Leelo slept for a grand total of two hours last night. He didn't even get to sleep until 6:30 AM. If today hadn't been Saturday, we'd all be frakked, as 6:30 is when we usually get up. But, thankfully, Leelo got to sleep until 8:30.
I don't know what caused his insomnia. Possibly it's his cold, possibly he's gearing up for a huge developmental leap (right?). He did talk a lot while he was rolling around in his bed not sleeping, and what he said was funny: "Boy and girl. Girl and boy. Boy and girl!" "I like baa, but I love moo. Do you love moo? You like moo but I love baa!" Um, okay. He has a wonderful reciprocal social smile when he's too exhausted to be hyperactive, and can therefore focus. Too bad he's being parented by zombies today.
Seymour took last night's first shift and I took the second. At this moment Seymour is sleeping. In about half an hour I am going for my annual Spring rite: paying someone else to rip all out all the hair on my legs, by the roots. Then I'll have a facial, during which I hope to fall asleep. Huge indulgences both, and ones that I don't normally submit to without a gift certificate. But necessary, if only for the time I'll get to spend in my head, by myself, without distractions.
I couldn't stop myself from sending the following letter to the Deadwood City Moms' Club:
There was a spelling bee at Kep1er's earlier tonight. It was hosted by SC0RE! Learning Centers of Pa1o A1to and Men1o Park, but was open to any local child who wanted to compete.
Guess who placed first and third out of 130 kids from PA, MP, and surrounding towns? Deadwood City public school students.
Think about that the next time you hear someone at the park or playground start talking about how they have to move out of Deadwood City "because of the schools."
Have a good weekend,
That would be Iz who placed in third (again). First place went to the same fifth grader who beat her at their own school's bee earlier this year.
Iz is an amazing kid. I wonder what she could do if she took that brain of hers out of cruise control once in a while.
Yesterday Mali was still coughing too much to attend Iron Gate. Leelo's afternoon therapist called in sick with stomach flu. About five appliances in the house mysteriously went kaput. Seymour's car broke down and he needed two different lifts to two different parts of town in the middle of afternoon school pickup and Iz piano lesson time. I hauled all three kids to Stafnord for a Leelo intake evaluation regarding a research study on autism and beating the shit out of everyone around you all the time -- except that the intake was mysteriously supposed to be today, which is impossible given Leelo's schedule. I was kind of relieved, actually, as Leelo had jumped into a fountain on the way into the clinic and was barefoot with soaking wet pants, from knees down.
Today Leelo's teacher sent him home for being "sick" (slight cough and runny nose, symptoms which in my experience are de rigeur for 50% of the kids during cold season, and should be NO PROBLEM FOR A KID WITH A FULL TIME 1:1 AIDE). This is the fourth time she has sent or tried to send him home for being sick in the past two weeks. I don't usually mind having my son home, but a non-ADHD-medicated Leelo means a boy who bolts into the yard every time my back is turned, and who will not sit still for any amount of time unless he's wolfing down some food or has stranded himself on top of the fridge or media cabinet. And now he's suddenly decided that all bottles are potential sources of that Olympian nectar, fruit juice, so he has been going through the house taking the lids off of any bottles he finds and taking a swig. I don't mind the bubble bath or shampoo so much, but I shrieked and tackled him when he started to open Mali's prednisone syrup. (Child-proof cap, my arse.)
He and Mali have spent the morning systematically shredding every room in this house. And we have to host Iz's fucking CLASS BUNNY for the weekend. I think we may be having game for dinner tonight.
Normally all this wouldn't get me down. But it's been a shitty couple of weeks, and this last crapload has me starting to buckle. I haven't stopped feeling sick to my stomach since I got the "Unacceptable Leelo Classroom Behavior" phone call on Tuesday. None of the advocates I've contacted re: Leelo's IEP coming up on Tuesday have called me back. Nor have any of the schools I've contacted for more information.
I don't understand who or what I've pissed off, celestially, but I am publicly declaring here and now that I concede defeat. Tell me what you want me to do, and I'll do it.
