Sunday, April 15, 2012
Although the Yellow House website (www.yellowhousechildrens.org) has become our main place for posting information online; informal thinking and reading and writing about issues of disability and Kenya and children and access continues. I have posted 2 recent "journal type" narratives written by Martin Nafukho, my wonderful colleague in Mumias. Martin's writing shed light onto the local issues of service provision in the disability sector. Beyond the rhetoric of large non for profit organizations, Martin's writings allow readers a glimpse into the complexities, frustrations and joys of work on the ground when resources are limited and local attitudes, fear and lack of awareness about disability set the tone for the lives of many of these children.
I thought I was strong! Not anymore
Martin Nafukho
Friday 13th April 2012.
It has been another happy week, and lots good things have happened ! Another occupational therapy student from Australia has joined our team on Placement. She got the nudge to come after reading an article by a peer that visited in 2009. The article spoke of an enriching experience of practice where you have to think outside the box to solve a myriad problems of health care provision in Kenya.
The week truly reflected the sentiment of Easter: renewed faith. The student is here and the rains have come to chase away the drought that seemed to extend beyond the time. The student was accompanied by her mother, a nurse specializing in epilepsy and movement disorders, added new impetus to our efforts of serving children with disabilities. Because of a looming airport strike the student’s mother had to cut short her stay to two days , but as a result of the limited time with us she offered to sponsor a child with a club foot, while her friend back in Australia committed to support a child Evan, who has had difficult raising boarding fee for basic primary education because the nearest school from which he could access free education had refused to accept him because of his lack of functional arms. Another burden carried off the shoulder of EARC and a poor father by a Yellow house friend.
The parent support group that has been making beaded products were also left smiling all the way to the bank as payment was received for the necklaces they recently completed. So far the group boasts sales of $900 after its inception just less than 5 months ago, not bad when you consider that many of these families still live on less that $1 a day, making payment for medical services and therapy for their special needs children near impossible.
Another surprise of Easter – we have finally managed to get 18 refurbished lap tops and the necessary accessories to Kenya. Unfortunately, they remain with FedEx as we look for the funds to pay the import taxes.
Fast forward to today and here we have Sylvia, the little angel who has been in Australia recently for extensive surgery for severe burn contractures which are the result of an accident she had 7 years ago. While she was recuperating she had been given this wonderful wheel chair she has not used since she came back as she has been using an artificial leg to get around. Sylvia and her family have known Ladin who has muscular dystrophy and also comes for therapy at the EARC and has been in progressive decline of function since 2008. Ladin is the first born of his teenage mother and despite all the efforts this young mother has been making to see doctors and come for therapy, there has been this fear and inability in all who care for him about his outcome of treatment.
Though Sylvia is not so well beyond wheel chair use as she is still in recovery stage, Sylvia’s family have decided to ease the pain and the struggle they have seen Ladin go through while he tries to get from one place to another and have donated Sylvia’s wheelchair to him.
The struggle to get around has been overwhelming Ladin. He first started to walk on tip toes, falling frequently. When he sought initial help someone thought he had convulsions and put him on anti epileptic medications! He sought another opinion and was put on ‘heat therapy’ twice a week for his weakening limbs. After the recent elections, the bus fares shot up and Ladin gave up the journeys to the general hospital and came to the Education Assessment Resource Center (EARC) in Mumias.
It turns out that we have become the place of last hope, due to the kind of empathy and unlimited support that children tend to be given by staff and volunteers that have been constant since 2009. At the EARC we were able to make a toilet seat for Ladin and another small seat he could use while playing as it had become apparent that he could not get up from floor level to standing position. Ladin’s mother had applied for wheel chair from local organization but it has not come through for over a year. This has restricted Ladin’s attendance at school as he is so heavy and his mother cannot carry him on her back to from school every day. Ladin can crawl around, but as a 10 year old , there are so many places he wishes he could go and so many friends he wants to see. Now this is where I feel courage which seems to fail me as a therapist , yes we know he is just a good child with this terminal thing (Muscular Dystrophy) but when the mother starts to talk about the things her Mumias slum neighbors have done to her boy , I see a tear dancing in her eye despite the buibui she is wearing. She talks about occasions neighbors have literally shut their doors and snatched away their children whenever Ladin happened by crawling to his friends. Just to play and be happy with them, to be with friends he has grown up with and gone to school with in his better days. They are fearful of his disability, fearful of this crawling boy they don’t understand, fearful of his illness. He has not been “sick” or hospitalized yet he seems to be weakening day by day.
