TweetWorld Autism Survey
"The World Autism Survey is being launched at the National Autistic Society International Conference in London on the 23rd of September 2005. The survey invites responses from people with autism, parents of a child or adult with autism and from professionals and service providers in the field of autism. We welcome all contributions to the survey.
"The questions have been designed to give an overview of the way people with autism are supported in the respondents’ locality. By having as many people as possible complete relevant sections of the survey, we plan to build up a picture of the good and not so good practices currently occurring around the globe."
TweetWorld Autism Survey
I am rearranging Tuesdays. I can't take them the way they are, coming on the heels of Mondays, which have me at Leelo's furthest-reaches-of-town OT at 8:00, and peak with me
standing in a corner drooling working the afternoon shift at Iron Gate, pretending I can't hear Mali scream in the nursery the entire 3.75 hours.
Changes: Iz and Sophie's yoga is over, so that errand can be eliminated. Jo said I could pick up Sophie from school on Fridays instead. I will be asking Sage if she can pick up Leelo from Iron Gate on Tuesdays instead of Wednesdays, and Therapist Y if he can put in a Tuesday 8:30 - 10:00 shift (he doesn't currently have an in-home therapy shift with Leelo). The modifications should result in a day that is smooth yet bracing, sort of like aged St. Marce11in cheese.
This last Tuesday knocked me straight on my ass. I think it would have sucked anyhow, but it wasn't helped by my thinking I could take Leelo in for a "quick blood draw" to get the titers his pediatrician had ordered in lieu of vaccine boosters. I even warned the phlebotomists ahead of time that they needed to be quicker than quick, yet they didn't start organizing all their little bottles until Leelo was in my lap in the phlebotomy torture chair and already starting to freak. They only managed to get half the blood they needed before he wiggled out of my grip and (avert your eyes) pulled out his fucking needle.
In not-so-gross news, I've talked with several of Leelo's therapists about his words & music singing disconnect, and they are thinking that 1) He's just not there yet (able to combine music and words) and 2) It wouldn't hurt to put him in a music class. The director of Mali's music program is one of my Iron Gate homies, and Leelo just loves the class's music CD, so I will ask said homie if she runs classes for younger-thinking kids like my boy. I don't want him accidentally crushing any mewly little babies or toddlers.
It is of course far more common for autistic kids to sing songs but not produce regular speech. When I mentioned this to Therapist A (ST), she said, "Of course! That's our Leelo."
In other exciting news, Iz came home sick again today, having barfed all over HP5. Like last time, she was fine once she got home. No OJ for breakfast this morning, but much talk about how much she wishes she had a less strict teacher. I wonder if she's learned how to barf at will, like the little sister in a book I read long ago, who also got a home beauty kit that she used to color her hair mercurochrome red. I believe there was an older brother, and a dog, and a divorce. Maybe it was the dog who barfed on cue. Regardless, a useful skill.
Mali has learned to climb. Stairs, storage chests (via step stool), etc. More diligence will be needed from me, as she has absolutely no sense at all.
Miss Mali is 10 months old as of today. She is celebrating by taking her first extended nap in well over a week. I am celebrating by catching up on bills and correspondence and the Leelo program management that is a part-time job in and of itself.
Latest milestone: She carried things around in her mouth like a dog, because how else is a crawling baby to transport items?
TweetHe's Very Musical!
I am currently pondering audi0 integration therapy or similar practices.
Leelo has been playing a lot of his favorite tunes on the kazoo, full length and pitch-perfect. However, he cannot sing the same songs; he will sing the first few words rather fuzzily and then start humming the rest. He can follow along when I sing them, and fill in words at any point (again, pitch perfect).
This makes me wonder about a auditory processing disconnect that perhaps something like AIT could address.
TweetMore Leelo Goodies
Two days ago Leelo refused to put on a diaper when Therapist S told him it was time to do so. Instead he got his underwear--and then put them on himself.
Today, after spilling some rice milk on the counter, he demanded to Babysitter A "I want a towel." When she got one for him, he not only cleaned up the mess himself, but put the towel in the trash. My theory: our boy has been observing us closely for many many years, but just now is realizing that he can imitate us without us prompting him to do so.
Also he has spent the last few days serenading everyone on his kazoo. He can "play" a lot of his favorite songs, note- and pitch-perfect. We did have him put it away in the dim sum restaurant, however.
Seymour is back. I am so incredibly fucking grateful. Even with all the help I had from friends and Cece and Marroqui, my day light down/alone totaled less than one hour, and that included taking a bath. (This morning's bath I took with all three kids in the bathroom with me--Iz reading on the pot, Mali trying to climb into the tub, and Leelo playing with trains on the floor.)
Iz is now on HP5. Which is great, because--unlike the four previous books--I've read this one recently. The ending of HP4, in which B. Crouch Jr. was sentenced to a Dement0r's kiss, prompted a capital punishment discussion.
She thinks, in her playground justice way, that sentencing murderers to death ("No, worse than death, Mommy.") is totally fair and logical. I am trying to help her understand that, in my opinion, those who do the sentencing become murderers as well. More debates await, obviously.
Mali was an extra-good baby at today's Music and Dance of Mali concert. When she wasn't nursing, she was standing up and rocking. No fussing or wrestling. She particularly liked the Northern/Rai dance number at the end. Iz, cousins, and friends were very impressed by the gorgeous costumes, and by seeing so many talented kids their own ages.
Badger has left her camera at my house. Heh heh heh heh heh.
TweetIt Is 10:00 P.M.
And Leelo is still popping out of bed every 60 seconds.
Even so, I am unwilling to strangle him, because look what he came out with today:
I want to dance with Mommy! (Takes my hands and tries to get me to boogie down.)
I want Mommy to fall down! (Meaning he wants me to lie on the floor with him.)
Let me play with the trains! ("Let me" is new. We like new. Also we like proper pronoun usage, as that can be a tricky one for autistic kids.)
