I know things are getting better, in terms of consistency in Dylan’s care, because this week there is nothing in the diary section of his Filofax that I feel the need to follow-up. Usually after reading through Dylan’s diary I make a list of things to discuss with the manager but this week everyone seems to be on the same page.
Getting to this point has taken a while. Dylan moved to the care home in June and this is the first time there has been nothing for me to note. Don’t get me wrong, I’m not talking about major issues here – if there was something I thought critical to Dylan’s care (his safety for example) then I’d pick up the phone. I’ve only ever felt the need to do this once, however; mostly my ‘Monday morning email’, as I’ve come to think of it, seeks reassurance or suggests tweaks.
So far this has included such things as asking whether Dylan might have his multi-vitamin with his breakfast rather than while he is in bed (which felt to me like a hospital regime); checking that the ‘sausages’ referred to in diary entries are vegetarian; speculating why Dylan wanted to leave a favourite activity after 15 minutes; suggesting Dylan isn’t offered a DVD after a certain time so as not to over-stimulate him before bed; and advising that jelly is not an appropriate breakfast food.
I’m in the habit of reading the diary entries with Dylan when I visit him as they are a good basis for simple conversation and makaton signs. Although I telephone or email the care home each day, the entries in Dylan’s Filofax are more detailed and provide a richer picture of his life. I can also look back through the Filofax to identify pattern and progress; in this sense it is a historical record as well as a contemporary account.
‘Can I see your Filofax?’ I asked Dylan in the cafe last weekend after we’d finished our Sunday walk with Caroline and Mark. Dylan reached into his bag and handed it to me. Caroline looked astonished. ‘Dylan knows the word Filofax?’ she laughed. It is rather odd given Dylan’s small core vocabulary, but it’s a good example of how Dylan learns the words he is interested in or perceives as useful.
I suggested using a Filofax when Dylan moved to residential care for two reasons. Firstly, I had always struggled with the liaison systems used by the schools and day care centre which Dylan attended. I disliked the fact that they tended to be organised around categories which weren’t a priority to me. My instinct was always to request something more open and fluid. Secondly (but more importantly) I wanted a system which didn’t identify Dylan as living in an institutional setting. Rather than marking Dylan out as unable to communicate for himself, I wanted something which felt adult and which gave him a sense of ownership and control over his life. What Dylan needed, I decided, was a robust but portable paper-based system which could be customised for his needs.
So one of the first things I did when Dylan moved to residential care was take him to choose a Filofax. The colour and styling were Dylan’s choice but as he didn’t know, at the time, what its purpose would be I guided him towards a particular size and suggested he spend enough money to get something of decent quality. Just a few months later and Dylan not only knows the word ‘Filofax’, he carries it everywhere; even when I suggest he leaves it behind (in the boot of the car when we are out walking for example) Dylan insists on having it with him.
It’s not just the diary section that matters to Dylan (although he understands this is important) but the pockets where he keeps his passes and cards. This is something Dylan seems to particularly enjoy as it has given him control over his travel and leisure documents. Dylan’s blue badge now remains with him rather than with the carer. Dylan also keeps his annual passes for favourite places such as Jorvik in his Filofax. There is a danger that his cards and records would be lost if the Filofax was ever misplaced but Dylan is careful with his belongings.
For Dylan, this has proved a fantastic system. Today I was reminded of how responsive and open to development it is. A few weeks ago I copied some low-sugar recipes into a section of Dylan’s Filofax; I was still trialling them but thought the care home staff might find them useful. This morning when I asked ‘would you like to make some gingerbread today?’, Dylan’s response was to fetch his Filofax.