I will write up the YouCSF visit in more detail later, but if my site traffic is any indicator then many of you are concerned and damn well want to know what is brewing behind my cryptic Label comment. Suffice it to write that Dr. G. E. informed us that in his opinion Leelo is mildly mentally retarded. He based this mostly on the report from the MYND Institute that demonstrates Leelo operating as a 2 1/2 - 3 year old at every measurable level.
Now, I have been looking at that same report since August. The figures were right in front of me. However, since the nice people at the Stanffford Autism Clinic assured me almost two years ago that Leelo was not mentally retarded, it never occurred to me to acknowledge what the more recent scores might mean.
Two days later, it doesn't really mean that much. He's the same boy, he's awesome and snuggly and wonderful, and even if the label is accurate, his prognosis is still great. He hasn't changed one whit, this new opinion is not going to have any effect upon his program or how he is treated, because his education deals with his unique traits rather than trying to get him to adhere to a specific, rigid curriculum.
Even so, I really shouldn't have been so surprised. Depending upon which sources you cite, up to 75 percent of people with autism are also mentally retarded. So the odds are certainly not in Leelo's favor.
Dr. E admitted that autism interferes with a lot of these tests, and lowers the scores. Supervisor M stressed this as well. She also reminded me of how quickly Leelo learns things, of how stratospheric his initial progress was upon instating his behavioral program, and how she still thinks he's going to make great strides.
The age-adjustment makes sense when his recent behavior is taken into consideration. In Dr. E's opinion, Leelo has entered his terrible twos with a delayed vengeance. He was easygoing before because he was still, mentally, in a happy twilight toddler mindset. All this crappiness is a phase! We can deal with phases.
It is two days later and my fog has almost completely evaporated. It had more to do with how people react to the label, and more specifically with what it would mean to Iz and Mali to have a brother with that label, two things I am no longer so concerned about. I am even slightly mortified that I cared so much, because it shouldn't make a difference--a special needs kid is a special needs kid. And my special needs kid is still the cutest, cleverest, fastest, handsomest, and wonderfullest one around. So there.
Many things accomplished these past two days:
-Turned in Leelo's Special Ed application docs to Deadwood school district. Only took me two months.
-Refrained from screaming profanities at my mother after she gave me shit for "procrastinating" about installing a gift she sent Iz just last week, and wouldn't let it go even after I told her that I don't have time to clean under my fingernails or brush my hair, let alone deal with non-critical projects.
-Had coffee with buds. Aaaah. Afterwards went to look at house that I could be quite happy living in and thereby side stepping the whole two-year building process. Seymour will tour it tomorrow.
-Refrained from leaving baby strapped in high chair on back porch with door shut after she spent the past two days screaming whether I picked her up or put her down, and also refused to sleep for more than/needed to nurse every 90 minutes. Get those teeth already!
-Made arrangements to attend Grace Davis's Woolfcamp, with Mali. May leave Mali there if she keeps this up.
-Added Elsewhere to my blogroll, five weeks after the treat of meeting and chatting with her. See entry above about fingernails and hair brushing, and sincere apologies nonetheless.
-Put Leelo back on his previous high-dose B containing multivitamins. He is mostly back to his regular program and attitude (lots of occupational therapy is helping, too). He even spent a good long time playing with Seymour tonight, for the first since this last horrible phase began. He is still completely pissed off at Mali, though, and is absolutely physically hostile towards her.
-Was shamed by Iz because I cannot roll my R's perfectly, without exhaling first. I must acquire Professor Higgins's flame machine for practicing.
-Finalized Special Needs trust for Leelo so he'll be good no matter what happens to us. Also added Mali to will/trust.
-Smogged Seymour's car. This involved trading cars and so putting all three of our kids in the back of a compact car for the first time ever. No blood was spilled this time.
-Drove by house mentioned above. Sighed.
-Arranged visit to possible alternative preschool for Leelo so I can get the fuck out of Iron Gate.
-Interviewed final therapist candidate for Leelo's open Wednesday slot. Will make decision by Monday. **update** She just accepted the position! Hurrah! This means that Leelo's Wednesday afternoons are now back on track!
-Good chat with Seymour. Good for me, anyhow--he mostly sat back and listened to me natter.
-Good chat with Supervisor M this morning, about our YouCSF visit and reevaluating bits of Leelo's program and his compatibility with Iron Gate. I told her how painful it is for me to work in the classroom and see him be so separate, and different from his peers. Tried very hard not to appear as attacking her and her program, but I think she was still a bit hurt. She said she would work hard to demonstrate the value of Iron Gate to Leelo, but conceded that it might be good for him to attend for fewer days. She also stressed that she worries about him becoming a "special needs classes junkie."
She was also very reassuring about my frets re: the YouCSF analysis. Such a great person.
-Thanked heaven that Leelo's Friday afternoon therapy sessions resume next week.
Two Milestones as well:
-Mali turned 14 months old.
-Leelo used a regular seatbelt properly for the first time ever! He allowed it to drape diagonally across his torso rather than putting both arms over its top. Perhaps we will not need to use a five-point harness seat for him indefinitely. That would be cool.
TweetI Will Be Very Good
One of our friends--and I will not say who--is now a baronet. (Does that get capitalized? Iris?) I have promised his partner that we will not refer to him as "Sir" in any kind of ruffian Yankee mocking way, for at least four weeks.
But it will be difficult to wait to salute him with, "Greetings, Sir Loin of Beef!"
TweetPublic Service Announcement
Blog readers* and e-list subscribers worldwide:
You are hereby invited to distinguish between a dissenting opinion and a personal attack. For those of you experiencing technical difficulties, I will hand you a shovel so you can dig your ass out of your navel.
That is all.
*not mine, of course.
TweetBecause I Am Ceasing to Worry About Such Things
Here is my latest Iron Gate newspaper article, written last night. You may sense a rather cavalier attitude.
Last week I met up with the lovely Anye from the 3 Day class, and together we praised the name Iron Gate Nursery School to the Preskool Preview Evening rafters. We drew in many interested local parents and hopefully enticed several score to our upcoming Open Houses.
