13
Aug
11

What. A. Day.

So I haven’t been blogging much as one can tell. I tend to do some “micro blogging” on FB. I use my statuses and my ‘notes’ area to keep everyone in the loop at one time. I hate repeating myself despite how often I seem to do it!

In fact, I have been using FB almost exclusively forgetting to check my emails! It’s been over a week since I checked my email and there was over 200 of them. Most was junk I could just delete or archive to be read later. A lot were things I needed to be made aware of or take action for. For instance, I have been working with a team on autism-related things, for a particular website, with John LeSieur. I have not been as active as I was initially with that because all action items go to my email—which I had not bothered to log into for quite some time. Oops. I hope he does forgive me!

As many of you may know, I’ve also gotten behind on my school work. It’s not that challenging of assignments either. It’s just a simple matter of getting them done. Read and write. Not that hard for a hyperlexic individual for myself. I do have excuses…er, I mean reasons for this lapse. It’s been too freakin’ hot to focus! Seriously, a record consecutive days of 3-digit temperatures, which each day broke records itself. My feet and legs would swell and I’d *have* to lay down to put them up. And of course, I’d fall right asleep. As I had stopped taking my meds that give me “oomph” during the day to get crap done.

I had stopped taking my meds because my local pharmacy that I’ve been using for 3 years and 4 days as of this writing, informed me that I am not a customer there and they had no records on file for me for ANY of my medication. Say what? I know I wasn’t going crazy! I KNOW I fill all our meds at the Walmart pharmacy as that’s the location that’s most convenient for us. The only places I seem to go these days are Walmart, SuperCuts, doctor’s offices, and maybe the hospital. Having limited mobility and no way to get my wheelchair through my outer door to the outside limits quite a bit of what one can do. Not only if I did find a way to fit the chair through, I have no ramp to get it down to ground level and nothing to then get it into my van. So. We plan trips where J and I can go together so we can “tag team” the effort. Stop one, I go in and do whatever it needs doing. Stop two, he goes in. And on it goes until it’s all done and we go home completely worn out and barely able to bring in the groceries never mind putting them away.  However, lately J’s health has been declining and hasn’t been able to make trips with me; and with my agoraphobia, I’m not going by myself any time soon! LOL

And I don’t know WHAT I’m going to do when we actually physically live in two separate places either. I am assuming I’ll be more mobile because I’ll have a wheelchair accessible place that I can get in and out of. In fact, the place I’m hoping to get is just a mile from Walmart—I could ride my chair there and back easily! All I know is, I can’t wait to get out of THIS place. I keep thinking life is going to turn around magically and be all better if only I could live someplace else. I have a feeling that’s some faulty thinking—as in my health is going to be what it is no matter where I live—but hopefully I’ll be better able to cope somewhere else and that is closer to places I need to be or be able to get to.

So, today. What. A. Day. I woke up at a little after 4 a.m. Why so early? Well, we don’t have unlimited access to the internet. Everything takes “status” as we refer to it. You get so much kb or mb of bandwidth for use per day and everything you do—load a game on FB, check emails, check the weather, watch a video, download a song, etc—takes up bandwidth. Certain programs and games on my computer require bandwidth to play even though I’m not really “online” with it. This really bites. Hughes Net commercials really piss me off too. That’s our internet service provider and the only one that services our area. Call up AT&T and they use Hughes Net. Call up DIRECTV, Dish Network, or any other “satellite” provider—they use Hughes Net. So, we’re stuck. Now, between the hours of 1 a.m. and 6 a.m. CST, USA, is FREE time. Meaning, they do not dock you whatsoever for your usage during this time. This is also the time they suggested that my then 7 year old autistic son watch his videos because he had a hard time understanding that our internet access was limited and he could not watch his videos over and over again the way we used to. Of course, they also suggested we use their tool called a “status meter” that let us know the percentage of what we had left to use. Now, they count 24 hour periods, and it does not flip over at midnight. No, it flips over to new amount of status based on when it was last kicked in. You see, if you go over your daily allowance, you get “restricted.” This means you are now cruising the internet (if you don’t get 504 errors) at speeds SLOWER THAN DIAL UP! THIS is what pisses me off about Hughes Net’s commercials. The lady brags about how fast Hughes Net’s download time is: “You can download WHOLE ALBUMS in the time it takes you to download one song with dial up!” But what she DOES NOT brag about is the fact that if you DID download a whole album—you’d get restricted and be slower than molasses. So what are the options if you get “restricted”? Wait 24 hours—and not necessarily from the moment you got restricted. If you continued trying to download a file that put you over, for an example, when that download stops is when they start counting your 24 hours. If you’re lucky, that is.