Where is the breakdown truck? (Possible delayed echolalia, but fuck it, I'll take it. That was a question!)
Also earlier he spied me pouring some lemonade for Izzy, and said "I want lemonade!" clear as a bell. Normally he would say "I want juice." Also, this is new lemonade in a clear plastic jug rather than the usual white plastic carton brand. No one told him that it was lemonade; he must have absorbed the fact that yellow juice is usually lemonade on his own somewhere, by observing his sister drink it.
TweetUps That Downs Can't Beat
Leelo is on another loopy behavior bender. Humming and vocalizing, needing prompting to answer questions he was answering readily last week.
And I don't really mind.
Because even with these behavioral quirks, he continues to demonstrate not just increased language, but increased comprehension of his environment.
This morning he finally made the leap out of dealing purely with the concrete immediate present. A short leap, but one that will be the basis for further extrapolation.
I asked him to put on his pants, then walked into the next room to make Mali's breakfast. A moment later a pantsless Leelo came running into the kitchen. Frustrated, I sternly said, "Leelo, go get your pants!" thinking that maybe, maybe, he might be able to grasp relocating a non-present object. And he did! He went and got them and handed them to me. I neither reminded him what to do, nor did I follow him into the other room. He did it all on his own.
Then, after he kept bothering me about a toy he'd misplaced, I told him to go look for it downstairs in my room. He not only understood, but went down to look for it--and when he didn't find it there, he came up and asked for it again. I told him that I was sorry, that I really did think it was in my room--perhaps it was in his room? Then he ran down the stairs straight to his lair (which was bare). But--cha! He gets it!
Later, while we were doing our usual breakfast cafe thing, he spied a wrapped present on another table. He walked up to the person next to the gift and said, "Open your present!" He not only has never said this before, he's never before demonstrated any comprehension of the wrapped gift concept. His therapists spent a good deal of time with this concept, months ago, but I was under the impression that they'd dropped it for more productive play scenarios. Certainly it's not something we've been talking about.
That light, that tunnel. I can see them both. Of course I might not be dumped out at the exit I was expecting five years ago, but I am okay with that. I like where Leelo's headed.
As for the behavioral crap, Leelo had yogurt and sugar-coated cranberries on Monday, part of a t00tsie pop on Thursday (no other item motivates him for a hair cut), and then for the first time in four months requested dried raspberries yesterday. His physical output (think stench) has degraded in a manner consistent with his behavioral output. Time for me to be a bitch about dietary, and specifically sugar, exceptions.
TweetHelp Directly, Again
Bay Area Residents:
If you are still flummoxed by how to help with all the relief efforts going on right now, consider the following opportunity to donate goods directly, this Tuesday in Burlingame:
-Supply Donation Drop off time:
9/27/05 Tuesday between 4pm-7pm
The donation is scheduled to ship via FedEx Freight on 9/28/05.
-Supply Donation Drop off location:
320 Beach Rd.
Burlingame, CA 94403
*If you have any questions, please contact Eva at: 650.922.3877
More details via our own wonderful Grace Davis.
Anyone who wants to help:
Beautiful, exhausted Badger has made the following incredible, incredibly useful Direct Relief web page/wiki resource.
TweetWhen Data Are Useful
Ooh the irony that today I received a short analysis of almost-five-year-old Leelo's developmental levels from the MYND Institute. In almost every single category his developmental level is between 23 and 30 months. And his 29 in motor skills is only because they mistakenly thought he was fully potty trained.
Here are the scores:
Mu11en Scales of Early Learning (Based on testing Leelo)
Visual Reception 23 months
Fine Motor 30 months
Receptive Language 28 months
Expressive Language 28 months
Vine1and Adaptive Behavior Skills (Based on an interview with me)
Communication 25 months
Daily Living Skills 29 months
Socialization 23 months
Montor Skills 30 months
Initially upon reading the report, I felt the familiar boot-to-the-gut feeling. But that only lasted a minute. Thing is, I know Leelo's delayed. Every time I meet a two- or three-year old who leapfrogs over Leelo on every level, the fact that he has global delays is made abundantly clear. It is not news.
It is, however, data. I now know exactly how delayed Leelo is. I now have figures on which to base my concerns over placing Leelo in a mainstream classroom, even with an aide. What business would he have being schooled alongside kids who are developmentally--at minimum--two years older than him? What purpose would that serve?
Also the report cannot burst my sunny happy Leelo bubble as most of their data were taken before he began this current phenomenal cycle of language and behavior.
But I really do need to get his placement IEP up and running. Sigh.
BTW, I will put the exact data in this entry, later. However it is upstairs in the dark in my backpack, Seymour is not here tonight, and I made the mistake of watching The Grud6e a few days ago. I'll go back upstairs when it's light.
TweetAutistic Children Do Not Usually Point At Objects or People
Iz stopped being a blonde today. All the final blondie bits were chopped off this afternoon. Now she is what uncharitable folks call dishwater and I call caramel blonde.
Leelo got a haircut, too, as he was starting to look like he'd borrowed Pedr0's wig from Nap0leon Dynamite. But since he couldn't sit still I'm not going to post a picture--he looks like mice chewed on his head.
Iz had a great time at the salon. She noticed her stylist talking in Spanish, and so conversed with her in Spanish for the remainder of her stay. That is the first time Iz's ever initiated a Spanish exchange. The stylists all made much of her fluency, then crowed about the great big book she was towing, all of which made our girl feel pretty good about herself.
The great big book was of course HP4. She is at the very end, and I kept getting accusations thrown at my head all afternoon: "Mommy! Cedric Digg0ry does die! I don't think it will be appropriate for me to see the movie as it will be too scary!" "Mommy! You didn't tell me that Mad 3ye Mo0dy is a D3ath Eater!" (Me: "Keep on reading, Iz.") etc.
