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???

Not a rant in sight..... almost

Crikey, realised I’ve not written one of these for ages... 

Wow, what a busy, productive, fun and encouraging (as well as the usual frustrating) few weeks I’ve had.

I’m now officially an SLT training queen. Our goal for September and October was to train at least 2 teachers from every public primary school in the Vihiga District on the very basics of SLT. As I mentioned in my last post, it was a VERY basic training seminar, just 2 hours where David and I talked about speech and language, the development of communication and the different client groups we work with. The main goal was to find out from the teachers themselves what they wanted further training in, and we did this by asking them to fill in evaluation forms at the end of the sessions.

I met with the Area Education officer (AEO) today to discuss the results from the evaluation forms and to plan future training. It’s awesome how positive and keen he is, makes the whole process a lot easier. We have planned one full days training in November for half of the 60 teachers we’ve trained, and then the other one will take place in January. Annoyingly everything starts shutting down now due to end of year exams and the month off for Christmas, hence why we are splitting it in two. I feel it’s important to run at least one full days training before Christmas because I don’t want the momentum to stop. I keep meeting teachers who I have trained and they are so excited about further training, and are keen for us to come to their schools to support them further.

Not only are we training teachers in the Vihiga District, we have also run the 2 hour workshop in Emuhya, a neighbouring district for 34 teachers, and a full day workshop (with certificates provided!!) for 37 teachers in the Kakamega district. I was told by one lovely teacher that I was ‘empowering them’... bit deep, but I’ll take it!!

David and I have been discussing our role, and more and more it’s clear that not an epic amount of clinical work will be done by us in the time we’re here. However, I am happy with that. We’re not here forever, and who knows when the next SLTs will be in Vihiga, so I’d rather train teachers in strategies to support their learners with communication difficulties, to increase awareness that these children should not be punished for being ‘ignorant, dumb or thick’ and so that when/if the next volunteer comes the district is ready for them...

Talking of training, also now likely to be lecturing (pah!!) for two universities in Kenya: Mt Kenya and Bondo University Collage, who both run teacher training degrees in special educational needs... Very excited about this – fingers crossed it will happen...

Updates –

Tony: I wrote about this special little boy in August who has been abandoned and neglected by all who should be responsible for him. Unfortunately he never came back to the EARC which kept playing on my mind... There’s a student social worker, Francis, on placement at the EARC for 3 months and I set him the challenge of finding Tony. I could give him a name, his father’s name and his village. From that Francis could find out the village chief’s name and once he found him, could find out where Tony lived... Wish it was that easy... The Grandmother who came with Tony no longer cared for him. Not long after he came to clinic she ‘dumped’ him at his paternal grandparents. It’s so difficult not to judge this woman, because I saw for myself that she has very little money to support herself, let alone a child with stigma attached to him. However, he’s just that, a child. Anyway, thankfully Francis found the paternal grandparents and Tony (exactly the same as before, although no shoes in sight so grandma more than likely sold them!!) and requested them to come to the EARC the following week for assistance. Of course, I shouldn’t have been surprised, it was a no show!! Francis rang the grandfather and he said the maternal grandmother had returned for him and had taken him back. No idea why. So now, we’re back on the hunt for Tony again. It’s such a wild goose chase it’s unreal. However, we’ll find him and he’s going to be supported to attend a boarding school for children who are deaf and I have every faith that he will grow and develop so much more...

Tabitha – she’s the 14year old girl who has hearing loss, most likely as a result of malaria/the medication used to treat it. So, David and I ran a one hour seminar for all her teachers (27 turned up!!) to explain her hearing loss, what it means for her and to give really simple strategies on how to support her in the classroom. Wow, what an awesome training session. They were all so responsive, asked a million and one questions, laughed at my jokes (probably out of politeness, but still) and were just so keen to learn more about Tabitha and SLT. Following up after exams in November to check they have put the strategies into place and to catch up with Tabitha. I received a really nice text from the deputy head (oh, that was the other thing, both the headteacher and deputy head attended the seminar – unheard of!!) saying thank you for the training and that she really enjoyed my presentation style and it was a shame I wasn’t a teacher... Before telling me that a (and I quote) “naughty colleague of hers, liked everything about me...!!!” I’m now racking my brains to find out who this dashing young teacher could be!!! J

