Week 8 Blog: No happy endings ? (20/3/16)

When the three children's zimmer frames turn up at the beginning of the week I am thrilled. I know just who will be able to make use of them. I start with Tokiso and Kolosoa. The boys pull themselves up, salute me and make for the door. Kolosoa is out first and rather haphazardly steers himself down the path. Tokiso radiates joy and can't stop himself from laughing. It is a dream come true and I can see he feels ten feet tall. 

We slowly make our way towards the house where they both live.

Tokiso is looking around to see who is watching that he, Tokiso, is walking.

He is actually just dragging his twisted feet along, but it’s the first time he is moving under his own propulsion. It takes eight rests to get to the house, but we make it. "I am training" says Tokiso. He has to take most of his body weight on his arms and its very tiring way for him to walk. We compare biceps. I too have been inadvertently training as I lift hundreds of kilos of children every day, on and off the beds and floor, and in and out of wheelchairs.

Some days I am so tired I can barely walk the half mile up the rough track that leads on to the road. However, with training both myself and the children are getting stronger and better at what we do. The children who come to the play room are all gradually improving their coordination skills and ability to play. It’s such a pleasure watching their small successes.

Training day dawns for the staff and I hope I can give them the knowledge and encouragement to continue the work I have started here. The morning is taken up with nutrition and feeding. I don't think I totally endear myself to the care staff by getting them to feed each other on their backs so they can experience what it feels like and how easy it is to choke. We then go down to the houses to feed the thirteen children that are normally fed on their backs. It takes some time but they are all successfully fed sitting upright. I am really impressed with the staff’s willingness to learn a different way of doing things and so pleased for the children, especially Malefane. He has an enlarged tongue which he struggles to keep in his mouth. The carers normally lie him on his back and make a trough with one hand while they shovel the food into his mouth with a spoon. It's horrific to watch. 

Now he sits upright and, given a little time, can organise his tongue and lips to swallow the food without much spillage. He can't talk, or walk and has problems controlling his movement, but he's smart and has the most charming smile that comes right from the heart. When I pick him to come to the play room he looks at me with a big smile and slowly brings his hand to his chest as if to say "Me? Really?" I don't think anyone has ever chosen Malafane for anything before.

The afternoon session is taken up with a short talk on child development and playing with the children. I feel the day has been a great success. I leave the staff to it, they seem to be having as much fun as the children. It's late afternoon and I make my way to London to buy some beers. I can smell something delicious cooking as I walk back down the road. My nose tracks down a bakery. I end up sitting on the front step drinking beer, with some new found friends, while I wait for some buns to cook. They turn out to be the best buns in the world and it's the perfect end to a perfect day.

On my last day I spend most of the morning in town looking for some further sources of fruit, vegetables and protein to supplement the children's diet. When I get back the school choir has magically appeared and start singing goodbye to me. With the beautiful mountains behind them they sing and dance in the way that only African children can, and I am totally choked up. There are lots of people there I've never even met before and they all line up to give me a hug.

Mamello gives a speech and I am presented with a traditional Basotho hat. I present Mamello with the Welsh flag and try to give a speech in between sobs. The children of Phelisanong have really got to me and I feel very emotional about leaving them. I then go down to the houses to give the children I have been working with sweets. I only have two Welsh wrist bands left so decide to give one to a girl, Masela, and one to a boy, Tokiso, as representatives of the efforts all the children have put in over the last three weeks.

Mamello is translating for me and I see Tokiso's face fall and he starts to cry. He doesn't even want to accept the band I am giving him and won't look at me. Mamello later tells me that when she said I was going he said "No! You are not to say that!" I had told him earlier in the week that I was leaving, but I guess he didn't understand me. I feel wretched and that I've built up his hopes of walking and improving only to pull the rug from beneath him.

I take him to the play room and try and console him with the spaceship we were building the previous day, but he's not interested. He's a small boy with big problems, who had pinned his hopes of a better future on me and I am leaving Phelisanong with his dreams. He eventually stops crying and we go back to the house where I play some music and take some photo's. It's a temporary fix and I know he feels deeply wounded and let down.

I wish I could fix things for him and the rest of the children, but I can't. On Monday I go to another centre for two weeks. I'm leaving my heart with the children at Phelisanong where there are no happy endings, just a continuous struggle for them all. I can only hope that the small seeds I have planted grow and the future might be a little brighter.

Post script:

I posted the above last night. This morning Ma arrived to pick me up for a meeting at Phelisanong before we go back to Maseru. I dash to the Physio room to pick up some paperwork I have left there, and startle with complete surprise. The children are all there in the play room. Tokiso, Lesojane, Lineo, Kolosoa, Malefane, Palesa, Mothimokholo, and more besides. I am overjoyed and kiss them all.

The staff are carrying on without me and as I look out the door Mama Jo is walking up the path, helping Masela use her walking frame. Tokiso gives me a big grin and shows me the flashing light he has found on the space ship. We do some walking and he laughs with the pleasure of his new-found independence. He can carry on without me and so can the staff. Maybe there will be a happy ending after all.

Reflections:

The problems at Phelisanong meant some fundamental changes were needed in the way things were run, together with changes in the attitudes of the staff. When I arrived there I had adopted a pragmatic approach and tried not to be overwhelmed by the enormity of the difficulties I faced. It was obvious with only a maximum of three weeks there, that just doing physiotherapy with some disabled children was not going to make much difference. 

The lack of staff, resources and training meant no one had any time to think about improving the children’s quality of life. Staff were entirely focused on the daily tasks of cleaning and feeding their charges. Once Sentebale had sent the toys, the care staff were able to see that the children were capable of a lot more than sitting on the floor or lying in bed. I didn’t have to worry about physiotherapy exercises. The children were naturally using their muscles to sit or stand upright, in their desire to reach and stretch for the toys. All the staff had to do was supervise the play and put appropriate toys within the children’s reach.  

Getting involved in the problematic area of the children with feeding difficulties was a fearful, and at times, nauseating experience for me. Being covered in Weetabix, pap and dribble was not fun. My early attempts to help at lunch times, made me fully appreciate why the staff found feeding the children on their backs the most practical option. The laws of gravity, swallowing difficulties and the complications of muscle spasms that wracked some of the children’s bodies, made feeding them upright incredibly difficult.

I had no idea how to deal with their swallowing difficulties and could only hope that with some practical experience I would eventually find a way. Each lunch time I had to force myself to go down and help with the feeding. It was not what I wanted to do, which is why I made myself do it. My willingness to be involved went some way in helping to win the staff over in changing their practice of feeding them on their backs.

Training gave the staff the chance to experience how unpleasant it is to be fed on your backs and the practical knowledge of how to feed every child upright. It was encouraging for both myself and the staff, that the centre manager, Mamello, joined us for training and got thoroughly involved. Her leading by example made it more likely that the changes in attitudes and practice would be sustained. Mary told me that I had made more difference in the three weeks I had been there, than a physiotherapist they had once had on placement, who had stayed for two years. Her remark made me feel I had achieved something worthwhile during my short stay.   

By the time I left Phelisanong, I had answered the initial questions I had about the centre when I visited at the beginning of my trip to Lesotho. The children were being fed on their backs due to lack of knowledge and staff shortages. Unlocking the children’s minds and communicating with them, happened as I played with them, became involved in their lives, and got to know them. Playing was also a natural way to help them move, improve their coordination and balance and stretch their muscles. The children weren’t being buried in the garden, the stones marked donations given by people who supported Phelisanong. It had been a steep learning curve, but a very rewarding one.