Turns out that the district rep's carefully worded statement to me did not actually mean Leelo could not go to school, but rather that his current classroom situation is untenable due to his behavioral issues and that we need to come up with both short term and long term solutions. The rep had mentioned to me that "some parents do choose to do home study," which, since I so desperately want Leelo out of that class, took to mean he was supposed to stay home. I should have asked more pointedly for clarification, I guess, but I have a hard time doing so when I'm trying not to let the person on the other end of the line know that I'm crying like a pussy. I wish I wasn't such a suck and a blabbermouth, but really do appreciate all the support you've expressed.
And we should all still be aghast, because it turns out that Leelo is beating on his aide to the point where she is bruised and the district is providing he with "protective gear." Since Leelo does not behave that way at home with me or with Therapists L or Y, the only logical conclusion is that his classroom environment is completely inappropriate and is driving him fucking nuts.
Leelo's aggression towards his aide is what upsets me the most. Even though she was the one who sought intervention from the district, she really does care about Leelo; she specifically does not want to be reassigned, and she does want to learn how best to support Leelo in the class. She has the innate skills and talent to succeed, were she and Leelo in a more suitable environment. But I don't see how can she succeed with Leelo in that class, with that teacher. And I still don't understand how Leelo's classroom behavior could have reached that crisis point without me being aware of it.
Short term solution: Leelo's going back to school tomorrow with lots of extra staff support, and then we have an IEP on Tuesday. During which we intend to agitate for a different placement. And to which we hope to bring an advocate. Signora Blog has kindly volunteered to do "IEP Homework" with me tomorrow night so that I can pull out the big guns should we need to do so. I hope we don't need to do so.
My preoccupation with Leelo's predicament was temporarily shunted aside by a wonderful distraction: a hot date with Seymour to see Gilberto Gil in concert. My soul was purified and set at ease, especially when Mr. Gil invoked the spirit of Bob Marley and his Three Little Birds.
Then I got home to an email from Iz's teacher saying that Iz had two serious behavioral incidents at school today. In both the morning and the afternoon, she got pissed off at students who were merely sitting where she wanted to sit. In both cases she harassed the students, both verbally and physically (pushing and/or pulling them), and refused to let it go or stop harassing the students during and after staff intervention. Gaaaaaaaaaaaaaaaah. This is a big WTF.
Iz is having a rough time at home, as Leelo currently stalks and attacks her whenever he gets the chance, despite our best efforts to keep them separate. But this is not an excuse, because her behavior is not excusable. I need to talk to her, and to Seymour about her, as this kind of behavior could lead to serious, documentable social and disciplinary problems. We don't need any more of those in this family.
Good news: Leelo doesn't have chickenpox.
Bad news: Leelo is no longer welcome in his teacher's classroom. He is too big a danger and a behavioral problem. Apparently he is having upwards of 100 violent incidents per day (and this is a 3.5 hour day). I can't believe none of the staff ever told me that his behavior was so severe and unmanageable. We have (had) a daily communication log, for fuck's sake.
He'll be at home with me until we figure something out.
If I was one of twenty or so adults in the very small martial arts studio entryway taking shelter from the pouring rain while waiting for my child to be released from a class that is perennially ten minutes late and saw a mother struggling to manage an overly active and obviously needy six-year-old who was repeatedly trying to run onto the no-shoes-please studio floor while his mom was simultaneously hip-loading a rapidly disrobing and vocal two-year-old in addition to waiting for her third child to get out of class, and that child then needed assistance getting her gear together so that she didn't block everyone else who was trying to enter and exit the studio, I AM PRETTY FUCKING SURE THAT I WOULD ASK THAT MOTHER IF SHE COULD USE A HAND INSTEAD OF EITHER LOOKING AT HER LIKE SHE SMELLED FUNNY OR PRETENDING THAT SHE DIDN'T EXIST.
Anyhow. I then got similar treatment from the normally very helpful checkout staff at The Hole. A squad of them stood around and waited for me to unload my very full cart while my three monkeys pretended I was their favorite tree. I will not choose that cashier's line again.
Mali has spent the past week transitioning from croup to chronic congested wheezy breathing, from ibuprofen to albuterol and now to prednisone. I have been told by two pediatricians during that time that our wee girl is likely asthmatic. I am guessing that Iz's febrile seizures and exotropia, and Leelo's autism and fifteen ear infections before 27 months and the resulting ear tubes have set a Required Chronic Conditions bar for this family that wasn't being met when Iz outgrew her ailments and Leelo's ears got healthy.
