Category Archives: just life
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…
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!
how could things turn around so fast so very fast…
tonight is horrendous again for Korey… he is still up, yelling, obsessing over food, wanting me to repeat those little “jingles” that help him adjust but tonight he is literally in my face, even as I type these words! Kenny has had it at this point tonight, when his sugar is off his usual rock steady persona slides a little! he’s allowed… had been hoping Korey would be able to self regulate and eventually calm himself to sleep as we adjust his night meds and perhaps eventually need maybe only one… i see that is way out in the future now… he is now in my face again asking for soda- he doesn’t believe me that there is none in the house and we will need to go to the store tomorrow… I repeated none, store, tomorrow and low and behold, he is back!!! please this cannot happen all night!!!
tomorrow is Friday-wow, actually in 71 minutes and one more day of school, his screaming and yelling not only keeps him up but his sister too and she has to get up early in the morning to get to school also… i am done… for now, i have to get at least an hours sleep as I can hear its going to be a long night and i have to figure out an answer to help him sleep as he did last night…
karen's katechism on autism and life 