So, my dad took Iz to the playground today. Our girl doesn't know the meaning of the word shy, as evidenced by her going up to a random lady to introduce herself:
"Hi, I'm Izzy, and this is my grandpa. He wears a wig!"
Not Quite Nanook
I am trying to get my mom to tell me more and more stories of her youth in the wilds of Northern British Columbia, of her father who was a railway man in those same wilds, and of her grandmother who ran a railroad cookhouse in the even more remote wilds. She keeps telling me that she has some sort of Creative Memories-style book that she's going to fill out for me. I think I'm going to start corresponding with her about these amazing semi-fables, too. Heh heh.
Leelo, btw, is doing fabulously, saying Hi to everyone on request and using words (e.g., "put me down") with people other than Seymour or me, instead of just whining or crying. Really great receptive language (i.e., understanding and reacting appropriately to our requests). It is still frustrating to observe that he's probably at least 18 months delayed in so many things, but my mom swears he is doing a lot better than he was just a month ago (the last time she saw him).
He seems much more "with" us these past few days. Whether this is because he's finally, finally, finally after a fucking month of illness almost better, or whether this is because we started another course of Diflucan (a strong anti-fungal/yeast suspension), we'll never know. Oh, hey, maybe it's a result of those B12 shots we started last week before I realized they'd been sitting in our fridge so long they were expired and their sterility was in question? Yeah, me! Go, me!
Back to Sequoia Town tomorrow in the early A.M. This visit was too short, but I'll be happy to get us all back home with a nice weekend buffer between the trip and our regular schedule of programs.
Seymour and I just had a long conversation with my mom about the Sienna situation. As Seymour said, it is odd beyond words to be discussing our potential future as the adoptive parents of a little girl we've never met and who lives a thousand miles away. But again, no one else is stepping up to advocate for her. All relatives who live closer are locked in a holding pattern of denial or hand-washing.
My mom was relating a conversation she'd had with one such relative, who basically threw up her hands and declared it to be "too late to do anything about it." By which she meant way too difficult and fucking complicated and brutal and nasty. Might as well let Sienna rot, in other words--intervening means effort and tenacity and possibly long-term heartbreak.
And then there's the straight-jacketed feeling one gets while sitting around in a comfortable middle-class living room, discussing the very real possibility that the girl in question is being abused at that very moment. That nightmarish feeling of not being able to run, not being able to move when you need to attack, when you need to take action NOW, but are being held back by the worry of whipping up a storm too quickly, tipping off her mom and caregivers, and having them set the girl against you months before you're able to fully intervene.
I hereby invoke some beneficent deity to wrap Sienna in a protective cloud until we can rally all the lawyers and PI's and witnesses we need to make sure her life get re-routed, so that we can make sure she is safe. It drives me crazy to know that our efforts will, by the very nature of the legal system, drag interminably.
Please don't let her rot. We'll be there as soon as we can.
But folks, I gots to tell you--almost everyone's site looks like crap in Netscape 4.76. 'Specially mine.
For some reason, folks don't take me seriously when I am absolutely serious. Perhaps this results from my affability complex, wherein I am afraid to be unpleasant or confrontational or even faintly at odds (Badger, witness my bobbing and weaving after you didn't profess complete agreement with my trashing of brain-filterless M. at school).
One thing I have no humor about is other people cleaning up in my house. See that header to the left? It says Compulsively, because that is the kind of person I am. Compulsive. And anal (don't laugh). The reason my house looks like shit all the time is because I don't like doing domestic tasks half-assedly. Either I'm going to do it the correct, painstakingly thorough and time-consuming way, or I'm going to let it fester. There is no in-between. I've little time for the proper approach, but I do not want anyone helping out because only I do it right.
Used to be I'd let things get really crazy before taming the jumble, as none of our regular visitors care about the mussedlyness anyhow. Nowadays we've Leelo's therapy all day, every day in the living room/playroom/only common room. That room has to be cleaned up--and perfectly so--every single damn day, so that the therapists know where to find everything. This is pressure. It makes me grouchy.
Today we had the fabulous Monday playgroup at our house. The weather has been verging on arctic, so the playgroup was largely an inside affair. Fine. The little buggers did their job, upending and redistributing all playthings with gusto. Fine, I've got my little system for putting it all back together quickly. No problem.
But then all the other moms started putting it all away. "Really, you don't have to do that." I said. "Oh, no problem." They said. "Really, I'm serious. I have a complex about it." I pleaded. "Well, you've got labels on your bins [see! Anal!] so that makes it easy." they responded. "I really don't want you to..." I whined. They ignored me and kept on until pretty much everything was off the floor and back in the bins. Then they left, feeling as though they'd done their duty by erasing evidence of our kids' campaign of destruction.
But here's the thing, my helpful kind friends. I am compulsive. So, after you left, I spent a good long time--longer than it would have taken me to just put it all back myself in the first place--dumping out each and every bin so I could check for and relocate misplaced toys and get it all just so for tomorrow morning's 8:30 A.M. therapy session. It made me grouchy. Goddammit! Listen to me!
Leelo had a screaming fart of a day, with separation anxiety so piercing that he maintained hysteria for the first and only hour of poor Therapist L's efforts. He was a wee bit better for his later session with Therapist F, but still didn't get a whole lot of systematic, cornerstone-type work done. Still, he had good eye contact and spontaneous utterances such as stopping my singing by yelling "I don't like it!"
Iz made a sign for her door, using a white plastic baby hanger (the kind with the solid panel in the center) and a Sharpie. It says "Izzy's Private Reading Club," and is to be hung on her door so that people won't bug her while she's deep in a book.
Off to San Diego tomorrow.
We're off to San Diego (again) for Thanksgiving as of Tuesday evening. Less than 48 hours to wash, prep, pack. Ack! Who wants to feed my cats, nudge nudge?