It is at this point that my tear shows up too in my eye, here is a whole homogenous community casting aside their own. Except for Sylvia and her family who understand the heartache of a child with physical disabilities. Sylvia and her family know the day her artificial limb will have a problem she too will experience restricted movement. It has only been a few months since her surgery.
At eight years old, Sylvia spent many months curled up her in hut with flies as her friends, school completely inaccessible. “While I can still walk please accept my precious little wheel chair” Sylvia says to Ladin. “It is all my family and I can do to atone for the community sin of rejection to you because of disability.” At this moment I hide behind my camera pretending to be taking a photo, as Francis, Sylvia’s father goes through the motion of explaining how this wheel chair works. But behind the lens I am as helpless, I am not strong like Sylvia and her parents , I am not strong like Ladin’s mother to live in such neighborhood and see my child crawl back to me in tears and shame because his friends’ mothers shooed him away and shut their doors to keep him out and away from them.
Martin Nafukho
Friday 13th April 2012.
It has been another happy week, and lots good things have happened ! Another occupational therapy student from Australia has joined our team on Placement. She got the nudge to come after reading an article by a peer that visited in 2009. The article spoke of an enriching experience of practice where you have to think outside the box to solve a myriad problems of health care provision in Kenya.
The week truly reflected the sentiment of Easter: renewed faith. The student is here and the rains have come to chase away the drought that seemed to extend beyond the time. The student was accompanied by her mother, a nurse specializing in epilepsy and movement disorders, added new impetus to our efforts of serving children with disabilities. Because of a looming airport strike the student’s mother had to cut short her stay to two days , but as a result of the limited time with us she offered to sponsor a child with a club foot, while her friend back in Australia committed to support a child Evan, who has had difficult raising boarding fee for basic primary education because the nearest school from which he could access free education had refused to accept him because of his lack of functional arms. Another burden carried off the shoulder of EARC and a poor father by a Yellow house friend.
The parent support group that has been making beaded products were also left smiling all the way to the bank as payment was received for the necklaces they recently completed. So far the group boasts sales of $900 after its inception just less than 5 months ago, not bad when you consider that many of these families still live on less that $1 a day, making payment for medical services and therapy for their special needs children near impossible.
Another surprise of Easter – we have finally managed to get 18 refurbished lap tops and the necessary accessories to Kenya. Unfortunately, they remain with FedEx as we look for the funds to pay the import taxes.
Fast forward to today and here we have Sylvia, the little angel who has been in Australia recently for extensive surgery for severe burn contractures which are the result of an accident she had 7 years ago. While she was recuperating she had been given this wonderful wheel chair she has not used since she came back as she has been using an artificial leg to get around. Sylvia and her family have known Ladin who has muscular dystrophy and also comes for therapy at the EARC and has been in progressive decline of function since 2008. Ladin is the first born of his teenage mother and despite all the efforts this young mother has been making to see doctors and come for therapy, there has been this fear and inability in all who care for him about his outcome of treatment.
Though Sylvia is not so well beyond wheel chair use as she is still in recovery stage, Sylvia’s family have decided to ease the pain and the struggle they have seen Ladin go through while he tries to get from one place to another and have donated Sylvia’s wheelchair to him.
The struggle to get around has been overwhelming Ladin. He first started to walk on tip toes, falling frequently. When he sought initial help someone thought he had convulsions and put him on anti epileptic medications! He sought another opinion and was put on ‘heat therapy’ twice a week for his weakening limbs. After the recent elections, the bus fares shot up and Ladin gave up the journeys to the general hospital and came to the Education Assessment Resource Center (EARC) in Mumias.
