more B12, acryyl-l-carnitine, oral stims/foreign objects

It's been a few days since I've been able to write.

Adam was over at grandma/dad's for the weekend and wasn't doing much terribly new/different, but boy does he get BORED over there, and stir crazy. He has been stimming like batsh1t over the Living Books Arthur game to the point that--like in the stupid living book--he's now asking his speech therapist to spell words in Spanish. The narrative of this Arthur book has something to do with a spelling bee, and part of it is spelling things in Spanish. Note I have no problem with Spanish, but it's a very clear reference to something in this program that he's being allowed to stim on over and over and over. The problem with the household, unfortunately is that he doesn't have much to do, his dad/grandma/2uncles have gotten used to being able to sorta ignore him and letting him do his own thing (relieved that he's no longer causing active trouble, and can self maintain safely), and in the absence of anything structured, he winds himself into a loop of stims because there's really nothing else to do, or no one else really engaging him in anything interactive. We've come a long way there, mind you--the diet and supplements are being followed, but they struggle still to say no to him. He'll melt down particularly with his oldest uncle who's been most supportive of him in the past. If that uncle (or his dad for that matter) tries to set limits and say no, soon Grandma will swoop in, takes pity on him, and endeavors to have people give him what he wants. He needs easy access to alternatives. There, he can't go outside as they don't have a fenced yard, and it takes the strength of an adult man to open the sliding door, for instance. We rescued him on Sunday and took him out with hopes of playing glow in the dark indoor mini golf, but that didn't work out--his recent resurgence of sound sensitivity led him to cover his ears as we entered the mini golf place, and he took in the playground at the mall instead. At least that was something that didn't involve stimming!

Adam had his B12 shot this past Saturday, and it was the first that's now back up at the full 0.1mL dose (he'd been back on 0.05mL previously). When he originally started B12 back in May of 2009, it wasn't long before he started having head ticks--fast movements left or right or slightly up and down where he'd stare at things strangely. We reported this quickly to the DAN doc when it happened, and these are evidently indicators of brain inflammation, so we backed down the B12 dose for a while. He was at 0.05mL pretty much since June, I think, and given that we see him sorta peter out on shot day +3, we're going to try bringing him back up to 0.1mL now that he's had more time to adjust to the B12.

He's also just been started (today, Monday) on that acetyl-carnatine (Pure brand) which we just realized we should hold off on, to see how the increase in B12 fares all by itself. Adam was pretty wacky today perhaps attributable to the addition of the acetyl carnatine, or perhaps it's because we're on day 3 of the B12. Who knows.

He was very oral today, and seemed to be seeking out various crap to put in his mouth, as maybe we've noted in the past week or so. You'd find like a wadded up bit of tape in his mouth that he found somewhere, or some fuzz from something, or he had this maybe 24" long bit of string that the 3 year old uses to connect trucks together...he had that all wadded up and in his friggin mouth today, according to the wife. Bathtime was all about running water in and out of his mouth too.

He did the tantrum thing again today when he got home from school, rolling a bit on the tile floor, protesting that ... oh what was he upset about...ah, that I wouldn't carry him on my back upstairs as he was demanding (that's a pre-bathtime ritual) but instead said "first take your supplements, THEN gawht kaw." He just rolled around saying "Ah Saen, Ah Saen" and I left him be for a while and he calmed down enough. He was tearing little leaves apart there on the tile floor, dragged in from outside on people's shoes. He likes tearing things up again lately, for whatever reason. I ignored him for about 15 minutes, starting to type up this entry, and by then, he apparently had his supplements, jumped on my back, and I took him up for a bath.

He was a little unusual in the bath, but functioned pretty well. He was running every vessel that'd hold water into his mouth and then spitting it out and giggling a little. He was lying sideways in the water too, which is a bit of a new posture for him in the bathtub--haven't seen that before today. He had a good time, and seemed to have forgotten his tantrum. He poured water over his head when asked, but he was flinging the water pretty abruptly and once made a mess outside the tub. This is the sort of aggressiveness or jerky movement enjoyment (throwing things up in the air, making a mess, tearing stuff up) that we saw a bit with the last bit of carnatine, so I'm not sure if this may be the shape of things to come with this new formulation too.

We took a long walk to Grandmas today, and his walking pace was pretty normal... he wasn't really any faster than usual. He did walk the whole way without protest. It's not like the carnatine made him suddenly a speedier walker, I guess it he point here.

He also seems to be having more auditory issues lately, as I hinted earlier. Today, he was holding his ears as we got out to the busy street, and he was holding his ears again in the car when a toy the 3 year old took from grandmas got turned on in the back. This sensitivity to sound seems to come and go. I'm not sure we can really correlate it to anything right now, but I'm going to start trying to track it a bit better.

I should also note that we feel his speech therapy is plateauing here in the past couple months, or he's sliding back a little--apparently this sort of thing happens and bunches of parents report this with their autistic kids. The echolia has come back to a certain extent, but it's still nowhere near as bad as it was a year ago. For instance, every time he comes home I ask him "how are you Adam?" and instead of answering, he'll repeat "How are you?" The slower and more deliberate you say the question, the more he thinks you want him to repeat what ya say. I'm not sure what to do with that info, as stopping speech is not an option. If we stopped, we'd lose our slot with Ms Becca, and there's no way in hell we wanna lose that ungodly talented woman from Nick's life. We'll bring it up with the DAN doc and see if there's anything in where he's at biomedically, or if as I suspect, this plateauing crap is just all part of the journey.