Leelo had his first B12 shot tonight. Talk about anticlimactic--he didn't even notice! I swear, he made no fuss--and he's usually quite sensitive to such things. Many thanks to Dr. P's staff for the topical analgesic we applied beforehand. We did the deed right after his evening bath but before jammies, as I just couldn't stomach the idea of an injection waking him up. Yet another hurdle behind us.
He is otherwise doing well, although he still has that lingering cold. Fark. It's been 3+ weeks now--he improved but never really recovered. His wavering health coupled with sick and vacationing therapists had made these past few weeks spotty for therapy indeed. He hasn't regressed, according to his supervisor, but there hasn't been much progress this month, either.
Still, we've noticed positive changes. One, he's starting to let us read to him more frequently. For a while, he had very specific ideas about what books he wanted to read and in what manner, and would get very angry if we didn't do it right even though he wasn't able to convey what "right" was. And he is being slightly obsessive over some of his Dr. Seuss books, especially those for which we have both the abridged board book and unabridged classic versions--he puts them side by side, and goes through them page by page, poring over the differences and becoming elated when he identifies identical passages. He's been shredding some pages in his enthusiasm, so it may be time to get him his own classic versions as the ones he's using now are my originals from the 70's.
Also, he is going through a severe separation anxiety phase. All Mommy, all the time, no Daddy, cries when I leave the room or even go to the far side of it. A retired ABA guru friend told me that even though it's making life difficult now (I haven't been able to leave him in the UU church nursery these past two weeks, he gets hysterical), this is a very promising behavior for an autistic kid. Yes, dammit, I am grateful! Plus he's been giving me big bear hugs and squishy kisses, so I'll put up with it.
And I don't let it hem me in completely. Today I took Iz and her cousins Danielle and Elise (ages four, five, and four) to a fabulous, mesmerizing celebration of classical Indian music and dance. I cannot possibly communicate how electrifying this experience was--particularly the gorgeous music and costumes, and talented dancers and musicians. I do wish that the girls had needed less shhh-ing, but they enjoyed it. The Odissi and Bharata Natyam dancers had mad skills that in my opinion should make any self-respecting ballet dancer feel incompetent, and the raga musicians would have had me completely ensorcelled had I not needed to run interference with the girls. However it was the exuberant Dandiya Raas that turned my head inside out and actually made me cry--no performance has touched me so profoundly since Nusrat Fateh Ali Khan.
Below is a picture of San Diego's Patnaik sisters, the Odissi dancers we saw today. The girls got to talk to them afterwards and were amazed that their elaborate, exquisite headpieces are fashioned from fresh flowers. Iz was excited to see their hennaed feet, and to discover that henna comes in red as well as brown. Apparently the sisters have performed with Madonna (that useless bitch, I wrote my complaint about her in someone's comments somewhere: Her prime talent is making the incredible disposable). Anyhow:
Were it within my power, I would wear nothing but saffron-colored silk from this day forward.
Iz has started to announce that she is smart, because that is the response she gets from larger people who are shocked when such a tiny girl can read so well.
I say, who the fuck cares if you're smart, if you don't do anything with it, if you can't figure out what use your intelligence should be put to. The world is full of "smart" fuckwads like Iz's very own mom, who was mentally put out to pasture for most of her education, and so is incapable of debating her way out of the shallowest of boxes. I don't want this to happen to Iz. Or Leelo.
Oooh, and what do I want for them? To develop their brain power to its fullest potential. By which I mean being able to carefully and thoroughly consider and synthesize whatever information comes their way, come to their own sound conclusions, and then defend them if necessary. I do NOT want them to be the kind of students Richard Feynman ridiculed while teaching in Brazil, horrifyingly obedient bodies topped by mental in/out trays, incapable of formulating an independent thought.
I don't care what route this mental development takes, as long as my kids are happily, passionately involved with their own learning. My secret precious hope is that, on top of this, they will treat other students not as competitors but as comrades with saddle bags full of sweet, sticky ideas for sharing.
Intelligence is, again, inconsequential in and of itself, with few exceptions. Insert lame metaphor about careful tending, fertilizing, watering, blah blah for proper flowering. It's sloppy but true--many clever little brains will go to rot unless they are whetted, challenged, and challenged again, until they become nimble enough to parry with confidence.
Unfortunately for my kids, you need the right instructor/guide for this to happen properly, and that just isn't me. I don't have the requisite fire, and would rather drink tea and eat shortbread while they watch Rubbadubbers. If they're lucky, some of their teachers will be divine gifts from above, but there is no point in assuming this is going to happen.
So the guilt is flowing. I feel sorry for poor Iz, and know that, in a just world, her mom would be someone like Badger--a white-hot model for love of learning. Sigh sigh sigh.
No one commented on my fabulous Leelo supplement chart, and I forgot a couple of categories anyhow, so here is the revised version. Show some respect and click on the image below, then tell me I am great for managing to get anything else done, ever. Thank you.
Went down to Dr. P's office yesterday and had a chat with one of his nurses. Turns out my mom was right about the B12 shots. They are fucking intramuscular. That means I get to pinch a big hunk of my little guy's thigh, and then jab a needle into it at a 90 degree angle. They recommend doing it while he's sleepy or sleeping. Right, so he can get terrified of his bedtime because that's when we restrain him and jab him with needles. I suspect that this part is going to suck. Thankfully he only gets these injections twice a week.
Lately I've not been getting much sleep. The result: kiss at least half my mental processing abilities good-bye. Hence yesterday's malformed semi-rant.
What I was trying to say--before I got all fixated on my future as a goatherder--was that you can know just about everything you need to know about a stranger in an instant, if it's the right instant. For me, the most telling reactions involve non-critical, impromptu confrontations such as merging into traffic or who gets the cafe's last croissant. Disappointingly, it has been my experience that, in these situations, most people are dicks. In my area, anyhow. I don't want them anywhere near me or my kids, especially if things get tough.
