The muscle weakness caused by SMA may mean that you use a wheelchair all or most of the time and that your home and, if you have one, your garden, have had to be adapted so that you can get around comfortably and safely; but now you’re older maybe it’s not all working quite as well as it did. Maybe you need a better set-up in your bedroom to do homework or would like more privacy? Or maybe, you can still walk a bit and yes, you would like this, but the bigger problems for you are that it’s getting harder to manage with the way your bathroom is set-up; the stairs to your bedroom are getting just too hard for you; you’re a bit too big and heavy for your parents to carry you anymore. There are as many possible scenarios in-between as there are young people with SMA who live in all sorts of different flats and houses around the country and who find they just aren't quite working for them and their family.
Maybe your parents are already thinking about how your needs have changed, are looking for solutions and are already starting to talk to you and any siblings you have about what you all think. We have a website section for parents of children which discusses Thinking About Accessibility – Adapt or Move? which may be helpful to them. They might find it useful to have a look at the page How Well Does Your Current Home Work?.
The information in there could also help get you thinking more about anything that you find is a bit of a pain now, what might become a problem, and what might work better for you. You can then let your parents - and anyone else who gets involved with your family to make any changes - know. First off, it’s most likely to be an occupational therapist (OT), but other people get involved as well and it can all take a long time and need a lot of careful discussion.
These sections are in the Children age 0 – 12 years 'Homes & Gardens' part of our website so apologies that they're directed at parents / guardians, but the system and questions you’ll probably want to think about are the same for your age group and both you and your parents will be part of any decision-making about what changes your family make, when and how. If you want to see the whole of the section, which has a lot of other information as well, go here.
Page last updated: July 2019