8.16.2007

Complete Unedited Brain Download Mali is asleep i...

Complete Unedited Brain Download

Mali is asleep in her own bed rather than her parents' for the first time in her life. She didn't fall asleep there and she probably won't stay there, but it is a start. She also peed in the potty for the very first time today, shortly after I mentioned that some kids get M&M's for peeing and pooing in toilets rather than in their pants. Rah.

This afternoon Iz made a fuss about wanting some frozen pizza. Mali put her finger to her lips and said, "Shh, Izzy! Be patient!" Yep, in less than ten days it is already evident that this kid goes to Trident Montessori.

Yesterday we asked Mali if she was a zebra. She replied that no, she wasn't a zebra, she was a green boat. This morning Seymour asked her if she was a green boat. She said, "No, PINK."

Leelo is going to go to a county classroom; I signed the authorization papers yesterday. I feel good about this option: the staff is experienced, the facilities and playground--and even the natural light in the classroom--are very Leelo-appropriate, it is practically an all-autism campus, and Leelo's not being completely potty trained will no big deal. The funny thing is that even had I done spectacular long-range rather than hurried crazy short-term planning, I would probably have ended up with this same decision. Now I need to tell the good folks at ALSO that Leelo won't need the space they're holding for him. It shouldn't be a problem; the director mentioned that she'd been getting a call a day from families looking for placements.

I did look at another really wonderful class at a Rainbow center out in Union City. As I wrote to some friends:

Rainbow was great, really great. I can see why Supervisor M insisted that I at least go to see it. Everyone there is moderate-to-severe certified, or working towards it through an integrated credential program offered at nearby Cal State Hamward. All the kids have individual three-ring binders: on the cover of each binder is a spreadsheet of IEP goals for tracking, inside is behavioral and discrete trial data tracking. I have never seen this in a class before today. Each child also has a nicely organized accordion folder containing all of their individualized materials, which the staff are responsible for creating, maintaining, and updating. The entire staff goes through intensive three-day seminars every year focusing on "behaviors," on understanding them, redirecting them, etc. The aides all come from behavioral backgrounds. They have QA behavioralists come in periodically to evaluate the program and offer suggestions to help increase overall effectiveness. It really was lovely.

I still don't think it will work for us as it is just too far. Also it is on a middle school campus; while this is great in that they're able to bring in a dedicated set of "buddy" volunteers from that school for generalization and socialization, it also means there is no playground per se, only a field and a PE yard. There is an APE [Adaptive Physical Education] room on campus, though. And while there is a dedicated OT [Occupational Therapist], there is no OT room. The OT brings in the materials and tools; however they also spend a lot of time in the classroom assessing general classroom OT and sensory needs. Also the classes are housed in portables, so the facilities are not as nice as County in terms of class size, sinks, adjacent bathrooms, ability to have separate work cubbies, etc.

I didn't get to see the teacher for the class that would work for Leelo, as the current summer school class was [...] not taught by the incoming teacher.

Overall I am thinking that it was great for me to see Rainbow and to read your emails as I have a lot of material for formulating Leelo's IEP (i.e., I really want to see those IEP-goals-tracking binders appear in Leelo's classes from now on). Thanks again for all your input.
The county class starts two weeks from today. I have to meet with the County folks as well as Leelo's Deadwood school district contact, etc., to update his IEP/do an intake/figure out busing/driving. County is at a segregated site, which means there are no typical kids on campus; it's all Leelo and his friends. I really could care less. At this point we need to get him into a supportive environment with experienced staff who can help him learn how to function in a (supported) classroom rather than a 1:1 environment.

Although today and yesterday I'm not so sure I even care about getting him out of a segregated site; all I care about is trying to figure out how to help him not be so violent. Yesterday during a potty session I was so tired that I dozed off as I was reading him a book. This set off a primal switch in his brain; he grabbed my hair and slammed my head into the wall, then proceeded to beat me around the face, then scratched my face and arms, and then jammed his fingers into my eyes. All this before I could recover.