Mali's chest congestion makes her sound like a shop-chopped Harley. You'd think a kid that sick wouldn't have the energy to take her clothes off in public five or six times each day, but you would be wrong:
Mali can't go to Iron Gate tomorrow morning as she is still classified as contagious and her cough would make some of the novice moms shit themselves. Since I already owe people for the shift I missed last week and since no one will trade with me as I have snack and since the thought of owing TWO Iron Gate shifts gives me hives, I have begged Jo and Ep (Goddesses!) to come watch Mali at home, while I work. As soon as I finish typing this I get to go cut up five hundred grapes. Will. Not. Miss. That. Fucking. School.
But wait, we have more sickness! Iz cried all afternoon, post-aikido, telling me that her head and jaw and ears hurt and that she was going to throw up. I thought she had the mumps but it turns out she has a slight ear infection and a mild addiction to drama.
While Iz and Seymour were at Urgent Care, my friend from Mali (the one with the jewelry) called in a wonderfully inebriated state. I have no idea what he was trying to say but he wanted to say something about the jewelry, and perhaps I should try to sell it for him. But when, and how? Merde.
During Leelo's bath I noticed that what I thought was a slight bit of eczema under his arm is actually a rash that is spreading, rather like chicken pox. If you're thinking, "Payback, hippie!" then you can bite me as Leelo was fully vaccinated. Seymour will likely take our boy into the doctor in the morning (six visits for our kids in less than two weeks, which may be our new record) and then if Leelo needs to stay home I have no idea how I'm going to manage that. I'll just write that it's not going to happen, because that will make it true.
One hour ago Supervisor M emailed us Leelo's functional analysis assessment, a detailed report that will be the basis for Leelo's Behavior Intervention Plan (the legal document detailing how school staff will handle Leelo's problem behaviors). The two things that really stand out for me -- aside from the amount of work Supervisor M put into the report -- were 1) How clearly and painfully inappropriate Leelo's classroom is for him in terms of staff skills and curriculum, and 2) How ill-equipped we are are, at home, to deal with his aggression. My brain is now paralyzed on this subject, so, next paragraph.
Seymour and I spent five days seriously thinking about cutting loose our home building plans and instead moving, but we decided that we could not handle a stress fireball of relocational intensity at this time. Plus our current house is a mouldering shitheap that no one would want to buy. (Why would we put any sweat or dollars into a house we're intending to demolish?) The place we thought about was sweet, though. Had its own bedrock cave off a hallway, behind an unassuming closet door.
And I am back where I started this morning, with another heaping dose of stress inertia. Can't. Move. Every weekday of late has felt like this, or like a gag reel -- except not funny. I am thinking of letting my understudy take over my role. I'd rather go hang out at the crafts services table anyway.
Seymour's cool job got us into a preview of the Monterey Bay Aquarium's Wild About Otters Exhibit. Mali and Iz went nuts everywhere (Otters! Say, or squeal, no more!). Leelo liked the otters and especially the play space in the otter area, but kept going back to proven favorites like the surf waterfall underpass. Look how happy he is:
I haven't been this tired since I don't know when. Mali has been up most night snorfling and coughing, though thankfully not really crouping. But every time I park the car and don't get out immediately, I fall asleep. Not good. To bed.
Another overloaded day, the kind I'll definitely be wanting to remember in five years when all my kids will be soooo much easier to handle. Right?
1:00 AM Mali. Croup. Into the steamy-showered bathroom. Seymour calls on-call nurse to confirm that we are doing everything correctly.
3:00 Mali. Croup attack again. Not bad enough for ER, but keeping her up. Shower steam again. To bed again.
4:00 Mali. Croup attack yet again. Shower steam again. To bed again, where Mali gets punchy and starts telling us, "A is for Apple! And Alligator! B is for Bed! C is for Crayon..." and so on for about ten minutes. For the finale, she said, "T is for Tiger! I'm a tiger! ROOOAR!!" Seymour says that it's a good thing we didn't take her to the ER as children ill enough to be there generally don't roar for fun.
