Sunday, January 18, 2009

Too busy to blog?


No, not so much anymore, don't worry! In fact, I even have the next couple hours to blog, if I so desire. Jason took the kids out to do some errands (yes, he's doing errands!!!) and drop our car payment off at my mom's. I wanted to take the kids to the Children's Museum today, but I'm having trouble breathing because of my chest cold/bronchitis/pneumonia or whatever the heck it is. Usually I'm good at long as I don't do a lot of walking around or heavy movement or talk much but today I'm lightheaded and woozy just sitting around. Talking on the phone with my sister last night kind of brought it on worse I think, we were on for like 30 minutes and I was hacking up a lung by the end of it. I'm going to give it a few more days then go to a walk in clinic if it doesn't improve. Weirdly enough, I kind of have trouble discerning whether what I'm feeling is breathlessness (is that a word?) or nausea and a headache. Does that make sense? When I can't breathe well, I get nauseous so it's sometimes hard to tell which came first. I know, I'm strange.

I have this loooong To-Do list in my head, and it is making me insane. I keep the gigantic To-Do lists, and kill myself with guilt for not following through with at the very least writing the list down. Some of the To-Do list is very important, such as Jaymes' SSI review packet. some, not so much, like trying to make Don't Bite The Dog T-Shirts. Who would wear them anyway? Oh, I would! And Jaymes! And Sierra! There's another thing on the To-Do list: I need to learn how to make my site (not the blog, the website) show up higher in autism related searches on search engines. I need to do this in such as way that it doesn't cost me anything, as I pay for that site out of pocket. Ok, it's only $20 a month, but still! I get barely any traffic on that site, I think 2 this month and 8 last month... Vs the thousands on the blog! Come on guys, at least go over there and click the ads to support the site!

Also on the To-Do list is adding more video on the Autism Video Library on the site. I don't have much and it looks cluttered. I'm not sure I really like Go-Daddy's Website Tonight. It's a site builder that is idiot proof (ie Amber proof) but it lacks a lot of functions that I would like. I like to be able to drag and drop items, rather than having set areas on each page layout that can be coded in HTML. My HTML is less than impressive, so I need stoopid proof.

I'm also perpetually adding to the Autism Resources By State listing. It would be nice if people shared theirs (yes, you can do so anonymously if you wish!) so I knew I was getting the ones that people are actually using and recommending... But in the end, it'll fill out to be a nice fat pile of information! I also added a "fun on the web" section, with fun free games that Jaymes likes to play. I actually need to add one, I discovered Mouse Trial, a really useful tool for working with Jaymes. Despite having not quite professional art work (cute though!), it really is a lot like the DTT software I've seen other places. And it's free to try, and cheap to buy. I want to buy it for him at some point. The only real problem with it is, it's an Australian site, meaning Aussie accents. No offense to you Aussies, it's just that Jaymes doesn't seem to recognize the words in that accent. The program will say "click red square" and he'll be totally confused, but the minute I say "touch red square" he does it right away. I have to click for him, I have a laptop with a trackpad and he's really not at a point of being able to understand how to use it. But it's amazing, we went through a bunch of categories (foods, clothing, parts of the bathroom, animals) and 8/10 tries he got it right. He also make my new lappytop sticky with whatever yuck was on his little fingers, but that's ok.

So in between hacking up a lung, obsessing over my To-Do list, and my usual cleaning/playing with kids/going to therapy/etc I've been working very hard with Jaymes on his eating. This has been one of the main focuses in OT, and really the most important to me. It had been that Jaymes would ONKY eat chicken nuggets and fries, or mac n cheese or pizza. Now, the OT (and myself at home) have gotten him to at least try the following:

  • Green beans
  • Peas
  • Carrots
  • Bananas
  • Pasta
  • Hot Dog
  • Fish (this one was last night and I was thrilled!!!)
  • BBQ chicken
  • Baked beans
  • Apples
  • Pumpkin pie
  • Mashed potatoes
  • Ravioli

Probably more that elude me right now. Anyway, once the OT got him going, it's been incredible! Now, he only eats if i sit right there with him, and most of the time I have to feed him like a baby... But he's eating, he's cleaning his plate and trying new things. You can't beat that! He does use his fork some at home, but I cannot figure out how to set his hands up like he's supposed to hold the fork (he just grabs it like a baby grabs a crayon in it's fist) so I just focus on him trying things and eating and making it a big fun game. Unfortunately, though we've had great success, it can't really be treated like a game, and it's not really fun to Jaymes. He treats it as a serious, get down to business type thing, once he's done giggling madly and flailing around. No complaints here, for the time being. In my mind, the first step is trying things, after that he can learn to do it himself and hold the fork properly. I'm afraid to try and correct his grasp, because if I have it wrong, I'll teach it wrong, and it will have only taught him the wrong way to do something. Best leave it to the professionals, I guess.

I don't know what to think about the Clonidine. He has been a lot less angry at home, much more serene and content to watch Elmo and build his train tracks all over the house. However, his obsessive behaviors have escalated to the point that if Sierra takes on piece of track, or a train, he will chase her down and take her down to get it back. The fact that she has ONE piece out of a zillion? Doesn't matter. it's HIS piece. I've tried to make him share, but it becomes a huge blowup. I feel bad for Sierra, who only wants to play but cannot do so without being attacked. He doesn't hurt her, of course, because I'm right there to stop it but if I weren't right there...