The other result of sleeplessness is caffeine overconsumption, leading to verbal diarrhea. Apologies to those who were forced to bear today's looping rambles and rants.
I am not saying that one needs to rationalize being a stay-at-home mom. If, like me, you're in that extraordinarily fortunate situation, count your blessings while I pat you on the head. I hope you don't go completely batshit.
HowEVER, if one more patronizing person gives me that sugary "Oh, how nice for you" with the simpering smile that never ever reaches their eyes, I will take this chart of Leelo's supplements and shove it up their butt using my umbrella:
I am feeling misanthropic today.
Possibly because I've been mulling about how many truly useless and crappy people live in my neighborhood. There are too many small-scale Larry Ellison types--they've got the big houses and the big cars and the big smug fuck-everyone-who's-not-me attitudes. Fortunately our crappy little cabin-house faces a nature preserve rather than one of their overbuilt monstrosities, so we just pretend that we live in a forest. La la la, it's just us and the deer, deedle deedle doo...
These people are a problem because, like Badger and Jo, I get preoccupied with theoretical post-apocalypse scenarios (mostly because I'm not sure I'd be of much value. I used to cling to my breeding power, but after Leelo it's more likely they'd sterilize me). These are not the people I'd want to be depending on if resources were scarce--they already get bitchily passive-aggressive if you order that last croissant while they're waiting in line. I just know that they're all going to be in league with Badger's nemesis the macho warlord (see her Nov. 8 entry), and will demand we join them or die.
An alternate take has everyone loving and wanting to barter with us, as we will be goatherders. You want milk, meat, fiber for clothes? Talk to us. We will be openly loyal to Badger and her camp, of course, and will recruit the friendly helpful neighbors for their proven skills as teachers, carpenters, farmers, and athletes/laborers. The small petty croissant-craving personalities will be absorbed into the macho warlord's camp, where they will be valued for their orifices only.
We didn't go the B12 injections route this week. I chickened out after talking to my mom the ex-ER nurse--she thought it would be a really good idea to have our doctor demonstrate giving Leelo an injection before we tried it ourselves. So we added Magnesium Glycinate to his routine instead.
This change in his routine hasn't mattered much, as he's been coughing horribly and continuously even with albuterol, is off most food and drink, and is therefore rejecting most of his supplements anyhow.
Fellow soldier MB mentioned that a stranger had expressed empathetic amazement at all the various substances we're trying to get into our kids (MB's managing an even bigger supplement load than I am). Maybe later this week I'll post an annotated image of Leelo's assorted supplements and meds, just for a hoot.
Been mooning a bit about Leelo's development vs. that of typical kids. Iz and Leelo are one year apart by the academic calendar, even though they're 21 months apart by the Gregorian one. During Leelo's first two years I had all these lovely visions of my little terrors at preschool together, specifically of Leelo tottering off to the introductory sessions that should have taken place this past summer. Obviously, that didn't pan out.
Usually I'm fine with it, as I Just Don't Think About That, and also avoid like-aged kids (easy enough, none of our friends have kids his age). But at Iz's school there's this whole phalanx of Leelo-aged younger siblings who just began attending, and all their parents keep asking me when Leelo's going to start too. I generally mutter something about delayed potty training, but that isn't going to hold water much longer. I guess I'll have to tell them at some point--he is getting bigger and his behavior is getting more bizarre and it's not going to be possible to pass him off as a silly little toddler for that much longer.
But the telling, that's the brutal part. People just don't know how to hear this kind of information. I can tell by the number of people who find this blog however and through whatever links, see the title, and run away as discreetly and quickly as possible. I'll bet Chasmyn experiences much of this, too. Maybe I should rename this site The Adventures of Squid, Her Enormous Rack, and Leelo the Wonder Boy. But I can't--I'm still hoping that someone searching for autism information will find this blog helpful.
Leelo's autism is okay to talk about with the day-to-day friends, they're used to it. It's a comfortable tragedy, no more an issue than Iz's compulsive nose-picking. But having to tell other people our boy's autistic--even if they suspect something's up--truly, I am not looking forward to a lifetime of this. I have enough problems with in-person communications regarding mundanities.
In an ideal reality I would communicate strictly via email (as we did when breaking the news about Leelo's autism to our family and friends). Yet as comfy as that approach would be for this social nerd, it's just not going to happen--I've got kids, they're going to want to go outside and play, and in doing so will meet other kids, and their families, and they will want to know why Leelo keeps gibbering at the sky. Guess I'll just have to buck up, or devise a snappy routine.
This is not to say that I've given up hope for recovery, or at least phenomenal improvement. Leelo just turned three, and there is plenty of documentation about autistic kids who recovered completely even after starting ABA therapy at as late as forty months of age. I just hoped we'd get the sort of fast-track improvement that Catherine Maurice and Karyn Seroussi saw in their kids. I'd hoped his condition would be less apparent by now. What I'd really, really hoped is that I'd never get to the stage where I'd be needing to tell strangers and casual acquaintances that my son is autistic.
Today was the weekly madcap playgroup. A good, pure, yet interesting mom who for some reason likes us bad moms had her well-behaved yet still interesting daughter tell the rest of us how, at preschool that day, she had told her teachers that she was thankful for both her baby sister and her teachers! Little brown-noser.
Really, though, I view this child through slightly green-tinted glasses, as my report from Iz's teachers today was that our girl has resumed spitting. Jeez, could a mom be prouder? I wonder if one of my brothers has given her the low-down on hurling loogies for distance and profit. Maybe she's got a betting ring going on behind one of the train tables?