It turns out that we have become the place of last hope, due to the kind of empathy and unlimited support that children tend to be given by staff and volunteers that have been constant since 2009. At the EARC we were able to make a toilet seat for Ladin and another small seat he could use while playing as it had become apparent that he could not get up from floor level to standing position. Ladin’s mother had applied for wheel chair from local organization but it has not come through for over a year. This has restricted Ladin’s attendance at school as he is so heavy and his mother cannot carry him on her back to from school every day. Ladin can crawl around, but as a 10 year old , there are so many places he wishes he could go and so many friends he wants to see. Now this is where I feel courage which seems to fail me as a therapist , yes we know he is just a good child with this terminal thing (Muscular Dystrophy) but when the mother starts to talk about the things her Mumias slum neighbors have done to her boy , I see a tear dancing in her eye despite the buibui she is wearing. She talks about occasions neighbors have literally shut their doors and snatched away their children whenever Ladin happened by crawling to his friends. Just to play and be happy with them, to be with friends he has grown up with and gone to school with in his better days. They are fearful of his disability, fearful of this crawling boy they don’t understand, fearful of his illness. He has not been “sick” or hospitalized yet he seems to be weakening day by day.
It is at this point that my tear shows up too in my eye, here is a whole homogenous community casting aside their own. Except for Sylvia and her family who understand the heartache of a child with physical disabilities. Sylvia and her family know the day her artificial limb will have a problem she too will experience restricted movement. It has only been a few months since her surgery.
At eight years old, Sylvia spent many months curled up her in hut with flies as her friends, school completely inaccessible. “While I can still walk please accept my precious little wheel chair” Sylvia says to Ladin. “It is all my family and I can do to atone for the community sin of rejection to you because of disability.” At this moment I hide behind my camera pretending to be taking a photo, as Francis, Sylvia’s father goes through the motion of explaining how this wheel chair works. But behind the lens I am as helpless, I am not strong like Sylvia and her parents , I am not strong like Ladin’s mother to live in such neighborhood and see my child crawl back to me in tears and shame because his friends’ mothers shooed him away and shut their doors to keep him out and away from them.
A Day in the Life
By Martin Nafukho ,
Occupational Therapist
Education Assessment Resource Centre, Mumias
It is Friday March 30th, 2012.
The night before has been hot and still with stars ablaze in the dark. I had been out many times to watch the skies for any signs of rain; the weather man predicted it would be pouring by now. It has been an unusual year for a rural community which is heavily dependent on Mother Nature for survival. The rains that form the main stay of farming in this part of the world have delayed, and the weatherman despite his advice to brace for floods by mid-month has been wrong again. He is now saying there will be no rains after all.
The new moon is already 4 days in the sky adding to the light of the stars. As I stand I can hear the quiet hum of the sugar factory. The quiet is broken by a cacophony of sounds that once kept an American volunteer awake on her first night in Mumias. These bats make a sounds that led her to wonder why someone was ringing bells all night. The hyenas that used to roam and moan in the nights are no more, just as our cows will be if we do not get any rains soon.
My day starts at 5.30 am as the children wake up to go to school. I have to be awake too to cuddle call ‘mbembeleza’ the family cow to give us 2 tea cups of milk for our tea. With this we are much better than the urban people who may have the money but the milk from the commercial dairy has disappeared from the shops. I think the prolonged dry season has not only affected the planting, there is no grass for the animals in commercial farms. I soon get my cup of tea and by eight o’clock I am nearing my work place, the Education Assessment Resource Center (EARC).
The last two days I have been away on integrated supervision encouraging our colleagues at health centers and dispensaries to forget the recent threat by the health minister to sack them after striking for appalling work conditions and do the best in spite of the deficiencies of the system they work in. As an occupational therapist and a community health worker it is never easy to plan my work day ahead of time. Rarely will I get a proper referral from the doctor on what to do with the clients who pass through my place of work.
At nine o’clock on this morning, I get a call from a special needs teacher that a colleague recently had a bad motorcycle accident that left them with a compound fracture of right proximal tibia. On February 14th his fracture was fixed by plates and his doctor advised him to see the paramedic to make a back slab, but when he went to the paramedic they said they had no plaster of Paris. As the teacher had no more money left to buy the plaster of Paris needed, he just went home. The next time he went back they were on strike. He then called the doctor who told him to find a knee brace. At the chemist it was going for ksh 3000 (around $40), a price still out of reach. He had a doctor’s appointment scheduled but according to him the doctor had said he will chase him like a dog if he showed up without a brace so he didn’t go. From my examination the right knee had obviously deviated laterally and without a brace, all the plates will soon be of no value.
Coming to see us at a centre for children with disabilities was a last resort. He will hear nothing about us being a pediatric clinic only. He begged for help and though it was a day we were planning to go out for community outreach, his plea made us reschedule. There had been some small sized knee braces once donated by one of the Yellow house speech volunteers. We find that volunteers often come with an assortment of materials after asking around their places of work for supplies that are lying around unused. Though we have had this brace for a year, today it has its purpose. Although small, it is all we have and it is better than nothing.