6:30 Leelo up. Seymour takes this shift.
7:00 I struggle awake. No time for shower. Call Dr. M to see if I can bring Mali in just to make sure nothing else is going on. I can bring her in at 8:15 if Seymour can take Leelo to school. Seymour agrees.
7:30 Take over remaining morning prep from shower-bound Seymour, get kids backpack-ed and dressed and lunched and watered.
7:50 Drop Iz off at Marys's for carpool.
8:00 Leave message for Iron Gate carpool pal, asking if she can work for me tomorrow as hers is the only schedule that interlocks well with mine as we pick up each other's kids from the two cross-town schools from classes that all get out at exactly the same time.
8:15 Appointment with Dr. M, who wants us to watch Mali carefully given her history of respiratory issues, and tells us that the second night will likely be worse than the first.
9:00 Coffee with friend from the past and Ep who I begged to come along as I am socially inept and prolonged one-on-one conversations make my stomach hurt.
10:00 Boy is the friend convivial. Her child, whom I haven't seen in five years, is perplexingly sullen. This is novel to me -- my kids and my friends' kids may be quirky, but they are either friendly or do not consider adults to be their immediate concern. Perhaps she didn't get enough sleep. I let her play with Photobooth on my computer and she is placated. Her mom gives me a copy of her book! Sweet.
10:45 Wonder if Mali will fall asleep if I take the long way to Leelo's school.
11:00 Nope. Put her in the stroller and walk the perimeter of the campus. Call up my mom to see if she got my plane and hotel reservations to come visit her and my dad in two weeks. She is feeling very vulnerable because her sister told her that she shouldn't let me or my two brothers bring our kids because my dad is too immune-suppressed. Also two of my brothers are putting her in the center of their low-key bickering over who gets to stay at her house. One brother, who lives close enough to visit on a lark and has easygoing free-range children, is not being very understanding about the other, oldest, longer-staying and flying-in-from-East-Coast brother wanting both guest rooms so that his easily overstimulated and routine-dependent child can have his own space. I assure my mom that she is being put in a tough spot and is supporting everyone and doing her best job and that the second brother should just come for the weekend and get a hotel room. She gets teary and I worry that she needs more support than I gave her.
11:25 Pick up Leelo who has a big log in his underwear -- first time ever at school. Yay milestones. Clean him up in school bathroom and hope no typical school yard mates come in during the process.
12:00 PM Arrive at Leelo's Occupational Therapy appointment. During his session take Mali on walk to local drug store, where they are sold out of every single item on my list, and do not have the Rx Dr. M called in for Iz. Return to OT/school early. Mali goes at school playground like she's never seen one before. Her non-stop whoops and squeals of joy indicate that she is one very sick kid indeed.
12:40 Take Leelo to potty at school.
1:00 Arrive home. Therapist L is stuck in traffic which is good because I'd not prepped the house after last night's fun Chez Rosenberg dinner party to thank JP, Ep, and Jo for watching my kids so I could go to that autism conference.
1:30 Leave to pick up Iz at school. On way convince Cable folks that I did in fact already pay our bill (true), and try to find someone to watch Leelo for 30 minutes this afternoon after I realize that I will be in Mountain View when Leelo's afternoon therapy session at our house gets out. As I'm calling, Badger calls me to ask if she can take Iz (bonus!) and because she is so kind she agrees to go to our house to mind Leelo, too.
2:00 TLF calls while I'm en route. Things are good for her and Floyd despite the fact that they chose to move to fucking Boston, so hurrah!
2:30 Meeting with builder and one of her associates, plus me, Seymour, and C our architects' project manager (Mali, finally napping, snoozes in stroller in the corner). So glad Seymour and C were there as builder anticipates our project will cost three times our projected budget. Their emotional support keeps me from banging my head on the table.