Anye was of course gracious and sage, expertly fielding questions from passersby in her calm, friendly way—while also handling a volley of queries from yours truly about her multilingual talents and international lifestyle (I am such the sucker for vicarious glamour and adventure).
Meanwhile, I was hopping up and down like the bug-eyed enthusiast that I am, listing the multitude of factors that make Iron Gate the excellent child- and parent-centric place we all know. "No, really, I have never encountered a school quite like Iron Gate! It is unique, like your child! The teachers are so wonderful, so experienced; the families bond so strongly-—so important for the many of us Peninsula types who’ve moved here from Far Away and miss having a support network, don’t you think?"
I had to be honest with some people, though; I do not think Iron Gate is for everyone--it really is a matter of personality as well as family circumstances. The working mom with two-year-old twins and a rather inflexible schedule might think that the school itself is marvelous, but that the parent education, fundraising, and maintenance duties are incompatible with her extremely minimal free time. I write "might" because I know many of you juggle responsibilities that would knock out a mere mortal, all without breathing a word of complaint to the rest of us.
I may have said some other outlandish things, but please know that they were purely in the interest of getting people to come to the Open Houses so they could see the school, and meet our community, for themselves. So, perhaps those of you who are working at the Open Houses can gently inform potential parents that we do not in fact feature on-site masseuses and custom-brewed coffee drinks during shift breaks. Sorry for any inconvenience or confusion.
(And yes, dearies; I am totally kidding. Have a great February.)
I spent yesterday walking around in a fog. It has yet to dissipate.
Seymour and I took Leelo in to the YouCSF autism clinic for what we thought was a psychopharmacology consult. Turned out it was actually a very thorough reassessment of our treatments and approaches, and included giving Leelo a new label.
Seymour told the consultant that he had already suspected the new label, but I got caught with my naked butt hanging out in the wind yet again--and it got paddled.
I am still too raw to write about it in more detail--and haven't even been able to talk about it with my spouse--but hope to do both tonight.
TweetIz Gets Savvy
Iz's comments are starting to waffle between the innocently precocious, (e.g., "Mommy, don't sigh! I am SERIOUS!") and the calculatedly so (e.g., "I really should have used more pronouns in that sentence."). She knows she's smart, and she isn't afraid to broadcast it.
Her showing off is eye-narrowingly irritating to me, on a purely reflexive level. But she'll never know, because intellectually I think she has every right to be smug about her nimble little brain and its amazing innards, and in front of her, I pretend I am that same kind of smarts-proud person. My role-playing takes a herculean effort, because I am still struggling with the awful cultural ingraining that girls should be deferential, and should downplay their many skills and gifts.
I keep telling her that I know things because "I'm really smart," about my considerable education, and how good I am at the things I know how to do. On the flipside, I will concede frankly when I do not know something--but will tell her that I know how to find out, or that we know someone who can tell us about it. No shame in not knowing something--lots of shame in posturing that you do (unless of course one's fate depends upon the bluff).
I also stress how intelligently valuable all her friends' moms are. "Ep knows how to make web sites! Jo has written two books! Badger is finishing up her thesis, and it's all about translations from Spanish! JM has a PhD--do you know how long and hard she had to work to get that?" I cannot bear the thought of her taking all these incredible women for granted, for viewing them solely as the drivers and grocery-shoppers and party-givers that I thought I grew up around.
I also make sure to take compliments well in front of her. This is the real nail-puller. Try giving me a compliment when Iz isn't around. Just TRY.
Not a one of these things--except praising my friends--is easy for me. Being confident doesn't come naturally, but I will do what it takes to appear that way because my daughter does not need a self-deprecating intellectual doormat as a role model. And neither do any of your daughters.
Today that is Sage (Amiga). And not just because she handles Leelo's speech therapy sessions with such good natured aplomb. No. It is because she had the balls to stand up to Teacher P--in front of the entire class, which includes not a few people who prostrate themselves whenever Teacher P walks by--and advocate for a child who Teacher P had singled out as needing Firm Discipline. In Sage's opinion (and mine, though I hadn't articulated it as well, or in public) he is a sensitive perfectionist and NOT a problem kid. Honey, you are The Shit.
I do admire and respect Teacher P. However she can get it into her head that a certain child is a certain way, and then can react more strongly to that child's transgression than she would to another child's identical action.
Sage (and Anya, and Laurel, Iron Gate Prez) are also my heroes because they took over for me on cleaning up after The Mother of All Snacks during tonight's class. I had Mali, she was a clingy yowly (though occasionally cute and charming) baby monkey and I was of no use to anyone.
I will not be bringing Mali to any more night classes. I wouldn't have brought her tonight, but Leelo had a crappy afternoon that culminated in his kicking me in the face--square, and hard. I couldn't find a sitter to help Seymour out during my absence, and did not feel that it would be the morally responsible thing to leave all three children with a person to whom I intend to remain married.
TweetWhy It's Sometimes Better to Hire The Entire Justice League of America Instead of Relying Solely on Wonder Woman
Leelo had a much, much, much better day today. In fact as I write this it is 11:50 P.M. and he hasn't yet tried to escape from his bed once since his 8:30 bed time. This in contrast to the two-hour-plus combat tours his bedtimes have been for the past few weeks.
He was also much more mellow this afternoon at home, after Iron Gate. He was happy to hang out and watch a video, or play with his keyboard, without the aimless circle-wander-stimming and passersby-attacking of late.
It could be that sleep deprivation finally caught up with him, but I suspect it has more to do with the approach Therapist M the OT set him up with, and that Therapist L (and I to a lesser degree) followed up on for the rest of the day.
This morning was only the second time Therapist M had seen Leelo in the last six weeks, due to Winter and Monday holidays. She was visibly shocked by his behavior, by his hitting and chewing and running into chairs, etc. She said that there was probably some negative attention seeking in the mix, but that in her opinion he was acting out because his sensory needs were at an all-time high.
So, she worked on them. In her own words, she went "back to square one." Though he initially resisted deep pressure work on his limbs, once she got him to comply he was tangibly calmer. She did "squishes" on the large exercise ball. She also got him to do a lot of work that put force on his limbs and joints--hanging from the trapeze, pushing furniture around, picking up heavy objects and carrying them. (Apparently going on walks and to the park, which Seymour and Babysitter A and I have been doing to try to wear him out, is valuable exercise--but is not quite what he was seeking.) Once he had mellowed out, Therapist M then let him play and pour rice, etc. They did all sensory work, no motor work at all.
