unfortunately these children need highly qualified care around the clock. a lot of it.
I think they could really benefit from sensory matts, compression suits, things of this nature.
i believe they are experiencing sensory overload, from the inside out. just a guess.
i've seen it happen to a lot of children born with disabilities.
the eyemovement thing is excellent for the boy though, he can communicate with that and eventually hopefully find a way to communicate somewhat effectively the nature of his disorder and what he is experiencing on the inside- if he is capable of doing so.
i believe this is coming down a central nervous system issue and possibly a rare severe unknown auto immune disease.
just watch the movie "brain on fire" on netflix and you will understand why i think that. i think it's called that, or maybe girl on fire. i can't rememeber.
there have been other cases of children like this who were born severely disabled with troubling unknown conditions, who found ways to communicate that were unconventional about their disorders- and turned out to be extremely eloquent in their communication style. and fully described what they were experiencing.
and what they described, appeared to be symptoms of nervous system misfiring, at an extremely high and severe rate. as they described it, it felt as if their body was lighitng up like fireworks or lightning on the inside, all over. in excruciating detail. and that other sensory input is the only thing that therapuetically helps tone it all down.
including- screaming, tapping, rocking, making bizarre noises.
i think this is why the girl in this video calms down when she gets headphones, and why when she first wakes up- it takes a minute for everything to register- and then she starts wailing and making these bizarre sounds.
the normal brain scan gives me hope though and i would work as best i could to help them communicate as that is your only hope at this point, as well as continue research and seeing specialists and taking care of them physiologically as well as best to your ability for their condition.