Our Iz is largely discipline-proof. But just recently I disovered a fabulous way to get her attention fast--the threat of reincarnation! We arrived at a discussion of that and the concept of karma through a series of mental stepping-stones regarding death and world religions, and as the discussion got more specific, she got more concerned.
"You mean, if I'm not a nice person, I might come back as a dung beetle?"
"Yes, but you'd have to be a pretty bad person for that to happen. You're a reasonably nice little girl; I don't see that happening to you."
"But I want to come back as a HUMAN!"
"Well, then, you'd best listen to your mommy and your teachers, don't you think? Only the best listeners come back as humans."
Large-eyed, pensive silence from the back seat.
Heh heh heh.
Thanks a lot, Fluffy. This explains so much:
My inner child is six years old!
Look what I can do! I can walk, I can run, I can
read! I like to do stuff, and there's a whole
big world out there to do it in. Just so long
as I can take my blankie and my Mommy and my
three best friends with me, of course.!
How Old is Your Inner Child?
brought to you by Quizilla
It's probably also why I do stuff like this:
Our friend Floyd, now of AZ but formerly local, is an infamous prankster. I am more hesitant about wreaking havoc and innuendo--being uptight--but sometimes go on a rampage after being needled one too many times. Floyd has a big ol' backlog waiting for him now that he's exited our area, but I managed to get in one doozy before he left.
It was April Fool's day, 1999. Iz was three months old. I has reached that semi-competent, totally ambulatory, mostly isolated, and completely fucking bored phase of new stay-at-home motherhood, and decided that this would be a safe day to get me some payback.
So I showed up at Floyd's work toting Iz. It was a relatively new job for him, and I hadn't visited yet--the front office staffers didn't know me. I put on my best woeful face, and asked for Floyd. The admin asked for a name, and I gave her mine. She asked me if I had a message, and I got all evasive, mumbling about how I'd met him at a work party about a year ago and really needed to talk to him, and had had a hard time tracking him down since he'd changed jobs.
It was a small company--everyone knew everyone else and she certainly knew who Floyd was. Watching her try to digest all that delicious gossip-fodder was worth every bit of effort. She'd obviously completely forgotten what day it was.
"Just tell him I was here." I sighed, tearfully. "He knows how to reach me if he wants to." As if on cue, Iz started wailing. Shoulders bowed, I walked out the door...
...and skipped to the car. Ha!
Sat up with a start, remembering a dream I had in the hour between going to sleep at 2 A.M. and Leelo's waking at 3 A.M. yesterday:
I heard a noise in the kids' room, right next to ours. I rushed in, not turning on the light since I didn't want to wake them if it was nothing, and stumbled against something. It moved. I screamed, it screamed.
"What is going ON?" I demanded.
"Please don't hurt me," the man replied. "I'm a friend of Badger's, she said I could come sleep on the floor of your kids' room."
"Let me turn on the light." I said.
"No, please don't!" He said. "You'll never trust me if you see what I look like right now!"
"I'm sorry, I have to." I replied, and flipped the switch.
He was a sad clown.
Me: sinus infection all week long. The kind where all the mucus inside your nose and sinuses turns to glue and you cabn't breed through your nose and have nightmares about choking on something even if ever so briefly because you know if that happens you will DIE.
Leelo got better! Had great therapy sessions all week! We added MG/K Aspartate to his supplement regimen, he has had faboo eye contact all week but lots of spazziness too. Wonder if we will ever get one without the other. Still has a running snot tap for a nose. We are going to >shudder< start the B12 shots tomorrow night. Pray for us.
Iz got a tiny metal splinter stuck in the edge of her iris somehow, possibly from our heating system (so I am writing from a very very cold house as the furnace is off until we can investigate things properly or at least until the HVAC guy calls back). Late-night Urgent Care folks said, yaaaaah! We don't do that kind of work here, take her to an opthalmologist in the morning. The opthalmologist did indeed take care of it, and Iz is dandy, but dealing with the hair-pulling bitchfest between her office and that of our pediatrician (from whom I had to extract an emergency referral) was so brutal that I was in tears by the time we left (yes I am a total suck). I then had to deal with the offices each calling me up to yell because the other offices called them back and yelled at them for making me so upset--PEOPLE, YOU ARE PROFESSIONALS AND THIS IS NOT JUNIOR HIGH. Get fucking lives!
We had our three-year checkup with Leelo's pediatrician on Thursday. It went well, and they did not make me give him the hepatitis vaccine they'd been bugging me about as it is voluntary (even though they assured me it is preservative-free).
I firehosed the good Dr. G with doctor-speak info (Lovaas articles, the DAN protocol), gave him books for his prickly wife to read (Let Me Hear Your Voice, Karyn Seroussi's Screed) so as to help dispel her prejudices against ABA therapy or at least get her more informed on what we're doing, and gave them an edited version (no mention of BioSet) of my write up of our Biomedical approach to Leelo's restricted diet, supplements, yeast eradication, anti-antibiotics, and chelation. Plus copies of Leelo's hair, blood, urine, and stool tests.
Dr. G took it pretty well, laughing about his "homework assignments," although I think he probably won't give it all more than a cursory glance and his wife will toss it into the dustbin the first chance she gets. I also volunteered to talk with any patients that may be starting down this painful path, but from the looks in their eyes as I was leaving it seems they'd be more likely to protect them from me.
Things I forgot to address this week because I barely remembered to wipe:
- Acknowledgements of at least two friends who have new babies. Sorry! I'm over babies, my friends and family have all had too many lately and I can't keep them straight. (NOTE TO DEE: Artoo is no longer a baby. She's on my radar, never fear.)
- The illness of Seymour's Grandmother who is a Christian Scientist and won't go to the doctor but has mysteriously lost 20 pounds in the last two months and is largely too weak to get out of bed.
- My brother's negative Cystic Fibrosis test results, which came in two weeks after his pregnant girlfriend's came back positive.