CP Clinic – THE MUMS ARE FEEDING THEIR CHILDREN APPROPRIATELY!!!! I could have gone round and kissed them all I was so happy!! And, what’s more. It looked so natural, so I think they’re actually doing it all the time rather than just for show for the white lady in town!! We had been providing tea and chapatti to everyone attending, but that was going against everything I had been harping on about to the mums. So we stopped. Instead we’re making and providing uji (weird porridge type thing) that is made to the ideal, safe consistency and we have demonstrated how to feed the child with this. And it’s working!! Hurrah for ‘tough love’...

Normally I have a little rant on here, but this time, apart from the ‘usual’ issues of late seeking of intervention: a 16 year old lad came yesterday who was ‘fine’ until he was 3 years old when he started having seizures that would last for 2-3 days, and these went on for over a year. Afterwards he lost all speech and is massively delayed. Without the joy of technology it’s pretty clear from his presentation that significant brain damage occurred during that period. Yet it’s taken his mother 13years to seek any help!!! Grrrrrrrrr.

The lack of resources in schools and everywhere, distance to all the rural villages which makes some children’s attendance ridiculously poor and stigma, it’s been a really positive few weeks. So, no ranting... Let’s hope it continues.

Bit of a mixed bag..

I’m just back from a few days in Kampala, Uganda. It was the second meeting for setting up the Association of Speech and Language Therapists in East Africa (ASaLTEA) and it went really well. Jon and Stella came too, and I think they quickly picked up that the group of SLT’s in Kampala are a passionate lot that will talk and talk and talk around the one topic for ages without making a decision. However, decisions were made, and on reflection I think a lot of the faffing is due to them being worried that this association’s main aim is to ensure all the governments in East Africa recognise SLT as a profession, so there’s tons of pressure on them to get it right. The voting began to nominate the temporary exec committee who will be in charge of developing the constitution. Hopefully results will be in by the end of next week and the long process can begin.

We also went for a few days because it was my birthday on Tuesday and there was no way I was going to spend it sitting on a bus for 7-8hours! So, I embraced the western-ness of Kampala and really enjoyed proper mint choc chip ice-cream, coffees, cinema and a deeelish Chinese dinner!! Was a really nice way to spend my birthday, and again. Good to get away for a few days as the last couple of weeks have been really busy...

First of all – feedback regarding Marion, the young girl I wrote about in my last blog. Because the cleft lip/palate repair surgery only happens 3-4 times a year it gets booked up fast. Marion has been scheduled in for her cleft palate repair in April next year. I’m going to work alongside her before and after the surgery in order to support her speech development.

It’s been a funny ol’ couple of weeks at work. Our training sessions are going from strength to strength (not to blow my own trumpet!!), but for 2 reasons... David and I have run the same workshop 4x now, so it’s meant we’ve been able to adapt our training methods in order to improve the sessions. We’ve found that the teachers we are training aren’t the most forth-coming with questions/comments: at times it’s definitely been like getting blood from a stone! So we’ve now made it even more interactive and in our last training at Mukuli School we definitely noticed a big difference in the teachers’ attitudes and approaches. The other thing that has changed is that we contact the Area Education Officer (AEO) for him to co-ordinate the teachers. Since doing this, the attendance has doubled. We had 11 at one session, got the AEO involved at that went up to 27!! Plus, the AEO’s have both attended the training themselves which is definitely a novelty...

What’s coming out of the training is that teachers want to have further training, and when we explain that there’s no funding and that all that will be provided is lunch and soda, rather than travel costs, a lot STILL want training!! Downside is, the majority want further training in stammering/dysfluency: an area I have never, ever worked with... best get reading then!!

People are also continuing to be more aware that David and I are here, we’ve had 4 children coming from referrals from local health centres and community hospitals. 4 may not seem many. But to us, it’s HUGE!! The awareness is increasing and the parents are taking on board what we are saying... Lets hope this continues.

Unfortunately not all has been positive this week. Last week was really difficult for me, I am really struggling to keep my ‘professional’ cool in situations when I know I really have to...

