The 'miracle' that is Maurine

I wrote about a young girl last year called Maurine who, due to poor/mis-treatment of meningitis, had been in an almost vegetative state for 5 years. David and I had taken her to hospital to see if anything could be done for her, and unfortunately we were told that she could have a CT scan, and possibly remove fluid on her brain, but that it wouldn’t make any difference to her quality of life... And, the reality was, we were waiting for her to die.

When I came back to work after being off for a few weeks over Christmas I’d noticed that Maurine was much more alert than she had been previously. Although, no expression, she was now following people around the room with her eyes and seemed more ‘awake’ to the world.

3 weeks ago Maurine spoke for the first time in 5 years.

Last week she was shouting at the Occupational Therapist during her session full sentences in Kiswahili. “I’ll pinch you if you don’t stop!!” “My back hurts the most”...

Last week she asked me my name and could tell me that she was called Maurine. 

She is constantly talking to her mum and being very demanding... We’re all like ‘keep telling us what to do Maurine, keep shouting!’

Maurine has a severe physical disability, and is unable to fully extend her arms – for the last 5 years she has had them curled up to her chest, now she can put her hand out to shake mine as a greeting. 

Never in my short career as a Speech and Language Therapist have I ever come across a recovery like this.

The OT has worked in this field for over 20 years, and has never come across a recovery like this.

And the best thing is... Maurine has told us what school she wants to go to. And more than likely, she’ll go there.

It's all become very 'normal' here....

I was asked the other day why I hadn't written blog for a couple of weeks, and I was like, I don't really have anything to write about. It's a very strange feeling when working with pretty much no resources, with some of the poorest people in the world, with the most complex difficulties/disabilities, suddenly becomes.... Normal...

I had a really interesting meeting this morning with Dr. Fred from Kima Hospital in Emuhya about how we can start up the epilepsy clinic at the EARC again. It used to run really successfully, not only providing people in the local community with a free service of treatment and review, but also offering really affordable prices for medicine that meant everyone could access the treatment they needed. Unfortunately, corruption and greed got in the way of it continuing, but there is such a need here I have decided to use £100 of the money that was kindly donated by my friends and family before coming out here to start up the clinic again. Far too many of the children I assess have undiagnosed epilepsy so any SLT intervention is pointless, if every day they are having seizures, every day they are likely to regress in their abilities. Like all disabilites here there is a huge stigma attached to people with epilepsy, so much so I have even met a family whose son eats from different utensils than them incase they 'catch' it. Not only will the clinic treat the children and adults in the community, but through two amazing volunteers that do outreach work through the EARC, awareness will continue to be raised about this difficulty, and therefore reduce the prejudices attached to those who have it.
The other goal of the clinic is to create a small form of sustainable income for the EARC. Profit can be made from selling the drugs, which can be used to pay for the assessment teachers to be able to do their job and follow up on all of the referrals for children with special education needs to schools they make. Statisically most children don't get taken to the school they have been referred to due to many reasons, this money will enable the teachers to find out why, and support them in attending.

I'm being 'business woman extraordinaire' at the mo, trying to formulate a proposed business plan to create a small sustainable business at the EARC to generate income for the long term. Yellow House CBO and the EARC have been relying on Yellow House Children's Services for funding/donations too much, and now, there's no money. We're waiting for Kenyan power to come and disconnect us... Not ideal. So, we're planning on creating a distance learning computer resource. So many teachers and locals are doing distance learning degrees (Wellington being one of them) and they are constantly complaining on how difficult it is researching online because internet cafes charge too much, there's no where for them to just go and use a computer to type up their essay, nor is there anywhere quiet they can sit and study. We have decided to create this 'space' for them... Through the help of a friend's organisation called access:energy we are looking to install solar pannelled electricity, so we never have to worry about the huge bill from Kenyan power, and we have 5 newly refurbished computers coming our way from Yellow House Children's Services... Just got to work out a way of getting the money to get it all up and running.. Look out for our Indiegogo campaign over the next couple of weeks...