- The elopement of two dear friends who decided they'd rather just avoid trying to arrange a ceremony that would please their 20-odd contentious kids, grandkids, and great-grandkids.
- The aliveness of my silly Canadian cousin who is currently teaching English in Saudi Arabia and who didn't get blown up in the assault on foreigner's lodgings this summer or last week.
Tomorrow a new week begins! Rah!
Was up at 3 A.M., raring to go, and is STILL up. WTF? We are launching a counterattack that consists of marching his little butt on a two-mile loop up to and into some rock-climbing caves, and not letting him sleep a wink until his legitimate bedtime. Ha! We'll see who's wakes with the roosters this coming A.M.
I do. So do my kids. So it's amazing that I got Iz to sit still for 15 minutes to apply the henna paste (three bucks for a ready-mixed tube at our favorite local Indian grocery), and then another 30 while it set. Results:
Not sure what else one does when one's children ask for a tattoo "Like yours, Mommy!"
After a grinding week of crapola and sickness and metal splinters in eyes and appointments up the wahoo and non-simultaneous school and work holidays, I begged for a respite and went to bed at 8 P.M. last night. So the huge steaming pile of gripes that was supposed to arrive yesterday may arrive later tonight. With extra spice, if tonight's party for Clyde (husband of Ep, does that work for you Jo?) is as top-heavy with alcohol as I hope--the man IS Scottish.
By the way, many of you find the Legolas (Orlando) vs. Aragorn (Viggo) debate divisive. My final statement on the matter is that, even though I've had many a randy daydream about Mr. Bloom, Viggo is far more likely a conquest for this girl. See, he used to be married to Exene Cervenka, and--though it makes me angry and is the reason why I no longer sport bangs---I used to be slammed against the wall by many an over-enthusiastic punk/goth girl yelling Oh MY GOD you look JUST like EXENE holy SHIT!!!. Historically, I've got the goods that Mr. Mortensen wants. Nyah nyah nyah.
I know it's been breezily boring here for the past few days; being on Overload is my excuse. If you can stomach my blabbing about The Fabulous Miss Iz, then here's an amusing interlude before the hard-core bitching hits these shores tomorrow:
Opthalmology Assitant to Iz: How old are you?
Iz: Four and a half.
OA: Are you going to kindergarten next year?
OA: Do you know your letters yet?
OA: What is that letter?
OA: And this letter is?
Iz: "A." And that sign says "Saturday Appointments Available for Everyone," and that other sign says "An Australian Alphabet."
OA: (momentary silence) Ah. Well then.
Since search engines don't crawl this blog anymore, I can write whatever I want! Today's Misleader.org "Oh, you've gotta fucking be kidding me" headline:
ADMINISTRATION BEHIND WEAKENING OF MERCURY STANDARDS IN CLEAR SKIES BILL
Recently, the Bush administration provided revised environmental modeling data in order to justify an increase in the allowable level of mercury pollution, a departure from Bush's earlier claims that he "believe[s] that by combining the ethic of good stewardship and the spirit of innovation, we will continue to improve the quality of our air and the health of our economy and improve the chance for people to have a good life here in America." The White House web site boasts that Bush's Clear Skies legislation "cuts mercury (Hg) emissions by 69 percent -- the first-ever national cap on mercury emissions."
Read the full Mis-Lead -->
I like Blogger now. I can upload images now. Here is me bringing Jo a birthday cake:
Last night, as I was looking at Leelo's rice bread and just getting really bummed at the idea of another toast-and-nut butter meal, I had a revelation. We have gluten-free pancake mix, yeah? Yes we do. So I did it. I took the rice milk and the egg substitute and the Arrowhead GFCF pancake mix, added a few dried raspberry bits, and...Reader, he ate them. He did! HE ATE PANCAKES! Dry, with nothing on them since there is no such thing as soy-free margarine and syrup has too much sugar. This is the first new, sanctioned food items that he's allowed to pass his lips in three months. And he not only ate them, he demolished THREE of them lickety-split. And...just when I thought it couldn't get any better, Isobel ate some too. And said they were good!
As you might guess, it doesn't take much to make me happy. I spent the rest of the evening dancing around, driving everyone nuts with my little song, which you can now sing too (to the tune of the first two lines of Surrey With The Fringe On Top):
Look at me, I am so clever!
I had success in my endeavor!
The best part is that we've dispensed with our dried raspberry waste issue. Leelo is addicted to these horribly expensive dried raspberries from the good folks at Blackbird Foods. I don't know why he craves them--they are cheeks-suckingly tart--but he does. But only about 2/3 of the raspberries make it home intact, because they drying process depletes their drupelet cohesion and they easily crumble. So I'd hoarded about a cup of raspberry bits in the hope of finding a use for them, and voila! Raspberry pancakes.
Party of my giddiness stems from congestion-derived oxygen depletion, I think. My dear friend Djinn came down for a hike this A.M., and I spent the entire 2.5 miles of a trail I hike all the time gasping like an emphysemic. My own fault. Unlike Dee, I am pharma-phobic, and hate to take the cold/flu meds unless threatened or prostrate.
The dreaded flu bug has hit Therapist L, who was supposed to come in this afternoon. Iz is home from school for Veterans Day. Everyone else went to the zoo. Hmmm. Sounds like a worryingly slow afternoon at Casa Rosenberg. Perhaps we'll go surprise Seymour at work. Heh heh heh.
Finally added Layne to the links list. She is mega-public, no need to ask for permission, methinks. Hers is the giant sticky bun of blogs, a well-written mix of sensitivity and sensationalism with a sweet gooey center. Impossible to stop reading even though I wince each time she lays out the tastiest parts of herself for the circling sharks.
Last week Seymour disappeared for a while, and when I finally located him he was behind the garage, gobbling up the newly ripened prickly pears using Wyoming's harvesting technique. Only got one sticker in his hand, which is pretty fair for an amateur.
