Monthly Archives: August 2011
rough weekend, ya think?
(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!
chocolate, chicken, i want to take a shower, shut up (said under his breath, whispered)
go to it, was my response to that gluttony of words from my dear son… don’t know if I mentioned before that we have recorded my responses to his various requests and he is kind of confused as he hears my voice but can see my lips aren’t moving when we use the recordings! it truly is something to behold!! it has been an up/down day, perhaps the after effects from the traveling twirling water show Irene with the special guest stars * thunder and wind!! he is very upset at the moment that I have my glasses on!! he wants me to remove them as he repeats “raise your hand”!
he cannot let Kileigh and I have a conversation, he will push his way in and stop our conversing… though rude we are happy he wants to be part of our group!!! later…
for Kileigh, from Korey…
“For there is no friend like a sister, in calm or stormy weather, to cheer one on the tedious way, to fetch one if one goes astray, to lift one if one totters down, to strengthen whilst one stands.”
Christina G. Rossetti
it is true, laughter is good for the soul!
it was another rough day, home and at school, but when we were all home this afternoon we just were overwhelmed with laughter, everything was funny, this was the belly aching, tears rolling down your face, pee in your pants laughing that just kept us rolling on the floor, almost literally! and the best part of all is KOREY was laughing with us, mmm, maybe he was really laughing at us! whatever, he was really laughing and yelling “funny”!! it was terrific! just what we needed… a wonderful stress reliever… even Dad was smiling!
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…
karen's katechism on autism and life 