Clinically things are going really well. I am focusing on two schools - Madzu Primary School and Kegoye Primary School, both have special educational needs units, both are integrated schools and the teachers are fabulous. I decided to focus on these because the teachers already know how to interact with the kids, and teach at their level. Other schools I have visited haven't even got these skills and I could spend the next 4 months trying to teach them that, not any strategies to support their teaching which I will be able to do at these 2 schools. After discussing this with my colleagues this is a much more benficial approach than me rarely working at any school.
Plus, a welcome to Kegoye which includes me suddenly being called to address and introduce myself to the whole school can't be beaten!!

I also checked on Elizabeth to see how she was doing in her new school and she was already settled. I was welcomed by her big beautiful smile as she proudly showed me her work, introduced me to her friends and modelled her brand new school uniform (thanks to my dear friend and fellow volunteer Skye who let funds to support Elizabeth's mother in buying the things essential for starting school..). Elizabeth's mum and community are so happy with her being accepted into a mainstream school they are starting a support/community based organisation for other families in the community who are suddenly bringing their children with disabilities out of the woodwork no they've seen what can be achieved. An organisation like this could generate income for the whole community... I have promised to help as much as I can in setting it up. Oh, and not forgetting the invite to Elizabeth's Church by her Pastor they can pray with me as thanks...

So yeah, things are ticking along nicely, work is work. Like I said... It's all a bit 'normal' now. I blooming love it though!!!

New Year: New Challenges: New Achievements...

I have been so slack in writing my first post of 2012. There has been so much that has happened over the last month. So much that I am proud of...

I came back to work after an incredible 6 week travel break around East Africa with a friend in tow. It was very surreal to have someone sharing my Kenyan world with, but wonderful to be able to show someone my life here.

The break also did a lot of good in enabling me to be removed from the work I’ve been doing, giving me more time to reflect and decide on how I wanted to use the next 6 months in continuing to create a sustainable speech and language therapy service in Vihiga. That has always, always been my goal: sustainability and the more I’m here, the more I’m reminded of the importance of this.

The other big decision the ‘break’ gave me time to mull over and digest was that I want to stay here. I want to be here as long as possible and as well as my goal of a sustainable service, the next few months are about me working out a way for me to stay...

A dear friend in the UK who has become much more than a zumba instructor of mine, fundraised last year to buy a wonderful little boy I work with called Newton a wheelchair to enable him to attend mainstream school. It was definitely one of my proudest moments as a speech therapist (ironically, not really a lot to do directly with SLT) seeing him in school on his first day! His face said it all!! Not only has this wheelchair enabled Newton to start school, but that school is now inclusive. Inclusive education is the law here, but many schools refuse to have children who have disabilities, even if with a little bit of support they are able to access the curriculum.  Ikumba primary school is now building disabled access ramps and adapting the path to their latrine. Not only these positive changes, but now all of the children and teachers have been “exposed” to a child with disabilities and learn that they are in fact just like them, they will grow up with a positive attitude towards people with disabilities, and therefore slowly start to eradicate the stigmas and prejudices that surround these people. 

Getting children who should be into mainstream school is becoming a bit of a habit of mine now... Elizabeth is a beautiful young girl who has cerebral palsy. Her mum is a real fighter! They came to the EARC to find out which school Elizabeth should be placed in. Immediately it was apparent that this wasn’t the full story, but I carried out an assessment over a couple of sessions to look at Elizabeth’s cognitive abilities and as I expected, she was age appropriate. After chatting with mum about my assessment findings and that I did not believe that Elizabeth should, under any circumstances be placed in a special unit I found out that she had tried to enrol her daughter in her local mainstream school. She had been rejected and almost chased away from the school. Mum wanted Elizabeth to attend this school because it was just near to their house and it would also allow Elizabeth the independence of walking to school on her own/with classmates.

I went with Wellington, Elizabeth, her mum and dragged the Area Education Officer along to the school to discuss it with them. The reason Wellington and I didn’t want to try and place her in an already inclusive mainstream school is because that local school will continue to reject children with disabilities if it’s not addressed now.

