Sam's story
I wish you knew how difficult it can be getting out and about when you have a child with profound disabilities. Euan, our 16-year-old son, has a life-limiting degenerative condition and uses a specialist tilt-in-space wheelchair which is rather large. Wherever we go and whatever we do, accessibility is always at the forefront of our minds and many people won’t realise or appreciate the challenges it presents.
Visiting friends is particularly difficult if their houses aren’t accessible. We are pretty resourceful so can usually find a solution to get inside with various ramps, but high steps and tight corners are impossible and we are often confined to the garden. And gravel drives are hard work!
Even going to a café or restaurant is a challenge as most venues don’t have an Access Statement. These are so useful as they provide detailed accessibility information for people with all kinds of disabilities.
So we either have to do a recce first or look at photos online to work out whether we can get inside and have enough space. It’s definitely something I wish more people were aware of.
When going further from home, we have to plan days out and journeys around Changing Places toilets which have a hoist and changing bench. There are more of them around now than when we first needed them 10 years ago, but there are still so many places we just can’t visit as these facilities aren’t available.
It's the same when it comes to finding a suitable place for a holiday because ‘wheelchair-accessible’ accommodation isn’t enough for us - we need specialist equipment including a hoist and height-adjustable profiling bed and a large wetroom with a shower stretcher. There are not many of them and they are often expensive and get booked up many months in advance.
Staying with our families who live in Wales and Scotland is not an option and there are no hotels or holiday homes nearby with the equipment we need. Last year, a close family member was seriously ill and we had to find a holiday home near them which was spacious enough for us to use with our own equipment. We managed, but it was hard work and we had to do bed baths as there was no wetroom. Sadly we needed to return a month later for their funeral and had to find another place to stay at short notice as the previous place was booked. Even finding somewhere wheelchair-accessible for the wake was a challenge and as there wasn’t a Changing Places toilet nearby, the day itself involved going back and forth to the holiday home.
We are used to these challenges which are part of our everyday life and you do get a sense of achievement when finding a good workaround, but sometimes I wish it wasn’t quite so hard.
In contrast, one place where we feel comfortable and don’t have to worry about accessibility is The Treehouse. We haven’t got the flexibility other families enjoy, so having help and support around us makes such a difference. It’s been great, invaluable and important from when we first went there in 2014, shortly after Euan’s diagnosis. Since then, he’s benefitted from hydrotherapy and music therapy, as well as having overnight short breaks. Sometimes we go there and spend time in the garden or just chilling out on the water bed in the sensory room. He loves people chatting to him even though he isn’t able to respond, and the staff always do that. Euan loves music and we particularly enjoy the online ‘Lullaby Nights’ which started in lockdown, and the themed ‘Band Practice’ events at the Treehouse. We also love that the activities and events run by EACH are tailored to the abilities and sensory needs of Euan and children like him so that we can join in without having to adapt things. It’s nice to have a break from finding a workaround.
Sam, Euan’s mum
Ipswich