Therapist L then incorporated a lot of similar techniques into his morning ABA session, and then again while he was at Iron Gate. I did as much as I could during lunch and after we got home.
But I must admit, this afternoon's Leelo had almost completely reverted back to the boy we know and love and have been missing during his evil twin's recent reign of terror. He was even able to take a bath with Iz. He only took one half-hearted swipe at Mali. I cannot tell you how relieved we are this evening. I hope it's not just a fluke.
Mali is not one to let the stress level abate, though--toddlers like consistency and so she doesn't want her mom to be any less agitated than is normal! This is why she nursed every hour all night long, and then spent the entirety of my Iron Gate work shift this afternoon screaming like someone was shoving red-hot splinters under the fingernails I've still not trimmed.
She's yelled and protested before, but this was different and so intense that I couldn't leave her there. Being not only a practicing hypochondriac but projecting one, I immediately started fretting about meningitis. Thing is, though, the moment I picked her up she was Little Miss Sunshine. I guess this would be Separation Anxiety, Round Three. I am not amused.
Though I was amused when, at the end of class and after Mali's formal SA diagnosis was declared, Teacher P got nose to nose with our baby and said in a vaguely threatening whisper, "Get over it, Mali."
TweetAnother Rough Day
Leelo's gone to bed at or before 10:00 for two days in a row. That is progress! We did not spike his rice milk with any kind of barbituate or alcohol, nor did we tie his ankle to the corner of his bed as my mom used to do to my oldest brother. Nope. Good old fashioned putting him back to bed 50 or 60 times in a row is all it took.
The rest of the day sucked.
There were good parts. We all started busting a gut when Leelo cornered me and made me his performing monkey, demanding "Where are your eyes? Where is your nose? Where are your ears?" and helpfully showing me where said body parts was located (Ow, my eyes--but still funny).
He had short periods of calm, when he would allow me to lie on the couch with him and snuggle as he watched a video, or I could massage his arms and legs with lotion while singing him a song, or he would sit in my lap while I read him three short stories, or he would dance around in a cloud of high-test glycerinated bubbles.
Otherwise, though, he spent all day--ALL DAY--in attack mode. Trying to run into the nearest adult and occasionally after Mali or sometimes even hapless Pat the Cat, and then hitting us with both hands while grunting/yelling. When he wasn't doing this he was constantly chewing on some sort of string or rubber band (his official "chewies" aren't doing it for him) and walking around in circles. He didn't want to do anything else, except eat. Any time we tried to redirect or guide him, he had a falling-on-the-floor tantrum. Dressing or toileting was accompanied by a flurry of kicks to whomever was assisting him.
It is simply not fun to be around him right now, but we are doing our best not to let him sense that; to try and keep our voices and actions as positive as possible. As I told Babysitter A, this is the hardest it's been for me with regards to Leelo since his initial diagnosis. He is exhausting and depressing his parents as well as every single person responsible for his care.
Also we have decided that for now we cannot put him in the church nursery, and so Seymour and I will most likely have to alternate churchgoing weeks. I was already bummed about being at church without my mate when the RE director sat down with me as I grumped with Mali in the nursery (our loud baby made it through most, but not all, of the sermon before drowning out the minister and being removed) and gently got me to confirm that Leelo would not come back to church without one-on-one support provided by us. I know that we can't expect people at church to give Leelo the support he needs, but am still pretty sad that they felt they had to draw that admission out of me.
I want my Leelo back. I want this monstrous little shit who took over his body two weeks ago to leave and never come back. I know it might be weeks or months before that happens. Of course I can deal with it, and would even if I had a choice to not do so. But I do hope that his team members feel the same way. I don't know what we'd do if one of them decides that they can't take his behavior any more.
Cheery notes: Mali now clearly enunciates "Pat" when trying to torture the cat. Before all she had was a "Paaaaa." I'm sure both utterances are still equally terrifying when dropped within earshot of said kitty.
She is a fantastic, super-bright baby. There will be no doubt that--if anything happens to her autism-wise--it will be a bonafide regression rather than a failure to develop.
TweetWe Have Figured Out Some Things
Leelo is still having a shitty time going to bed. Last night was particularly trying as he was so sweet and compliant with Seymour for the first phase, lying down, saying "Daddy's here," and similar phrases, stroking his Dad's face, and seeming to be drifting off. Then some toggle inside his head got bumped for no reason Seymour could see, and he was off into violent defiance land. Finally went to bed past 11, even though he'd been awake since 6:15.
Of course it could be anything--a developmental phase, thinks Seymour--but I am suspicious that it does correspond almost exactly with our switching vitamins, going from the higher dose autism specialty mix to the general healthy kids mix. I only got a trial size of the vitamins, so we can easily switch back to the previous ones and see if that helps at all.
What I have definitely noticed is that he was sweet and calm and wonderful with me as I kept things mellow and gave him as much attention and affection as I possibly could, stroking and kissing his head and telling him what a fantastic boy he was all day.
However, when we veered into Afternoon Errand Land, where he was dragged from the doctor's office (plantar warts for kids = compwnd W) to the grocery store to Merlin and Sophie's school to pick them up to Iz's school to pick her up back to our home for an impromptu playgroup where I was tending to five kids rather than just him and Mali, all within the space of 2.5 hours...then he started acting out again. What. A. Shock.
So I will make sure things stay as calm and anti-frenetic as possible, and that kids come over with adults to address their needs so that I can make sure Leelo gets all the attention he is needing right now. Overstimulation and rushing are bad. Most parents in my situation got this a long time ago.
Other notes: Miss Mali surprised me again yesterday by yanking the remote control for Leelo's roving insect toy out of my hands, and operating it herself. Someone may have shown her how to do this but I don't think so--I think she spent a very long time watching Merlin do it (while she was joyfully chasing the bug, to Merlin's delight).