After we are done with him, the mobile clinic vehicle belonging to the Kenya Association of the Physically Disabled arrives from Busia, 35 km away. Today we are going south of Mumias another 35 km away to provide follow up to community outreach made earlier this month. It will be another 40 minutes before we reach our destination, the community health workers have been calling incessantly to confirm if we shall be there. By noon we arrive at the first point, Bukaya Health Center. There is a 15 year old with epilepsy from a nearby school and a 7 year old boy born without upper limbs. The parents of the girl reveal that at one time she used get medication for her epilepsy here at the health center but lately the medicines have not been available. When they heard a team was coming they thought they might get some, but they prepare to leave disappointed. We ask the nurse to counsel them and we refer them to an epilepsy clinic at St Mary hospital.
The boy we have been seeing since he was one month old. He has been referred to a special boarding school, because the local schools rejected him as he has no hands. His father however does not have the 15000 (~$200) for boarding fees. We think the local education office, has probably not looked at the EARC report we wrote when the family came to see us initially. We promise to follow up with the local constituency or social development fund to see what can be done.
At this time I start to feel very tired, thinking of Africa my mother land, so much hope in its people so little done to help. It is now 1pm and the physiotherapist , an orthopedic tech volunteer and myself, who make up today’s mobile team move to another station. Some clients got tired and left but there are still children and their parents still waiting.
There is also a five year old girl who cries the whole night according to maternal report. She presents with communication difficulties. Apparently she had malaria resulting in convulsions 3 years ago and the problem has been ongoing since. We agree that the family can come with us in vehicle today so we can take them to a pediatrician, but it is getting late. They promise that next Wednesday they will come to the EARC so we can help them as we have a visiting speech therapist volunteer. Another client is 4 year old boy with bilateral club foot who was identified early but after a series of visits to nearest hospital for casting , they gave up the procedure because the paramedic started asking them to buy the plaster . It is now so bad he will need surgery review . This one is lucky, Jess Medland an occupational therapist who knows of us through Yellow House Children’s Services has raised funds to help such cases.
So the day has not been in vain , one among these will live to say something changed. What makes changes happen? Money really. We have the skills, the materials are available, our families just cannot afford them. We need people to commit to help with transportation costs (usually bus fares) and surgeries. The money pays not only for procedures, but for the hope that may have been lost and can be restored for these kids. The hope that there is something better, that people do care.
The nagging thought as we head back to Mumias and Busia at 5pm is what can be done to help people with epilepsy, convulsions in the rural out flung areas, if they will need speech therapy like the 5 year old girl how can she access the EARC services 30 Km away, even if the parent were willing to help ?
My work day draws to a close. More questions than answers, more problems than solutions. I look forward to returning to my family, my home, to the blessings of my small children and their good health.
By Martin Nafukho ,
Occupational Therapist
Education Assessment Resource Centre, Mumias
It is Friday March 30th, 2012.
The night before has been hot and still with stars ablaze in the dark. I had been out many times to watch the skies for any signs of rain; the weather man predicted it would be pouring by now. It has been an unusual year for a rural community which is heavily dependent on Mother Nature for survival. The rains that form the main stay of farming in this part of the world have delayed, and the weatherman despite his advice to brace for floods by mid-month has been wrong again. He is now saying there will be no rains after all.
The new moon is already 4 days in the sky adding to the light of the stars. As I stand I can hear the quiet hum of the sugar factory. The quiet is broken by a cacophony of sounds that once kept an American volunteer awake on her first night in Mumias. These bats make a sounds that led her to wonder why someone was ringing bells all night. The hyenas that used to roam and moan in the nights are no more, just as our cows will be if we do not get any rains soon.
My day starts at 5.30 am as the children wake up to go to school. I have to be awake too to cuddle call ‘mbembeleza’ the family cow to give us 2 tea cups of milk for our tea. With this we are much better than the urban people who may have the money but the milk from the commercial dairy has disappeared from the shops. I think the prolonged dry season has not only affected the planting, there is no grass for the animals in commercial farms. I soon get my cup of tea and by eight o’clock I am nearing my work place, the Education Assessment Resource Center (EARC).