Reading the HP series has had a tremendous effect on her imaginative life. I've been given a detailed report about each school day this week--except the school is H0gwarts. She is in Ravenc1aw rather than Gryff!ndor ("because I'm SMART") but longs to be in the latter house.
Also she has hooked up with a 3rd grade HP freak (thanks, Badger, for making the connection) and is pleased as punch to have someone to geek out with.
She seems to be turning into a kinder gentler version of herself, somewhat. This evening as Seymour was getting ready to leave on a four-day bike trip to Tahoe, Iz bounded up to him and presented him with a homemade card that read "I love you" on one side, and "I will miss you" on the other. I'm sniffling just thinking about it.
TweetLeelo in a Good Place
I have been trying to post this post for almost four weeks now, but then Leelo keeps coming out with more great language and behavior, so then I want to shoehorn them in too. But it would be good to post this before it becomes (even more) epic, as I do not think Bl0gger has a "continue reading" link-to feature.
Just today, for instance, even though he had more humming/vocalizations than usual (due to unlimited access to sugar-coated dried cranberries at Iron Gate, IMHO), he came up with the following unprecedented, spontaneous language and behaviors:
- While sitting on the potty: "Babies wear diapers. I'm not a baby." Turns out Babysitter A and he had talked about this during pretend play with his baby dolls--four weeks ago.
- During Circle Time, when Teacher P said, what does "Jambo" mean? Leelo said "Hello hello!" Apparently everyone turned around to look at him, in amazement. That is the first time he's participated verbally.
- When Seymour came home, Leelo went and got a ball and asked Seymour to "Throw the ball?" and then spent a good five minutes playing catch on the stairs. With Leelo throwing, too! When Leelo got tired of that, he offered the orange ball to Seymour's mouth and said "Yummy yummy!" TOTALLY UNPRECEDENTED.
- Leelo: "I WANT TOAST!" Squid: “Little dude, toast is cooking.” Leelo: “Toast is cooking in the toaster!”
- When he's done his business: "Time to get off the potty!"
- Therapist L also reported that he did some really incredible pretend play involving his Car3 Bears, pretending they were hungry and telling them what they needed to say if they were hungry, all with proper prepositions.
His language and behavior leaps continued coming even though he had a bout of stomach flu a couple of weeks ago. Usually illness equals verbal and behavioral nosedives.
He's been making lots of potty progress. Minimal accidents, usually only when someone forgets to take him at the current interval of 40 minutes. Occasionally upon awaking, he will have a dry diaper AND ask to pee in the potty, emptying what is obviously a full bladder right into the pot. I never in my life thought I would be so excited about toilet training milestones.
Two weekends ago he pooped in the potty for both Babysitter A and Seymour. Supervisor M warned us that #2 is a whole different territory than #1, and Leelo thinks so too as he fought Seymour the whole time and then was shocked to see the results when he finally capitulated. I am shocked that he is finally developing awareness of his toilet needs, as it’s not something I was ever banking on. There may be a diaper-free future for our boy, after all.
Due to fluctuations in his therapists schedules as Iz's new school year began, I had a lot of recent mornings at home with just Leelo and Mali. Normally I would not feel anything but trepidation at the thought of staying home with my two youngests. Mali is very needy these days, and Leelo is usually beyond needy in his unique way.
But they turned out to be lovely mornings. Rather than requiring his usual micro-supervision, Leelo made up games that required only my verbal interaction--like a typical preschooler. He would tell me he wanted to dance on one of the various shapes I'd drawn on the deck. I would say "Dance on the ____, Leelo!" and he would hop to it. Meanwhile I could play with Mali, do laundry, and anything else I liked as long as I kept talking to him.
He had a good long spell of being obsessed with those porch shapes. He'd be dancing on the shapes. He'd be walking on them, too, all with narration. When we went to a restaurant with his magnadood1e, then Daddy's fingers got to dance on the shape of the moment. He was even having me substitute shapes for the animals who usually populate his Good Night song.
His Te1ebutties are enjoying a popularity renaissance. Not only did they get to do their time dancing and walking on the shapes. but he's also started incorporating them into his emerging pretend play scenarios. I get to watch the Te1ebutties hiding, riding a horse, riding in a wagon, sleeping, all that.
He also has been chasing Pat the Cat around with his Catbus. This is funnier than it reads. Also, he has begun playing with his favorite fish toy in Speech Therapist A’s office, instead of stimming on it as he’s done for the past two years. She was extraordinarily pleased. He is now having more good than bad days with her, as is also the case with lovely Speech Therapist Sage now that he is getting more familiar with her home office environment.
His ABA therapy team has done a great job of teaching him responses to social questions such as What’s your name? and Where do you go to school? He now has an entire repertoire of answers, though he is leaning on keywords rather than listening to the entire sentence:
- Me: "Leelo, what's the name of your school?" Leelo: "Iron Gate!"
- Me: **hmmm** "Leelo, are there zebras at your school?" Leelo: "Iron Gate!"
- Good echolalia: Me: "Leelo, come dance with me." Leelo: "Dancing the night away..." (from Bear in the Big B1ue House)
- It's time to go pee!
- Nails are all done (when I took his hand and commented that his nails needed trimming)
- I want to eat the pancakes (new generalization of "eat")
- I want to read G00dnight Moon (new generalization of "read")
- I want to dance with Mommy
- Clean off catbus (after dropping said toy on very dirty/leaf-strewn back porch)
- I want to hold! (if doesn't know name of object)
- I want to sleep in the bed with Izzy
- I want a towel...clean off shirt (after spilling water on himself)
- LaLa is going to ride the wagon! (any teletubby, any rideable object)
- Put the cat down!
- Get off the bed, Daddy!
- Where are the tenders? Tenders, where are you? (sing song)
I am playing the guitar! (using the staircase posts--that's fucking self-initiated PRETEND PLAY, people). Therapist M says some ASD kids never get to this place. It's still primitive, but hey.