Iz is at Violet's for a slumber party. I hope it goes well, as her teacher pulled me aside yesterday and told me that our girl's been having more social issues regarding kids teasing her for being younger, defiance to people in authority (mostly when they try to take books away from her so she can join the rest of the class), and also with perfectionism and always wanting to be first and answering all the questions every time. Sigh.
Final surprise: Leelo got weighed at the doctor yesterday. He weighs 51 lbs. My God. And oooh irony--this discovery less than two hours after the blood donation people told me not to lift anything heavy for 24 hours. Riiight.
Interviewing lots of potential Leelo therapists this weekend. Wish us luck! And have a good one.
Bad moms coffee always perks me up. Even though Badger wasn't able to come. But Sandia came and we even got her to halfway promise to try to come regularly, so that was excellent. It is a goofy thing to write, but her positivity usually brightens up the room. I am grateful to her. Should really try to arrange more playdates with her small charge Noe, and 10 weeks younger (though 50% smaller) Mali. I think Sandia spends much of her day as a one-on-one nanny whose job could go away at any minute being quite bored yet anxious.
Worked at Iron Gate this afternoon, and it was fine. Leelo was much more on, and has been all day. Plus today he figured out that he can wave "hi" or "bye" to someone and that suffices as a salutation, even if his mouth is full and he can't talk.
Tonight is my babysitting night! Seymour is going to go hang out with Murphy and play chess, I am going to work at an Iron Gate function for two hours as I am too low on maintenance/work hours, but then me and my book and iPod are going to chow down at Litt1e Sichuan. Mmmm. I will also--thanks to the convenience that is EyeTunes--finally check out this album by this guy who went to high school, and was in marching band with Dee and me and Ms. L.A.M.B.
Oooh, things with Leelo have just sucked lately.
I don't review older posts, so bear with me if this is retread.
I do realize that we have up to this point been exceptionally lucky with our good-natured guy and his willingness to tag along anywhere. Not all autistic kids give their families such leeway. However we are now entering a different phase.
Leelo doesn't like going on errands. He doesn't like sitting in his chair in restaurants. He is now large, strong, and vocal enough that trying to get him to comply is no longer worth the emotional and physical wear-and-tear. He is hitting and kicking others, and himself.
He is jealous of Mali to the point where I can no longer leave her unguarded anywhere near him, as he wants to beat the shit out of her. I even had to move their car seats farther apart--I thought he couldn't reach her but I was mistaken. No more baths together, of course. Not with Iz, either, as she gets beaten on, too.
Some of this is good, in that jealousy is an interactive and reactive emotion, and his tantrums or outbursts also demonstrate emotional development. Plus his blow ups almost always have a traceable cause (transitions and/or being denied). Under Supervisor M's direction, we are going to redirect him physically while ignoring him verbally, as we do not want to provide negative reinforcement of this behavior.
We are also (and I know I wrote this before) going to make a sincere effort to spend more one-on-one time with him. And incorporate the music that he loves throughout his program, as well as get a music class going for him.
But in the meantime, he continues to stay up every night past 10:00. We thought he'd sack out early after his marathon bouncy-house session during Iz's party, but no. Seymour got him up extra early this morning. No dice. If we try to put him to bed, he will get violent. So he gets to come up and watch the late night specials with us (tonight's offering while I nursed Mali to sleep was Lorenz0's Oil, as I figured a little context was in order lest I get to feeling too sorry for myself).
But, dammit, I do feel all sorts of self-pity. The walls of our lives are caving down in on us, and making our world a much smaller one. Mali and Leelo together are an unbelievably difficult combination (for me) and with Iz on top things get combustible. All I want, all day long, is a break! One of Marroqui's friends is looking for babysitting/nanny work, so I just may have her come help out one morning a week so I don't have to do all my work (a staggering amount of non-child-care responsibilities) when I'm supposed to be sleeping.
This afternoon my mom called. I told her it wasn't a great time to talk as Leelo was having a tantrum, but she wanted to talk and he calmed down so I stayed on the line. I told her how rough things were for both me and Seymour right now, how we're worn down and drained and have no energy, how I keep nodding off during the day even with coffee, how challenging the kids all are right now and how I guess we'll just have to push through it. I guess I am really touchy right now as she didn't even comment or acknowledge that things were brutal, but instead started talking about some other kid with mild issues. Gaaaah! She is always complaining that I never talk to her, but then I do and she misses my cues. Perhaps I don't know how to place cues. But it stung, as it is very difficult for me to open myself up to people in person or on the phone (as opposed to how I run off at the keyboard).
Mali just woke up. So much for my break. More later, maybe.
TweetDecision: Made. Mostly.
This morning Seymour and I toured Big Noggin, the local GATE 3 - 8 grade holding pen.
They have a compacted and enriched curriculum; have active social and emotional safety nets for their students; are very much into teaching critical thinking, organizational, and study skills; and have no problem with Iz's being younger than the standard age for her grade, especially since she's been "tracking" since 1st grade. They even have precedent for kids such as her.
Only negatives are that they can't provide official support for Spanish at her level, and that they do not offer languages beyond Spanish. But I am no longer worried about that. Her teacher says Iz can always go study abroad for a year, and a parent who's been through our situation says that we can just get her a tutor with some other friends once every week or two.
So, if she gets in, I do think that's where she'll go. It seems like The School Built for Iz.
TweetMali Is Not Leelo, NO
Mali says "no," with force and a big scowl. She will thwack you for additional emphasis if you've really pissed her off (for instance, if you have denied her a piece of food that she needs to help fill up her hollow leg).
Also she says "All done," when finished with a book, and will drop it neatly into my back pack if it's nearby.
She waves. She takes bites. She fits blocks into the correct shape sorter slots. I've written about all of this before but it is still shocking as my benchmark is Leelo (I don't really remember what Iz did, as Leelo's babyhood erased hers from my mind).
The other day at the Cafe, Mauna came over, plopped a bunch of Mongo Lego blocks in front of Mali, and told our baby that it was damn time she started playing with them. Mali responded by picking them up, looking them over for a moment, and then fitting them together perfectly. I don't think Leelo knows how to do that, still.
I looked over this morning to see her scribbling on the kids' MagmaDoodle. Who taught her to do that? Certainly not me. I think this is what babies normally do when they pass the 12 month mark. They do things.
