Some days, the harsh reality of the lack of Changing Places toilets (with a bench and hoist) really gives you a knock-out blow.
I have a son with Cerebral Palsy. He is a full-time wheelchair user. He needs Changing Places toilets with a bench and hoist. I campaign for these facilities so I’m all too aware of how few of them there are. But despite that, it’s still a huge punch in the gut, every-time we are out and are caught short.
I recently took my son, Hadley, to an orthotics appointment. He needed to have his splints adjusted as they were rubbing him. As usual, the Orthotics team was brilliant. Hadley really likes orthotics appointments. Today was no different. Except that Hadley needed the toilet as soon as we arrived.
I quickly rushed into the standard accessible toilet (I already knew that there wasn’t a Changing Places at the health centre) and attempted to lie him down and remove his trousers and underwear (he cannot stand unaided for me to do this) and then lift him onto the toilet. But the toilet was (excuse the graphic nature of this) smeared with excrement! By the time I realised this, we were mid manoeuvre… Of course I hadn’t noticed because his urge to go was so, well, you know….urgent…Lesson learned.
So I then attempted to hold him in a standing position to allow him to do a stand up wee. Oh my gosh! That was mistake number two. Of course, it was a disaster and we both ended up covered in urine. I sat him back in his wheelchair, tried to clean the toilet as best I could with hand soap and then tried to hold him in a hovering position over the pan, desperately trying not to touch anything and telling him to hold on to me as tightly as he could so that he didn’t touch anything either. Or worse, fall in!
By this point I was a little stressed (and late for the appointment).
I was also now in quite a lot of pain, as the lifting, twisting and holding Hadley in such an awkward position, aggravated my already vulnerable back. I put on a brave face for Hadley’s sake, we had our appointment (where I was able to lie him down safely to clean him up and change his clothes) and we got back on the road.
It was lunchtime by this point, so we popped to the local supermarket to grab something to eat on the ride back to school. And guess what. Those words that I’ve sadly grown so anxious of hearing were said in a little voice. “Mum I need another wee. Sorry.”
I hate that he has to feel sorry. I hate that he knows how hard using ill-equipped toilets is for both of us and that he feels he has to apologise. Clearly it’s not his fault. He should not feel guilty one bit that businesses and public buildings constantly exclude him (and hundreds of thousands of others!). But he can’t help but notice. Because it’s so obvious, even to a seven year old, that this is not fair and that he’s being treated differently. He’s being treated as less!
A seven year old should not have to feel guilty for needing the toilet.
I tell him constantly not to be sorry and that he’s such a superstar for telling me when he needs to go. Because Hadley has worked so hard to recognise when he needs to use the toilet. It’s been a long journey as his condition means he’s not always able to control his bladder and bowels. It’s so difficult for him to hold it in, but he strives to. Because he wants to use the toilet. He doesn’t want to wear nappies any more!
It would be easier to allow him to relieve himself in a nappy on occasions like this. But I can’t do that to him, not unless there is no other way! He deserves to feel proud and be able to use the toilet, just like everyone else!
Imagine if all parents went through the stress of potty training their children, only to find that it was a complete waste of time as there are no toilets at all in public! Not in shops or restaurants. Not in cinemas or leisure centres. Not at a doctors’ appointment or in hospitals. Not on holiday or on a family day out. Imagine if the only place every child could go to the toilet was in a nappy or at home? There would be outrage!
Anyway, skip back to the supermarket and there was no way I was going to lay him on the floor in the accessible loo or in the ladies. Both are disgusting. So we abandoned our purchase of lunch, jumped back in the car and quickly drove to my mum’s house. Fortunately she only lives around the corner.
There I was able to at least lay him down and change him and help him onto the loo.
Back in the car. Heading home with aching back, I started to get really angry and sad. It really shouldn’t be this hard. I shouldn’t have to put my child at risk when he needs the loo if we are heading to an appointment or going out for the day. I shouldn’t have to put myself at risk either. All of this I know, as I say, this has been our reality for a while now, but the realisation of how much I’m struggling to lift Hadley now, has made it feel ten times worse!
It seems to have happened over night. One day I could lift him onto the loo and help him fairly easily, the next it was barely possible, not without hurting one of us.
Here comes a big dose of mum guilt. What are my options? Leave him in nappies and make him sit in his waste until we can get somewhere that caters for him or get home. Don’t go out (that’s not possible!). Or continue to fight like hell to get him and everyone else the facilities they deserve. I choose the latter. Until then, we’ll have to find a way. I don’t know what that way is yet.
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