I am in such a good mood about him lately, because he has become so much more of a presence in our lives. So what if he still has so far to go. My lovely little boy is engaging us, he is responding to us, he is becoming a participating member of the family. That is more than we ever dared hope for.
Why is he doing so well? I can’t really say. We’ve been pretty good about avoiding sugar and simple starches, and cutting out whole dairy. His gluten intake is reduced, too, since he will only eat rice bread, although he does eat one whole wheat croissant each day.
B12 is another possible factor. I'd forgotten about his injections for most of August, but started them a week before he started consistently wowing us. Although I still only remember to give him about one shot per week as he is now aware of and scared shitless about them. Can't do them during diaper changes anymore or he'll not let me change his diaper for days.
His progress coincided with August’s month off from school, and consequent reintensification of his home ABA program. But the funny thing was that, due to various vacations and scheduling inconsistencies, he’d not had OT or ST for almost a month before the happy leaps began.
I had been wondering if OT was such a great thing, as he is doing so well without it. But a conversation with Supervisor M reminded me that OT is not just for sensory integration but also gross and fine motor work, two areas in which he definitely still needs help, especially if he's to go to kinder in the fall.
He still hasn't asked a question. I’m waiting for that. Although a few days ago when I tried to stop him from slamming our sliding closet doors, it did seem like he was asking/crying "WHY WHY WHY WHY WHY?"
I am dying for him to tell me when he has a poo, instead of reaching down to itch his itchy poopy bottom and getting shit all over the back of his pants and inside of his shirt.
Also I'd like him to STOP GRABBING OUR FUCKING ELBOWS.
I still get depressed. Leelo’s schedule is the black hole that sucks away my time, and puts large portions of my personal and social lives on hold. He was technically supposed to start kindergarten this fall, and I get bitter watching all the Esperanza kinders scampering around the schoolyard when I pick up Iz, or hear a girl from Leelo's old Iron Gate class announce that she's just started kindergarten. I almost cried when I overheard Jo talking about her family going orienteering. That should be me, Iz, and Leelo, with Mali in a backpack, goddammit! I am the map chick! I should have the carto-brood! But Leelo at this point will neither cooperate nor care about such things, so any such adventures will have to take place without our missing piece. I fucking resent that.
But, overall, I am in a good place because he is in a good place. A very good place.
(I blame Lea for my adding -ses to the end of all nouns.)
Mali sprouted her first upper tooth today. That seems to have put an end to the endless baby grumping, and our cheerful chatty bundle of grins has been returned to us.
She is also cruising for real. Oh lord.
She still hates almost all foodstuffs, except carbs and milk fresh from the tap. Good thing all those Attkkins stores went belly up, they wouldn't be getting her business anyhow.
She is a systematic fucker-upper of all things orderly. All books within reach come off the shelves and have their pages torn out. Every item comes off the art cabinet shelves. All items in reachable drawers are extracted and distributed in random piles on the floor.
Leelo and Iz never did any of this crap--I checked my journals. This one's going to be a firecracker.
TweetIn Which I Fantasize About Various Fates for Scabby the Cat
I came home from Mali's baby music class (Lame lame lame! I am about five years past wanting to have anything to do with googly-eyed M0mmy and me crap) to find that Scabby the cat had, for no reason apparent, taken a big shit on my bed.
This would not be such a major issue if Leelo hadn't taken also taken a big misplaced shit this morning, on the rug in his case. (Although I am actually happy about why he did it: because he didn't want to poo in the potty for me. He kept asking for a diaper instead, which he never ever does. After ten minutes on the pot without any results I put his underwear back on. He immediately whipped them off, and, while I was preparing his morning snack in the kitchen, did his deed. All this means he now knows if he needs to drop a load. That is GOOD.) I spot cleaned all the affected carpet areas (what's the point of crapping on the rug if you can't quickly put your foot in it and then run all around the room?) and will steam clean them later this afternoon.
This would not make me fantasize about finding Scabby another home if Iz hadn't had a dream about reading a book while on the potty, and consequently wet her bed in the middle of the night. (Seymour, bless him, took that one. We told her that this was not a big deal, that almost every kid does it once in a while.) The sheets are still piled up on the washer.
This would not make me think fondly of my mother's 3 B's solution to the problem (bag, brick, bridge) if I wasn't already planning on taking our regular down comforter to the dry cleaner this afternoon on account of Scabby doing exactly the same thing last Thursday. Although in that case, she did it twice! Once on the blanket lying on top of the comforter, and then--just as I was feeling grateful for her thoughtfulness in defecating on something machine washable--on the dry-clean-only comforter.
I love my cats. But I love my husband, kids, and sanity more. If this keeps up I will find her a new home and I will not feel one whit guilty about it. Unless the new home is at the bottom of L0wer Emera1d Lake, of course.
TweetNerves of Steel. Extremely Frayed Steel.
Mali has discovered separation anxiety! Today while in the Iron Gate Nursery she screamed so long and hard that by the time they came to get me she was shaking from the effort. Poor mite. She is loud, too, so I could hear her the entire time I was already stressing from doing the Iron Gate mega-multitasking mambo.
The day had already started with a bang, as Iz's school called me to come pick her up after she vomited all over her desk. Ep was kind enough to come stay with her while I went to my annual dermatology spots check (I remain spotty, though still not in a malignant way).
Turns out Iz barfed because she'd drunk OJ on an empty stomach. I do not think this was entirely unplanned--Iz has been telling us how much she loves it when they have a substitute, which was not the case today. After I returned to find Ep and my daughter taking a stroll on our street, I booted the latter's little butt back to school, where she was fine and arrived in time to participate in class pictures.
Leelo's been a bit loopy lately (he's been sneaking sugar and simple starches), but continues to come out with incredible language, and demonstrate new skills. This afternoon he pulled up his own pants. Not vertically, like he usually does, but while laying on his back, with his shoulders and feet on the ground, and the rest of him in an inclined position. Cool!