She is incredibly observant but also methodical and inquisitive. Give her a whiffle (sp?) ball and a crayon and she will spend fifteen minutes seeing how far she can poke the crayon into each and every hole.
She is a rock and roll baby still, dancing for many songs but especially that Alphabet one.
Now I just want to wean her and get her to stay seated in shopping carts and high chairs. And get her to nap during the day and play quietly by herself when I need to work. But that would be icing on the sweetest and most wonderful baby ever to grace our path.
She is funny looking, though. Especially with her wispy, filmy cloud of curls.
TweetIz Kicks Ass
Iz, usually an apathetic sister to Leelo, kicked some ass for him all over the park yesterday.
Two shitty little boys (ages 4 - 5) wanted to play cars on the low wall that Leelo was happily walking back and forth on. So the boys yelled at Leelo to go away.
Iz came stomping over despite the balancing difficulties presented by her birthday Hee1ies, and tore them both a new one:
"HE IS MY BROTHER AND HE IS AUTISTIC AND HE DOES NOT UNDERSTAND WHAT YOU ARE SAYING TO HIM AND YOU CAN NOT TALK THAT WAY TO HIM BECAUSE HE IS MY BROTHER!!!!!"
The stinky little boys mostly gaped at her. Leelo remained oblivious, and even followed them around for the rest of his time at the park, ignoring their attempts to exclude him (which, from what I can tell, were rooted solely in the fact that he wasn't their friend, and not because of his odd behavior).
But still, Go Iz! So glad to have you on Leelo's team.
Perhaps turning seven as she did yesterday flipped the compassion switch we've heard so much about.
TweetMy Insanity Level Has Returned to Normal
Oh thank heavens. All the birthdays and holidays are over. Now I only need to work on:
- Hiring another therapist for Leelo
- Setting up Leelo's IEP (Paperwork)
- Visiting local kindergartens to evaluate them for Leelo
- Getting all the paperwork together for Leelo's psychopharmacology consult
- Getting all the paperwork (a shitload), testing, and touring done for Big Noggin, for Iz
- Managing the architectural process for our rebuild
- Sneakily still looking at houses
...and five hundred thousand details that are nowhere near as interesting. But those are the big ones.
Iz's party went well, I think. As usual it would not have been possible had 1) Babysitter A not been present the entire time, supervising Leelo's 3.5 hour bouncy house session and 2) My friends not played pass-the-Mali-potato for the party's duration. Thank you folks!
As I may have mentioned, it was a spy party. I decided to let the kids rely on their brains, a few sheets of xeroxed paper, and fellow partygoers--instead of a musician or magician--for entertainment. Since they're now all 5 to 9 and clever, it worked splendidly. Here is how the party went:
2:00 Arrive and bounce in the bouncy house
3:00 Get called in for pizza, sit in living room eating pizza and spilling soda on the carpet while I tell them the rules:
- Who wants to help find Iz's stolen birthday cake?
- Some of the adults in this room have printed clues in their pockets. The other adults do not have a clue (Bwa ha ha!).
- The adults who do have clues will not tell you that they have them. They will lie. But if you're a good spy and know how to tell if someone's lying, then you'll know they really do have a clue. Here's how to tell:
- Liars won't look you in the eye.
- Liars fidget with their hands, especially on their faces.
- Liars talk really fast to get the lie over with quickly.
- Liars are overly friendly or have fake laughs, because they want you to like them and believe them.
- When you have your clue, you'll need to come over here to the spy center and decode it, using this code key posted on the wall (same code as was used for Iz's advent box search). If you can't read, team up with someone who can or have an adult help you.
- Once you've decoded the clue, you'll have a riddle that will tell you where the cake is.
Eggs come from a chickenMost of the kids said "the store" or "a bakery." Heh! Most of them eventually went and looked in the oven. And shrieked!
You came from a mom
Where do you think
a cake comes from?
4:00 Pinata! FYI, those number ones suck balls. Too light and fragile and crappily made.
4:30 Cake and Singing Happy Birthday
5:00 Go home everyone!
Iz quotes from lately that make me laugh:
"But where does the universe end?"
"It's not unlike..."
...well, there were so many other children about."
Aiiie, I just realized that I've 30 little books to put together tomorrow morning amidst standard party prep insanity. Anyone want to be gallant, and come get cozy with a saddle stapler, say around 10:00?
The spy books are both too complicated and too simple. But they are written, and the master is printed. Done.
Seymour's parents are making a truly sincere effort to be helpful and understanding. It is especially touching watching Seymour's dad insist on cuddling, talking, and interacting with Leelo even when our boy is being a noncompliant pain. What awesome fucking grandparents.
TweetIz Got Her Crown Braid
Yay Iz! Have to have evidence in case they go awry before tomorrow. Which is the day of her birthday party. Which we've had no proper time to prepare for. I want to make spy handbooks, but may just have to settle for maps. Sigh.
Meanwhile Seymour's folks are here all day, to help make birthday cakes. But that means someone is with them, and someone else has to watch all three kids--especially since Leelo's on a serious warpath. And I still don't feel recovered.
But still optimistic! No matter what we will have a bouncer and lots of good cheese.
TweetAnd Even More Melodrama! With a Leelo Update Folded In!
As I was finishing that last post (near midnight), Mali woke up wailing for her Mommy-pacifier. Seymour came to bed, too, and after Mali finally sacked back out her parents had a good long, fruitful conversation about the state of things in our life. It lasted until 1:30 in the morning, and I at least felt refreshed afterwards.
We talked a lot about Leelo, as he's been having a rough time of it lately. He does every January, really, because he's just spent over two months in the holiday/travel/birthday wringer, and that's stressful for our guy. He's been hitting and kicking a lot lately, too--mostly Seymour and sometimes me (e.g., bedtime tonight featured two straight hours of Seymour and I taking shifts getting pummeled), but also occasionally his classmates and last night Merlin. It's getting more intense, too, which makes us both really worried. This is the kind of shit that would get him bounced from school and that would exceed the skills of even Sandalia the wonder baby sitter, meaning Seymour's and my one brief weekly respite from our life is in jeopardy.