Jason wants to take away Jaymes trains entirely. He was all "I'm throwing these away!" last night and I could have strangled him. First off, that's a good $300 worth of overpriced, brand name, Thomas the Train crap. No way in hell are you throwing that away! What a waste that would be. The other thing is that though the train stuff does cause trouble, he really loves it. He builds that track for hours, yesterday he made a giant figure 8 (almost) that went from the kitchen to the living room. He doesn't really use the trains like other kids (who build the track then push the trains along), he prefers to take one engine and roll it until the end of the track, where he adds another length of track and pushes the engine on. Kind of like how they used to build railroad in the old days, piece by piece, pulling everyone and everything along and stopping the train to lay track. The train stuff goes nowhere.

His other big obsessive thing is cans. Like from the pantry. He loves cans. He loves to stack them, to organize them into circles or snake shapes, or just to line them up or lay on top of his pile like a dragon guarding it's treasure. The can thing doesn't really bother me, although he does tend to drop them on his toes then come crying to me, then go back and do it all over again... But it drives Jason nuts and he has a fit over it everytime. It's not hurting anything, I think... But then of course, Sierra had to start ripping off labels so we have all these cans with god only knows what inside. -Warning, Amber's going off on a tangent- One day I was looking desperately for refried beans for a mexican burrito (nom nom nom), and I started shaking the unlabeled cans. First one felt like beans. And it was. Green beans. Damn. Next one was ravioli. Next another ravioli. Then a cranberry sauce. Finally, I did find the refried beans. So there are baggies of ravioli, green beans, and a cranberry sauce in the fridge. Rotten children. I can't really defend the can thing to Jason anymore, because of Sierra's unlabeling. We don't have the spare cash to waste food, and opening it before we want it seems a waste. But Jaymes' therapists say let him enjoy his cans, it's good for him. I agree. Jason says we shouldn't have to bend our lives to Jaymes will, and in a way I both agree and disagree. We do have to change big parts of our lives for Jaymes. I'm fine with this, Jason... Not so much. Maybe I do let Jaymes control us too much, I try to set boundaries and keep him out of too much trouble, but I just don't see the problem with him playing with cans. I've tried giving him blocks, he won't play with them at home. He just puts them into walmart bags and carries them around or sits on them on the couch and won't let Sierra play. At least with the cans he builds and engages in real play. Why should I have to take that away from him? The down side- people look at me like I'm insane if somehow the subject of Jaymes playing with cans comes into the conversation. What, don't everyones kids play with cans of soup and peaches and green beans and raviolis? Meh.

One obsessive/hoarding behavior I do NOT let him engage in is diaper hoarding. If he sees a pack of diapers, or the diaper cabinet is left unlatched, he will take every diaper out and make himself a nest on the couch with them. Wrinkling them and getting dog hair on them and ripping off side tabs as he goes. That's money, so it can't happen. I feel bad, but there do have to be some limits.

We had been doing really well with the no having fits at home thing, until yesterday. Don't know why, but he came home from school, got in the house, and went ballistic when I made him stop climbing the counters. He's like a monkey, up and down and all over the cupboards. I haven't installed latches on EVERY single one, that would be excessive (especially in a house we do not own yet) and he needs to learn that climbing on the counter is dangerous, and will result in immediate consequences. the consequence part is hard though. I make him sit in a chair in the middle of the room. Sometimes he laughs the whole 4 minutes, sometimes he screams and wails and bangs his head on it, sometimes he throws himself off it onto the floor head first. He gave himself some hefty bruises yesterday. I don't know how he manages it, but he seems to get a new bruise every day. Last night, at Walmart, he picked up the front foldy part of the shopping cart (the part that hinges forward so it can be attached to other carts in a long line) and was repeatedly smashing it down on his own legs. I stopped him in midswing the 3rd time, but he'd already gotten himself good.

Do they make iron suits for accident/not so accidental prone 5 year olds? Nah, he'd bruise himself inside one of those somehow. The boy is really a disaster waiting to happen. Lately, he's been so much in lala land that he can't walk right. We were walking home from the bus stop, and he just fell. No rocks, no loose shoelace, just fell over nothing and landed HARD on his forhead. Yep, he's got a bruise there too. The school must wonder about him. I sure hope they know he's a little bruise waiting to happen and that I'm not bruising him! He'll walk right into a wall, or a pole, or into a pothole if you don't steer him very carefully. It's not that he can't walk well, it's that between being totally spaced out, and having kinda bad balance to begin with, he's a ticking timebomb of falling/ramming/head whacking disaster. Poor kid.

It's cold as anything, Batty remains lame and unrideable, and the dogs have no desire to go outside in the freezing nasty winteryness that is January in NC. Me neither.

Anyway, if you read through all my rambling (did I ever get back to the point? What was the point? Hmm) cookies to you! I'm off to take a hot shower and have some peppermint green tea with honey. I leave you with these new videos of Jaymes eating.. and stimming, not eating. Or being odd. As the case may be. Take from them what you will.


Ayla said...

To solve the can problem:

Take a sharpie and write the contents on the top of the can.

Amber DBTD said...

Now why didn't I think of that?