However, as she gets bigger and heavier, this is getting a lot more difficult for many reasons. One of the most significant reasons is the challenge of changing her nappy or putting her on the toilet while we are out.
Although there are numerous disabled toilets around, not many are suitable for people (children and adults) with profound disabilities. Many disabled people ideally need a changing table (ideally height adjustable), a ceiling track hoist and a toilet with enough room for a carer either side (as well as the facilities being clean, of course). Not just a large room with a dirty toilet in it, which is how a lot of disabled toilets present themselves.
Once Jess became too big for baby changing facilities, we used to be able to change her in her wheelchair, as the seat was able to be reclined. However, her new wheelchair doesn't do this - it tilts but keeps her in a seated position, which makes it very hard to change her on it.
So now when we are out, it is really difficult. Jess can't stand or weight-bear reliably, although we are doing all we can to improve this, as this would make life so much easier. There is rarely anywhere obvious to lay her flat. We take a large changing mat out with us, but I refuse to lay her on the floor of a public toilet - the floors are rarely clean, and Jess rolls over without warning and flings her arms and legs in all directions. I do not want her rolling around on dirty toilet floors. There will also come a point soon (in not the too distant future) when I am unable to lift her safely from her chair on to the floor and back again.
Which leaves us where? Only able to go out for 2-3 hours at a time? Not able to go far from home? How does that fit with us wanting to give Jess as normal childhood with regular experiences? Most children are able to have days out and to stay away from home for more than 2-3 hours.
Consequently, I have been asking everyone we meet - doctors, therapists, carers - how we can overcome this, and I was told there were no easy answers but to have a look at the following website:
This is a campaign for toilets in public areas which meet the needs of those who need one or more carers, a changing bench and a ceiling track hoist. If these facilities were easily available in public places such as airports, shopping centres, train stations etc, I cannot tell you the difference this would make to our (and many other people's) lives.