We had yet another IEP for Leelo yesterday. This one was specific to setting classroom, speech, and OT (occupational therapy) goals. We didn't quite finish and will have to do so at another meeting, time TBD. Cue eye roll.
Our other IEPs have been relatively pleasant; this was the first one that seemed like interminable slogging. I had a hard time keeping up with a lot of the goal parsing due to jargon and accompanying phrasings, and so was very grateful to both Sage and Supervisor M for keeping right on top of every last detail and for pleasantly though firmly refusing to concede to goals that did not meet their standards. I'm not quite sure how Seymour and I could have handled this particular meeting on our own. Short version: Unless you are Sage's friend DoubleTrouble, do NOT go to an IEP without an experienced advocate.
Leelo's teacher was also a disappointment. I have been giving her the very big benefit of a very large doubt since school started four weeks ago, but her blanket defensiveness is starting to grate, and more importantly seems to be preventing her from learning anything about the kids she's responsible for. She thinks she knows what she is doing, but since she has had almost no autism training and doesn't seem to think she needs any, I don't see how she can meet the needs of an autism kindergarten class. I do not think her students should be tracing worksheets with words like "Thursday," and I sure as fucking hell do not think that any of Leelo's classmates will respond to punitive discipline language such as, "When you start behaving, then you can have X back." The class is definitely getting better in terms of appropriate structure, and more visual cues, but overall it is not meeting the "free and appropriate education" standard that Sage reminded me is Leelo's legal right.
I cornered the district Special Ed Dept. rep after the meeting and told him of these specific concerns, and asked him when the class staff was going to be getting autism training. I told him that Supervisor M was ready to do so with a week's notice. He said they're working on it, trying to get some other people in, blahbitty blahbitty stall stall stall. I do think that he is trying to do the right thing, but I'm not going to trust him to get it done in a timely manner. From this point on he'll be hearing from me frequently until things change for the better.
I didn't have time to grill him on the disconnect re: their contracting with Supervisor M about Leelo's home program, but will follow up with that, as well, personally and with vigor.
Leelo's aide, Rosie, was at the IEP. I like her. She has fantastic potential. She is unflappable, brushed off any worries about Leelo occasionally decking her, and said that sending him in underwear (so far it's been pullups) was no problem for her--even with the looming threat of stinky accidents. She is sweet and lovely, and has the intuition that no training can provide. But since she has had zero training, she mostly ends up following Leelo around rather than prompting him or guiding him. Supervisor M can't train her outside of class because if the district does end up contracting with her (Supervisor M), it will be a conflict of interest. I am not sure what to do in the interim. Perhaps I will get her her own Behavioral Intervention manual. I wonder if it would be okay for her to observe Therapist L during one of Leelo's home sessions.
**Sigh**
Leelo himself has been very sweet and wonderful and chatty lately. He's been asking for kisses and hugs, with me and with his sisters too.
Plus he's taken a couple of voluntary shits in the toilet, and that's always worth a disco move or two as he hasn't done so for many months and actually has been withholding his stools during the day, which sometimes means night shits (but for a different reasons than those in the past--those were due to lack of control, these are due to too much). Maybe he's finally rounding the corner from terrified bowel awareness to resigned bowel acceptance. Last week he even said, "I want to go poo-poo, Mommy," and squeezed out a pellet, which is significant.
I am trying to be more consistent about my part in his bedtime routine, in the hopes that a dependable routine will help him settle down before 10 PM. Right now we read a chapter of a book (right now it's James and the Giant Peach) to all three kids, then Leelo and Mali get read Goodnight Moon and Time for Bed. Leelo really seems to enjoy knowing what to expect, even though he's still not going down at a reasonable or reliable hour.
I took him and his sisters to the zoo* a couple of weeks ago. Leelo participated in the visit more than he ever has before, recognizing and pointing to the zebras and giraffes. He also shocked me by not only eating but asking to eat Iz's kettle corn. The texture normally makes him gag, but he was a hungry boy and so was willing to chew through the unpleasantness for the sweet salty reward. The only real minus to the trip was that I didn't feel capable of taking all three kids on the miniature train by myself, which was a big disappointment for the entire, very vocal, trio.
