I found myself disparagingly wondering if this shows that there really IS a day for everything now. And then I thought about it a bit more.
Of all the challenges Sebastian faces at this stage of his duel diagnosis of Duchenne Muscular Dystrophy and Autism, the fact that he is not yet continent is one of the biggest in practical, day to day terms. And this is not because of his lack of toileting ability but the lack of awareness, support and facilities.
It is an area of disability that even within the SEN world isn’t really talked about.
Perhaps it is to protect our children’s dignity and I fiercely believe in that. Ironically though, the lack of awareness created by the fact that no one talks about it means that I am failing to do just that.
We all know that it’s important to talk to children about disability to create awareness and understanding that not everyone is the same.
So we need them to know that people might look different, move differently, think differently AND that they might go to the toilet differently.
Seeing an older child in nappies should not mean raised eyebrows and staring, it shouldn’t mean whispers.
It is only by talking about it, acknowledging it, that we change the assumption that everyone over the age of 3 is continent.
And it is only by changing that assumption that both understanding and facilities will catch up. There should be no more shame in not being continent than there should in not being able to walk.
A proper changing facility should be as much a part of making somewhere accessible as a wheelchair ramp.
But facilities to change anyone larger than an average 3 year old just don’t exist in enough places.
Where to change Sebastian is something I think about wherever we go. It adds an extra layer of anxiety to daily life.
I have changed him in the boot of the car, on tiny changing tables in the middle of busy public toilets, on toilet floors, in cramped disabled facilities that aren’t fit for purpose.
I have changed him standing up because there isn’t anywhere for him to lie down, meaning that he isn’t properly clean.
I know that as he gets older and bigger, this will only become more of an issue, impacting our lives more and more.
I didn’t even consider this need before we were faced with it.
I am sure many people don’t think about not having an appropriate place for their toileting needs to be met when they go out for the day. And yet it is an issue for far more people than we would like, people of all ages.
So if we are talking about protecting dignity, we actually need to talk about toileting more, not less.
We need it to be identified as the real issue it is.
Parenting a child with disabilities often feels lonely. As ridiculous as it may sound, having an older child who isn’t continent is very isolating .
When you have a baby, it’s totally ok to talk about nappies and wee and poo. As they get older, that changes. Life moves on.
Except that I am still doing it and sometimes it feels like I am the only one. I still carry a changing bag long after most of my friends have given theirs up.
It’s a very physical representation of all the ways that our life is on a different path to the one I expected. But I can rationalise the emotion.
The thing makes me feel as though I am alone is that this aspect of Sebastian’s disability is not acknowledged or catered for.
More importantly, I never want him to feel that he is an a world that doesn’t cater for him.
I don’t want society to disable him more than Duchenne and Autism already do. I never want him to feel shame around his toileting.
I want him to know that he deserves as much privacy and respect as everyone who can go to the toilet by themselves I want him to know that his needs are important and equal.
I want him to feel acknowledged and valued.
So it is not because I don’t care about his dignity that I want to raise this awareness for him. It is because I care so much.
So on World Toilet Day, here’s what I want to say. Toilets are a basic need. They shouldn’t be the privilege of the able bodied