Of course, there’s another option. You get one free monthly “token” to restore your service. For this family, that is usually used within the first four days of the month. I pay $79.99 a month for this service, mind you. Even if I paid their highest amount, $400-$500/mo, I’d only get 75 mb worth of bandwidth more per day. That’s like—loading up a game one time on FB. And pages that are ad-intensive are worse because those ads take bandwidth too—each time they refresh and/or reload. Although, I suppose I should be grateful to Hughest Net for teaching me all the ins and outs of bandwidth usage.  The other option is to PAY for a token. It’s $10 a token, or 3 for $25. Yes, we often purchase the 3-token deal because we go through about six or seven a month. I don’t think their meter works right to be honest with y’all because we can be at 86% status left of our total allotment and all of a sudden, minutes later, BAM! We’re restricted! So, our monthly internet bill  is usually somewhere in the $120-$150 range. Nice, huh?

 

Why did I get on this tangent again? I forget my point. I hate Hughes Net!

 

Oh yeah! To explain why I was up at 4 a.m.! So, yes I woke my children up 2 hours before necessary so they could have some “free” internet time to watch videos, download videos, etc. Maybe even play a game. Of course, they go to bed early, too to accommodate this. And since T and B went to bed super early last night, I figured they got themselves enough sleep to get through the day and woke them up at 4:30 a.m. (I needed coffee first). So, I got them up and they played on the computer until 6 a.m. when it was time to get ready for school for real. Their second day of school.

So, I got Bboy to get clean clothes to put on and I supervised him. We’ve been working on HIM putting on his clothes correctly himself. So, it’s been a few years now we’ve been working on this and I’ve been pleased as punch that at least the shorts go over his bottom and the shirt covers his torso—who cares if it’s backwards or inside out. Apparently, the rest of the world. So, we’re moving on to the next step. If he puts it on backwards, and then takes it off to turn it around, it (shirt, shorts, underwear, whatever) inevitably gets turned inside out. And rather than correcting it at that moment, he puts it on again. Then, he takes it off to turn it back to right side out and then back on—hopefully not backwards. It took us 20 minutes to put on a pair of shorts the other day when we were practicing. This morning, however, he got dressed—completely on his own with me just watching—within ten minutes. Hot diggety-damn-dog! I hope this carries through the weekend and beyond!

T gets himself dressed prettily easily and most times remembers clean underwear. Yay, T! He also is autonomous for the most part in the mornings now. He gets everything ready (all his papers are double checked to be in his binder, his schedule is folded just so and placed in the window of his binder for easy viewing until he memorizes it, etc.), dressed and shoes on. THEN he usually plays on the computer until it’s time to go. Doing things backwards this morning really threw him for a loop though and he said he kept wanting to go back to the computer because that was his routine for the past 3 years. He said this as we headed out the door and to the bus stop.

The bus came much later than I had anticipated. I thought it was going to come at 7-something but it didn’t come until about 7:15. Yes, I know that’s still 7-something. But I thought more like 7-oh-something. But hey, that’s good cause that means we don’t have to leave until 7 a.m.! That means, they get to actually finish watching a show instead of missing the last five minutes or so. So, the boys are definitely happier with the new school hours and for the morning time, it works.

Now, though, they don’t get home until closer to 4 p.m. This throws off our whole after-school routine. Between the hours of 2-5 p.m. is T’s peak time for working and thinking. So, before, he’d get home at 3:30 and have a snack, and then do homework at 4. Between 4 and 5, Bboy would enjoy some free time on the computer or TV while I made supper—keeping close by to keep T focused on what he’s supposed to be doing: his homework at the dining room table. Well, yesterday that didn’t work out so well because our table is buried under clean clothes and I’m not back yet into the groove of school time and completely forgot about supper. We had been cooking later because we do not have a/c in our kitchen—we wait for the sun to go down and/or just have sandwiches/soup kind of deal. I wish this weather would get in sync with it being school time and cool down so I can cook before the boys fall asleep from pure exhaustion. While we have had cooler temps, high 90s as opposed to over 110, it’s still not quite cool enough for *me* to cook. So all day I’ve been thinking about how best to arrange our task-based schedule to actually fit the clock of the boys’ bodies. I decided we’re eating out tonight after we do our running around.

