R was never a fluent speaker but she did talk. She lost her speech at two and a half. By three and a half, she had lost the use of her hands as well. This has presented her speech and language therapists with a problem. For children who can’t speak, there is Makaton – signing, which requires the child to use their hands; PECS – which involves choosing a card which represents an object or a feeling etc and handing that card to the communication partner, so hands again; iPods/iPads – hands needed here too. For the child who can’t use their hands, as far as her speech therapists knew, there really didn’t seem to be much available, and they seemed to have very little idea where to begin with her. R reached the age of eight, without having had any real strategy to support her communication being put in place. R is actually very good at getting across her message to her family but, by and large, others outside the family, struggle to understand R’s “eye-language”. I am genuinely baffled as to why so little was available (until recently) to support the communication of a child like R. No doubt R struggled to persuade the therapists, like the physicians and psychologists that she was cognitively able. Nevertheless, the right to communication must surely be considered fundamental, regardless of perceived intelligence. Something had to be available. What about people with cerebral palsy or those who have had strokes or head injuries? What is available for them?
One of the great advantages of parenting a child with complex needs now, compared to even 10 years ago, is the ability to access good quality information and support and advice from other parents. Parents of a child with a rare disorder are unlikely to bump into too many other parents in the playground (although, curiously enough, R shares a class with another little girl with Rett). Through the Internet, however, we have had the opportunity to get to know other parents and learn from them, from their experiences and their expertise.
My very favourite resource is Catriona Moore’s brilliant Living with Rett Syndrome blog. A while back Catriona wrote that her daughter had started using a PODD book. PODD stands for Pragmatic Organisation Dynamic Display. If you can imagine a book version of a flow chart, with symbols representing the connector nodes then you pretty much have the concept. For someone like R, these books require that a communication partner points at each option in turn until a choice is made, by pointing or perhaps by a smile or a hard stare. This sounded to me like a very good idea. After a bit of persuasion (read: moaning/whining/complaining) from me, R finally got a PODD book on Monday. It is utterly brilliant. R is taking every opportunity to ask for Pringles. So much so, in fact, that EB is becoming concerned about R’s waistline.
Now, I struggle with the imperative. I find it bossy and a bit rude. I am very much the sort of British English speaker who likes and expects every request to be prefaced with a “would you mind” or a “ if it wouldn’t be too much trouble”. This is tricky because G is German and, as he says, virtually every request in German is punctuated with an exclamation mark. 17 years into our relationship, I still bristle pretty much every time he uses it. I think, though, that I might just have changed my mind. This evening, I opened R’s PODD book and R immediately stabbed her finger furiously at the cell which said “Hurry up!”
Watch out! R may just have found her voice.