When I was a teenager at bedtime I would tune my shortwave radio to Cairo and listen to the Muezzin casting calls to evening prayer in lilting song. But shortwave being what it is the station would wander and the sound enveloped itself to distortion. Fragments of singing were juxtaposed in senseless, sometimes backtracking cycles so that I could only hope to catch the rhythm of religious chanting and exotically drift off to sleep.
Segev processes information in much the same way I imagine. His brain, though broken, missing pieces, shuffled about, is still in essence a human brain programmed to process information through his senses. He doesn't have use of his limbs in any direct way that can be construed as sensing the environment but he can hear.
He is twelve and a half years old, which means that whatever development his brain could go through ended long ago. This doesn't mean he can't learn things, just that the brain is quite fixed with no ability to change.
If he receives information in the way that I sometimes tried to listen to the shortwave transmissions from Cairo, until frustration at not receiving enough sound to make any sense of caused me to turn it off until the next night, then you can imagine with what monumental difficulty he must try and react to any staccato stimulus he perceives.
A fly has walked on his eyeball before I could shoo it away and Segev's reaction was absolutely nothing, not even to blink. Can you imagine what it means when he smiles as a result of hearing my voice?
When I go to check on him or to pick him up from his mother's it takes about twenty seconds before he comes out of his daze and recognizes me. And then he begins, rising crescendo of moans, head cocked back and then to the side, wailing excitedly, telling me all his stories. For about sixty seconds and then he fades again. Tired out or simply back to the labyrinth, I don't know, but next to impossible to elicit a response soon.
The picture of Segev at the top right of the blog was taken when he was sleeping, his hands purely by chance finding that position as though he had curled them close to his face like any normal child and a smile on his face in blissful sleep, the only time I have ever seen Segev smile while sleeping in all his life.
I'd like to believe that he dreams though he has no rapid eye movement. That is most likely due to his paresis. What images come spontaneously when you've never had the benefit of sight? I've never looked into this. Or the ability to understand the images if you suffer cortical blindness? Sounds? Can it be that sometimes his mind believes that what he hears or if he sees, vague shapes, is just part of a dream? I mean, how can his mind learn to distinguish between dream and wakefulness?
Perhaps it doesn't really matter. Somehow he is processing information; I taught him to stick out his tongue. He is getting better at it. He can even repeat it within a few minutes but then must retreat, as usual, to the labyrinth.
He goes there often, disappearing, but lately has been reappearing more, suddenly opening his eyes with a great big smile, not a gelastic seizure, only to instantly fade back to the darkness of his down-time, the labyrinth.
With Segev I don't think it's about what he may or may not see (that new thing) or what he hears or smells, (though when I hold him he definitely responds by being more relaxed and quiet) that affects his processing, any more than an auditory dream that he has might. You might even say that the very lack of sensory input that he has tends to allow internal phenomena to extensively affect his brain's 'composure'. Internal mechanisms, limbic system (if that means anything to you), physiological processes as part of our emotional learning skills, but without an outlet.
I refer to this as an accruement paradigm and while Bennie Waddell nicely states,
"essentially ALL non-typical children have a common worldview that most of the rest of don’t have. They have the purest form of connectivity with other humans. They have the purest form of love, of peace, of forgiveness, of faith, of giving than any other individual on the planet."
like a raw nerve or live wire, this connectivity results in unfathomable transformations inside the children which has no normal way of expressing itself. When Claire writes about the difficulties of Sophie's shaking it is in part because of the unpredictable nature such expressions have. Classic seizures are seen as propagation of cyclic electrical discharges in the brain but it is known that emotional circumstances can bring on seizures and in the accruement paradigm I propose that even physiological disturbances, as part and parcel of a particular child's disabilities can also result in seizures.
It would seem to me that one of the main elements rests with over-stimulation and when a child has such a minute window for perception, every little thing that enters that window will have a disproportionate effect.
The brain's natural state is to be awake and so while Segev will continue to wander the fields of his darkened mind, sometimes losing his way in the labyrinth, if only for a while, I wonder if he brings anything back with him that has helped him process conscious information or that only in those brief conscious moments we share, his mind knows the difference between dream and what we call reality.