Poo Taboo

This morning I am going to write about a subject that we do not normally like to talk about : Incontinence. Joshua has never achieved the skill of taking himself to the toilet, and so he lives in pads and has never known anything else. We tried with a potty at the same time as most toddlers do, but with no success. Our Portage worker told me that he did not have the language skills to achieve toilet training at that stage and that I should stop torturing myself trying, which I did. But his language improved when he was 4 and so we tried again : We used to talk about ‘wee’ and ‘poo’ a lot back then and I can clearly remember Joshua’s first wee on the toilet – I rang Granny to tell her the good news and she even sent him a congratulations card! We used the reward system and at that time, he adored candles and so if he would have a wee in the loo, then he would get to blow a candle out and cheer. It worked for a while and we were making real progress.

But then, the dreaded epilepsy took hold of our son and all learning stopped and most of his language ability was stolen away, it was heart breaking. We had enough on our plates to deal with, just managing these alien seizures, without trying to blow out candles on the toilet and all of our focus shifted. To be honest, I have hardly tried toilet training since. We occasionally flirt with the idea and I went through a stage of encouraging him to hover over the toilet, naked, before a bath, but it make him cross much of the time and so I backed off. I resigned myself to the fact that I will be changing nappies for the rest of my life. We have got a good changing techinique as now that he is no longer a toddler, he stands up while he is changed and rather like a Formula 1 Pitstop, I have over the years got adept and speedy with changing pads.

Joshua is not able to tell you when he is wet and ready for changing but he mostly knows when he has done a number 2. He will stand up from where he is to perform the deed and either take himself away or stare intensely while he completes the job. I am blessed with an inherited poor sense of smell, which has its benefits, so I am usually the last to smell if there is a problem that needs addressing. I can be too eager to clean him up and change him, before he has finished, making the task twice as long. If he has been in another room, he will often come to me to be changed, bringing with him a distinctive aroma.

I send spare trousers to daycare, as I used to do at school, in case his pad should leak. I can recall a TA at school handing me a bag of wet trousers at the end of a school day telling me that he had had an ‘accident’. But for Joshua this is normal behaviour, he has never known any other way and so it is not an accident but the products have failed him. We have thicker, stronger pads for use overnight as when he became a teenager, the volume of urine produced overnight increased and part of the problem of the cheap nappies that we were being asked to use, was that they were as thin as kitchen towel and so his pyjamas and sheets would be soaked overnight. But we have a solution for that now and often his pad is dry in the morning.

We are fortunate to have a supply of effective pads supplied to us free of charge by the NHS and they are delivered, in bulk, once a quarter. A few years ago I had a year long battle with the Continence Service as they were keen to change our product to a cheaper brand, but after a trial they were ineffective and would leak. I had to keep trying alternatives and feeding back and this went on for a full year, until finally they accepted what I was saying and gave in and let us keep the proven pads that we had been using all along .I had been buying the Tena product myself in bulk while these trials went on. I had to threaten them with going to the local press with the story before they accepted my request. I told them that it was a basic human right to be clean and dry and that for the sake of cost saving, they were depriving my son of that basic right. That was a hard fought battle and we have an annual review when they check that the pads are still fit for purpose, but there has never been a hint that they wish to downgrade us again, so I suspect there is a note on our file. But it is hard enough dealing with incontinence, without having to fight not to have inferior products.

So I suspect Joshua, now at 21, will not achieve toilet training now but I have not given up complete hope and so I encourage the words ‘wee’ and ‘poo’ at every opportunity possible, and he may well surprise me some day.

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