Leelo has been with therapist L for half an hour as of this writing. Willingly, happily. Demanded that she sit in the chair and play with his new Mr. Potato Head (which he already knew how to use, owing to school I'm guessing. So much for my anticipated big Teaching Moment).
Here is what happens with just about anything in my life: If I publicly ridicule it, then it's going to come back around and smack me in the ass. As it has with Leelo's supplement regimen. He was freaking out, we didn't know why, what supplement, we introduced a bunch at once, aiiiigh I'm sorry we'll follow directions now.
Last week we scaled back to the basics: Nystatin (anti-yeast), Lactobaccilus (pro-biotic), Vitamin B6, Zinc, Folic Acid, Calcium. We're going to re-introduce one supplement a week. Last night it was K-Mag aspartate (Magnesium) as the DAN protocol (which Seymour's been re-reading) says B vitamins without Magnesium can have adverse behavioral effects. Shit. DAN also warns against taking Zinc with other supplements as it can interfere with absorption. Huh? Dr. Prattle never mentioned this. You're supposed to wait a few hours, as you do with Calcium vs. Fluoride. Seymour has the day off and is using it to do more research and write up questions for Dr. Prattle.
I called my Great-Auntie Diamond a couple of weeks ago. She's Sienna's grandmother and Sienna mostly lives with her and Lana, Diamond's niece. I was trying to talk to Lana, since she's the one who is monitoring things in Sienna's best interest and also the one who is getting married in July and then bailing on Sienna and Diamond both. Again, it is not my goal to interfere, but rather to get as much information as I can to determine whether or not an intervention needs to take place, whether or not Sienna needs to be pre-emptively removed from her mom's care since that's where she'll be going in July if nothing else happens.
Well, I didn't get to talk to Lana. She was out, so I chatted with Auntie Diamond who, if it's within my power, is not going to know about any of my machinations re: Sienna if it turns out that things are under control. I was also ready to do the phone version of nodding and smiling with a dottering old lady, since my mom and her sister Auntie F had told me that Diamond was losing it big time. Plus Diamond hadn't heard from me for a while. Already feeling guilty, sneaky, and dirty.
And then more so. Diamond may be completely in denial about her loser druggie daughter and what that means for Sienna, but she is otherwise still completely lucid and of this earth. And, turns out I was so absorbed with everything that was going on with Leelo that I never remembered to call or write with our condolences when Diamond's husband of 62 years, Great-Uncle Benz, died this past Spring. Go Squid! Sputtered apologies, promised to come visit soon, asked her to have Lana call me.
Then madly dashed her off a letter of apology and sympathy, including a copy of the Hey People, Leelo's Autistic letter that we emailed to family and friends this past June by way of explanation for my major fuck-up. Put it in the mail.
It's been two weeks. I still feel like a complete ass. Lana hasn't called--I've left messages with her dad, too, but he's the one who gave me the polite Canadian version of Fuck Off in the first place so a reply isn't likely. I can't really call Auntie Diamond back as she'll get suspicious of me wanting to talk to Lana. Auntie F, who is usually the go-between, is in Australia for two months.
I can't even properly write down my worries here, but here are two big ones. Apparently Sienna is spending increasing amounts of time, especially nights, at her Mom's place. With her shady teenage brother and his complete lack of morals--he is an unsocialized wolf boy. Also Auntie Diamond commented that Sienna took Uncle Benz's death in stride--it didn't seem to affect her that much. This man was for all practical purposes her father. How fucked up is her head already? She's only seven.
This sinus infection has made my head all cottony. I can't fire the old synapses properly. Does this rambling about Sienna make sense? I feel like I'm dancing outside the city walls, yelling and screaming and no one inside will acknowledge me, even though they know I'm there. The guards will continue to bar the gate. I'm going to have to figure out how to scale the walls.
This is odd. My blog is no longer search-engine perusable. Which is good protection against being Googled by my mom, but not-so-good for people who might sift helpful information from the bitching and moaning.
Or, as Seymour just said, "Can you believe it's been three years since you squeezed that little guy out?"
Anyhow, a bit of backtracking:
Friday's GGRC evaluation was hell. Leelo hit the wall right after the last post. I couldn't reschedule because the evaluation had to take place before his 3rd birthday.
It was me and Leelo and a tiny conference room with two doctors and two social workers. Leelo cried and whined and mostly refused to participate, but amazingly was still able to demonstrate what a different boy he has become in the 9 months since they saw him last. Multiple delays compared to typical three-year-olds, but steadily improving. They seemed pleased that we are doing ABA, OT, DAN diets, etc., pumped me for details, and clucked a lot during what I am guessing were "correct" answers.
As the session wore on, the lead doctor stated that Leelo would continue to be eligible for services through them. Fine, expected. He then strangely offered me the choice of two diagnoses for Leelo: mentally retarded or autistic. I, uh, chose the latter--what the fuck was that about? No one has ever mentioned anything about mental retardation to me before except the semi-useless child psychologist from a year ago who said he definitely wasn't. These GGRC people deal with ten families like us every day, so I guess springing shit like that doesn't really faze them.
They made a final attempt on one of their tests, and got him to correctly and spontaneously verbally identify about 50 percent of their picture flash cards (between yells). At last, they then declared the evaluation over (probably because my stress-sweat had stenchified the entire room). There is an additional next-steps discussion that I need to have with the social workers, but Leelo doesn't have to be there so we rescheduled for next week.
The next 24 hours were an odd bubble in time as an amazing number of errands were run, further appointments rejected by Leelo, activity books were finished and submitted in time to avoid Kinko's, Iz was retrieved from altruistic Jo, the house became not only clean but party and guest-lodgers ready, relatives arrived and were chatted with put to bed woken up and breakfasted, every pot in the kitchen was used at least once--and somehow it all got done and then the festivities were upon us.
