karen's katechism on autism and life

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!

thought last evening was going to be better, Korey took his medicine, got dressed for bed, even laid down and appeared to be drifting off to sleep. boy was i wrong! around 10:30p he was up, repeating “raise my hand, go to the bathroom” to start with. ok, I reinforced quietly that was correct behavior, especially in school, to raise your hand if needing to go to bathroom or ask a question or request help. all of which he understands and went back to his room! for about 10 seconds, then he was back SCREAMING for the bus. well, quietly I repeated our little jingle for when the bus comes, that calmed him, I quietly, almost in a whisper, directed him back to his room and spoke to him  about need for sleep, the bus comes after he sleeps and he gets up in the morning… worked for about 1/2 hour then the screaming and carrying on started in earnest and continued until about 5a, when i finally just said to him that he had  eaten enough cereal, ice cream, grapes, bananas to last him a few weeks and my ears hurt from his yelling and screaming and not using his words and after he pushed me as he was so frustrated, i said for the hundredth time, if you don’t go to sleep even for 1 moment, the bus will not come and he will not go to the school.

sorry, i had to take a nap, yes, i am exhausted , anyway getting back to the morning saga, so he pondered that for a fleeting second, and i mean fleeting and started crying for medicine, and since he had all his meds for the night, evening whatever until AM meds, i said no and went to my bed thinking he would  go to his room and even just sit there, no-i hear him saying meds in a loud voice,  went back in the kitchen, saw he had an empty (thank goodness) meds bottle so i emptied any and all medicine bottles from any and all cabinets in any and all rooms he could possibly access! at this point i don’t even know where i put them but that at least means he doesn’t either!!!  i verrrry slowly quietly said Korey i am going to sleep you MUST if you want to go to school! he finally did lay down and fall asleep about 5:45a just as his sister got up to get ready for school! it lasted until 8:45 and he was up and ready to get to school on the bus in 3 layers of pajamas… so we unraveled the clothespole he was and quickly readied his backpack and got in the truck and raced to school, being only 1 hr 20 minutes late!! you should have seen the  SMILE on his face…

it was funny to watch Korey go to his sister and dad and ask the same things he does of me and see him be ok with only 1 word responses from them… i, on the other hand, must repeat every word in our little “jingles” and if I miss, have to start all over again…
is it because mom is the major support person? or?…