I spoke with Supervisor M and we suspect he's both seeking reactions and sensations (it makes his hands and arms feel good), and that he resents the fact that he gets shunted onto so many other people while Mali is always with me. So I talked to Babysitter A, she who does the Engaged Play with Leelo four times per week, and we've agreed that she will sometimes take Mali instead so that I can have some dedicated rather than found one-on-one time with my son. In the rare moments when I do get him alone and sit down with him, he pulls me in for big hugs, kisses, and snuggles--but they can turn into a wallop at any time so I have to be wary.
His language is not great and he's constantly stimming, chewing on strings (new stim; elbow grabbing is out) and vocalizing. And the little guy still does not get the concept of "counter"--he calls is "table" or "floor" 90% of the time. Although today when I tried to demonstrate three concepts he was having trouble with to Supervisor M, he not only told us that his big sister was Izzy and his little sister Mali when asked to specify his siblings, but nailed "counter" the first time. Little showoff.
We talked about the showstopping thrills of the two nice big BMs he put in the pot for Seymour over the weekend, one after being caught in "stinkbug" position and one--surprisingly--during a routine pit stop. That indicates that things may be settling down for him. He also has had some language progress in the area of pronoun comprehension, using "it" and "it's," as well as "your" correctly most of the time. Many autistic kids have life-long difficulties with pronouns, with applying "you" to others rather than themselves. Contractions can also be difficult.
We also talked about his supplements and diet. Thing is, ever since we went to Phoenix and he went on that brief but apparently steep slide into sugar-land, he's been eating like a horse, and had gotten really chubby again whereas he had just started fitting back into jeans rather than sweats (he is shaped like a fireplug regardless). Two months later he is just starting to slow down and not eat compulsively. Also we are being less yieldy in letting him have only the three or four foods he asks for--we have found out that he will eat an additional three or four foods if he gets hungry enough. (This experiment is carried out only on weekends, so as to not interfere with therapy sessions or school.)
We've modified supplements again. Now his daily doses are:
- Kirkman Kids Multivitamins (instead of their NuThera blend; the new ones are broader spectrum)
- Calcium Powder
- Kirkman Happy Enzymes (not their real name, but they are gluten and casein aides; he was taking their Phenol Assist enzyme complex before, but his diet has become very low in phenols)
- Cod Liver Oil. Mmmmm.
We discussed how much we missed each other and our lives, how the kids have been so hard to put to bed lately, how little time we have for our individual selves and each other and how we'd better work on that as the kids aren't always going to be around (except possibly Leelo). Then we sighed and rolled over.
And then Leelo woke up. His runny nose had given him a bad cough, coupled with a sinus headache, and he could not sleep.
Seymour and I took that one in shifts. The boy stayed up until 5:30 A.M.. Whenever I would get to go back to bed, Mali would wake up and want to nurse and I'd generally be up until my next shift came on.
We got to start the day on 1.5 hours of sleep. As did Leelo.
A good thing about not getting to blog much is that after a day or so goes by, things that seemed critically bloggable don't seem all that important anymore. Everything above and below seemed MAJOR at the time, not so much 24 hours later. But I'll bore you anyhow.
Leelo had a morning home therapy session after his late night party, but I kept him home from his speech therapy sessions so he could rest. He did well in therapy. I used that time to sign Iz up for one of the five thousand tests and scrutinies required for her Big Noggin School application (this one being an IQ test, which just irritates me, the whole thought of reducing a person to a number--FOREVER) and fret over whether that school's workload would grind her mind flat instead of unleashing its potential.
Then I took Leelo to school. Where Teacher P made it clear that I should not ever drop off Leelo unless a therapist is present already (which I have done exactly once, and then only because one of the other parents took responsibility for watching him until the therapist got there), and that yes, Leelo should indeed stay home until another aide is found for him on Wednesdays. I sense she thinks I'm taking advantage of everyone's goodwill, when in fact I rather pointedly try not to do so. But whatever. (See! Next day. I'm no longer freaked.)
Rushed home to meet the architects for a site survey of our home (we're trying to cannibalize part of it for a small guest cottage). They had not great news: the county is saying that we have to widen our entire driveway to 16 feet (it is 9 currently) so emergency vehicles can get up there, even though they come up here all the time with no problem (Iz's febrile seizures are 911-caliber, and I occasionally set the kitchen on fire). I do not see how the widening can possibly be done, as the foot of our driveway is a ramp built from the flat street, connecting to our steep hill. Also they are saying that we can't live in one house while building another on the same lot. And we may need to install our own fire hydrant--there may be fire hydrants within the legal distance to our house but they're not sure and if we want to have them go out and measure that will cost $$. GAAAAH. All this means the price tag and construction times keep inching up and out. I am tempted to contact our real estate agent again.
Picked up Iz from school and asked her teacher to fill out the Big Noggin "teacher observation and rubric," which led to one of the Maestra's typical charming but meandering monologues about what's going on in the classroom and how she's enriching the curriculum (she's introducing Cervantes) and how incredible the kids all are. Eventually she wandered back around to my questions. She had no problem filling out the application so we can cover all our options, but she was equally skeptical about Big Noggin due to its reputation as a homework overprocessing facility.
By late afternoon I was totally zombiriffic and so asked ever-patient Marroqui if she could come clean on Saturday instead. Since we then didn't have to go out for dinner while she cleaned, we invited Merlin and Ep over to eat and had a grand old time. Dinner was cheese, crackers, wine, and a few containers of salads from The Hole. Mali couldn't get enough of the tabouli, and I will state firmly once more that Ramsay Cellars have never let me down. First cabernet s. I've truly enjoyed in years.
Highlight of the day, for me: Singing the call-and-response Lock and Key song with Merlin, Seymour, and Iz (Ep begged off due to self-professed curmudgeonry). You are the lock, and appoint another person to be the key. Every line is sung to the tune of the first line from "...I Think I'll Eat Some Worms." Here's how it works:
You: "I am a gold lock"
Victim: "I am a gold key"
You: "I am a brass lock"
Victim: "I am a brass key"
You: "I am a stone lock"
Victim: "I am a stone key"
You: "I am a mon lock"
Victim: "I am a monkey...wait!" (Everyone busts up)
It's lame in type but much fun in person! The first three locks are the material of your choice, then the last one is the barb (variations: tur lock, cook lock, don lock, etc.). We all had fun springing our traps on each other, with Seymour coming up with the malar lock and the anar lock, and Iz inverting it to come up with the war key (and then the spoo lock, etc.)