Of course everyone was very polite, and after meeting the headteacher in the street after the meeting in the school, it was decided that Elizabeth should of course join the school, nothing was mentioned about the initial rejection (not worth turning people against me when I want to create a positive working relationship with them) and she’s to start school over the next week.

We had our second workshop for teachers in the Vihiga County – went much better than the first one in November: higher attendance, more involvement and ideas generated by the teachers in how to support children in their classrooms with speech and language needs. That’s over 150 teachers trained now in basic SLT awareness and strategies to use in the classroom.

A huge event that happened over the last month was the 4^th East African Speech and Language Therapy Conference in Kampala. It was such a success with attendees from 16 different countries, and something I am so proud to have been involved in. It was a four day conference with presenters from all over the world, including (geek alert. Geek alert) my ‘hero’ of speech therapy Cath Irvine, the co-founder of Intensive Interaction.... and me!!! I co-presented alongside Martin Nafuhko, Occupational Therapist in Mumias about the challenges facing speech and language therapists in western Kenya and what Yellow House is doing to address them. This was our time to showpiece all the hard work that’s been going on over the last couple of years, and specifically now. It was amazing to receive so much positive feedback on the work that we’re doing out here, and it shocked me to realise a couple of things.. 

1.      In Kenya there’s one speech therapist to on average 5 million people (never will I moan about   NHS waiting lists again!)
2. Apart from VSO, Yellow House is the ONLY organisation in East Africa offering a free SLT service.

The next conference is either going to be in Kenya in either September 2013 or January 2014. Either way, I cannot wait to be there!!

‘Placid’ –

I was shocked a couple of weeks ago when a good friend of mine told me I was “too placid”. After looking up a definition of the word, I am so confident in saying that DEFINATELY does not refer to me. For a start, a ‘placid person’ would not have moved to Kenya in the first place. Secondly, there’s no way a ‘placid person’ would last 7 months here, let alone think about all the possible ways to allow her extend her stay...

It’s 100% a man’s world here in Kenya, and Africa. As a mzungu, I immediately get some minor form of respect from the people I meet and work alongside. As a young, unmarried woman that respect is lowered. As a young unmarried woman, doing a job here that does not even exist in the eyes of the government, that respect is lowered even more. As a young, unmarried woman, doing a job here that does not exist and is coming in to various workplaces that 95% of the time is run by men; I have to earn every ounce of respect that I may get. This in turn will mean they invite me into their workplace and allow me to share ideas and knowledge in a way that will hopefully benefit the children they are working with. It has taken 7 months for me as that white, unmarried, young woman with big ideas that means changing a lot of strict, rigid systems here, to earn the respect which will allow me to the job I came here to do – to create a sustainable speech and language therapy service for the Vihiga County. I wouldn’t call that ‘placid’....!!

Winding down...

Just two more days of work left before I have a 6 week break travelling. Very excited about the travels, not only do I see one of my best friends for the first time in over 2 years, but also because I am feeling like I definitely need a break from work!

After the intensity of the last few weeks: fearing for my life, confrontations, making difficult decisions about children’s lives and generally feeling pretty overwhelmed by all things work for a period of time, this last week and a half has been a really positive one. Thank goodness. 

Tony – all’s sorted, ‘agreement’ signed by all parties and he will continue attending an excellent school that is doing wonders for him. Hurrah!!

I am really lucky to work with a beautiful little boy called Newton. Not only am I lucky to work with him, but also his Grandmother. The inner strength this woman has is unreal. Newton is her responsibility after his birth parents ran away from him and the stigma that comes with him. Newton has cerebral palsy, and as a result is significantly physically impaired. However, he’s as bright as a button and is a proper cheeky 6 year old. Newton’s Grandmother brings him every week to our cerebral palsy clinic, carries him for about 6 miles on her back and never does she complain. She treats Newton like a ‘normal’ boy and their relationship is how I wish it would be with his mother.

