karen's katechism on autism and life

Last night was much better, after an evening of screaming, frustration and aggressive behavior towards me as I didn’t say his jingles fast enough! The fingerprints are greatly faded but the pinch areas still hurt… School is great though, loud they say at times but easily redirected with a walk around the campus! Do they have some magical dust that helps korey to calm himself more quickly than at home? Must do some investigative work on that!

Be right back in awhile!!

do not think that word or verb is part of Korey’s thinking or actions, he can go on without sleep for over 44 hours! again this past night now into morning he has been up since 12:15a and is bright and loud now at 7:03a while i feel like perhaps a drowned cat would feel though, mmm, I am still alive! ( never did understand that example!) I do have things to do today so I must persevere! will try to catch up later… have  good day!

Korey has had good days in school, some loudness, ok  at being redirected to get back on task! wish that were so at home, is it perhaps cause we try not to be so regimented, so much a routine, as the world around us is not so rote, so perfect? been thinking if the difference between the 2 environments is too jolting?

am tired, third, maybe 4th night or morning we have been up since at least 2a! going to try to get a couple of hours before the day starts again!!

here it is 3:50a and we have been up since 12:36a, Korey sleeping exactly 101 minutes and myself, oh perhaps, 7:45p to about 9:51p as I was extremely tired, and i guess today again will drag my body around as I have a few errands to do and a dr appt later this morning and then it will be time for Korey to return home from school and the world goes on… he is yelling out “hospital” over and over, with an occasional “cupcake” – can’t quite figure out the correlation between the 2!

i hear the water in the bathroom, he is brushing his teeth, tongue for about the hundredth time this am, he definitely has the cleanest teeth, mouth, freshest smelling breathe!! ok, now am hearing 4:03a start “take a shower”, screaming, “cupcake” the beloved “soda”, “I want soap” ( this in reference to shower!) screaming, “cupcake”, “hotdog” “go home”, “doctor”, “chocolate” “hotdog” “chicken” “oowww” “cupcake” screaming, screaming, “cupcake” “aahhh” scream, screeching, “ooowww” “pass gas” scream, scream, “oowww” “ooowww”, scream “I want chocolate” “pass gas” “hotdog”, – end time 4:07a… he continues with his list! this is a usual occurrence during our early morning along with our favorite “beep beep” and “raise hand” jingles. he yells and screeches so much that he gives himself a hoarse voice! He is now pacing, with his backpack on, skipping through the house, as if this were a lovely spring afternoon and we were in a beautiful meadow filled with dandelions!!!!!!!!!!!! aaaaaahhhhhh!!!!!!!

how Kenny & Kileigh sleep through this melodic outpouring of Korey’s is beyond my comprehension!!!  I may have to study the phenomenon and report back!! that is after I get my “beauty” sleep in ( at this point I would need a complete body and face overhaul/lift!)

I am going to go now and try to quietly occupy my bed, wishing I could “rest my eyes” even for a nano second, knowing I can’t, listen to the skipping foot noises and laughter and screaming of my “energizer” Korey!!!

Korey has been trying to get sleep, he knows he is tired, expressing that fatigue with loud outbursts and what sounds like sad arias from a melancholy Italian operetta! so mournful but LOUD! possibly another avenue to pursue as we build on his path to after high school goals, just kidding but… I hav been asked by many folks is he doing this to avoid going to school? and the answer to that is  a resounding NO! he is frantic about the bus coming, packing his backpack for hours, days (on weekends) with 7-8 bottles of H2O and his chips and unpacking to make sure he has everything and packing up again, then pacing,  the early hours of the morning, night, whatever he may call it depending on what part of the earth you lay your head down on, with this backpack on his back ( duh, Karen, where else would it be!) for hours, refusing to take it off, I guess for fear that the connection to the bus and school would be broken and no bus will ramble down the street saying, “beep beep where’s Korey?” , and definitely would not take him off to the high school! to him the world is simple, black or white, facts only, no hidden stuff or gray areas, functioning strictly un-emotional, straight up or straight down, no in between. and though it sounds so easy and clean, it is not how the world, society functions and that is what is so difficult for Korey.

if he can function on so little sleep, which he does and pretty well it seems from the notes from school in his communication book, that is not the problem. we know many folks who need little or sometimes no sleep to get along in this world. perhaps it is not the thing for you or me, each to his own! the challenge with Korey and his hours of restlessness and sleeplessness is that he cannot be unsupervised or left to his own whatever during these hours as he could create very unsafe situations, the other night, and forgive me if I have already told this little example, he was hungry ( which is typical of teenage guys) and decided to put some leftover chicken in the microwave. As I was in my bedroom, keeping an ear alert to any danger sounds, I must have fallen asleep for that horrid second to be catapulted out of bed by the sound of the microwave door slamming and the magic noise of cooking starting, I gathered myself off the floor, dashed into the kitchen to find Korey smiling, pointing to the microwave and saying “chicken”! then I see 7:54 in the little area for minutes and push the cancel button so hard I broke my nail!!!! though he knows you cook stuff in there and you push the buttons to cook, he has no conception of the preciseness with which this needs to be done. now would anything have happened besides having a disintegrated piece of chicken? perhaps not, can’t take that chance. hence the need to be awake or semi conscious to keep him safe.

this maybe one of his cycles, during which certain behaviors or words or whatever are his obsession. if so, we have 4 3/4 months left as his cycles are usually of the 6 month duration!! hopefully by then I will remember what my name is!!

off to do some laundry, with Korey assisting or perhaps just me supervising him!

(8/28 evening) he is still going on and on, has been up more than he has been asleep…

(Monday 5pm) I had to take a break from last night, yesterday, Saturday, Friday night, he just was wound up none of his medicine worked, he is hopping, skipping almost running through the house… almost as if someone was after him… it is hard to watch and of course when asked, pleaded with or demanded that he slow down, he just laughs and says “funny”! he does stop, finally, to dive in to his other favorite activity, eating!! thank goodness the few dishes I do cook (Dad is our chef, he is the best!!) Korey does enjoy and have chicken in picante sauce over rice just about complete and none too soon! it is really good, if I say so myself!!

it is now after midnight, it is Tuesday, Korey has been sleeping for 90 minutes, finally, after walking the dog 2 extra times, taking our favorite car ride over the hills and 2, maybe 3 showers and oh, yes, devouring some leftover spaghetti, and hotdogs (only 4 this time) and devil dogs (finally available in our state!) -i really need to sleep too but am trying to savor the quiet just for a moment…

i have been reflecting on things I have written, not all of our daily shenanigans are on the negative, and this is not me complaining, what i want to show and let you get a taste of are snippets of how/what life is with autism and how we roll with the punches or don’t roll!

we have lots of fun and laughter and love always! we have days when we are battle weary then just hug up and carry on!

soooo, I am going to sleep immediately or attempt to… talk to you later on I’m sure!