More Leelo notes, abridged:
He has renewed his love affair with the book Brown Bear, Brown Bear because he knows the ends of every line and anticipates each page, and I praise him highly each time he prompts me.
He can sing Jimmy Crack Corn in its entirety. Thanks, Disney! He has also busted out singing at he top of his lungs: "I can do the Can Can! If I can then you can, we can can can yes we can can can..." I was very surprised because he's usually a whispery boy, post-Adderupp.
When I spilled some milk on the counter, he said, "You need to clean the towel, Mommy." Not quite the phrase he needed, but I understood what he meant and that was great spontaneous and non- "I want..." language.
He has also been asking me, "What are you doing, Mommy?" The first time he said it I think I really did fall over. He has done it twice since. It was totally spontaneous. He did it in front of Therapist L, too.
Earlier this week while we were walking out of Sewerage with Babysitter A, Leelo suddenly declared, "It's Beautiful!!" Well, it was a really nice day and they do have a lovely little flower garden. But, again, everybody almost fainted from the shock.
A few nights ago we were all playing that we were sad. Leelo participated, too, and got a big kick out of it.
Not so cheerily, he has been experimenting with slugging and scratching. He seems to save it for Babysitter A, and for us. I think we need to work on tempering our reactions, as we did the last time this behavior emerged. He loooves big reactions, negative or otherwise.
Even though I'm recording a lot of good language here, when I reviewed the last two years' posts for Mali's milestones I noticed that Leelo's language seems to have stagnated in many ways. (I also noted that his language seemed better whenever he was on B12 shots, which we haven't done for about a year, and which his dietician thinks are a good idea for limited diet vegetarian boys.) He had some really great verbal leaps last year (especially towards the end of last September). Then he had his typical shitty winter, and there's not been much progress since. It seems like he's had an overall decrease in spontaneous, complex, and differentiated language. He uses "I want..." for almost everything, he has started speaking under his breath, and he gets a frustrated "deg- deg- deg-" stutter that did not exist before Adderupp XR and which he will not do for Sage during his speech appointments.
Mali is starting to overtake him, verbally. She is 21 months old.
His functional levels don't really seemed to have changed since he was 3 years old. He was tested by autism clinic at Stanffford at that point, by the MYND Institute at age 4 1/2, and then by YouCSF this past January at age 5. Not much changed between those three visits--he rated at between Mali's age and 2 1/2 for most things, all three times. I don't understand how he could achieve those levels and then plateau for so long. I am also concerned that he doesn't retain skills already achieved if he doesn't practice them, for instance losing his once-dependable, "I'm fine, thank you" response. Sometimes all this makes me worry that his condition is a very gradual case of neurologic degeneration. Now you know one of my deepest darkest fears.
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*Side notes about the zoo:
I don't really like zoos. I go to prove to my kids that the animals in their books are real. Plus zoos are usually good places for Leelo. Personally, I think they are animal prisons. I usually work through my discomfort by telling Iz a little bit about the history of zoos, how they used to hold even the largest animals in very small cages, how the animals would go stir crazy, and how most modern zoos are making an effort to give the animals better and more appropriate spaces. I ask her what she thinks of the animals' lodgings.
During this last visit, I almost soiled myself laughing when a huge silverback gorilla intentionally scared the shit out of a bunch of visitors. I watched from the opposite side of the enclosure as he hid at the side where the other people couldn't see him, waiting for them to get right up to that area's clear acrylic viewing barrier. The he sprang up in front of them, and pounded on the barrier a few inches from their noses. It was really loud! They all screamed and scrambled. Excellent!
Iz and I managed to convince some boys her age that the zoo was having a problem with kangaroos escaping by climbing and then jumping out of the trees overhanging our viewing area. Then we started talking, loudly enough so they could overhear us, about how big male kangaroos are very dangerous because they can disembowel humans with their powerful clawed hind legs (this is true). Then we started teasing each other about the rare tree-dwelling great white sharks, at which point I think the boys started to realize that we were not entirely dependable information sources. Perhaps you have realized something similar.
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