Slappin grandma? B12 reduction, the return of the Printout

A few things going on with Adam since I last wrote. First, we did pull back the dose of B12 to 0.075ml once every 3 days back on 11/14 to address what seemed to be some new wackiness we've seen in terms of increased verbal stims and commercial phrases being recited over and over. While Adam has spent a lot more time at Grandma's, where perennially, he's got a lot more access to commercial content, we saw enough of the new strangeness back up at 0.1mL that we're pretty convinced he's getting a little too much at that dose. And at 0.05mL, we see him really peter out on day 3, so perhaps 0.075 will be a happy place.

Adam's also running around with a printout again. We haven't seen him with a printout for a LONG time, but his Uncle H gave him one as a reward for reading an entire book to his dad. This one has game show dollar numbers on a board on it and 3 panels of that. The good news is that's the same single printout I've seen him with for about a week, so it's not a treadmill of wanting new printouts constantly as it was back in the days of rewarding him for pooing in the toilet. He didn't struggle this morning to leave for school without it, so that's also good news too. He insisted, however, on taking it to the pool with us on Saturday, but he did leave it in the car--perfectly flat, on his seat, just so as he left the car.

Also, just last night, Grandma reported getting slapped by Adam hard enough that she started to see stars. WTF? That is definitely not cool, and this sort of violence would not be good to see creep into the picture. My first thought: "what is he watching that would give him the idea to slap someone?" As much as I welcome the break we get by him being over there, the unknowns as to how he passes his time there with respect to crap like Nickelodeon, Sponge Bob Dipstim, and the Game Show Network make me know that it's not the best environment for his development. 4 adults in the house and we can't control what's on TV and whether he gets his hands on a computer connected to the internet? WTF people? Grrr. On the plus side, they're on board with the diet and supplements, and Dad's giving the B12 shots well, so I should really keep looking on the bright side. It is exhausting being "Dr. No" to the stim seeker, I'll grant. And, honestly, no matter how much 3 of the adults want to draw the line with him, Grandma just can't stand to see him wail much, and usually forces her children to give in to her grandchild for whom she feels sorry. It's a struggle. And teaching a 70+ year old woman new ways of thinking... well, sometimes you just have to be realistic about that.

In good news, Adam's school teacher reports that he has a very dear friend in school named Angel, and that Adam just loves him, and gets upset if Angel can't be with him. This is somewhat new. He's got some people he's into, but being this attached to someone is definitely a development. The teacher, also reported, upon my asking that Adam's been doing his individual work okay, but she's noticed him no longer participating in group activities as much. I asked her for trends over the past month pursuant to our suspicions of the 0.1mL dose of B12 being a bit much for him. With that info, we made the decision that we were absolutely going to reduce things to 0.075 and see how that goes.

The thought also occurs to me that for all this obsession over mB12, how much is it really doing, and how much is just the variability of the kid over time certainly has crossed my mind. I read an article that was cricitcal of alternative therapies in general that talked about how the placebo effect gets you 30% efficacy all on its own. NOt sure how placebo could affect the mental state of a patient unaware of his own condition, so I'm not sure how much that plays into what we're seeing with Adam, but you second guess this stuff all the time. At least I do.

We have an appointment with the DAN! doc today, and on the question list:

- ibuprofen with no dye, where to find?
- antihistamine
- what exactly is the problem with red dyes and why are we avoiding them in meds?
- what are the symptoms of mitochondrial function issues other than lethargy, and why are we experimenting with carnatine in a kid that isn't all that sloth like?
- plateaus/dips and falls with speech. Seen more echolia return lately.
- what's up with the slapping of grandma? How best to discipline it? (They threatened to bring him to me and he straightened up--he knows his Uncle has no problems with taking things away from him and letting him cry and wail!)
- Biofilm defense - what's with these biofilm protocols, anything to em, anything applicable to us?
- Scoping/pill cam work done at Thoughtful House in Austin - value? Applicable?
- Lousy musculature noted in Adam's shoulders, so much so the school teacher and nurse thought he'd dislocated something!
- increase in verbal stims and commercials noted on mB12 at 0.1mL, and echolia making a bit of a return -- unusual? Or environment?
- Chlorine in pool. Kid LOVES to swim. How much to be worried about this?
- what's up with oral stims running water in and out of mouth in bath and pool?
- lymphatic drainage technique; heard about at Dan workshop. Anything?
- emotional freedom technique. Does that wackjob stuff actually work?