Leelo's birthday party was a whole mess of fun. For us, anyhow. And, despite sleeping through the first half and being grumpy for the next sixth, he really seemed to enjoy the last third. Tolerated us singing to him, had fun with the jumper and parachute. Didn't eat a friggin' bite of any of the food set out for him (and I whipped up all that theoretical food somehow, excepting the pakoras which we may have for dinner tomorrow, and the meatloaf which ended up being more of a meat pile).
All the kids seemed to have a good time. Some partygoing parents may not forgive me for allowing their children unlimited access to bodypainting crayons, but the kids loved it and the party was for them. I did warn everyone to dress in grubber wear. Iz and her cousin Danielle must have gone through at least 5 design iterations, finally settling on full black face Coal Miner since it went well with the party hard-hats.
Lovely moment: sweet Moomin (age 3) asked Leelo to please not be sad during his grumpy phase. I asked Moomin if Leelo's crying made him worried (M. is a sensitive boy), and he said no, he wasn't worried, he just wanted Leelo to be happy. Earnestly, seriously. That boy is going to have the swoony girls fawning all over him in high school.
Ep's poor boy had to go home early, as he was set upon by a fast-moving fever. True vegetarian Ep was probably grateful to get away from the smell of the meat pile.
I swear it wasn't Iz moment: My extra-shy niece Leigh, who had come up from El Lay especially for Leelo's birthday, decided that she was going to use this party for her first attempt at "making friends." So, she went up to one of the other girls and said "Hello, my name is Leigh." The other girl said "So?" Thankfully Leigh didn't even notice the slight; she was too pleased with herself for having completed her mission.
Perhaps I should clarify my stance on presents and goody bags, having gotten a few wounded reactions from my rant: Anything you put thought and effort into is fine by me, be it a goody bag, letter, or art installation. Obligatory, knee-jerk, pressurized presents and party paraphernalia are what I don't cotton to. And the children seemed to get a kick out of the Chinese fingercuffs, so there.
And that's about it. Woke up today with the equivalent of the post-finals flu. Probably psychosomatic excepting the nasty sinus blockage, but Seymour kindly watched the kids most of the day anyhow while I slept and ready trashy murder mysteries and got my bearings back. Nighty night.
Leelo seems better. He had great occupational therapy and speech therapy sessions this morning (offsite) but still had a fit when we tried to do ABA at home. He knew I was still around and so howled until poor Therapist F said maybe she could come back on Monday when he's 100%. Fine.
Got the homeopathic solutions from Dr. P's office way the fuck down in Los Altos, and, upon getting home and opening the bag realized that his staff had forgotten to include the instructions. Go team!
But, a small miracle occurred in that there is an insane party store almost directly across the street from Dr. P's office! And all its Bob the Builder paraphernalia was on sale! So, that got to be an on-the-way errand rather than a special, time consuming trip. Oh happy day.
Leelo also slept well last night, so I got some work done on the activity books. They'll only be four pages long, but that's just going to have to do.
And--another respite--Seymour's brother, wife, and two girls who will be staying with us for the weekend got stuck in L.A. and won't get here until the wee hours! More hours to be frantic and get stuff done without entertaining guests!
Leelo and I are off to his exit exam for the Golden Gate Regional Center. Those are the folks who funded his preschool and initially not-quite-diagnosed him (i.e., these are the people who said "If he was three, we'd call him autistic). We're seeing the same crew this go-round, so perhaps they'll give us a formal diagnosis! Perhaps they'll give us additional funding for special ed classes! Perhaps they'll declare him cured and give him a lollipop!
Party should be fun. We'll be thinking about those of you who can't make it.
I am reading Matilda again, but this edition has two batches of page 177-204 and no pages 112-176! If I can't remember where I bought it, what is my recourse? Should I just send it back to the publisher and demand a replacement?
Ah, poor Leelo, he is still a miserable little inconsolable sicko. Won't use words. Won't sleep (except cat-napping in the car). Won't let me put him down most of the time. Won't be pleased by anything that normally distracts and happifies him. Will only cry and whine and make me pick him up then put him down then pick him up then put him down and look at me searchingly, silently pleading for an end to his pain. Daddy is unacceptable. Mommy only, all day, every day, for the past week.
Another trip to his pediatrician this A.M., who said no strep, no bronchitis, but definitely a sinus infection and that means antibiotics. Fark. Put a call into Dr. P who said no antibiotics yet--try this three-pronged 8x/daily barrage of homeopathic remedies and let's see if that works first. If by Saturday night there's no improvement, then antibiotics. Leelo will still be in homeopathic wait-and-see test drive mode during his birthday party. Yeah!
I'm not very efficient under optimal conditions, so all this is greatly affecting my party-giving abilities. I like a good bash, and usually spend the three days beforehand doing all the relevant errands. When I tried going to the grocery store yesterday, Leelo screamed non-stop unless I held him on my hip--at which point he turned the volume down by about 50% but kept at it. Doesn't bode well for the trips to the insane party store and other grocery store. Lordy lordy lord.
Seeing as Leelo is being distracted by Bob the Builder for a blessed few moments, I will tell you about his theoretical birthday party; the one I imagined would happen rather than the tatty chips-n-dip affair it will probably end up being:
One goal is a completely Leelo-friendly menu. No wheat/gluten, dairy, soy, peanuts, eggs, sugar, citrus. Partly this is practical, but there is a self-serving aspect since I am sick of people going on about poor us having to eat crappy bland complicated food substitutes. Here's our yummy, bulletproof menu:
West African Nut Stew w/pounded rice balls
Pesto and tomato pasta
Meat Loaf (Seymour's carnivorous brother might faint at a completely vegan affair)
Roasted potato and vegetable salad
Guacamole & Tortilla Chips
Vegetable and Fruit Crudites
Pineapple Velvet Cake (the boy gets one sugar exception on his birthday)
Gastronomically, it's a global hodge-podge, united only by the thread that Leelo could eat every last bite if he chose to (though he won't touch 95% of it). Just TRY offering him tequila.
