Feelings

This is something I'm trying to understand and yet it is so puzzling.  When I die I pray God gives me 5 minutes to experience what Joseph feels like everyday just so I can finally understand.  He suffers from vestibular dysfunction which means he does not feel his body in space and time.  When they were evaluating him at Madonna they got him to lay flat on his back and close his eyes.  They lifted his left leg up and asked him if his leg was up or down.  He did not know.  So being that he does not sense his body and it's place in being he is always moving so that his brain can register the fact that his body IS present and accounted for.  Sounds strange, huh?  Hard for those not impaired to understand.  He even has to move in his sleep.  It seems sometimes he is having seizures just from the movement he makes at night and this is under heavy sedation.

A new discovery I made just yesterday was while cutting his finger nails.  I was holding his hand in mine and he asked me if I was cutting his nails or mine.  Same for both hands.  He could not feel me cutting his nails.  He made a discovery on his own.  He said he figured out what was making him sick on the bus.  He said it only happens when he plays video games on the bus.  A little boy was sharing his Gameboy with Joe and he would get sick from the movement of the bus while watching the movement of the video game.  I think this is more due to the sensory issue than to the vestibular issues.  Regardless, movement is something that is as necessary to Joseph as breathing is to us. 

He does not feel intense pain.  But he feels the small things and this drives him crazy.  He went outside barefoot and got a pretty bad cut on his foot.  Doesn't bother him.  I'm glad I saw it and cleaned it.  But if he gets a little scratch it will drive him nuts.  The doctors at Madonna say this is sensory issues.  He was complaining of itching skin.  This was mid-winter so everyone in the state of Nebraska is itching.  But it was like a plague to him.  So they wanted me to take him to the doctor not only to document but to make sure he was not having an allergic reaction to something.  No, the itching was fine BUT he had a HORRIBLE ear infection.  Doc was surprised he had not complained.  Joseph sat there saying it didn't hurt.  He had a busted eardrum but it didn't hurt.  All he cared about was the itching!  :-)  Life with Joseph.......

His teachers at school, God love them, have made changes to the classroom to help him deal with so many issues.  He was hiding under his desk to do his work because he would say the lights were too bright.  They have now put lamps in the classroom and keep the lights turned down.