Will see what the doc says.

Stimmy again

Adam's been ok the past week, though yesterday he was really into commercials again. It was the day he was due for B12, for whatever it's worth. I didn't see how he was much the prior 2 days as Aunt and grandma were out of town, but today we spent some time with Adam, the 3 year old, Adam's dad for about 45 minutes, and boy did we hear a lot of 773-202-LUNA and Geico references. I asked his dad how much he'd been on the computer the prior day and he said "a couple hours." Ugh. Turn the fucking internet off for him! How hard is it, people? I didn't comment or preach--lord knows I've done plenty of that--so I let it slide, and maybe Dad drew his own conclusions based on my observation of the commercial stims and the question. But, all the same, you do have to pick your battles, and Adam was happy, and really really enjoyed rolling in the leaves. There was a sensory thing going on there for sure, and he seemed to like the crunch and the feeling of the leaves cascading over him when he threw them up, and all. The boys played well together too, which was pleasant.

Adam's dad's been doing ok, though he's had at least one lapse of sobriety last week. He felt so awful the next day though he hasn't been inclined to go back. It was, inconveniently, an evening when Adam was due for a B12 shot, which his Dad has gotten very good at giving. Apparently, Adam is the least resistant to a shot from his Dad than anyone, so Dad's been doing the last 3 or 4 of them actually, which is a great relief to me. When the other uncle tried to administer the shot in Dad's absence, it became a farce. LOL. Guys without kids caring for kids is pretty funny sometimes. I drove over and managed to calm Adam down enough to administer the shot with Grandma's help. After that Adam calmed down a bit. It's funny how easily Adam will soak up unease and tension in people's voices and then turn around and freak out himself.

Dad has actually done well with grandma and my wife being out of town here the past few days though, and has brought Adam over each day to have the bus pick Adam up here in front of our house. It's great to see them interact more and spend more time together in a positive way.

Finally, Adam had a tantrum last night that was actually Windows XP related. Some computer game he was playing blue screened or something and he just lost it, sobbing, yelling and the like. This was after he got his shot, but not that long after. We haven't seen any head ticks or the like which is good.

The wife and grandma return tonight. We'll probably keep Adam over at grandmas/dad's for another night since they're getting home pretty late.

Night routine live coverage (Dah-ben Dahben three, two oh two.... LUNA )

We come to you tonight live from Adam's bathtime! I'm sitting on the closed toilet, and Adam's in the bathtub right now, being a goofball, doing his repetitive stimming on the very popular LUNA carpet commercial tagline, saying it over and over again. 773, 202 [doo doo doo doo] ... Luuuunahhh!

He's stopped for the moment now mimicking some scenes from an Arthur learning CD where there must've been a spelling bee: "pee i c t u r e." He's also doing the oral stimming again, bringing water into his mouth from the bath and letting it run out of his mouth. I noticed specifically that he didn't do any of that last night, so maybe the B12 makes him stimmier the night of the injection? Who knows. This oral stimming with water drives us batty at bathtime and in the pool...but part of dealing with this junk is picking your battles and trying to not let every little anomaly and non-productive thing they do drive you apesh*t.

The Adam's Dad mystery of last night has an explanation. Dad says he went out to dinner with someone for their birthday, and he said something else quick that implied a "she" was involved. And when asked directly, he claims to still be sober. He stayed home from work today which lent additional suspicion, but he claims he didn't feel like going, has more vacation than he knows what to do with, and is resting up for inventory here soon, where they keep him around for 12 hours or so. I asked him directly if he was bullshittin me and he said he wasn't, so, I'll take that as a better than half chance that it's all as he stated. I'm not aware that he's lied to me before, and has been if nothing else, pretty honest with me about his problems and where he's at. I didn't press for why he didn't respond to my phone message, because that too could have two explanations. He's never been a reliable responder to phone messages. End of day: who knows. He did appear sober and fine when he dropped Adam off, and for that, I'm thankful.

When Adam got home here tonight, he went into the toy room and was playing with the 3 year old's train setup appropriately. That was good to see... he and our son are really about at that same level functionally in a lot of ways. Any time Adam's playing with toys appropriately and it's not something that makes noises, has lights, or is attached to a CPU, I'll take it.

The wife had a pretty good "crazy busdriver" story from this morning. The busdriver, who's WAY more erratic than the god-send woman of last year, and who we know is coming because she's speeding through the neighborhood up to the turnaround yelled at the wife this morning. Adam got on the bus, and the bus driver motioned for my wife to come out. The woman says "You have to keep him home--he's sneezing!"