Tomorrow (Tues.) is the week's big logistical party. Should be even more fun.
TweetFamilies With Autism Helping Families With Autism
Talking About Curing Autism! What a great resource. Thank heavens someone finally put together this site. Here is their stated goal:
Talk About Curing Autism (TACA) provides the information and connection to improve the quality of life of people with autism in their families. For families who have just received the autism diagnosis, TACA aims to speed up the cycle time that gets them from the diagnosis to the appropriate information that will lead to effect treatment and supports. For all families, TACA builds the autism community by connecting people with each other and the professionals who can help them, allowing them to share stories and information to help people with autism be the best that they can be.
We were all five at the cafe this morning. One of Iz's classmates came in and sat at the next table.
Iz: "Hi, Lex. Are you still reading HP2?"
Lex:, "Uh, no, I'm reading HP4."
Iz: "What chapter are you on?"
Lex: "Uh, six."
Iz, in Aha! voice: "EIGHT!"
She then turned to me and started protesting that merely asking someone about chapters doesn't mean she's being competitive. Sigh.
We got them to talk a little bit about favorite characters and parts, but both were too interested in going back to their books: Iz another f***ing G00sebumps (which IMHO is the reading equivalent of the G0lden Arches) and Lex Din0t0pia.
In her defense, this boy isn't the most socially enabled creature around. Kind and pleasant, but definitely reserved. She'll need to get her HP shared universe fix from someone else.
TweetAnd These Days, I'm Not Picky
Am I the only one who thinks At0nement sucked? And didn't swallow?
I am hereby refusing to read authors who think I deserve to be tortured by stale deadly seriousness. I don't need froth, I don't need comedy--but I also don't need to feel like I'm suffocating due to the sheer importance and majesty of what I'm reading.
Parts of it were lovely. That makes me feel even more cheated by the whole.
Yesterday (well, now two days ago as Mali woke up just as I was trying to finish last night) was a particularly interesting Tuesday. So much so that I couldn't even properly greet Back-from-TX-Badger, as I was hauling ass to retrieve Sophie with both Mali and Leelo in tow, and not be late to pick up Iz across town. Apologies, Dearie.
I had nary a minute between errands to tidy the house, so I had to cancel on Marroqui. Cleaning day will need to be moved.
Good news is that the day's irregularities were mostly due to training sessions for Leelo's new Therapist Y. Who is a MAN. Which is rare in the ABA therapy field. It took me over a month to find him, and he joined just in time. I am grateful to Therapist S for continuing to cover shifts in the interim even though it was inconvenient for her.
Tuesday was capped off by an Iron Gate night meeting during which Miss Mali cavorted on the floor, vocalizing loudly and tearing into everything in sight. To many aahs and oohs from the audience, and gaining the approbation of even Teacher P, but I don't think my nerves can stand bringing her there again. I will need to negotiate with Seymour for those nights; perhaps if I can get the trio washed and fed before he arrives? He has the superpower of soothing Mali to sleep without sticking a boob in her mouth.
I also decided to be Iron Gate class reporter again. Before Jo, etc., strangle me, let me just write that I negotiated doing so as writer only. Someone else will take the pictures. I can whip up four paragraphs of Iron Gate type while standing on my head and changing both Leelo's and Mali's diapers.
Pat is doing well. He does have some minor left side facial nerve paralysis, but his doctor thinks it's most likely bacterial (ear, general) and should go away with antibiotics. All tests for anything else nasty came back negative. We'll try a week of hard core antibiotics and see how that goes. As long as his third eyelid is working, she's not worried about him developing a dry cornea.
She was worried about his general health, as he'd lost weight and has developed a "galloping" hearbeat (meaning his ventricles are out of sync with each other), and also because he let her give him a full exam for the first time in his life. In the past she's needed help from at least one vet assistant. But as she can't find anything specific wrong with him, we'll be stuck in "wait and see" mode for a few weeks.
Mali is in an odd space. She's not eating much at all, again, instead mostly nursing. She still likes the plain white rice (or, thanks to Iz's food coloring experiment, the mint green rice). She's slimming down, which, as Seymour commented, means that in profile her cheeks no longer obscure her nose and lips. Today I left Iz and Leelo's play keyboard on the floor for her to play with, and she kept hitting the auto melody keys and then putting her butt in the air and wiggling it to the music. Cute! She likes to grab my hands when I'm clapping and do the clapping for me.
Iz is done with HP3, and is brandishing HP4 at everyone she encounters and lecturing them about portkeys. I am still trying to find her a friend who knows the books and wants to talk and pretend about them, because right now all she does is exactly what I used to do: brag about the fact that she's reading really big books. I wrote and rewrote my concerns about showoff reading two years ago when I had fewer children and a nimbler brain, and my position hasn't changed. I don't care about titles and page counts, I want to hear what she thinks. I don't want her to become a literary dullard like me.
She is also having emotional episodes in class, which yesterday culminated in hysterical crying and rolling on the floor after the maestra threatened to erase Iz's good student star from the blackboard. Seymour thinks we need to cut off reading in bed after 8:30, that she's getting too tired during the day. I agree, and also think it's hard to be a smart girl who hasn't found peers, with an autistic brother and baby sister who get take away so much attention. We did some roleplaying about taking deep breaths and trying to ask questions in a normal voice, but I don't know how effective that will be when she's caught up in the moment. Suggestions?
Off to Bad Moms coffee. Except the local moms' club will be overrunning the space. Why oh why did they have to choose the exact same date and time as us? Perhaps I'll ask Mauna or Knob if they can boot them to another time. Heh.
TweetFall Schedule of Items Requiring My Presence, or My Chauffeuring or Prep Skills
Another reason to keep that bourbon on hand.
I tried out the Monday schedule today. On three hours of sleep (my and Pat's faults). Not a good idea, even without my work duty being Kitchen/snack, which is always sheer hell; even though I prepped all the food at home; even though I brought in my own coffee and coffee cups so I could take those dirties home and lighten up the in-class dishwashing load.