4:00 Return home to Badger, who is minding Leelo while successfully prodding Iz to complete her homework, and monitoring Moomin's work as well. Leelo is in different clothes then when I left; I investigate and find bag of shit-smeared gear on the washer. Apparently he had a second pooping-in-underwear incident today, for Therapist L. Carpool pal cals to confirm her working my Iron Gate shift tomorrow. I AM NOT GOING TO MISS IRON GATE AND ALL ASSOCIATED CO-OP COMPLICATIONS NEXT YEAR. We all play outside except Iz who stays inside to read. Mali follows Moomin about the yard, continuously telling him, "Careful! Be careful, Moomin!" Leelo demonstrates that he knows how to get onto a swing on his own and, if you push him, pump that swing. Wow!
5:00 Badger leaves. Spend next ninety minutes feeding kids, prodding Iz, slumping over computer, attending to bills, tasks, etc.
6:30 Seymour joins us. I go downstairs for reading break but five minutes later Leelo has another blowout (which Seymour takes on, bless him) so I come back upstairs and have "reading party" with Iz and Mali on the couch.
7:00 Leelo emerges from downstairs, freshly bathed. He looks like a blue sausage in his footie jammies as I think he's gained five pounds in the three weeks since he stopped taking Fukalin. We need to work on his compulsive eating.
7:30 Wash girls.
8:30 Read Leelo bedtime stories. (Seymour reads to girls in other room.)
8:45 Read Iz bedtime stories.
9:00 Go upstairs to try to work; tired Seymour stays in bed to sleep with Mali.
9:05 Mali is screaming for me too vigorously; we don't want to further irritate her throat. Return to bed with her.
9:45 Mali is finally down for real.
10:00 More online errands and tasks.
Again, I've forgotten a lot. Too sleepy.
A letter to my brother, whose wife is expecting their third child, and who is pondering names:
Please use Flickr or YouTube so you can just send out links instead of files. I can handle the files but not everyone can. I am toooo lazy to open up multiple files from multiple emails, but will happily click on multiple links from within a single email. When your third kid gets here you will understand this better.
More overused names, as per our discussion. This doesn't mean that they're not wonderful--often classic--names, but rather that there are herds of these same-named little beasts roaming our great country:
Taylor (girls and boys)
Alexander (there are five of them in Mali's school)
Sophia/Sofia (same school has six)
And you are not allowed to use any names that are just a K followed by random a's e's, i's, n's, y's r's, or d's. Examples: Kadyn, Keyana, Kaylie, Kayla, Kiley, Kailey, Kira, Kara, Kydie, Kaelyn, etc. The only exceptions are Kylie because Kylie Minogue rocks, and Kianna whom I know personally and who is a really wonderful little girl with very cool parents.
And no funky spellings. Iz is at a party right now for a girl named Andee, a spelling which sets my teeth on edge. If you're going to use geographic names, don't be a dimwit and mess with the spellings as that makes parents look ignorant even if the name is a well-informed choice. It is Brittany, not Britney; Shannon, not Shannen, Shannan, or (shudder) Shannyn; India, not Indya; Savannah, not Syvana; Cheyenne, not Shayanne.
Talk to you later, Arizona boy,
I have been feeling gross and toxic and polluted in my skin lately, and so thought that a 24-hour fast might help me feel better, and clear my fuzzy head.
Twenty-one hours later I am telling you it was a bad idea. At first it was fascinating to notice how often in the course of preparing food for three kids and frequently Seymour, I reflexively reach to pop a morsel in my mouth, too. But around 3:00 I just got woozy and incapable of forming coherent verbal sentences. Thirty minutes ago I had a small snack but still feel not great, and very slothful.
Today is Friday, my slow day. I thought it would be okay. I should have consulted Mali beforehand, because she decided that today would be her I'm Going to Stay Up All Day day. Didn't exactly help.
Anyone else have a better idea for systemic detoxification, please let me know. I'll be lying on the floor, awaiting your advice.
Some scientists are now saying that autism often appears to be caused by random mutations and deletions among numerous--up to one hundred--genes.
I realize that scientists have to be cautious, but it is hard for me to read:
"...if you expose cells to radiation, you can produce similar types of effects," Lieberman, who was not involved in the study, said in a telephone interview. "But these types of copy number variations do not (necessarily) implicate an environmental agent."Grrrargh. What else besides an environmental agent could explain genetic mutations of that number and variety?
P.S. Thanks to Gwendomama for the original link.
