Sam needs a new standing frame. He stands most days – he is unable to stand on his own so the standing frame provides enough support to keep him upright.
On a busy day Sam can spend up to 10 hours a day in his wheelchair. He ‘tolerates’ sitting in a chair really well, He’s happy being able to see around him and his chairs are comfortable and supportive enough for him to be content to spend hours in them, but it’s a long time for his body to be in one position and over a lifetime sitting this much can lead to all sorts of problems.
There are lots of advantages to standing. Human bodies are designed to be upright and although Sam spends about 12 hours a night lying flat, it’s not the same stretch as standing straight. Bodies should ideally experience a variety of positions, and the digestive system benefits from him being upright. Also kids like Sam are at huge risk of their hips migrating out of their sockets and in the absence of daily walking, standing is a good way to bear weight on bones and joints.
Sam first had a standing frame when he was almost one year old. At that stage he often hated it, and it felt more like a torture instrument than a helpful aid. These days Sam will happily spend an hour standing as long as he has good enough entertainment. The standing frame isn’t particularly elegant, and takes up a lot of room, but the benefits to Sam are worth having it available to him.
A rep visited recently with a new kind of standing frame for Sam to try. There was normal amount of fiddling and adjusting, but once Sam was in the new standing frame he was happy and his physio was able to see that it worked.
At the end of the session we were asked what colour we wanted the new standing frame to be. Bear in mind that this is a standing frame that lives in Sam’s room, the room that was finished and decorated earlier this year. The room that I am desperately trying to keep as a boys bedroom rather than an equipment storage room.
Sam’s physio said we could have it in black, pink, orange or blue. Blue, I said. That will be best.
Then James said, ‘Um, shouldn’t Sam choose what colour he wants his standing frame to be?’.
Of course he bloody should! What was I thinking? I spend a reasonable amount of my time glowering at people who don’t talk to Sam directly, reminding everyone that just because he can’t talk doesn’t mean he doesn’t understand what people are saying. I tell people that he is a boy with views and preferences. What kind of ally am I?
Except… I have a history of manipulating my children’s choices. When Eli is choosing between two tshirts and one is really ugly, I will unashamedly steer him towards the one that I don’t dislike. I haven’t allowed some things in Eli and Stella’s bedroom because I don’t like them (e.g. massive garish posters).
I had a strong suspicion that given the choice Sam would choose to have an orange standing frame. Orange is his favourite colour. Let me explain that I have a mixed relationship with orange. It’s a hard colour to get right in my view. And the orange of this standing frame was more sickly, pasty colouring paper than cool, vibrant citrus fruit.
Fortunately for Sam he has hugely improved his ability to clearly communicate Yes and No over the last year. Last year it was often difficult to tell whether Sam was answering a question and we estimated that we clearly understood his yes and no maybe fifty percent of the time which is a bit tricky with a binary outcome. Now we would say that we get a clear yes/no about eighty percent of the time.
So using his latest communication book I talked Sam through the options and asked him what colour he would like his standing frame to be:
Would you like a new blue standing frame, Sam?
Would you like a black standing frame?
Would you like a pink standing frame?
Would you like your new standing frame to be orange?
Totally cocking up my interior design aspirations.