Anyhoos, Newton should be attending school, so far only special units have accepted him, however we all believed that he should attend a mainstream school because cognitively he is able to access the curriculum. After a lot of discussion with Wellington we decided that a local school called Ikumba Primary would be great for him. I’ve always been impressed with the school and their attitudes when I’ve been in and met them, plus one of the teachers is trained in special educational needs, and sits on the community based organisation (CBO) Yellow House so is very much on the ‘ball’ of inclusion! However, we knew there would be one ‘excuse’ as to why the school would not accept Newton. He didn’t have a wheelchair. Thanks to the fundraising of a friend from the UK, Newton has now been measured for his very own adapted wheelchair so that he can attend school. His face has never looked so proud and excited when we took him to get measured in Kisumu. I wish I’d had my camera... Wellington and I met with the head teacher of Ikumba Primary School, discussed Newton’s strengths and needs and they have agreed to place him there. Even suggesting assigning one of the staff’s latrines to Newton so that a toilet seat the EARC is donating can always be there so he can use the toilet independently!! I was pleasantly shocked when the head teacher agreed; this is inclusion in a way that has never been seen before in Vihiga County. Amazing!!

Newton starts school in January 2012 with a brand new wheelchair. I can’t wait to see him in his school uniform, he will be the proudest and happiest boy in Kenya!!

Wellington is starting his distance learning degree in Special Educational Needs Teaching this month. He has been doing the job he has been doing for the last 15 years, is an amazing assessment teacher and has done an unbelievable amount of advocacy and raising awareness for children and adults with disabilities in Vihiga County. Often supporting them from his own pocket, from which he has very little to give. However, the government has brought in a new policy that to do the job he is doing, he has to have a degree in it. Ridiculous! He’s managed to get a loan to pay for this session. Basically the course is over 2 years and has 3 sessions a year, where he has 3 weeks of intensive lectures per session, and the rest is done independently. It’s how a lot of people here afford to be able to do degrees. Each session, including accommodation and travel (it takes place 6hours away in Eldoret) costs 40,000ksh, about £250.

I have decided to pay for April 2012’s session from some of the money I fundraised before coming out here. This gives Wellington 8 months to find the money to fund the August session. The reason I have decided to use some of the money raised on this is because Wellington is the person who will still be here when I leave. The work he does is beyond his job description, and obviously by working alongside 2 SLTs for over a year will mean that he can continue some of our work when we have left.

I was very lucky to tell Wellington on Monday that a friend of mine has offered to pay for a session in December next year. He doesn’t understand why someone who has never met him wants to help him. I tried to explain that by supporting him doing this degree we will be continuing to support the children we work with in Vihiga. All he could say was that “Kenyans have a long way to go before we are like you...” and then cried – which of course made me blub like a baby!!!

I’m going to wind up there – thank you all so much for continuing to read my ramblings and waffle. I’ll be back on here in January..

MERRY CHRISTMAS AND A HAPPY NEW YEAR!!!

Just to update you on Maurine

David and I took her to the hospital in Kisumu and after much waiting around, and various doctors coming in to the room we were sat in, having a little prod and look in Maurine's eyes we finally got seen to.

Unfortunately we are too late.

The doctor believes she suffered from meningitis 4 years ago and due to the mis-treatment of it, she has ended up in the medical state she's in now. It's been suggested that Maurine has a CT scan in order to determine the severity of the hydrocephalus (fluid on the brain) that she acquired as a result of the meningitis before recommending further treatment to reduce the hydrocephalus. A CT scan here costs 6000ksh (£38), however there is no chance Mum can find this money.
We went to the social services dept at the hospital to see if there could be any financial support offered. Because a CT scan is so expensive, they can't waiver the fee, however will pay 1000ksh towards it if Mum comes with the rest. It's a pay for the treatment first situation here too.

I asked the doctor if she felt having medical treatment would make any differenct at all to the quality of Maurine's life. She said "No".

It's a really difficult situation to find myself in. My heart is saying fund for her to have the CT scan, but my head is saying that 6000ksh can be used to pay for 4 children who attend my cerebral palsy clinic to have adapted chairs made for them which will make eating a safer experience for them, and thus possibly saving there life, as well as making communication a lot easier. Or will part pay for a child to have a wheelchair so that he can attend a mainstream integrated school. And, not only that, but then another 6000ksh will be needed for an operation that will make no difference.