Check out this excellent video* by Dinah of the Posautive YouTube group (of which I am a member). The PosAutive group promotes autism acceptance** and understanding, and strives to promote awareness of the joy that permeates the lives of autistic children and adults--without denying that their lives can also be challenging.
*Disclaimer: Yes, of course, Leelo is in the video.
**The Autism Acceptance Project website appears to be down, so I'm sending you to the blog instead.
Did I ever mention that I am a sucker about anything to do with maps? That suckerdom is the only thing that can explain my reaction last Tuesday when I replied to Iz's teacher, "Yes, I will do a cartography presentation to 40 of Iz's classmates at 9AM on Wednesday the 14th, for at least thirty minutes complete with transparencies!"
Then I realized that I had either day-long road trips, conferences, afternoon panels, or evening meetings or fundraisers every single interim day excepting one. Some days had two activities. And a couple of the events had me speaking to groups and almost barfing as a result. Seriously. I was such an admittedly nervous shaky speaker in announcing a SPED PTA fundraiser at my church that when I was done, the entire congregation applauded. *Sigh*
As usual I pulled everything out of my butt at the last minute, because I don't know how to get things done any other way. Dumb. I hope I don't embarrass Iz and get laughed or stonily silenced out of the room. Eight- and nine-year-olds are a rough crowd.
As I mention frequently, entertainment is the carrot (or in Applied Behavioral Analysis speak, reinforcer) that keeps me going through my day. I can run on that kiddie/domestic treadmill for a very long time if I know that eventually I'll spend five minutes reading great blog writing while snarfing down my lunch, or watching well-done Sci Fi TV while folding the latest wave of laundry.
Except, no. And no. (Spoiler alert, BSG fans, e.g., Seymour)
I really hope Ron Moore knows what the fuck he's doing. Not that I'll be able to get Joshua Norton's opinion on the matter.
I am hoping to write up my notes on the Autism JumpStart conference and post them by Wednesday, but the most significant concept that was reinforced for me is factoring in motivation and keeping things predictable yet novel. Very basic examples: Don't ask kids which circle is the red one and then give them a green M&M; ask them which is the green M&M and let them have that one. Don't give kids a reinforcer for opening up a box; let them see you put the reinforcer inside the box and then ask them to open it. Simple, elementary, but for me at least important to review.
I may have mentioned this before, but small tasks do motivate Leelo quite a lot. This is another thing I have to remind myself about. So I have him help me with every little thing I can think of--he is the one to shut doors, turn off lights, pick things up, etc. It is hard to keep this going indefinitely and in all environments, but when the opportunities are there I am trying to remember to take advantage of them. Big praise for every success gets big big smiles from our boy, and usually a drop in aggression. I think a lot, but not all, of his aggression stems from being bored and wanting to be active but having no idea how to do so on his own.
Also, ewwww, I just realized yesterday afternoon that Leelo has pinworms. (I saw one less than two hours after telling Babysitter A, "He can't have pinworms, because if he did we would have seen them in his pullups.")
Pinworms explains much of his recent:
-Restlessness (worms in his pants rather than ants)
-Sleep disturbances (they are most active in the early early morning)
-Aggression (they are very uncomfortable; I can't imagine what an infection must be like for someone with skewed sensory perceptions)
-Inability to keep his hands off his bottom
-Constant putting of himself in the "I'm pooping" position (apparently a nice BM gives temporary relief from the itching)
He will be treated for them today, and will not be communicable when he returns to school tomorrow. However the fact that a non-treated infection is extremely contagious is one more reason why anyone who works with children should practice diligent handwashing. (My hands are very very very clean as I type this.)
Once again, ewwww. Even though most kids get them at some point.
I don't really know why I agreed to be the Secretary for our Special Needs PTA. I wanted to help and participate and that was the only slot that was open, but even as I said "yes," I knew that being responsible for meeting minutes and maintaining lists of current members were exactly the kinds of things I suck at. (Case in point: I have not yet published the meeting minutes from 14 days ago--though I'm hoping to work on them during downtime at tomorrow's conference.) I have big mental blocks about those kinds of tasks and I don't know why.