So, at 3:30, after the nurse left with my pee (heh), Jerry and I head to the bus stop to collect the boys on our way into town. Darn it, we noticed we forgot the scripts for Jerry’s current health issue and it’s already been four days since we were supposed to fill them. Of course, he was mad I didn’t send our PCA out to do this earlier today because I was napping while kids were at school. Well, he was napping too and it’s HIS PCA too, and HE could’ve woken up and asked her! We’re fortunate in that she doesn’t mind just coming in and doing her thing while we snooze. Some wouldn’t. The rules require us to be available and awake during the times they’re here. I suppose I could’ve left a note for her with the scripts and some money to pay for them—but I just plumb forgot about them. It happens. A lot.

So, J drops me off at the bus stop in case the boys came early, and went back to the house and got the stupid scripts. Of course, I told him where they were wrong, and he had to take a bit of time to find them and while he was doing that, I was standing out in the hot sun. Never was I so grateful to sit my fat butt down in all my life when he came back! Ouch, my back was done for. I think if I ever win the lottery, I’d built a bench with covering there for all those who need to wait for the bus for future residents. There was little shade and little breeze at that point. Oh man and I still had to do the errands!

So, the bus comes finally, and Bboy beebops off the bus, with another little boy and a little girl. No T. The bus driver starts to pull away and I get out of the van. I go up to the window (he had spotted me) and tells me before he could stop my oldest, he got off at his friends’ house, The G’s. Say what? You let an autistic kid get off without written permission? My T is not a small child. His pants are 40 x 30. He’s a big boy. He stands at 5’5”. He’s just about to turn 13. He is *very* hard to miss in a crowd with his Mohawk and forelock hair-do. He’s been riding this same bus, with the same driver, for 3 school years (this is the 4th). How does a child like mine get past you “before [you] can stop him?” I gave up. Didn’t yell. Kept my cool cause Bboy was right there on the verge of panicking and melting down because T. was “missing.”

Jerry confirms with the driver where he was left off. We drive down there, mistakenly stop at the wrong house, the woman who did live there kindly helped us figure out we had to go up the road a piece more. So, we did that. I get there, say hello to the kids’ dad (thank God a grown up was at their house). Saw T. I looked him in the eye and said “Grab your stuff. Now. You did NOT get my permission to come over to school this afternoon before getting off the bus.” Now, their dad was mad. He felt used. He had assumed T. had my permission because he was there. Normally, they do call me before coming to get T. to make sure it’s really okay with me that he spends the night.

Well, this past Tuesday or Wednesday, before school started, I had said T. could spend the night at his friend’s house. I did NOT give him permission to get off with them at the bus stop though. He was to go with us because his glasses were ready—a fact he knew that morning. So, T. knew he was busted and just said “okay” and went to get his stuff. I thought about it while he was gone and decided I was going to make him stay. He seemed really happy to come with me and I got to thinking he must be feeling anxious at being there. Staying over at friends’ houses has never appealed to him. Only recently has he begun to even try. I decided it served him right to stay over. LOL…. So, I told him and the kids’ dad that T could stay. As I was getting into the van to leave, T came out, apologized and begged for his friend to sleep over at our house instead. I said “No. YOU decided to get off the bus. Live with your decision.”  Also, a bonus: I got to go buy his birthday present without his presence! When T hears about how we went to dinner, and went to Super Cuts so Daddy could get a haircut, he will be upset he missed out. I think those natural consequences, plus having to deal with the anxiety of being at a friend’s house during a storm, will be enough punishment. For any neurotypical kid—giving them what they wanted wouldn’t seem like punishment at all. But trust me, for T. it is!

