Week 7 Blog: Small steps (13/3/16)

Phelisanong offers completely different challenges to Saint Angela's and I'm having to think carefully about what I can realistically achieve here. With conditions so basic the care here doesn't get much beyond food and shelter. The children who can’t go to school stay in the house and are left to crawl and roll around on the floor. Those that are unable to move lie in bed looking at the ceiling. Without any stimulation, it’s like their brains stopped developing soon after birth. I know some of them could achieve more, but it will take a lot of input which they are not getting.

Its small steps like getting Lineo to hold a spoon at meal times and patiently guiding it to her lips, instead of her sitting there like a baby bird while the food is put into her mouth. Lineo has Downs syndrome and is very small for her age. She was found malnourished in a remote region being brought up by her grandmother. She has very low muscle tone, but I think could eventually walk given enough encouragement. Already, after a week, she will stand for several minutes against a bed or a chair, before giving a huge sigh and letting her legs collapse under her. She very funny and I think only stands to humour me and is quite happy to have everything done for her. 

In contrast, some of the kids are so desperate to walk their efforts put their bodies into complete spasm, making it even harder for them to achieve any control or balance. I found Kolosoa attempting to use the small pair of crutches I have brought with me to try and walk. Since he has no balance and is unable to straighten his legs he has little chance. Masela is the same and I try and work with them on some sitting balance and coordination skills, like putting a ball in a bucket. Such small gains can make them hugely excited, a disaster for a child like Lesojane whose limbs flail and stiffen on movement. His arms lock out like a fast bowler so when he does manage to get hold of a ball its best to duck quickly.

Another unforeseen problem is their trousers fall down all the time, so once I do get them standing their trousers are in a heap on the floor. That together with all the snot, dribble and occasional wet patch add to all the difficulties, but I find their efforts to succeed totally engaging. To my joy a small consignment of toys has turned up from Sentebale. The children are thrilled and drag themselves towards me begging to come to physiotherapy.

It’s too small a space to take many and I have to leave some behind. I take Kolosoa and Tokiso, who is quite bright and speaks a little English. "Yes, yes, yes", he says and punches the air triumphantly as I wheel him along. He must be the most enthusiastic physiotherapy patient ever.

Next week I must do some more training with staff on nutrition and feeding difficulties. Suddenly within a week I seem to have become an expert on this subject, which is slightly alarming. I will do my best with a little bit of knowledge and common sense. There are thirteen children here that are being fed on their backs, which is unacceptable for several reasons, but principally due to the danger of choking.

My aim is to change the meal culture of the house mothers and help them to feed the children sitting upright. To my surprise I managed to do it reasonably successfully when I assessed these children last Friday, so bring on the Weetabix. I never thought I'd be saying that after my first efforts to feed these children, but sometimes a lot can change in a week :)