A couple of incidents over the past couple of days that make me realize just how imperfect the idea of a ‘communication system’ is…
Owen is fed by g-tube and especially these days gets very little to eat by mouth. He silently aspirates even on his own saliva and adding any food into the mix seems to just be asking for trouble… However, a few days ago, as a special treat, he shared some of my broccoli soup. He can’t really manage the contents of a spoon, so I simply dip my finger in and put a bit on the inside of his lower lip. He loves it – takes a moment to figure out what to do, and then with much gusto, goes about licking it up. He loves savoury foods, much more than sweet. Anyway – he was enjoying some soup with me, and when I was done I absent-mindedly stacked up the bowls and cleared the table without letting him know he was finished. (Typically I would sign to him that the next taste is his last, and then ‘finished’.) His face clouded over very quickly and like a gathering storm moved from surprise and disbelief to realization and disappointment to outright sorrow and weeping, right before my eyes, in just a few moments.
The problem? He wasn’t done yet. Luckily, I had some soup left in the pot and could give him a bit more, and then use language to convey what was coming next. But the damage had been done and the trust compromised, and it took him many minutes to calm down enough to resume enjoying some soup. If he’d had a communication system and the same actions took place, there would have been no asking him anything. He would have had a very hard time getting over himself enough to engage with me to let me know he wanted more. I suppose the lesson here is that if he’d had a system in place, he could simply have let me know when HE had decided he was done… But then what would that look like? He would have to initiate the communication, and then somehow manifest my asking him the right questions.
Not really an incident – more an experience… We were at the Ontario Science Centre today – an almost ideal place to engage with Owen. Lots of visual stimulation, lots of activities, lots to discuss. But we were also there with Angus and a young friend, who kept us running from exhibit to exhibit and who also required extensive mediation regarding whose turn was whose. So needless to say, Owen was simply pushed around and I can’t honestly say that I engaged with him directly for more than a few minutes. What must that be like for him? I feel so strongly that he does indeed have preferences and have something to say, and yet I manage to take so little time to even tell him what’s going on around him. And if we’d had some kind of question-and-response ‘system’ designed to find out what he’d like to do, I can almost certainly say I wouldn’t have used it once.
No answers come to me as I’m writing this. Maybe the reality is just that sometimes we’ll get it all together and he can tell me something, and sometimes he’s just along for the ride – and hopefully enjoying himself for most of it.