His stimming on commercials, as observed today was less than in the past week, which is a welcome development. It didn't go away, mind you, but all I heard today and this evening were a few mentions of credit card miles. Maybe they managed to keep the friggin internet connected computers away from him over at Dads/Grandmas?

Finally, today, I tried turning off his light tonight in the middle of the night while he slept. Despite him appearing fast asleep, he noticed it immediately "turn on, turn on" the groggy boy said. So, back on went the low wattage light. At least he's sleeping well, which is nice, and he's clear as a bell breathing wise, with no rashes or any skin issues he's battling. At least I didn't catch him in his half dead man sleeping posture. Last week, I saw him sleeping flat on his back, hands tucked under his butt, and his eyes half open, dead asleep. Weird.

Stimmy Saturday and Sunday / Improvements with his Dad

Not much in the world of Adam today. Today, he was pretty darned stimmy, absolutely craving to run around with a cell phone playing videos in his ear, and shaking down all comers for their cell phones. His dad, him, me, and my boy all took a long walk to the park while the sun was shining and that all went really well. Adam loved throwing pebbles in the pond, and he ran around like normal at the playground. He initiated some interaction from a trio of Jr High age girls who were hanging out on the jungle gym. Apparently fuzzy winter boots and wearing your pajama pants in the middle of the day is the new hotness as 2 of the 3 followed this uniform, with the third having on pants that weren't PJ's. LOL. Adam came up to them and said some incomprehensible things to them. Happily, with me around attempting to translate or asking him what he was asking, they didn't get mean in their response wondering what the hell this 8 year old was talking about, or "what's wrong with him." So, kudos to the boot and PJ wearin youth for some sensitivity, I guess!

After we got back, he gulped down some water, and about an hour later, had a near tantrum toward the middle of the afternoon. He either wanted a phone to stim on, or something not good for him and wans't happy with No for an answer. He also got a little destructive, tearing up some paper and throwing it around, and he got into my wallet and threw its contents kinda everywhere in the dining room, with a credit card on the ground and wadding up some receipts in the main section and throwing them on the ground. I caught him in the act of this, told him "no," and he laid on the ground calling "Dah-dee, dah-dee...." like he'd do when he was at our place earlier this week and I correct him for something (he'd call for my wife then).

He is due for B12 tonight, so this would seem to be a data point in our "maybe he needs more B12" thoughts, but Adam's dad reported that he wasn't appreciably different yesterday with respect to stimminess and making messes on purpose.

All this happened over at the in-laws (Adam's Dad/Grandma's house) around the corner by the way... I went there today to take in some football with Adam's dad. I'm thrilled that he's now just one day shy of being 1 month sober, and if I can be someone he can spend some time with without drinking, fine by me--I do enjoy his company when he's sober, and the idea of a boys day watching football is good times too.

This development with his Dad's sobriety is huge for Adam, and for his Dad I think. Getting Adam's dad more engaged will only help both of their recoveries. Big changes I see in his dad is that HE initiated us all going outside to play when it was clear Adam was getting a bit stir crazy inside, and was more than happy to amble all the way to the park and back.

Finally, there were some really cute moments between Adam and his Dad--they were playing a new game Adam seemed to pick up somewhere, where he talks (usually parotting a TV commercial like Capital One), and holds his dad's chin, making his chin move along with words Adam's saying. His dad was trying to do it back to him, but Adam didn't get that in this reverse role, he wasn't supopsed to talk! I got a video of it on my phone... it was awfully cute. So great to see the growth in Adam's dad here as he remains sober. I remain cautiously optimistic that it'll continue. His dad needs to learn how to fill up his time without thoughts drifting back to the drink, and hopefully in Adam he sees some opportunity in doing things with him as ways to keep his mind and body busy rather than just hanging around the house. For my part, I'll just keep engaging him in fun stuff to do with the boys and hope he continues to show interest in participating and keeps his car free of any places to pick up beer on the way home from work.

Expressive Language Step Forward

Grandma said that last night, Adam had a stuffy nose, and actually--for the first time--told her "I can't breathe, Grandma."

Doesn't seem like a big deal to most, but he's never come out and really said anything like this before, let alone in a full sentence. Baby steps...

Then again, right now, he's at his computer with one ear pressed to his right shoulder, the other ear covered by his left hand, and mousing away, talking about credit card miles, assumably to drown out the Veggi Tales DVD in the background. Should I offer him the earmuff noise killing headphones so he can keep his neck straight? LOL.

And then, before therapy today, he had a tantrum over having to get his own coat. On the floor, crying "A Saen, Ah Saen" ("aunt Saen" in Adam's 2nd language). When he was ignored enough, he finally got it himself, and slammed the door a few times to let us know he was mad. He also beat on the van window a couple times to express his anger. Expressing his anger this way is new--usually it'd just be the colossal meltdown. I'm keeping an eye on these outbursts because he's a pretty strong kid, and he knows if there's something that'll get his aunt and uncle's goat, it's pulling the hair or otherwise doing things to his 3 year old cousin. Happily it hasn't been any sort of issue other than a couple hair pulling episodes, but you always have to watch for something new.

Not sure what's up with this tantruming--he had his B12 shot yesterday, but maybe he's having some transition problems getting back into the groove after our long weekend away whilehe's been over at grandma/dad's.