I didn’t get to hear about T’s day but Bboy did offer some more information today without prompting. Not only did he get to give Ms. A a high five instead of hugs and kisses, but they did not have “snack packs Friday” until next week. The school sends home donated food items for the kids to enjoy over the weekend—cereal boxes, granola bars, etc. Bboy, the generous soul that he is, shares with T who no longer receives them since he’s at middle school. Apparently older children don’t need to eat on the weekends? I dunno. He also did not have computers today but he did more “math facts” with Ms. J.M.  He did not say this happily so I am thinking he’s really missing Ms. A and her style of teaching. She is really a gem; therefore, a rare find. How-some-ever, as I have explained to Bboy, we can’t always pick our teachers, bosses, or anyone we interact with. Sometimes we can and sometimes we can’t. So, we have to learn to get along to get somewhere we want to go or to do what we want to do. He agrees that he can work with Ms. J.M. as she is not like Mothra. Okay.

After chasing T. down and making a decision to make him live with his decision, we went to eat first. Bboy was “ravenous” as he said and J and I hadn’t eaten yet as we slept the day away. I asked Bboy what did he have for breakfast: biscuits with CHOCOLATE gravy. What nutrition! And, of course, chocolate milk. At least it’s skim milk? Never mind they have on file STILL the letter from his doctor dictating he is to follow the diabetic diet from the Diabetics Association. Chocolate gravy is NOT on their approved list. Ugh. Well, hopefully the metformin is working for him. I asked what did he have for lunch that made him so hungry now. And he said “A crispito.” I had to look that one up not too long ago when I saw it on his menu. A crispito is a Mexican specialty, a delicate flour tortilla tightly rolled and filled with a flavorful chili. As branded said “I had to choke down the spicy!” And he showed me how he did that: by wrapping his hands around his throat and literally chocking it down. He scared me because he got this weird look and I can tell he was actually choking himself. Did some moron at the school tell my son to choke down his food? I think so. Of course, with him having autism, he did EXACTLY as they told him to do. Literally. Idiots.

So-eniways as my friend who also writes a wonderful blog would write—we make our first stop at Western’ Sizzlin where Bboy orders a cheeseburger and fries, instead of the buffet. He orders it with ketchup and cheese only. It comes with all the fixings on the side of the plate. At the time it came, he was in the bathroom, so I quickly swooped lettuce, tomato, and pickle off his plate lest he see it and not eat any of his $8 burger. Last time he ordered a burger and they put mustard on it with ketchup (how could they miss his singing “Cheese, ketchup, patty on a bun only!” over and over again is beyond me) at the A & W and he wouldn’t touch it, even after I scraped the mustard off and put more ketchup on. Even after I made them make him another burger. The whole idea was ruined. I did NOT want a repeat! So, he came down and pouted at his burger. I asked what was wrong. He said “I thought I said no seeds!” I looked at the bun. Oops. Now, he never had a seed problem before. This is new but is still in line with his liking “smooth” food. So. Now what? I had him take off the top bun and I’d cut it into pieces for him. He threw the bun on the floor “accidentally” and I cut it up for him, about ½ of it. It ate about ½ of the ½ so about a total of a ¼ of the $8 burger. Because of seeds on a bun. Ugh. Sometimes, and these are the moments, when I wish he’d just “get over it.” Having had similar issues, I know it’s easier said than done—but I’ve done it. I want him to do it too. Yes, he’s only 9. But… ugh. I’m tired today. But at least he ate some of it unlike the other burger that came home and went to the dogs. He did eat all his fries and mine that were waffle fries from the buffet. I reminded him that waffle fries are not smooth. He said “yes they are. They have ridges but they don’t have bumps.” Okay.

So, we get through supper and Bboy is very well-behaved despite seeing signs of tiredness creeping in. It’s only about 4:30 p.m. at this time. But having full days in regular education classrooms except for one ½ hour period of time where he gets pulled out for the advanced math help—well, yeah, I guess he would be worn out, huh? I was proud of him because there were other children in the restaurant. I do not know if any of them had autism or any other invisible disabilities but they must have as none of them could sit still or stop from crying, fussing, carrying on and so forth. And none of these children were under the age of five. So, I’m guessing, they all had rough days at school, too. I can be very forgiving of other children’s misbehavior in places because I know how easily it is to judge the parent whose child is literally hanging from the walls. However, Bboy is not so forgiving usually. Maybe he was just too tired to care?