"He doesn't have a fever, he doesn't act sick--what do you want me to do?"

Crazy erratic woman, we come to learn just got over pneumonia, so we probably had more to fear from her than she had of a special needs kid who's allergic to everything. This also explains why we had a cavalcade of bizarre sub bus drivers the past few days. Nothing like a sub bus driver assigned to the special needs short bus.

Bat-sh*t crazy bus drivers aside, this got us thinking "why IS Adam stuffy in the morning--it's not a high allergen time of year?" Then it dawns on us that that nice puffy new coat his uncle bought him... yup, sure enough, goose down. Doh. This burned us once before when I unwittingly made his bed once and mistakenly put the down comforter (to which he's allergic) on his bed, and puzzled for two nights over his sudden onset stuffiness at bed time. Duh.

Okay, he's ready to come out of the bath. "Adam, open the drain." He struggles a few times. "Up and left" I remind him. He gets it. "Put away the toys." After about 5 seconds (that's how long it seems to take for him to register a response), he starts doing it, and it slowly putting them all away. This is pretty good, actually--better than average. He puts all of them away, and steps out. Starts to nearly shiver.

I throw the towel over his head and he says "I'm cold." I tell him to rub his head to dry it. He doesn't do this well, so I put his hands on top of the towel, and help his hands make this motion. Then I tell him to dry his chest which he does, then his arms, then his hum (his 2nd language's word for his crotch), his butt, and his legs which he now can do okay with me pantomiming to him to give him a visual.

Now, we stand on the 3 year old's stool and he asks me for the hair dryer. I fire it up on high fan, medium heat and hand it to him. We've been working up to that. He has it for about a minute and then tries to give it back. "Turn it off, Adam." He does it.

"Go to your bedroom, get some underwear." He makes a detour en route to the 3 year old's room, I redirect him pushing him toward his room/closet. "Underwear" I say pointing to his closet. "On the floor, in the basket." He's unfocussed, I finally point his head toward the goal and he takes a pair. He thumbs through the shirts to pick one but I give him the one he wore last night. I come out to the hall to type some more. He sits up on the bed, puts his underwear on (hey, he got em on the right way tonight...hrmm... this he seems to be doing better with this finally!), and puts on his shirt (which he's done very reliably now for several months) and his sweat pants. He asks for his light to be turned on, I keep typing... and... hey how bout that, he's figured out how to turn it on with that rolling thumb wheel switch that's in line with the cord. Score for fine motor skills.

"Adam, go brush your teeth."

Right now, he's in front of the mirror in the bathroom. I'm trying to take a hands off approach here and just tell him what to do. He lathered up his hands with soap, and he's looking at himself in the mirror, making exaggerated faces and making Capital One noises and being silly. Now after prodding, he's turned on the water to rinse his hands. For about a minute now. "What's in YOUR wallet?" he asks me.

"Turn off the water, goofy." He does.

"900 dollars a month! No hassle payments. 900 dollars a month!" he says, looking at himself talk in the mirror, thoroughly pleased with his own performance. I'm having an idea that maybe he access to someone's YouTube connected laptop at Grandma's tonight? Toothbrush now moving around his mouth, and he's biting it pretty hard--must feel good.

"Adam, is there toothpaste on that toothbrush in your mouth?" He rolls the soap dispenser around looking at it down on counter level, toothbrush now hanging out of his mouth.

"Did you put toothpaste on the toothbrush?"
"Yeah"
"Are you sure?"
"Yes I am sure," says Adam.

Wow, score one for Adam. Usually you get a contradictory "No I am sure" or "Yes, I am not sure." I had to take over the toothbrushing--he hadn't put any toothpaste on that brush. Rinse, and done. Wipes his mouth on the handtowel, and runs it up to his nose too (ick, but ... ). And off to bed.

He wanders out of his room into the 3 year old's room again looking through his toybox. I get up from the hall, turn the lights off in the 3 year old's room to make him lose interest, and redirect him to his room. He crawls into bed. He's smiling and verbalizing more random commercial stuff to himself. He crawls under the sheet and I kiss his right cheek good night (Uncle remembers just a year or so ago before we took over when that then-poorly-kept mouth of teeth smelled like morning breath on steroids because no one was willing to fight him to get them thoroughly brushed every day--old habits die hard), tell him to have a good night, and he had that big goofy grin like he often has when he's in a good moon. "Good night Adam." "Good night Uncle Tah."