What I really want to do is work on (though not lead) the Outreach committee. Whenever I think about how shitty life sometimes is for our family, I can't help but then think about the several extra helpings of shitty affecting so many local families' lives. We're all overwhelmed, but there's overloaded and then there's buried under a crap avalanche.
I'm trying to think of how our PTA could help. My latest brainwave is laundry parties for overwhelmend SN families (show up and take away their laundry, bring it back the next day clean; we could have a party at a local laundromat and the families wouldn't have to worry about us "invading" their house or even modifying their schedule in any way yet we'd still be helping). We could also rope in local high school students who need ways to fulfill their community service requirements, since most PTA members are so strapped for free time.
Also I am trying to set up a meeting with my minister about doing community outreach without being righteous charity assholes. Minister Jules said she'd be happy to meet with us but we've not yet set a date.
Since all of these musings are coming straight of my butt, I am open to other suggestions. (Please!) And I am hoping the Outreach Chair doesn't read this blog because I'm not trying to usurp her position in any way.
I've never been to an autism conference. But I'm going to the Autism JumpStart conference tomorrow, because 1) it's cheap for pre-registrants, 2) it's less than ten miles away, and 3) it features some hardcore heavy hitters in the field. I want to hear what they have to say. Maybe we'll get some autism advocates vs. DAN! vs. Generation Rescue blowouts during the Q&A's. I hope so, because I'm all about entertainment and at this point will fall asleep during even the most dynamic lectures.
Another reason I've never attended an autism conference is childcare. What is a body supposed to do with three kids on three different schedules when one's husband's new job doesn't let him "work from home"? I have called in huge favors from Ep, Jo, and especially JP, and think I've got it covered, but damn.
Childcare orchestration is one of the reasons I get so grumpy and soapbox-y when dewy little new parents ask me what it's like to have three kids. "It's HELL," I growl, then stomp off to have a cigarette and whisky. Mali is my dear darling baby, of course, but even so I can't say I'm pleased to be responsible for figuring out another kid's schooling, screening another set of playmates, washing those additional sheets, towels, and clothes, or wiping that extra butt. Once again Mali is lucky to be so cute, and so charming; otherwise I would have very little motivation for kicking my maternal instincts into even the lowest gear.
I won't be so grumpy tomorrow, I am certain, so if you see me at the conference, please do say hi. I'll be the washed-out redhead wearing the WTF? shirt.
Leelo spent this morning at the MYND Institute, as a monkey for their imitation/regression and autism research study.
I wasn't expecting a lot of success. Leelo is taking a two-week medication break before trying Stratifera, which means that our dual diagnosis autism/ADHD boy can't sit still for more than a couple of minutes. Especially under novel circumstances.
I was right to be worried, because the sitting certainly didn't happen. But with encouragement from me and a 1:1 goldfish cracker : task arrangement, Leelo was able to fully participate. He even did extremely well, which is rare and appreciated.
Granted, the task set couldn't have been more perfect for Leelo: imitating short actions and sounds/words, and labeling items. This is what Leelo does all day! He was a poster child, and in these areas performed as well as any child his age, according to the staff. In a couple of instances I had to clarify whether they were interested in his ability to do a task or instead in his ability to understand the instructions, because they were asking questions such as "show me the one like this," which means nothing to Leelo. When they switched to "match," for the same task set, Leelo got them all correct.
The latter part of the session was a parent interview. Interspersed with--and because of--my answers, we spent some time talking about how motivation affects Leelo, about how his skills often stay dormant until the right incentive appears. For instance, does Leelo learn by observation, does he listen or watch and then act on that information? My first answer was a resounding "no." He is not like Mali, who overheard that we were going to Ambah's house and so talked of nothing else all the way to Sacramento and back. But he will watch carefully to see how I put the latch on the deck gate he wants to open, or exactly where I put away those forbidden cookies. Yesterday he noticed that I opened up the lid of the washer mid-cycle, and that the cycle immediately stopped. He then spent several minutes opening and closing the lid. I changed my original answer to "if he has sufficient motivation."
It was a blessedly short session, in addition to being a fruitful one. Twelve hours later, I am still pleased that Leelo was given an opportunity to succeed.
