I was going to write something about onions, comfort zones and the illusion of control (my favourite topic:), stuff that has been on my mind for some time now. Alas, it’ll require some quiet time to do that. And quiet time is in short supply at the moment. And when it’s available, it’s too late in the day and I can’t get my thoughts together.
So instead, here is a piece about the miracle of Christmas or rather: a Christmas miracle. Whether you believe in them or not, this one really happened. And it wouldn’t have happened without some divine intervention.
After months, if not years, of waiting, of first appointments and follow-up, it took just a day or so for a specialist in the Dublin CRC Assistive Technology Department to build a new table for Pádraig that has a build-in sunk-in button that is connected to a bleeper giving him (and us) auditory feedback when he uses it.
Pádraig has been using a button giving this auditory feedback for some time now, but mostly with his left food – which made the whole exercise logistically a bit complex. In addition, this new button can also be connected to the Tobii Dynavox or any other electronic device and, we hope, with the help of a splitter (which I will be looking for) to the bleeper and the Tobii at the same time.
So, here we are, practicing with the new, invisible, always available, button. One bleep for ‘yes’, two for ‘no’, three for ‘I don’t know’, a bleep to make a selection, a number of bleeps to solve simple maths problems. And then we thought to introduce an ’emergency bleep’, the ‘SOS’ bleep, the ‘Mayday Mayday Mayday’ bleep. In other words: loads of bleeps until someone reacts and comes to the rescue.
It’s absolutely fantastic. And great fun. (In order to keep the video short, this is just an extract of the session we had – and Pádraig stopped the ’emergency bleeps’ by himself when I asked him to do so. These bleeps are totally controlled by him.) You could see how Pádraig is enjoying the access to a device that is there when he needs it. That he can control. One for which he doesn’t need anybody to offer it to him to answer a question. I think he was quietly over the moon. And he couldn’t stop himself having me on with his provocative ‘bleeps’ answering (consistently) the opposite to what I would have expected. Great fun.
But also quite frightening. Because: seeing the difference that this is making to him, knowing that there are people around the corner from where we live, them knowing how dependent Pádraig’s well-being is on such a device, well knowing all this and more – how could it take so long to make it available to him. What a difference it would have made to him, his life and his health, if someone had followed through on this two years ago.
They had some ‘experts’ on in the morning giving advice on how to deal with difficult situations in your life: break the problem down into manageable chunks, sleep well, eat well, exercise.
There was only one way to deal with this – and that had nothing got to do with any of the advice given this morning by the experts on the radio.