We all love to explore the world. Heading on a day out to have some fun sounds like such a lovely thing to do. Pack a bag, grab some food and jump in the car. Take some photos and upload them to social media. Have a lovely day. Head home and do it all again the next day.
This sounds idyllic but it is so far from what my family can achieve it’s unbelievable.
I am a mummy to a beautiful 8-year-old who has complex health needs. He has a rare genetic disorder with hard to control epilepsy. This means that at 8 years old he relies entirely on me for his care.
It also means that Ethan still wears nappies or ‘pads’ as we refer to them now that he’s older. Our days out are planned around where we can go to change Ethan. Ethan no longer fits on baby changing because he is 8 years old and about 5 years ago Ethan stopped fitting on the pull down benches. It is heartbreaking to go somewhere that doesn’t cater for your child.
He is doubly incontinent and has fluid through a percutaneous endoscopic gastrostomy (PEG). This means he needs changing every couple of hours, sometimes more. He doesn’t fit on the benches provided in toilets so that means he has to be changed on the floor. Have you seen the floors of public toilets?! I have and it’s not pretty!
Would you change your precious child on the toilet floor? Lie them in other peoples wee and poo? No I didn’t think so! Well that’s what is left for my son.
Being an 8 year old means that Ethan is also very heavy- he is unable to hold his own weight and picking him up from the floor is incredibly hard and almost impossible for me to do on my own now.
Everywhere you go you see toilets which are accessible for the disabled. Let me bring you in on a little secret – they aren’t actually accessible for the disabled!
Well, my son can’t sit on the toilet. He needs to access it on a bench big enough to hold him and he also needs a hoist to transfer him from his chair. There are just 300 places that provide this for Ethan to use in the UK – This hugely limits us to where we can go for a day out.
Research has found that over a quarter of a million severely disabled people, including those with profound and multiple learning disabilities, do not have access to public toilet facilities that meet their needs.Changing Places website
A changing place toilet provides access to all. A large bench or changing table to suit children and adults with a mobile or ceiling track hoist to lift the person from their wheelchair to the toilet or bench. Ever seen one? Well then you are lucky!
You see this means that days out are not easy for us and we have to plan where we go around how we are going to change our son. Something a lot of people don’t even think twice about is a huge problem for us. I can’t go out for long on my own with Ethan as I can’t lift him from the floor. I have to have someone with me to do a two person lift with.
Going to the toilet is a basic human right. Wouldn’t it be great if everyone could be changed and have this right like you and I can.
Next time you go to the toilet in public ask the organisation if they could install a changing places and you may just be able to provide somewhere for me and my family to go out for the day!