Author Archives: tallchicky
it is quiet for the moment…
I am off to bed, am exhausted, the obsessive need to reassure was frustrating for me today… maybe it was the rain and thunder… g’night!
Don’t you sleep horizontal with eyes closed & not vertical eyes open mouth yelling?
I thought so! That doesn’t fly with Korey. He did the horizontal for about 2 hours last night and was vertical questioning bus, oh you know the usual, until the bus came at 7:26a! (good thing he is not so good with minutes as we always say 7:20a!! for the bus!) more later the thunder roars and I don’t mean Korey! lol
loud, loud, loud! PLEASE be quieter!
let’s use your inside voice, I am sure that was the theme of the day at school… Korey finally did go to sleep after getting up/down for over 2 hours after the hotdogs last night! oh, and he ate ANOTHER 4 hotdogs after the initial quantity which I can’t even repeat now as I will definitely vomit!! ( not really but you get the picture) so he slept til I spoke the magic words “Korey, let’s get up, its almost time for the bus!” the key word being “bus”! he got up quickly, ran for the bathroom, ran back in his room running out again with his sneakers and socks on and a tshirt, he has no sense of modesty… thank goodness Kileigh had already been carried away earlier by her bus at that ungodly hour of 6a!! Korey has done the naked streaking more times than we like to acknowledge, even when Kileigh’s friends have stayed over and also relatives have been spectators to his “love of freedom”!
we, me as the director, Korey doing the gathering and dressing, finally are presentable for school, ADL’s are done ( for the newbies or “typicals”-activities of daily living, face washing, teeth brushing, deodorant on, hair at least touched!) breakfast is minimal as he loves to eat at school with the kids, he throws a treat to the dog, flings his backpack on ( after making sure himself that water, chips and fake crystal light are all packed in) and starts pacing in the final 3-4 minutes before the bus rolls down the street… this morning he is out and down at the end of the driveway waiting for that bus!! he gets on, haphazardly waves and is enveloped into the yellow!
once again this afternoon the bus rolls around and deposits Korey home! his communication book looks like a victim of a water fight (open water bottle in side pocket is culprit) and announces AGAIN, that he was loud, loud, LOUD ALL 4 blocks again… have been trying to research, sw doc, rack my brain as to why sleeping pretty ok equates to an ear piercing day? do we want little sleep and quieter days OR lotsa sleep ( or our version of lotsa sleep!) and loud, disruptive days…?
the frustrating thing for Korey is his inability to tell us and even answer our questions on what he is feeling or what is going on in his head, why the need for loud, why cant he sleep, actually anything that could help us help him. and if I am frustrated imagine how he feels!
we have done social stories, inside voice, whisper, pictures, pointing, mime, you name it, it is in our box of tricks! he tries to tell us and we try to decipher and understand… quietly.
how many hotdogs are enough? or too much?
ok, he started out just wanting “2” hotdogs when asked! two turned into EIGHT… and if there had been more he would have eaten them too! i wonder where he puts all that junk? (hotdogs) he is a healthy eater most of the time, doesn’t eat what we consider “junk” food- chips, candy, cake, other useless filler! the hotdogs must have hit the mark as he has retreated to his bedroom… not that that means anything, as we all know by now! after all he is a 19 year old young man and they definitely sing to that different drummer and when you add in that thing called autism, well, look out world! look out family! aahh, he isn’t that bad, what teenage boy hasn’t tried to eat you out of house and home as the saying goes!! and our kids are kids FIRST, then the other stuff is added to the mix! (notice how I masterfully keep in the culinary vein!!, clever aren’t I!!, just like my son!) lol
well, I am going to hit the sack as I can at the moment!! praying that those hotdogs don’t repeat on Korey as then we will be in for a long night!! sleep well…
it has been a quiet, sleepy Sunday, thunder threatening…
guess his lack of sleep during the week has caught up to Korey, he has been sleeping on and off all day which will probably not bode well for tomorrow and school!! he enjoyed his fried chicken before and his potato salad… wants to go to Walmart fell asleep no outing! really have to wake him but yes, I so enjoy this quiet! mmm, think I will finish that book I started reading 4 months ago… thank goodness it is on my kindle, the library would be very upset with me by now!!!! talk to you later!
I think it is safe to go to sleep now…
Korey is actually sleeping peacefully. I am going to take full advantage of this and am heading to bed, will rest my eyes and go to sleep… hopefully for at least, hell, all night, I pray!!
til the morning… enjoy!
its ok to go out without _______? (ie. Korey)
yes, Kileigh and I went out this afternoon, leaving Korey at home. We did lunch and alittle shopping all by ourselves! no interruptions, no yelling for the bathroom, no screaming for soda! no sticking both fingers up his nose saying “funny”! as you are trying to eat!! no Dad getting antsy, sometimes wishing the earth would swallow up our table and we would miraculously appear at home, ahh the safety of home! i understand Dad’s nervousness… I am beyond that… I have had to get over it ( you know that “it” feeling, lol)
don’t misunderstand, I enjoy and relish the moments either out and about by myself, and I have had to force myself to get “out there”, or my time just with Kileigh, who so deserves and needs me but so often ends up on the sidelines, smiling and understanding but I know wistfully wishing there was many more hours to our days…
especially as we get nearer to the time, just about a year from now, when Kileigh will be packing up and embarking on her next journey, on to the university, our time alone is even more dear and precious and damn it, I want it without feeling guilty about leaving Korey or what if he? I do not my daughter, who I love dearly and has endured so much as much as she has learned from her brother, to feel that she wasn’t deserving of my time or she was pushed aside for the sake of her brother. no.
I will always make the time for her.
there is always time for my better half, kenny!
remember, life revolves around a family, not around the child with a disability…
did you ever have to hide?
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…
don’t “typical” kids have chores?
yes, is the most likely answer though probably not like when we older folk were kids. today is the era of “high-priced”” chore compensation, I am shocked the kids haven”t organized yet! (sorry I am a diehard CWA member-retired, actually we are on strike at this moment-that is another thought for another time)
anyway, I ramble… Korey does have chores and since he is not unionized he gets little or no compensation EXCEPT the knowledge that he has done something to help Star (our Schnoodle) and he gets to walk, which he loves to do! He was a lettered”” track team member the past 2 seasons, running the 800, 200 and 100 runs!
getting back to the chore thing, why shouldn’t our kids (ya know the ones with those “labels”) be held accountable for contributing to the flow of their household? even the simplest thing as gathering their clothes “to do the wash” keeps them a sense of accomplishment. so often, they are told what they can’t do or do it better or worse, ignored, what a great feeling to know you are appreciated and you helped mom or dad or bro or sis or whoever does that wash ( the wash fairy!) it may take many sessions (couldn’t think of a diff word) of going over and over what it takes to do what the chore you all have decided will be done, sometimes it only need 1 hands on! use ABA or your own version or make it a game, whatever! the faster we get away from seeing that label in front of our child ( autistic Korey vs Korey who lives with autism) the faster the world really does open up and there is one less chore you have to do!!! yeh!!!
at this point Korey probably has more chores than his sister, I may have to re-examine that as fair is fair!
so, little sleep = loud day?
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…