Mali, stuck in the nursery for the first time in six weeks, screamed like a fiend much of the time. She became hysterical near the class's end, and I ended up doing the kitchen cleanup with her sitting on my hip or howling in her stroller next to me. One of the nicer moms helped me dry and put away the wet dishes, but even so I was freaked and frantic. No Ir0n Chef America appearance for me.
I thought I did good--the kitchen was clean and scrubbed down, the cabinets were locked (the key has to be retrieved from and returned to another room), I put away my apron and clipboard (two other separate areas at the other side of the school), I remembered both Leelo's and Mali's backpacks, I emptied my mailbox. I even managed to squeak in a quick nursing session to help poor Mali deal with her about-to-emerge upper tooth. Whew.
Except just now I realized that I neither cleaned nor unplugged the pot of decaf coffee. I hope the building will still be there in the morning.
8:00 - 9:00 OT in RW Sh0res (L)
9:30 - 12:00 ABA at home Therapist L (L)
1:00 - 4:00 Iron Gate (work day, M in nursery, Therapist L) (L)
4:00 Pick up Iz from Jo's
All day: Frantically prep house for cleaning day
8:10 Drop Iz at school
10:30 - 11:00 ST in RW Sh0res (L)
12:00 - 12:45 ST at Sage's home (L)
1:00 Pick up Sage's K from preschool, take her and Leelo to Iron Gate (Therapist Y)
2:30 Pick up Sophie from her school
2:45 Pick up Iz from her school
3:45 Pick up Leelo from Iron Gate
4:00 Marroqui arrives to try to clean house
4:30 - 5:15 Sophie and Iz to yoga
5:30 Dinner somewhere while Marroqui is still house wrestling
7:00 - 10:00 Alternate Tuesdays: Iron Gate Night Class
8:30 - 12:00 ABA at home, Therapist L (L)
9:45 - 10:30 Baby music class (M)
1:00 Drop Leelo at Iron Gate (Therapist S)
2:30 Pick up Iz from school
2:45 - 3:15 Piano Lesson (I)
3:45 Pick up Leelo from Iron Gate (or maybe Sage?)
4:30 - 7:00 Babysitter A for Leelo. Thank Heavens
8:30 - 12:00 ABA at home, Therapist L (L)
10:00 Bad Moms Coffee
12:45 Iz early pickup day
1:00 Drop Leelo at Iron Gate (Therapist Y)
3:45 Pick up Leelo from Iron Gate
6:15ish Babysitter C for ALL THREE KIDS!!!!!
8:30 - 12:00 ABA at home, Therapist L (L)
9:00 - 10:10 Reading Program at Esperanza (I)
1:00 - 4:30 ABA at home, Therapist S (L)
2:30 Pick up Iz from school
5:00 - 7:00 Babysitter A for Leelo.
Pat the Cat Peed on the Mat
Our cat Pat is by far the handsomest cat around. This makes up for the unlikelihood of his ever being invited to join the feline chapter of M3nsa.
Last night Pat snuck out and got in some sort of altercation. The kind that woke up both Seymour and me at 5:30, and had my hardy partner running around the yard with a flashlight until Pat was located under the porch stairs and then relocated inside.
This morning Pat showed difficulty going up the stairs due to stiffness on his right side. This afternoon the eyelids of one eye will not close (though his nictating membrane still works). He did not appear to be injured after his brawl, and in fact he'd taken to peeing on any papers left on the floor the day before that. Which usually means he's not feeling well.
The vets didn't have an appointment available today, so we're going in first thing in the morning. When I called up to get the appointment and described his symptoms, the vet assistant said, "Oh, that's NOT good." Please think good thoughts about our dim yet dashing boy cat.
TweetRestaurants and Retreats
The powers that be have finally placed a good ph0 restaurant near my house! Yeah! It used to be a fried chicken establishment, so the new owners--in a creative act of resourcefulness--decided to add a bunch of crackly-skinned fowl goodies to their set menu items. The place in question is Happy Day on W00dside.
Once we get Korean and Ethiopian restaurants, I'll never again need to cross city limits. I might as well be on rails, so circumscribed are my ways and paths, so well does our beloved Deadwood provide for my needs.
We almost didn't go out for dinner, as I was a grumpyfuck. However Seymour had been looking forward to ph0 all day and I couldn't say no--more than two or three times. I am glad he talked me into going as the food was both wonderful and wonderfully soothing. I look forward to sucking down big local steaming bowls of broth as the days get shorter, colder, and grayer.
Not with Leelo, though. At 4 1/2 and 45+ lbs, he's really too big for a restaurant high chair. Once released from the calming confines that have made him a dining-out sweetheart for years, and allowed to sit on a booth seat with Mommy blocking his escape, he was a wild man who had no interest in eating. He spent the entire meal flailing and shrieking and otherwise making our meal unpleasant. Big sigh. We will confine ourselves to large loud family-friendly places at off hours until such time as he can control himself a bit better.
We will also keep taking him to the Heritage Gr0ve near La H0nda. I drag our whole brood out there any time I can--no matter what time of year, it is always almost deserted, and I am instantly filled with calmness the moment I step from the car. Kids love the short 1/4 mile path with its creek, two clonkity-clonk semi-elastic wooden bridges, and some of the world's tallest trees. See if you can spot Iz in the photo below.
Also I never did do a post about our restful, lovely anniversary trip to P0int Reyes. With Mali. Who was the bestest baby in the whole world and didn't make a peep through our entire eight mile round trip hike to T0males Point. Here is what she did most of the time:
She never even woke up or complained on account of our forgetting to change her out of her overnighter diaper, which got so pee-saturated that it soaked right through her clothes by the hike's end. The parents of the year strike again.
