking forgiveness.  Permission is sought to explore the painful realities of being the parent of a disabled child shunned by the rest of the village or being an overwhelmed professional in a system left shattered and barely functioning by a lack of money and an exodus of colleagues to Russia where conditions and pay are better.  Forgiveness is required when the challenge to the status quo, emphasis on the rights of children and zero tolerance of child abuse proves overly threatening to parents and professionals alike.  Slowly, and after repeated visits, we are seeing change with parents reporting more support in the tasks of looking after their children at home and professionals speaking with passion about their role as advocates for children and their parents.  There are concrete examples of permission being sought to do things differently and forgiveness for occasions when rules have been flouted for the good of a child.

At the end of the week we find ourselves in a meadow in the mountains preparing to enjoy a couple of days hiking and camping.  In the meadow is the summer home of a family – two yurts and a miscellany of tethered livestock.  Around us, at a careful distance, an 8 year old boy rides his horse.  After a few minutes of communication solely through the lingua franca of smiles and nods we are granted a closer inspection of the horse.  A few minutes later we take the decision that since we lack the language to ask permission we will rely on forgiveness for giving him a chocolate bar.  It is taken happily, the horse tied up with exaggerated care and the chocolate taken into the yurt for mum’s admiration. Once again a readiness to be contrite appears to have been the correct decision in Kyrgyzstan.

Written by: Dr Mark Hunter, HealthProm Consultant Paediatrician

(This article was first published in The Tribe at the University of St Andrews, Summer 2010)

HealthProm’s project with its partners, Shoola-Kol, welcomes disabled children and aims to boost their confidence levels, take them away from what is often a difficult everyday life and get them to interact with other children.

The microbus bought by Healthprom is a pivotal part of the Bokonbaevo project. It picks up members of staff, takingthem to the office before departing to pick up 10 to 15 children between 9 and 11 am in the Bokonbaevo neighbourhood (between Bokonbaevo and Tokt Kul) and driving them to the centre, located in the school, where an empty room is divided into two: play area and classroom.

Different activities are provided for the children by teacher Kiall (her assistant Chinara was off during my visit but is usually there to help): copying letters, painting, clay work… A music teacher comes once a week and plays songs to which the children dance and sing along to. They are fed lunch in the next door dining room: chai, bread with chocolate spread and a main dish before playing with a large number of different toys given by Healthprom. After 2 or 3 hours of such activities, they are driven home between 2 and 3pm. This routine occurs Monday, Tuesday and Wednesday, and reports on each child are written in the office on Friday.

On Thursday, the microbus drives Kiall and Chinara (a primary school teacher who has had training in special needs teaching) to isolated families who have disabled children who cannot attend the project. The first family we visited had a 10 year old daughter in a wheelchair with mental retardation. It is clear that this child is not making any progress. She had a rash around her mouth, presumably due to lack of hygiene and sun. She is incontinent and nappies cannot be used both for financial reasons and because she takes them off. She is fascinated by the sound and feel of a plastic bag brought to her but she is unable to play with a stacking rings toy.

The second family we visited had a 4 year old son with similar disabilities to the above. However, it seemed clear that the family provided stronger support, toys were brought out, he was clean and had sisters and a brother who played with him. He showed progress and could walk.

In the third family, the son had epilepsy. The parents were away, and the child could not be approached because our presence might bring on an attack which, I was told, happen up to five times a day and are precipitated by nervousness or excitation.

Due to the rain from the day before, the microbus could not get to other families because the road conditions were too bad, but there are twenty such families in the area. These home visits to isolated families were not originally part of the project, but were added to provide help to more disabled children.