Well, towards the end, one little boy grew very fussy and whiny. Bboy asked where the crying was coming from because the boy was seated at the end of the table kitty-corner from us and a person was in the way of the view. I described where the boy was for Bboy. He asked why was the boy crying? I said “I don’t know. Maybe he is tired?” And Bboy said: “yes, I know that feeling. I get tired and can’t control my emotions either. They go winky-wonky on me.” Holy cow! EMPATHY EXPRESSION! Again! In less than a week! **waits for the applause to die down** yes, I knew YOU would understand how awesome that is.

Now, it dawns on me at this point that I have not really heard too much scripted speech from Bboy. He has not babbled incessantly. He has not repeated scripts from TV shows at all. Except for saying his math teacher is not Mothra, nothing at all out of the ordinary really. Quite odd, indeed. All novel, mostly unprompted communication. Wow.

So, we leave the “tip” and head out to the barber shop. Okay, it’s a freakin’ salon but they don’t have a barber shop here that I know of. And I love SuperCuts! I’ve been to one before and didn’t like it so much. But the girls at this one are really awesome and patient. They’re so good Bboy gets his “Bald Brando” look, where they use clippers on him there. CLIPPERS. That go BUZZ. And VIBRATES against his brain! Of course, T being my little divo, he loves going with me to the salon to get our hair done and colored and styled and all that. One of these days, I might take him to get a mani/pedi at the nail salon. I think he’d enjoy it. 🙂

So, I dropped “the boys” off for J’s haircut and went on to Walmart. I dropped off J’s scripts and reordered his other meds he was out of. I then went and purchases T’s birthday presents and gift wrap, and cards and school supplies that I was gonna purchase last night but didn’t feel up to going out. By time I was done, storm had kicked up some high winds, rain and hail. I booked it back across the street to pick up the boys as I was much longer in my browsing than I had planned to be! We went home cause I was freaking out about the storm and Bboy couldn’t stay awake! He had fell asleep waiting for J’s turn to get his haircut and I thought we were going to have to carry him into the house. I brought in the purchases, just inside the front door, in two trips, and sent Bboy to bed where he promptly fell asleep—in his day clothes, with shoes on. I said “screw it” and went to the office. It wasn’t until after I rested a bit that I got him into pj’s and relaxed a bit more. Then I carried the stuff through the house in one trip to the office to get sorted out before T returns home and figures out what he got for his birthday. I have to hide it though—a really good spot. Every year, T. tries to find his birthday present. Every year, I remind him that if he finds it, it gets returned. The joy of the birthday is he does not know what he gets. Same as Christmas. One year, because apparently I’m a liar, he didn’t believe me and found his present. I returned it. Yes, I followed through so he would know I meant what I said and I say what I mean. Yes, of course, I bought him something else! But he didn’t get *the thing* he wanted. He has to learn to accept surprises as life is full of them! And not always such a good way either. So enjoy the good ones as they come. I’ve been criticized for sharing this before, in public online. I don’t give a damn what those other people think of my parenting. I know I am doing what is best for him in the long run. If I had let him search and find his birthday present before his birthday, I would not have been able to buy him something else for that day. He would have been disappointed as we can only ever afford ONE gift and the past couple of years, my father has been paying for it because by time school shopping is done, and bills are paid, there’s usually nothing left for a birthday cake, ice cream, and a present. And it truly is a life lesson for someone with autism: to be able to accept and appreciate surprises and things that don’t go as planned. So, if someone doesn’t like my decision, they can pound sand. Not to mention the long-term effects of not following through on “threats” we make as parents. *THAT* is how children learn you don’t really mean what you say.

So yeah. There.

:oP

When we got home, after J caught his breath sitting in his office chair, he went to bed. And with Bboy asleep, and T at his friend’s house, I’m the only one still up. And it’s storming outside. Good thing Molly, my Jack Russell/Chihuahua mix is also scared of the storms—she’s almost literally glued to my side right now. Just minus the actual glue.

I just looked at the page count on this sucker as I always write these in Word before posting, in case I lose power or internet, Word auto-saves. Page 7. Holy cow. Guess I better wrap up then!

 

What a day. I think I’m going to bed! I haven’t even touched 1/2 of what happened today. Wow.

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