I have not really been able to talk since. It has put me in a very deep funk. I am really, truly worried. Even though I gripe a lot here, I don't think I gripe this much IRL, and am usually cool with Leelo being Leelo, with him being funny and off and doing his own thing, but not having it hurt anyone so who cares. This violence is very different; if we don't get it under control it means that we can't take him out and that his sisters can't have friends over and that they themselves are in danger. And that either we medicate him into a stupor or are forced into other options that I can't even type.

Supervisor M came over today and helped talk me through the funk a bit. She gave me some practical advice for avoiding conflict (keep myself seated higher than him; use my forearm to block him, keep myself out of his line of sight during trying scenarios, as much as possible). She also mentioned that she has a colleague who trains special needs professionals to assess and manage violent behaviors without resorting to restraints. She suggested that we try to ensure that the district and/or county has this training, and that we should definitely consider hosting a training session for all friends, family, and professionals who deal with Leelo. I was thinking it might not be a bad idea to have SCEPTRE, our special needs PTA, see if we could sponsor a community seminar as well. It is about $1K for 20 people, though, so we'd have to step up our fundraising.

We also talked a lot about Leelo's pottying. He is pooping in the pot quite a lot, and this is great progress. Even with a day like today:

Backwards day. Poop accident in middle of night. Poop accident shortly after waking up. Poop in pool at 6:00 PM. Pee accident at 6:15, ten minutes after being taken to the toilet. Poo accident at 6:30 PM. Pooped in potty for Seymour at 8 PM. All accidents were avoidable in hindsight, except mid-night one, which I think happened because he didn't have his second BM yesterday: Shouldn't stay in pool in afternoon for more than 15 minutes, seems to swallow a lot of pool water so going about 20 minutes after exiting pool is good; letting him watch TV while I make dinner is a bad idea at this time even if he's just gone to the toilet ten minutes beforehand.
Supervisor M said she has some families who are lucky to get one pellet in two weeks. And I'm feeling rather positive about Leelo's toileting in general, because even with this setback day, his progress and clothing casualties aren't really all that different from those during the purgatory potty training of one resistant little girl named Isobel Rosenberg.

Speaking of whom, yesterday Iz was aghast when I asked her if she intentionally disobeys direct requests so that we will give her negative attention because she's not getting enough of the positive kind. "YES," she said, after she'd recovered her composure, "you give Leelo and Mali ALL the attention!" She then outlined what would be her perfect Mommy-and-Iz day, which would take place in SF: Fries in Hayes Valley, desserts at Citizen Cake, walk to City Hall, go to the Exploratorium, drive across the GG bridge, and maybe go to the Zoo. I think it's doable. Will have to chat with Seymour about making this happen. Also I think she should give up piano. She's not really that into it and her life is nuts and pressure-filled enough. Aikido and Spanish are more than sufficient; probably too much, really, on top of her very intense school.

The kids' fall schedules. Gack. Haven't even figured out what we're going to do for Leo's home program, how I'm possibly going to get all the kids to their three separate schools in three far-flung locations AT THE SAME TIME, how we are going to manage afternoons, what we are going to do in the afternoons when it gets too cold to swim.

As I said, this is my fret space. If you actually called me up and asked me how I was doing, I would say, "Fine." I think (hope) I even did a pretty good job of being a sympathetic listener to my SIL Bree who called up this afternoon (in the middle of Leelo's shitfest) freaking and rightfully so, about the fact that her older girl, Leanne, just got diagnosed with a mild form of epilep5y. Which almost always hits siblings, and Leanne's has a four-year-old sister. And is carried in families--perhaps it's time for another Leelo MRI or EEG?. I remember how terrifying Iz's febrile seizures were--one time she was altered, and terrified, for hours--and cannot imagine that articles like this are making Bree feel any better. I didn't tell her about a single thing that was going on at our house. Not the time.

Think good thoughts for us, and my niece. And Seymour, who will be thirty-eight tomorrow.

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