We are speaking to Maurine's Mum next week to tell her that nothing can be done for her daughter. It's a role that shouldn't be mine as a speech therapist. But, it's a role that no one else will take on.

It's all very 'real' here now.

It has been the most stressful and emotional couple of weeks for me since being here. As always, there have been some positives, but unfortunately they have been a little outweighed by the negatives...

I saw my first dead child last week.

Just lying there in the middle of their family’s land, uncovered, with their mother wailing, (a sound that will never leave my head) next to them. I don’t know how they died.  Probably something preventable like malaria or meningitis. Something that, for the average family out here, can’t be treated due to the lack of money to even get to a hospital on time. 

I was on my way to visit Steward (16 year old lad with severe brain damage due to untreated convulsions he had when he was 3 years old...) when I came across the deceased child. When we rang to see if it was still ok for us to do the home visit Steward’s mother said it was fine, but that she had a funeral to attend to that afternoon. I found out the funeral was for her daughter who had died the day before...

Unfortunately doing the ‘right’ thing out here can mean you put yourself in danger. I witnessed some complete unprofessionalism and bullying at work the other week, and did what I would have done anywhere in the world and reported it. Turns out that wasn’t the wisest of ideas as that person ‘knows’ people and the charity organiser was worried I had put myself at risk. So, I had to go to them with my tail between my legs and apologise. Although not what I believed in, the bigger picture is that I want to stay here, I love working and living here and a lot of positive work is being done from me being here. So, all’s well. I am safe.

WE FOUND TONY!!!!

My heart literally melted when I saw him. He’s in school. He’s put on weight. He was wearing the shoes I gave him. He looked like a different child.

We tracked down Grandma again and children’s services asked her to come and see us. Not only did she come, but she came with the good news that Tony had started school in September. Even though she couldn’t afford the school fees, the school accepted him on good faith from the chief of the village. I found out the total cost for sending little Tony to a boarding school that’s specifically for children who are deaf and have special needs - £90. That includes all his clothes, toiletries, towels and bedding for the year. School books and medical care. Madness that something so precious, is so cheap. Yet also, so expensive.

I went to Chekombero school where he is now boarding and met him. Like I said, I could not believe the difference in him. His smile is enough to melt even the hardest of hearts (corny, but true), and that was something I was not blessed to see when I first met him.

I met with the headmistress who is a really lovely lady. Unfortunately we found out through her that when he arrived and she washed him (for the first time in weeks) she found his body was covered in bruises and lashing wounds/scars. He would cry all the time, shy away from any interaction with adults and fight with all his classmates. Now, he laughs, plays and hugs the staff who care and teach him. All this in 6 weeks. Imagine what his life will be like after 6 years of being there...

As a result of the beatings he has received by his Grandmother the headmistress is very concerned about allowing him home for the month of Christmas. I am too. Not only due to that, but because there is no food for him at home. There’s no one who really cares for him at home.

So, there’s a member of staff who has offered to have him come home for Christmas with him and his family. Giving Tony the family life he so desperately deserves.

Thankfully through the generosity of a friend in the UK Tony is now able to attend school for the rest of his life. I can’t wait to watch this boy develop over the next year..

It’s been a good week for appointments, new referrals, assessments and general working fun. I keep having gushing moments where I realise how happy I am here and how sad I am that one day I won’t be working here anymore...

However:

I’m taking a beautiful little girl called Maurine to hospital tomorrow. She’s 9 and when she was 5 she complained of severe headaches and back pain. Got taken to hospital where she was admitted for 2 months. Treated for malaria. No difference made. Over the next 2 years she lost the ability to walk, talk, feed independently, sit, communicate... be. She’s in the worst state I have seen a child out here. Unresponsive to anything. Complete negligence on behalf of all of the medical staff that she has seen over the past 4 years.

David and I are taking her to the hospital in Kisumu in the hope that she can be diagnosed with something. I’ve 2 ideas: meningitis or a progressive brain tumour. But no scan has ever been carried out. What’s maddening is that we know her life could have been completely different if the medical staff had investigated, rather than treated the symptoms. What child loses their ability to speak and walk without alarm bells ringing???