Each time I make the “never forget” list of our travels’ needs, Ziim’s mobile toilet seat, apart from rectal diazepam never fails to make the list. You probably are wondering why. I bet you do not know that it’s not easy to poop while lying down. It is more difficult than sitting on a toilet seat, yet this hard job is what most children with CP do daily, particularly those with severe quadriplegic CP.
Nature made it that we squat to do that all important business. But with modernization, the water system toilet was designed, so we sit, which is close to squatting, allowing gravity to help. Squatting/sitting helps to apply pressure which helps to push out the waste. Lying down does not allow for that. This is worse when wearing a diaper because as you are pushing out, the diaper is pushing in, particularly if you are lying down. Daily, these children void while lying down, as a result, they do not fully empty their wastes. Imagine leaving behind part of your shit each time, gradually you will have a lot of “left over shit” in your rectum. This is one of the things that cause constipation in children with CP. Constipation is such a big issue with the children that it deserves the honour of a separate post 🙂
It is said that knowledge could be burdensome. Because I know the importance of daily bowel movement (BM) or rather the consequences of not doing that, I am burdened with the task of ensuring that BM does not just occur, but occurs properly. Thus apart from working on it with the diet I also work on it with positioning, so I ensure Ziim sits up to poo. As Ziim is yet to sit independently, you probably are wondering how she gets to sits on a toilet seat. But she does…adapted.
At home, we have the oyibo made adapted toilet for individuals like her. It was a gift to us six years ago by a mum with a child with CP, her son used the chair when he was younger and had outgrown it. So over the years, I have been able to “condition” Ziim to sit on the toilet to poop. She has been so conditioned that she hardly do it on her diaper, she seems to have learnt to hold it until she is placed on the toilet. She is “toilet timed” as against toilet trained. We have established a routine. First thing in the morning, I sit her on the toilet, most times she does it, if she fails, after breakfast, I put her back on, in 6 out of seven days, she is likely to do it.
I got a carpenter to construct something similar for the use of other children in the Center. Some children like Precious, though nonverbal has learnt to indicate through body movement when she wants to do the big one and she is helped to the toilet.
You see, apart from the toilet giving a child the benefit of sitting upright to poo, it increases her self-esteem as she is given some privacy. This also is easier on the caregivers as changing poo diaper on a child that is close to being an adult is in no way better than just flushing the toilet. On a personal note, it reduces my anxiety, particularly if we are going out, say for a party, because once she has done it, I won’t be worried about her pooing in the public. Imagine sitting in a party all tushed up, suddenly there is this bad smell and everybody including you are looking for the source, then you realize that it’s emanating from your well dressed fine girl 🙂 It’s not only airplanes and airports that lack adequate toilet facilities for children like Ziim as I said here, most public places hardly make provisions for them, now where do we go to change if such happens.
So you can understand why the toilet makes the priority list when we have to travel. It is an important issue.
The toilet goes with us!