Alas, it is 1 A.M. now and I've still not done a fucking thing for Iz's party. Sigh. I'm sure it'll turn out somehow but don't expect much, folks. Especially since Seymour's folks are coming into town tomorrow night. I will most likely disappear from this space until Monday. Happy weekend.
By the way, here is a photo of Leelo at 19 months. Did I ever mention how much I enjoy fiction featuring unreliable narrators?
Mali was indeed too sick to go to the city. So I cancelled on my stylist/doula via voicemail a scant few minutes before she called to cancel on me because of a client's emergency c-section.
Friday morning I hauled my and the girls' asses to the local stock broker branch to open up a college account for Mali and deposit Xmas checks for the other kids. They must have boot camp unflappability training for their agents, as first of all Iz forgot her own training regarding querying people about reproduction, and pushed a big page covered with sperm cartoons under said agent's nose, demanding, "I love the Sperm Cycle the best, don't you?" Then Mali, still sick, started squalling and since there is no way I was going to be getting back there within the next year, I hooked her up without a word of apology or the slightest flash of skin showing, and kept on with the transaction--seamlessly.
Afterwards I reminded Iz that she was supposed to state a certain phrase before talking to people about reproduction, and she said, "It's more of a sentence, Mommy." Little smartass.
Friday afternoon I finally did what Supervisor M firmly suggested I do months ago, and let one of Leelo's therapists go. That suuuuuucked. But so did she, though not by her own fault, because she really tried--I am starting to realize that you are either born to do ABA or you are not. Training will only take you so far. She was very sweet and gentle with Leelo, and affectionate. He will miss her, I think.
What this means in the immediate future, though, is that Leelo has no aide for school on Wednesdays until a new aide has hired on (one of his other therapists picked up the other newly open shift). I conferred with Teacher P and we agreed that it's best for Leelo to stay home from school until he has an aide again. Sigh.
The other therapist can't take on the Wednesday shift, so I am placing a Craig1ist ad. In that same email in which the shift was declined, said therapist also wrote that I'd mentioned one of Leo's other therapists moving to Austra1ia and did I have any information about working abroad as that was a lifelong goal? A crash-course in Not Freaking Out Already On-Edge Parents of Autistic Children might be appropriate here. (I wrote back that I'd be happy to volunteer absolutely all the knowledge I possess--in August.) I do remind myself that this therapist is simply incredible with Leelo and that's what really matters.
Anyhow, by Friday night Mali was definitely feeling better. While she was still trailing streamers of green snot, she was also chatting and playing again instead of lying on our shoulders and laps like the ragdoll baby of the day before. I was excited to see her better, also excited that Seymour was going to get to go out that night and see some poetry.
Except that by mid-afternoon I started getting flu symptoms. Chills, headache, malaise. I stayed in bed for almost two days wondering if I had the psychosomatic edition of the flu, as there were no respiratory symptoms. But then my bosoms caught on fire and I eventually realized I had mastitis (confirmed by the first Google hit starting with "If you are a nursing mother and think you have the flu, you probably have mastitis").
Nursing lots and drinking hydrating fluids helped, though I am still weak. And I bow to Seymour, who watched all three children single-handedly for the majority of the weekend.
This morning I felt well enough to take on a Monday (having shaken the previous night's incapacitating chills) and so took Leelo to OT. I capped it off with a trip to the pediatrician for Mali (the office is practically next door to Leelo's OT), to follow up on last week's ick and make sure her lungs and ears were clear. Not so the examination room furniture, though--while I was holding Mali for the doctor to examine, Mr. Leelo--who I really do think is starting to get sick of all the attention his baby sister receives--stuck his hands down his pants and wiped a big smear of the unmentionable all over his chair. I have to say, in my weakened state I funneled all my energy into immobilizing and sanitizing his hand, and so only blinked at him for a facial reaction.
After a good wiping down of all befouled Leelo areas, I returned home, changed his clothes, and Leelo hung out with his morning therapist. Mali cooperated while I fielded calls from dear friends TLF and the local MB! And I finally got most of Iz's birthday invites sent out (though Seymour declared the color version too gory for most and we created an alternate B&W version). Good thing they're afield, as the party's in six days.
Then I dragged my sorry butt off to Iron Gate for my work day. Which was surprisingly mellow, but still depressing as all fuck. Leelo is so very dramatically existing in a universe only tangential to that of his classmates, and as his mother it is painful to observe. And even though I made it to circle time for the first time in ages and was excited to get to hold Leelo in my lap, he was not excited for me to do so. He quickly bucked and yelled and reared back, bashing his skull against my cheekbone and sending my poor bosom into new agonies. His aide immediately took him away for a break, but I lost it and had to run for the bathroom to sob in private.
I was still ground down when I picked up Iz from Jo's, who may have wondered why I was so unfriendly and curt. But I couldn't make eye contact without breaking down anew, which I refused to do in front of Iz. She doesn't need to see that shit. I already see her taking on more than a kid should have to where her brother is concerned and I do NOT think she should have to worry about her mother's emotional state as well.
The only rational thing to do was to pay homage to El Rey de las Hamburguesas via his drive-through altar. On the way there, my mother called to chastise me for not letting her know I was sick (TLF told her; they are homies now as TLF has moved to her 'hood). Which was fine, I think it's sweet that she still worries about me so much. She also said that my dad, in addition to his recurring heart problems and leukemia (seemingly in remission) now has a squamous-and-basal cell cancer patch on his nose, and his moron of a physician had put off surgery for six weeks--and then scheduled the wrong kind of procedure. So now he has to wait an additonal three weeks for the correct procedure. Grrr. Please think good "Cancer kiss my ass" thoughts for him.
My mom also referred to a friend by the blog pseudonym I use. Which made me start, but then think that either 1) Honest mistake, it's his real, though less commonly used name, or 2) She reads this blog. In which case she should comment or let me know so I can ban her IP address! Just kidding, Mom. You should let me know, though.