And here is what we saw, about three miles in. Elk elk elk! The males were whistling and posturing and strutting around with racks so large that even I felt under-endowed. Seymour and I particularly liked it when the biggest male decided that streamers of pond scum made his headgear look even more menacing.
I must also put in a good word for the P0int Reyes bird observatory, just north of Bolinas (a town whose charm I failed to fathom. Perhaps it helps to know someone who lives there). The observatory has lovely little exhibits, plus the researchers let you follow them around as they gather birds from their mist nets for banding and recording. The researchers we met were patient and kind with endless kid questions. They take down the nets at noon, so go before then.
Next time we are in a restaurant with Leelo, I will mentally transport myself to La H0nda, T0males Point, or the observatory.
Mali 9 Month Milestones
Forgot to mention that 9 1/2 months old as of today Mali had her 9 month checkup last week. She was 19 lbs 10 oz, so we can legally squeeze her into the carseat for several weeks more. Even though she's dangling over the edges, as you can see.
Her weight percentile has dropped a bit (60th to 50th), which is expected with all her new crawling and standing and pointing. She's up a bit in the height percentiles, but is still a shortie like her mom. (5th to 10th).
Apparently her head circumference has increased dramatically since her last checkup. Almost half an inch in two weeks. I will check that up to distracted measuring techniques rather than the sort of dramatic head growth that occurs in many autistic children at this age, because she is acting so very neurotypical.
She is a darling baby. A funny looking baby (again, see picture), but charming. Tonight at dinner she kept smiling and reaching out to various people at the ph0 restaurant, who were all instantly enchanted. Even though she still looks like she has no eyebrows.
Her personality is still genial yet unpredictable. She is adamant about pulling off hats and socks. She turns her head and knocks away unwanted food. She is an accomplished speed-crawler now, and will not be turned away from a desired destination. Yesterday at the park she did not want to sit on the grass under the oak tree with me and Ep, she wanted to be over at the fountain with all the cavorting kids. So she crawled over there. Three times in a row. I let her go further each time, and suspect she would have crawled right into the middle of the melee had I not intercepted her.
She hadn't been eating much in the way of solids during the past few weeks, but for some reason (probably all that crawling) decided today that she was hungry indeed. Much baby-bird like demonstrations of her need, much reaching and grabbing for spoons, and squawking when the servants (us) did not attend to her appetite with the required haste.
Tomorrow is Leelo's first day back at Iron Gate, and so the first day Mali goes back into the nursery. She's been completely well this entire summer, and I worry about another cycle of respiratory ills. There will only be two other children in the nursery as opposed to the five that she hung with last year, but both the other children are old enough to want to poke and prod and grub on a baby, and both have two older germ-ridden siblings.
Oh, what the hell. Here's another pic. And mind you, it is okay if I say she is funny-looking. Say or write a like word, and your
ass IP address will be banned.
Mali just stood up, unsupported, for a good five seconds. As Iz was my witness.
Were she a first baby, I would be elated. However, this makes me suspect that she'll be walking well before Iz's 14 months. Which means she's that much closer to running in one direction while Leelo runs in the other.
Yay for Mali, but I am going to make certain we've plenty of bourbon with which to counteract upcoming stress-borne headaches.
Spent this morning doing in-class reading in Iz's class. Every time I visit I am more impressed by the wonderful classroom, the intelligent students, the warm yet firm maestra.
However, it seems that Iz has been having lots of problem behaviors. Can't stop playing/fidgeting with her pencils/pens/erasers all day long, which is driving the maestra bats. And it's not just when she finishes her work early, it's all the time. We will have her keep her supplies in a schoolbox from now on and see if that helps.
Also our girl is having real issues coming clean in situations where she thinks she's going to get in trouble. Last week she clonked Violet in the head with a jumprope she was whipping around. An accident to be sure, but Iz was so freaked that she hid in the bathroom until the recess bell rang.
Then yesterday she and some friends found a piece of paper with the word "fuck" on it, and a list of classmate's names on the back. Iz passed it to a different classmate who doesn't yet read English and who didn't know what it meant, and so took it home to his mom. Who was not pleased, to write the least.
Since Iz was the passer, she got called to the principal's office. She protested with two or three different stories, rapid-fire, so no one actually knows what happened. At least they agreed with Iz's protestation that the word was not in her handwriting. But she has heard the word before, she knows how to read it, and she should have known better.
All this was told to me by Iz's teacher. I've not talked to Iz yet. I have my suspicions that there was peer pressure involved, but I'm not sure from which direction. It very well might have come from my daughter.
The protestation and freaking out about responsibility re: intentional or accidental wrongdoing, though, that is what the teacher is most concerned about. And that is where I'm wondering which direction to go. Obviously not the direct "What the fuck were you thinking?" approach. Hmm.
TweetHelp Directly, Now
Want to know what you can do to help Katrina victims right from your own computer? Badger will tell you how.
If you are more of a sending supplies or even helping in person person, then gracious Grace D has the directions you need.
Update on #2--don't be stupid like me and put together a big ol' care package via targhet.com, only to be told at checkout that they are not shipping to that area due to the hurrican. For now you will need to go get the supplies in person and ship them via FedEx, UPS, or DHL. Bring the kids with you and have them help you pick out items, tell them why, have them help you package them up. Don't forget to label like items in small boxes.
TweetI Am Barfing Up Politispam
Here is the latest pass-it-on wave your hat for our president e-screed from my mom. Once again I call upon those with brains that actually function to supply me with rebuttals. Most irritating to me is that the writer isn't just comparing apples to oranges, he or she is comparing apples to zebras.
I also think it would be interesting to find out where this originated, but I don't have time this morning. On top of our regular nutso schedule, I have an interview with Leelo's third therapist candidate in 20 minutes, then a Leelo team meeting, then Iz has piano lessons, and somewhere in that mix is a needy infant.
Things that make y0u think a 1ittle........
There were 39 combat related killings in Iraq during January....
In the fair city of Detroit there were 35 murders in the month of January.