He's quiet... and breathing sounds clear. Ahhhhh.

Goodnight.

Back to some old stims, but some progress to note too

Adam got his B12 shot last night, for whatever it's worth, and had a pretty good day.  He is still pretty darned stimmy though.   Today he rediscovered his "number cards" which are like Uno cards and he likes to arrange them on the floor and look at them.  He used to be full on into this months back, and had abandoned em a while.  He's back into them now, though for some reason. He wasn't too ridiculous with them, however, so it's not terribly concerning.   He also dug out all his computer game CD's again, found a Nemo one, and as he loves to do, drills on down through the file system of the CD to the directory where the video clips are stored, and watches the video clips used in the game, watching them fast forward, then in reverse, watching Nemo swim backwards, and giggling like a drugged morphine addict.     He didn't do it for too long though, and went to bed very easily tonight.  He did ask for my cellphone once today, but didn't seem to be bothered when I told him "no."  Hrmm.   

Good news:  Adam and his occupational therapist have been working hard on brushing his teeth, and by gum, that kid can nearly do it by himself now.   With lots of redirection he'll put toothpaste on, and then slowly brush around his teeth.  I prompt him to spit to keep him from being tempted to swallow the fluoride, and I had to prompt him to flip the brush up so he would brush his upper arch, but he's actually doing the motions and stuff...it's exciting.  I clean up and make sure he gets all his teeth thoroughly covered though, as he's not gonna have that goofy dracula smile again that he had with baby teeth--at least not on my watch!   

Another bit of "hrmm that's new" came today when the furnace repair guy was here and he was about to be taken to Grandma's by the wife.   He goes into the garage and as usual says "take-a the van?" and instead of just going out there and blindly getting into the van as he always does (heading for the back seat--his favorite), he stopped and said "Ah Saen, ah Saen" in a fairly calm way.     My wife got out there and realized furnace dude's van was behind our van.  Adam had put together that taking the van was going to be a problem with where that other van was parked.   He said then "Take-a the Outback?"  and had the biggest grin on his face.   Not sure why it was so amusing to him, but it was cool that he seemed to put together those concepts, and formulate a plan to get around the obstacle.    With normal kids, we never think about this as a big deal, but with Adam, his progress is slowed to the point that you get to see every bit of development in slow motion.  When it happens, it's definitely exciting. 

Adam was also very sweet when I put him in bed tonight.   He had a big smile on his face, happy that I agreed to put him into bed,  after he requested that I specifically brush his teeth, and then when I gave him the usual good night hug, he looks me dead in the eye with a big smile and says  "Thank you Uncle Tah."    This isn't unprecedented, but you don't get it all the time, and it was just a really nice cap out to his day.   

It seems that every day after a B12 shot is a really damned good day for him...I haven't seen a counter data point to that in recent memory. 

Oh, in other news, speaking of shots, we're not vaccinating him against seasonal or H1N1 flus this year,  following our gut, as well as the advice of his DAN! doctor.   DAN practices are all pretty universally against these flu vaccines, since they all have thimerisol in the shot preparation, and the nasal preparations are live attenuated virus.   Besides, I wouldn't be shocked that the long lingering awful chest congestion cough illness he and the wife had 3-4 weeks ago wasn't H1N1, or flu.   With learning this year that Adam very very likely did have vaccine injury as part of his autistic progression, we are extremely cautious as his immune system is very clearly not as healthy as, say, our 3 year old who was breast fed for 2 years! 

Also, my perfectly healthy friend who's an ER doc is also avoiding the H1N1 vaccine himself for now, indicating that for him, he really wants to see how many people stroll into his ER with Guillan Barre syndrome if any in reaction to the vaccine before he takes the plunge.  I've heard several other anecdotes of vaccine researchers, and other physicians who are looking at this H1N1 thing with a lot of trepidation.   There's no doubt it was a hurry up job, it's a relatively novel take on the seasonal flu vaccine, all the multidose preparations have the ethyl mercury and aluminum containing preservatives that we know autistic kids struggle with, and at the end of the day, h1n1 is often a pretty darned mild flu, although a lot more contagious than the regular flu.    If any of us in the autism community trusted the CDC, it might be an easier decision.   But, for us, we're all avoiding flu shots this year.  

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.