Rough time getting the kids down tonight (rougher for Seymour; he had Leelo duty and Leelo did not want to go to bed at all). I am so hoping things smooth out soon. I am craving lack-of-drama.
TweetPoor Sick Baby
Mali has been hit with a bad bad cold. We have been up the last two nights with her, mostly because she just can't get comfortable and so wakes up every 20 minutes or so and needs to latch on to her mommy-pacifier again. Or sometimes rearrange herself without unlatching in the first place. To get an idea of how it feels to do this dance with her all night long, have someone grab your nipple hard enough and deep enough so that they won't be able to let go easily, and then have them do the Electric Slide. Do this every half hour.
Truly, though, I am glad that she hasn't let me wean her yet. Otherwise, I don't know how I'd be able to keep her hydrated, since she doesn't want to eat or drink anything else. She has the most horrible cold I've ever seen in a baby without pneumonia or RSV or an ear infection (the doctor checked her out yesterday and pronounced her unlucky but also not in imminent danger of hospitalization, which is my constant fear). She has a deep, hacking cough; is breathing rapidly and with effort (but is only wheezing intermittently); has a marathon-style runny nose (now turning green), red, swollen eyes and face, and an undulating fever. I'm pretty sure her throat is sore, too.
The doctor sent us home with a1buterol for Just In Case, and recommendations for infant decongestant and pain relievers. I find it hard to believe we're supposed to use all three at once, and so have only used the decongestant a couple of times. Even that with trepidation. It seemed to really help, though. That and shower steam treatments.
I also am leery of bombing her with meds because Leelo went through a similar horrible illness at the same age (a GI bug that finally put him in the hospital for rehydration), and we did use the full range of artillery on him. That was around the time he turned from sweet giggly baby to stone-faced baby. So I am paranoid.
Thirteen months is generally not a lucky age for our kids. It is the age when Iz had her first febrile seizure, and landed in the ER with half her body paralyzed (the paralysis only lasted an hour, but you can imagine how long that hour felt).
I am hoping Mali feels better today (shockingly, she is now asleep without being attached to me) as I've my first haircut since March scheduled this afternoon in the city, and my daughters and I are supposed to have dinner with Godfather M at his restaurant afterwards. I am selfishly hoping that I can at least get my mop topped.
Humorous/nasty aside to the sleeplessness of the past two nights: Pat our sole remaining cat keeps bringing ticks into the house. First time in his four years as a free-range cat so it must be a banner tick year. Seymour and I admitted to each other the morning after our first sleepless night that it wasn't just the baby that kept us awake; it was freaking out over every little twinge and itch, figuring that it was a tick. Ewww. Thankfully no human tick attacks yet.
Leelo 13 mos (left) and 15 mos (right):
TweetNot My Narnia
All I can really say besides "Why did they have to mess with the storyline so much; abridging is one thing but any additions or tweaks beyond that are blasphemous" is that 1) Beavers look silly in chain mail, 2) As1an was not big enough and was also just wrong, and 3) It is time to stop casting English child actors based on how pillowy their lips are.
Addition: Once again, Ti1da Swinton KICKS ASS. Never yet has she disappointed; She remains atop the all-time-favorites list. Do yourself a favor and go see Edward II if just for her and not the red hot poker.
Leelo and Iz both get massages and songs before they go to sleep, if Mali is amenable (i.e. not being nursed to sleep at that same time). I didn't do this when they were wee as they were too squirmy, but now they like it and it is particularly calming for Leelo.
As Iz was getting her rubdown last night, she asked me to massage her tummy. I said that usually people don't massage tummies or kidney areas, as they had no skeletal protection.
"What about my chest?" she asked.
"Usually no, that's private. Although I've no idea if real masseuses give men or children chest massages. Not women, though."
"Because of your l0vely lady lumps?"
TweetIt's Not Just the Rain
Although the excessive storming kept us from our Saturday morning cafe routine on New Year's Eve. Which sucked.
Nor is it Sunday morning's lack of child care at church, discovered after Seymour had to stay home during a work fiasco and so I hauled all three children into the sanctuary after having to park a rainy block away--even though there was a free and clear spot in front of the church reserved for handicapped (an issue I think we could probably take advantage of, though I only long to do so during these brief flashes of inconvenience). The kind people who were church Greeters encouraged me to stay; my very favorite fuckwad (the "why don't they just chain them to the ground" parent) chimed in with "Oh, yes, of course you can't stay!" Sage has mentioned that she is more likely clueless than callous, but since when is that an acceptable excuse for making families of special needs kids feel even more excluded?
Nor is it hanging out a dear friend's home later, even though I knew it was and it turned out to be a bad idea. There is no such thing as having a good time in a house that is not ours, not with Leelo along. As much as our friends really did try.
It's none of these, really. More it's the realization that Leelo is now full-blown and obviously different, and people who haven't been conditioned to treat him nicely (as have the sweet lovely Iron Gate classmates at the New Year's Eve party who sought him out and made him say hi to them by name) are uncomfortable around him. Kids his age are old enough to say that they don't want him around, and far from mature enough to communicate that diplomatically. They say so right in front of him, as though he's not there.
Also it's his tailspinning outside of his routine. So we really shouldn't be taking him on trips, and we really shouldn't be taking him to peoples' homes, unless we have calm environments for him to retreat to, and at least 75% coverage of his usual therapy schedule. Which is a coordination nightmare.
He is slipping away. I still don't think he's going to end up like the woman in the Get The Truth Out site (not linked to, though you can Google it if you like; it is a good advocacy site but fucking depressing for parents in my spot). He is still a love, but a remote one, and hard to connect to. The holidays and all the nutiness around them made it hard to focus on him like I should. And it shows. So we're just going to be hanging around here being mellow for now.
Once Iz's birthday party is over, anyhow.
TweetStarting The New Year Out Right. At Least My Feet Are.
My mom is just the best. After years of trying to get me to wear pink cardigans, she's finally started to get me not only things that I'd like, but things that I don't even realize how much I'd like. Witness her Xmas gift to me this year below. I can't even being to capture how tickly these shoes make me feel.
Off to church, followed by a New Year's Lunch at Sewerage. Anyone up for breaking Naan with Leelo?
Hope your day is a wondrous one.