That's just one American city, about as deadly as the entire war torn country of Iraq.
When some claim President Bush shouldn't have started this war, state the following...
FDR...led us into World War II. Germany never attacked us: Japan did. From 1941-1945, 450,000 lives were lost, an average of 112,500 per year.
Truman...finished that war and started one in Korea, North Korea never attacked us. From 1950-1953, 55,000 lives were lost, an average of 18,334 per year.
John F. Kennedy...started the Vietnam conflict in 1962. Vietnam never attacked us. Johnson...turned Vietnam into a quagmire. From 1965-1975, 58,000 lives were lost, an average of 5,800 per year.
Clinton...went to war in Bosnia without UN or French consent, Bosnia never attacked us. He was offered Osama bin Laden's head on a platter three times by Sudan and did nothing. Osama has attacked us on multiple occasions.
In the years since terrorists attacked us President Bush has ....liberated two countries; crushed the Taliban; crippled al-Qaida; put nuclear inspectors in
Libya, Iran, and North Korea without firing a shot; and captured a terrorist who slaughtered 300,000 ofhis own people.
The Democrats are complaining about how long the war is taking, but...It took less time to take Iraq than it took Janet Reno to take the Branch Davidian compound- That was a 51-day operation.
We've been looking for evidence of chemical weapons in Iraq for less time than it took Hillary Clinton to find the Rose Law Firm billing records.
It took less time for the 3rd Infantry Division and the Marines to destroy the Medina Republican Guard than it took Ted Kennedy to call the police after his
Oldsmobile sank at Chapaquiddick.
It took less time to take Iraq than it took to count the votes in Florida!!!!
Our Commander-In-Chief is doing a GREAT JOB! The Military morale is high!
The biased media hopes we are too ignorant to realize the facts.
TweetMali on the Move
Five days ago Mali had a visible baby epiphany: If there is something exciting happening in a place where she is not, she can negate the not by crawling over and joining the fun. She has assumed control of her own location.
I saw the lightbulb go off over her head while I was tidying Leelo's and Iz's
bear cave room. She sat up, blinked twice, and then determinedly crawled right down the hall and into the bathroom where Seymour, Iz, and Leelo were having their nightly bathtime splash-o-rama party. To much applause and cheers!
I'm still adjusting to having a smaller-than-Leelo-sized mite in the home, so it is particularly odd to witness such a tiny person moving about, and so deliberately.
She is starting to get interested in books. When she finds one on the floor, she opens it up right away to paw through its pages. Or perhaps chew on them, or try to rip them out. I might even read one to her, one of these days. Poor little thirdling.
Leelo is starting to resent her less. I swore I saw him try to give her a kiss this afternoon, and he keeps giving her little gifts (Pez dispensers, etc.). The two of them are even playing together a bit, sort of. Interested in many of the same toys and such.
Iz is done with HP2; she is well into HP3. I found out that one of her grademates is just about at the same spot in the series, and so have been encouraging her to talk with him about some of her theories and questions: Why are there only Head Boys? Why no Head Girls? Does that mean that girls don't get to be head students? I told her that in my opinion we've simply not encountered any of the Head Girls but that next year we will: Hermi0ne. She seems reluctant to talk to her schoolmate. Perhaps she's hoarding her ammo for Eliz's return from Hawaii.
She has also been reading crapitty-crap G00sebumps books, checked out from the school library. Turns out she was introduced to them at Satan's Tennis Camp this past summer, where they also let her watch What Ab0ut B0b?. How those two media items were determined to be in keeping with their ultra-Xtian agenda, I can't even fathom.
I have retaliated with more Tin Tin and Encyc1opedia Br0wn. Thing is, she won't choose between them, she'll just read them all. Sigh.
Maybe I can get her to start reading to Mali.
TweetHeroes and Assholes
Badger is my hero because she's putting her butt where her mouth is and heading over to TX to help out Katrina's victims.
Floyd is my hero because he's on his way there, too. In his official gov't role which I can't reveal but please trust me when I aver that many, many, many peoples' situations will be made easier once Floyd (TLF's partner) is on the scene.
I consider them both my horcruxes, my spiritual stand-ins. I would be tagging along in a minute if I was in a different life situation. Somehow, knowing that good strong real people are putting in their time makes me feel less helpless.
I also feel less helpless when I support the following two charities:
- Rainbow World fund is shuttling 100% of designated donations to Katrina relief.
- Noah's Wish is helping out the animal victims of this disaster.
Then there are the people who are so clueless and heartless, so lacking in compassion, that words fail me. I'll link to their own materials/words instead:
Witness our First Fuckwad, Laura Bush, opening up her yap and letting us all peer into the gaping echo chamber that is her brain case:
- Are disaster victims being inappropriately optimistic upon reaching Texas?
- If you're poor, you're just fucked during a natural disaster. Sorry, that's just the way it is. (Sa1on Premium blog link, might not work for everyone.)
Update: my bad, the first link is Barabara, the second is her daughter-in-law/inheritor of privileged indifference and callousness.
Then there's Unbridled, Misguided, Myopic Hate directed towards subjects that are none of anyone else's beeswax in the first place:
The Vision America conference
Did I mention that these people were assholes? Assholes.
Which reminds me of the best bumper sticker I've seen recently:
When Jesus said "Love Your Enemy,"
I don't think that meant "Kill Them."
Okay, that's it. Back to blogging about the kiddlings.
I haven't felt like blogging much lately, because it feels disrespectful to do so if I'm not helping the Katrina situation. (That is solely how I feel--I am not making judgments about anyone else's blogging, so pull your twisted panties out of your butt already.)
Thankfully our beloved Badger is doing a fucking amazing job compiling and analyzing. Go to her site instead. Or Lea's.
Also, I just heard from a local friend who personally evacuated her parents from the New Orleans area. She is fine, they are fine, but it sounded like quite the ordeal. If she wishes I will post more of her story when she returns to CA.