1)    The cerebral palsy (CP) clinic is continuing to grow, and parents are now bringing their children to see the speechies, not just the OT. However, some have been coming for the whole 3+ months I have been there and every week I watch the mothers feed their young child with severe physical disabilities chai and chapatti. And, every week I watch some of these children aspirate. Every week I discuss with the mothers the importance of posture, slow feeding and consistency of the foods/drinks in order to try and reduce their child’s aspiration. I am not qualified back in the UK to give this advice. Here, I have to. There’s no one else.

Last week at the clinic the chai and chapatti came round, all the mothers who I have given the above advice to were feeding their child chai from a cup, whilst the child was lying horizontally in their arms... All I could hear in that room (even above the children crying whilst receiving OT) was the sound of children choking and struggling to breath. I literally snapped. Grabbed Wellington and asked him to translate. Went to Mum number 1, her child is called Rebecca who has the most beautiful smile in the world. Every week I have demonstrated safer feeding techniques to Rebecca’s Mum. Obviously it’s not gone in. I told Wellington to ask Mum 1 if she remembered all that we’d spoken about and why. She said she did, whilst moving Rebecca into the ideal feeding position that I’d shown her many times. So I asked Wellington to ask her why she was killing her daughter. I told her that every mouthful was suffocating Rebecca. It may seem harsh, but I’d rather ask that question and insult the mother, than watch Rebecca die.

I then did the same with 2 more mothers. I’m holding a feeding workshop with a couple of mum’s tomorrow, (I started to write this on Thursday evening, it’s now Saturday and of course, the mothers didn’t turn up for the workshop!! SO frustrating!!!) to show them how to thicken fluids with cornflour (thanks Heather for that suggestion) and the safe consistency the uji (porridge) needs to be. Hopefully this works, because it has literally become unbearable every Tuesday to see these children so obviously aspirating...

2)    Hearing a child crying “hapana” (no) between every lashing of the cane. By a teacher. Caning is illegal here. Yet the more I am going into schools, the more I am hearing of it happening, or actually hearing it happen. The irony was, me, Wellington and David were sitting with the headmistress of Muluki School in her office  chatting about how successful the training had been, whilst eating cakes provided by the school. Halfway through eating the cakes I heard sounds I’d never heard before, and hope to God I never hear again: the sound of a child being repeatedly caned and crying “hapana” between each one. I could not believe it. I felt physically sick. I didn’t know what to do. Part of me wanted to run into the room and grab the cane from the ‘teacher’, but I knew that would only cause problems for everyone later on. I outwardly flinched with every strike, I couldn’t not, and a teacher that was with us went through and told the teacher to stop.

I went to visit a referral from Jon called Tabatha at her school. Tabatha lost some of her hearing 4 years ago when she had malaria. It’s not known if the hearing loss is due to the malaria itself or a type of medication used out here called quinine which is believed to have side effects of hearing loss. Tabatha is 14 and is so bright. She attends a private mainstream girl’s school, however her grades are slipping. She feels it’s because her hearing loss has become worse over the last couple of years, however due to the type of loss that she has, it’s more likely that she’s more aware of the hearing loss than she was at 10years as more demands are being placed on her in school. Tabatha told David and I that she isn’t sure if any of her teachers are aware of her hearing loss, or that if they are, it isn’t making any difference to how she’s being taught. Tabatha became really emotional during our chat, and after a while it became clear that there is one particular teacher that is repeatedly ‘punishing’ her for getting answers wrong in class, or when she asks for help. I asked her what she meant by ‘punishing’ and she said he teased her in front of other children and caned her most days... These are meant to be teachers that are doing all this ‘punishing!!’ I can’t describe the frustration and anger that builds in me when I hear all of this...

Anyway, we spoke to the deputy head and her class teacher about her hearing loss and gave them some basic strategies to support her learning. We are arranging to go back into the school in the next 2 weeks to talk to all of the teachers that teach Tabatha about her hearing loss and provide them with quick and easy ways to support her. I was really impressed with the deputy head – she has asked for further training for her staff about SLT, so David and I will be developing a new training programme specifically for secondary education.

Talking of training – I’m going to be lecturing for Mount Kenya University on their degree in Special Needs Education!! Meeting with the co-ordinator of the course to discuss when, but it’s very exciting! Things are happening...