Present Tense and Presence

It's looking like this will be the third all-nighter of the week as Charlie napped in the brown chair for just over an hour in the early evening. Jim is usually home on Fridays; there were things that needed his attention though at work and then his presence was additionally requested at an evening event. It all worked out fine with Charlie cheerily waiting on the front lawn and a lights-on bike ride but, at the risk of playing the complainer, I reflected that people still don't fully grasp the extent to which Jim is a primary caregiver for a teenager with severe disabilities and his presence is not merely required, but essential on the home front. Next Tuesday Jim has to go into work for an event in the early evening and we wondered if there might have been more of an effort to schedule this earlier if he were a mother citing child care needs.

For Charlie, there's no such thing as virtual reality. He used to pore over photos of people when he was little but this happens rarely now. He did such perusing a few times last week and it seemed to leave him unsettled: The photos were of a far younger Charlie with far younger parents and grandparents and, while he grinned looking at him, he was tensed and hyper afterwards. Just too much, times and memories and faces and thoughts colliding.

For that reason, I questioned a long-time habit of emphasizing my parents 'will be back' as their visit ends. The expression brought that tense frisson to Charlie's demeanor, as if he wasn't exactly looking forward to going through all the anxiety of anticipating another visit again. One visit at a time (i.e., the present one) is enough to contemplate.

Charlie also of course relies deeply on our actual presences. Many people have mentioned Skype as a way for him to communicate with relatives in California or with me if I, say, went across the Atlantic ocean. But we noted years ago that Charlie was troubled to talk on the phone, to hear familiar voices, disembodied and emerging from a device. He likes us around not just to talk to him but for a hundred thousand other reasons. That means travel has become in my mind's eye solely -- not complaining about this at all; I would rather stay within a small circumference of places and close by Charlie if it keeps up a good peaceful-easy-feelingness.

And it is good to know Charlie would not consider talking heads as any sort of substitute!

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Comments

[Life Skills Teacher]

Just throwing this out there fwiw. Several of my students have been responding every positively to the language "it's too hard to..." for things they know they shouldn't do but just can't control the impulse right now (and when possible, we can then control the environment for them) or know they should do but just can't get themselves to do (again, staff can then rearrange the environment or demand to meet their need as possible.)
These are students who have previously shown an interest in that language/imagery when given the opportunity to self-evaluate work or behavior in a non-teacher-directed situation. (ie, I accepted whatever self-evaluation they gave.)

[Kristina Chew]

I do think I will try that...

[Melanie]

We've tried Skype, and my kid likes to see his grandparents on the screen and will kiss the screen, but definitely can't sit and converse. Phone calls on speakerphone are similar - he'll say "Hi Grandmama" and kiss the phone and then he's gone with the wind to whatever is next in his mind. Luckily the grandparents are cool with this...