He got to succeed again later on during a hike at my friend's house. It was a long trek for a little guy, with lots of hills and uneven terrain. He hiked for almost an hour before he started complaining. At one point he found a lovely green meadow, plopped down on his belly, and simply refused to move until he was ready. And that was okay; my friend's yard overlooks a gorgeous valley, it was a gorgeous day, and there were gorgeous wildflowers everywhere. We hung out until he was ready to move on.
Let's go, Leelo.
Me: "Iz, if you're going to write a poem for your class you can't just spend five minutes writing down whatever comes into your head about kittens and then call that 'free verse.'"
Iz: "But Mommy, I really worked hard on this!"
Me: "I'm afraid I don't believe you, since I watched you write it. What I do believe is that you're a smart girl and that most things are really easy for you, and as a result when you have a project that actually takes work and effort, you don't want to do it."
Iz [aghast at being found out]: "You're right!"
Then I told her a story about how we first realized she could read when she was four because she started reading Where the Sidewalk Ends to us. That made her feel better. She put her nose into some Shel Silverstein for a spell, and then came up with a much better poem, into which she actually put a smidge of effort.
Leelo is no longer on Fukalin. We took him off five days ago, once Supervisor M confirmed that she had all required data for his functional assessment/behavioral plan. We'll start Stratifera next week, probably.
Since then he had a few extra-tired days of going to sleep earlier than usual, but also a couple of mornings of waking up unfairly early. Last night, though, he went to bed on time and didn't wake up until 6:00 this morning.
He is also waking up with big poops, and sometimes having them in the night -- probably because he is eating so much at the moment. This may not be related to medication; he has always had phases where he can't get enough to eat. Currently he is snarfing up to five PB & J sandwiches per day, plus croissants, bananas, cheerios, etc. It is a good thing Spring has arrived, because we can resume neighborhood walks and hikes. I'd like him to burn up some of that food energy rather than getting chubbier or shunting it all straight into mutiple dirty daily pullups.
We are also working on Mali's sleep schedule. Two nights ago she missed her nap and so fell asleep at 7:00 in the middle of her dinner. She slept up until I woke her at 7:00 the next morning, which I took as an opportunity to readjust her daily clock. Last night I took her to bed with me at 9:00. She went to sleep, finally, at 9:45--which is greatly preferable to 11 PM or 12:30 PM, even though I missed out on evening free time. (I figure Seymour and I can alternate evenings until we get her trained to go down at this much more humane hour.)
So, Mali slept in my bed, Leelo slept in his old bed in Iz's room, and Iz happily slept in Leelo's new bed in his new room. Right now getting them to sleep is more important than where they sleep.
Leelo has a love/hate relationship with swings, but we continue to encourage him since swinging is a nice, sensory-satisfying, independent way to play. Occasionally he will jump off the swing and run away howling; at other times he will plant his butt in that little yellow bucket and refuse to leave for upwards of twenty minutes (which is an eon in Leelo-time). He still insists on being pushed, but as Iz and several of her friends were late-erupting swing pumpers, I'm not too worried about that skill.
Yesterday Babysitter A and I were prompting Leelo to use language while he was swinging. Babysitter A modeled, "I like to swing!" and I chimed in with, "I like to swing, too! Do you like to swing, Leelo?"
And, clear as a bell, he replied, "Sometimes."
We both almost fell over.
It is instances like this that give me hope for him and his future ability to communicate. For a moment everything was aligned and he could tell us exactly what he was thinking.
Hearing him give such a "normal" response also makes me sad, because it demonstrates that the problem is not just whatever systemic anomalies are handicapping Leelo's ability to communicate. My inability to figure out how to reach him consistently, that is also a problem.
If anyone knows anything about treating Chr0nic Mye1ogenous Leukem!a with the drug dasatin!b, please let me know. My dad's status has changed from chronic to sub acute, and he and my mom are investigating more aggressive, less conventional approaches.
I was going to point out that I am suspicious of any drug name comprising the word "Satan," but then realized I'd mistyped and that the embedded word is actually "satin." Then again, as a Fug devotee I am obligated to remind everyone that unless you have both a perfect body and a perfect stylist, "Satan" and "satin" really are interchangeable.
Time to go stress barf.