The last two days I have been away on integrated supervision encouraging our colleagues at health centers and dispensaries to forget the recent threat by the health minister to sack them after striking for appalling work conditions and do the best in spite of the deficiencies of the system they work in. As an occupational therapist and a community health worker it is never easy to plan my work day ahead of time. Rarely will I get a proper referral from the doctor on what to do with the clients who pass through my place of work.
At nine o’clock on this morning, I get a call from a special needs teacher that a colleague recently had a bad motorcycle accident that left them with a compound fracture of right proximal tibia. On February 14th his fracture was fixed by plates and his doctor advised him to see the paramedic to make a back slab, but when he went to the paramedic they said they had no plaster of Paris. As the teacher had no more money left to buy the plaster of Paris needed, he just went home. The next time he went back they were on strike. He then called the doctor who told him to find a knee brace. At the chemist it was going for ksh 3000 (around $40), a price still out of reach. He had a doctor’s appointment scheduled but according to him the doctor had said he will chase him like a dog if he showed up without a brace so he didn’t go. From my examination the right knee had obviously deviated laterally and without a brace, all the plates will soon be of no value.
Coming to see us at a centre for children with disabilities was a last resort. He will hear nothing about us being a pediatric clinic only. He begged for help and though it was a day we were planning to go out for community outreach, his plea made us reschedule. There had been some small sized knee braces once donated by one of the Yellow house speech volunteers. We find that volunteers often come with an assortment of materials after asking around their places of work for supplies that are lying around unused. Though we have had this brace for a year, today it has its purpose. Although small, it is all we have and it is better than nothing.
After we are done with him, the mobile clinic vehicle belonging to the Kenya Association of the Physically Disabled arrives from Busia, 35 km away. Today we are going south of Mumias another 35 km away to provide follow up to community outreach made earlier this month. It will be another 40 minutes before we reach our destination, the community health workers have been calling incessantly to confirm if we shall be there. By noon we arrive at the first point, Bukaya Health Center. There is a 15 year old with epilepsy from a nearby school and a 7 year old boy born without upper limbs. The parents of the girl reveal that at one time she used get medication for her epilepsy here at the health center but lately the medicines have not been available. When they heard a team was coming they thought they might get some, but they prepare to leave disappointed. We ask the nurse to counsel them and we refer them to an epilepsy clinic at St Mary hospital.
The boy we have been seeing since he was one month old. He has been referred to a special boarding school, because the local schools rejected him as he has no hands. His father however does not have the 15000 (~$200) for boarding fees. We think the local education office, has probably not looked at the EARC report we wrote when the family came to see us initially. We promise to follow up with the local constituency or social development fund to see what can be done.
At this time I start to feel very tired, thinking of Africa my mother land, so much hope in its people so little done to help. It is now 1pm and the physiotherapist , an orthopedic tech volunteer and myself, who make up today’s mobile team move to another station. Some clients got tired and left but there are still children and their parents still waiting.
There is also a five year old girl who cries the whole night according to maternal report. She presents with communication difficulties. Apparently she had malaria resulting in convulsions 3 years ago and the problem has been ongoing since. We agree that the family can come with us in vehicle today so we can take them to a pediatrician, but it is getting late. They promise that next Wednesday they will come to the EARC so we can help them as we have a visiting speech therapist volunteer. Another client is 4 year old boy with bilateral club foot who was identified early but after a series of visits to nearest hospital for casting , they gave up the procedure because the paramedic started asking them to buy the plaster . It is now so bad he will need surgery review . This one is lucky, Jess Medland an occupational therapist who knows of us through Yellow House Children’s Services has raised funds to help such cases.
So the day has not been in vain , one among these will live to say something changed. What makes changes happen? Money really. We have the skills, the materials are available, our families just cannot afford them. We need people to commit to help with transportation costs (usually bus fares) and surgeries. The money pays not only for procedures, but for the hope that may have been lost and can be restored for these kids. The hope that there is something better, that people do care.
The nagging thought as we head back to Mumias and Busia at 5pm is what can be done to help people with epilepsy, convulsions in the rural out flung areas, if they will need speech therapy like the 5 year old girl how can she access the EARC services 30 Km away, even if the parent were willing to help ?
My work day draws to a close. More questions than answers, more problems than solutions. I look forward to returning to my family, my home, to the blessings of my small children and their good health.
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