Kileigh and I are hiding from Korey in my room ( Kileigh is keeping me company!) as I had enough (since 5a, I know better but still…) of the bus diddy, the hand raising, etc., and the dreaded ( to Korey) announcement that today was Saturday and the bus will come again on Monday ( notice the positive spin vs the negative-it ain’t coming today!) Korey melted over the Monday coupled with bus as he knows his days of the week, in fact, i can hear him now saying bus Monday though he definitely is not liking it!!

is it mean to hide, to actually lock the door and pretend to be possums who actually watch tv? hmm, NO. htere are moments when the need to protect sanity prevails and after all I am not 60 miles away above the earth in a spaceship! I am 3-5 steps (depending if emergency and I have big feet) away from the door which quickly unlocks! so there!! I know parents of those “typical” kids who run away from theirs and I mean far far away!!

mmm, it is definitely too quiet out there which is not a good sign, usually means trouble, so, I will be back…

going on perhaps 3 hours sleep he was off to school, I spent the day wondering how he was doing, if that phone call would come… it didn’t and the afternoon rolled around and so did his bus! it was noted by all 4 teachers that consistently in all 4 blocks he was LOUD! and it has continued uninterrupted since he came home, loud, repetitive, in your face, obsessive…

even now, some 5 hours after  he finished his school day, he is wound up so tight he cannot relax, his night meds are non functioning, as if he took placebos! the funniest (?) thing is that he has now closed my bedroom door and i guess he will try to interact with dad and sis, he knows mom is done…

Here it is after 1:30 in the morning and he shows no signs of being tired and wanting to lay down & close his eyes… My head is so tired it is pounding… Talk about the battery bunny, Korey has him beat! It is overwhelming…

something had to give, this cycle could not go on much longer, he couldn’t go on like he was. he slept last night, for at least 8 hours straight, i had to seriously examine all of his meds and their possible interactions or reactions together and make a change (which was relayed to his doc!) and at least for one night, he slept. I of course kept checking on him to make sure he was ok as it has been so long since he actually slept for more than 2 hours! I prayed I wouldn’t wake him up!

He was ok in school today also, though it was written that he was rubbing his neck for awhile. I worry about that also as he does have Chiari and since his surgery in December, we have to be very aware of any increase or return of headaches, neck swelling especially around incision and other physical stuff!

will be back shortly, Korey is screaming…

as the day has gone on, the eyes were actually burning from being so tired. Korey got on the bus this morning looking like he had 12 hours sleep yet had been up since 1a… when he got home from school he was cranky, yet his communication book said he had a great day?!! the explosion came when he returned from a play time at the park- full blown meltdown over a soda, continuing for over a 1/2 hour… trying to help  him calm himself as he was now overtired, overwhelmed and just tunnel visioned… I was trying so hard to think of something that would help him settle down yet accept a substitute for the coveted McD’s soda. finally, i thought try a straw and some ice in his cup, basically the same visual as the fast food soda! unbelievably it worked!!! he was almost empty and I was almost out of tricks – thinking out of the box (maybe?) saved the day, afternoon, moment!!

he is off in his room now, afraid to check for fear he is not sleeping, how could he not? He does need to refuel for the new day coming…

we have been up now for 4 hours, back and forth, closing the lights, him turning them on, closing my bedroom door opening the door, Korey wanting me to “sit down”? it has been trying to say the least. I haven’t yet figured out what is driving him to shut down the need to sleep… it appears his meds are not working or having a reverse reaction, after all these years? at this moment he is obsessing over raising his hand at school… I have a headache!

Korey came home form school today with a note in his communication book that said he was “very loud”. as compared to “how loud”?  i think it is possible that different people have varying thoughts how what “loud” means and the volume of noise that constitutes “loud”!! my idea of “loud” is definitely not the same as say, Dad’s idea. to me Korey’s loud is like white noise, he knows that  only by using his words will i give him my full attention, getting “louder” or screaming does not make the grade or my attention.

wish i could be a little birdie so I could hear for myself, how loud is his “loud ” and especially his “very loud”! then, perhaps I could determine his motivation as to why he is loud and offer some suggestions as to redirect the noise to real communication. any thoughts?

the obvious answer is yes, the magic is to catch it while you can and as “they” say, whomever the hell they are, I am outa here, my pillows never looked sweeter… nighty night!