Two weeks ago, Boo had an opthamology appointment. He is quite long sighted, which has given him a double squint. He wears glasses most of the time to correct this. Who am I kidding: he is supposed to wear glasses most of the time but spends most of his time throwing them around the room for attention. It doesn’t bother him much and his glasses are adorable. He looks like a mini-Professor. But we hope he will outgrow it so he doesn’t need surgery.
There was good news at the last appointment. The glasses are doing a good, if not perfect, job in correcting the squint and his vision is improving. And in other good news, we went in on time! Usually opthamology runs 90 (yeah, count ’em, 90) minutes late.
So it was a good appointment all round really. Well, nearly.
Well actually, not at all.
You see, Boo, expecting to go in 90 minutes late, decided to fill his nappy 5 minutes before we were due to go in. So we had a problem I dread when I go to appointments with Boo: the problem of finding somewhere clean and safe to change him.
You see, Boo is 2. And he’s a large 2. His Dad is 6′ 4” and Boo has never really understood he was born prematurely. So I can’t put him on a baby change table. He is too big. I asked where the nearest disabled toilet was. I was directed to it.
Fortunately, it was in the new wing of the hospital. It would be fine, I thought.
It wasn’t. Not. At. All.
First, I struggled to get me and Boo’s adapted buggy through the supposedly wheelchair accessible door. After much breathing in we got in there. When we got there, we were greeted with a new but unsanitary room, with urine and dirt on the floor. There was nowhere to put Boo except on the undersized change mat I carry about with me on the floor. Since the mat is too small for his body length, I put it under his bottom and legs. I took off my cardigan and put it under his head, knowing I could wash it when I got home. And let me tell you, it didn’t go in on a 30 degree wash!
The process was unhygienic and frankly degrading.
Thankfully, Boo is too young to feel that yet. But I did. And he will feel that way in the future. Because Boo is very aware of what’s going on around him. He is only going to get bigger and potty training is not going to happen any time soon. He may be in nappies for years.
And this was a hospital. Not a village church hall. A hospital. A place where a good number of disabled children can be found every single day. And they had no suitable changing facilities. And the best alternative they had was unclean.
This is wrong. Plainly wrong as well as posing health risks to our little ones. This is a question of health and of dignity.
I was going to blog about this experience straight after it happened, but delayed things when I learned of the ‘Space to Change’ campaign that Firefly are launching. They have lots of exciting plans in the pipeline, but for now, they are interested in collating as much feedback from parents and carers as they can about how we toilet or change our children when you’re out and about. What are the issues we face? And what examples of good practice have you seen? It’s an issue I feel passionately about and am happy to support Firefly in their efforts.
If you have experiences you would like to share, there is a quick and easy survey you can fill out here.
Please do take a few minutes to complete this and share the link (https://www.surveymonkey.com/s/YLNV2ZV) as widely as possible.
Yesterday, I was at the Houses of Parliament giving evidence to an Inquiry into disabled childcare (blog post to follow!). One of the many things I learned was how invisible our problems are to other people who lead more typical lives if we don’t make ourselves heard. I also learned how shocked people can be by things we all know and have come to accept as our everyday reality. I have learned that people might want to help us change things. So here’s another opening for us to be heard. Please take it.
And in the meantime, I will dreaming about this bathroom.