The other goal is: no goody bags! I hate hate hate goody bags even more than I resent people bringing presents to a party after I ask them not to (can't we just eat, be merry and celebrate without laying out all that cash for toys and goods that won't fit in my overstuffed house anyhow?).
Goody bags are becoming de rigeur for kiddie birthday parties, to which I say: fuck that, and fuck the pressure that makes the average goody bag cost $15. I prefer to hand out silly activity books and crayons, things that the kids can actually use for more than 5 seconds, and which might even trip a circuit in their brains. But since I don't know if I'll have time to get the crayons and books together, I have a backup stash of Chinese fingercuffs to hand to anyone who asks where the goody bags are.
Today I was almost side-swiped by a lumbering SUV designated the Pathfinder Armada. Does that mean that I can re-christen my nimbler car the English Sea Dog and go after those misguided fools with my cannon?
Yes, politically and globally and as represented by our governments, we are all stupid fuckers. But sometimes it's funny as hell! I mean, if hell was funny. Anyhow. This made me snort and chorfle at the end of four very long days with a 24/7 sick little boy. Who is still nowhere near better.
Rah! Dr. P has approved Albuterol for our boy. With the caveat that it might make him a little hyper. He must mean more hyper. Whatever, as long as Leelo sleeps better.
Scabby and Pat thought that Leelo's chicken soup smoothie was fabulous. But then, they spend an inordinate amount of time licking their own butts.
Being cats and all.
While polishing off some autism-relating reading last night, I was reminded of one of the biggest hurdles for a vegan diet: vitamin B12 deficiency. Leo has been a vegan for five months now (his choice: he can eat meat but he never ever has), and he's been cleared by his accupressurist for B12, so what's the hurdle, you say? Well, I'm supposed to be giving him vitamin B12 shots. Yeah.
Dr. P told us that it is easy if we keep the needle at a 30 degree angle and do the injection after he's asleep. Again, yeah. We may need Dr. P to give us a demonstration, as even our veterinarian showed us how to give our diabetic cat her daily insulin shots.
It usually takes a while to get in to see Dr. P, especially with our therapy schedule. Until then I am renewing my Eat Meat campaign. First skirmish: this afternoon I decided to give that chicken soup another shot. Added water and salt, heated it to a pleasantly warm temp, blended it smooth, and put it in a sippy cup. Then I walked over, handed it to him and said "Mmm, yummy soup!" He gamely took it and sucked down a big swig--then turned on me with a shocked and wounded glare, as though I'd given him Drano. He also gagged, threw the cup across the room, and retreated into the corner--backwards, so he could keep an eye on me, the torturer, the entire time. Christ.
Everyone in our neighborhood is either sick as hell, or recovering from being sick as hell. No exceptions at our house.
Leelo's got the worst of it. He has been ill in not necessarily the most intense but definitely the most miserable way I've ever seen him, for the past three days. He keeps getting successively higher fever waves, and is wracked by a constant, full-body cough. Very little eating during this time (meaning very few supplements). And, of course, all therapy/play sessions are off.
He's also been up for big chunks of the last three nights, mostly due to fever spikes. Our good DAN doctor assures us fevers indicate the body's natural defense forces are rallying against the virulent invaders, and, unless his temperature exceeds 102F, we should treat him by stripping off excess clothing and/or applying tepid sponge baths. No Acetaminophen (Tylenol) and definitely no stomach-ravaging Ibuprofen (Advil/Motrin) unless we talk to Dr. P first.
Well, last night he raged from 1 to 2 A.M., culminating in a spike of 103.1F (thank you, lovely rectal thermometer). Seymour kept insisting that we wait it out, and that his cough wasn't that bad (extended, paroxysmal coughing spasms every 3-4 minutes?!?!). I pulled rank and got the boy some Tylenol and cough syrup. Even so we spent the next few hours trading watches with the still-inconsolable boy, until he finally crashed at 4:00.
Understandably, by this morning I'd had it and dragged Leelo to Dr. G, our traditional pediatrician. Thankfully Dr. G is skilled, and was able to detect wheezing in our boy's lungs even though the screaming never stopped. We haven't reached bronchitis/antibiotics yet, but we're only a few steps away. Dr. G is recommending Albuterol, a hardcore bronchial dilator, to prevent Leelo's reaching that point. But I don't know if Dr. P, our DAN doctor, approves of this treatment, and it's been three hours since I placed a call to him asking about it. I will only put up with Leelo howling, hacking, and refusing to talk or eat for two more hours, and then I'm picking up that prescription. Surely Albuterol is a lesser evil than an antibiotic.
Also understandably, we didn't do much this weekend except try to keep the boy comfortable and Iz from climbing the walls. I took advantage of yesterday's self-induced family quarantine to make a huge batch of Leelo-friendly chicken soup from scratch, but as always he wouldn't touch it.
And of course today is a teachers in-service day at Iz's school, which means she's off for the day. Blessings upon Ep the big softie, who left me do a dump-and-run a couple of hours ago.
This Saturday is Leelo's birthday party. Usually our parties are crazy blow-outs, but--since I haven't done a damn thing about it yet--this one should be tolerably low-key. Playgroup-goers, godparents, and family members only. Leelo loves chickens. I wonder if you can rent a chicken petting zoo for a party?
New hair for me! Straight, with a vixenish bright orange love lock in the front. Too bad Blogger sucks so much they don't need my upgrade money, or I'd be tempted to post a pic. It looks that cool. If those people don't get their crapola together soon, I'll join Jo's migration to Typepad. They'll take my money.