The Internet Is Up Again!
The latest victim of the "I had sex with my partner and then somehow found myself pregnant*" phenomena is Godmother Stacy. Those of you who track such things might recall that she has six-month-old twins. Twins who will be 13 months older than their currently fetal sibling. Eep.
Can't post anything longer; connection might disappear again. Will write, however, that I am typing this on the keyboard of the aforementioned MacBook Pro. And that it has been eight years since I last worked on a Mac and that reentry has been bumpy. "Quirky" would be a generous description of the interface. But PhotoBooth continues to keep small children occupied for hours, so I'll keep on.
*Past victims: JP, me, my OB/GYN.
F***ing internet connection and dying computer. Grrrr. Our CD/DVD burner died just after I downloaded a batch of ambient water/wind/soothing iTunes to burn for earbud-eschewing Leelo, our hard disk is failing, and we only get an internet connection one hour out of every 40 or so. Like now. It's enough to make a girl impulsively buy a MacBook Pro just because her autistic son liked the PhotoBooth app at the Apple store so much. In the mean time, do not rely on email for contacting me.
I can't reveal the latest gestator until Bad Moms' Coffee on Thursday. Sorry! Jo, increasing the intensity of your threats will not get me to 'fess up. I am under verbal contract.
Iz ran into our local state representative, 1Ra Rusk!n, at the Cafe on Saturday and was totally starstruck. She eventually worked up the courage to ask him for his autograph. He says he remembered her from his campaign two years ago! She was absolutely tickled.
Leelo has mostly been great lately, but last night had a manic attack that had him waking up laughing uncontrollably every half hour from 1:30 AM until morning. Of course, Seymour and I had been up talking until 1:00 AM.
Still, our guy has been doing really well at school and in his home program. And with us he's been going on successful two mile hikes. We've also discovered that our entire family of five can fit on our newish see-saw, which Leelo also thinks is fantastic.
Mali got plonked in the church nursery this weekend for the first successful time ever. One of the nursery volunteers was an early childhood education specialist, which was nice for Mali because she got the intense interaction she so infrequently gets at home, poor thirdling. This same ECE person accosted us after services, pronouncing Mali "gifted," and telling us that we needed to research giftedness and that she would be legally entitled to the same custom-tailored services as a child with a learning disability.
Nice to hear; if true it means we will most likely be able to put her on the same Trident Montessori --> Esperanza Spanish Immersion --> Big Noggin track as Iz, without missing Esperanza kindergarten and without fighting for her to be moved up a grade, as she is one week ahead of the age cutoff and therefore will be one of the very youngest kids in her grade anyhow.
Of course as Mali's proud parents we already know that our baby is the cutest and the smartest, just like your baby. When I hold up an item and ask what it is, Mali is likely to answer before her brother--but is that due to neurotypicality or precocity? I do think it's funny that she will identify letter-shaped objects, such as the buckles on her stroller: "F"! She fill-in sings the letters at the end of each Alphabet Song line.
And she is 17 months old today.
I am in a partial panic about the next few days. The Planets of Inconvenience have aligned, compelling all of the people who help out with Leelo as well as our saintly Thursday night babysitters to march out on vacation or to conferences at the same time. From Thursday morning until Tuesday morning, I will lack even a single speck of help with Leelo or any of the kids. My parents are in Portugal, Seymour's parents are in Mexico. Seymour himself will be working extra-long hours to write a critical grant.
Normally all this would make me proactively grumpy, but instead I am feelng strangely and defiantly competent.
This is the latter half of my last! Iron Gate article for the year.
Recently, I was grumping to my ever-patient partner about a friend who has never invited our family over, even though our kids are the same ages, and even though her family visits our home frequently. I couldn’t understand how she could ignore our lopsided relationship. My partner sighed, and said, "She probably doesn’t invite us over because she doesn’t know how to invite Leelo over."
You may laugh when I write that this had never occurred to me, but it is true. And it got me to thinking that perhaps this awkwardness and hesitance is common. So, please, if you would like to socialize with a family that includes a special needs child, simply ask the parent how to go about it. Sometimes families like ours need to make special arrangements such as bringing along a babysitter or aide, and sometimes the thought of bringing our child into an unfamiliar environment is too overwhelming--but more often than not, we’d be delighted.
I am not fishing, by the way. Our social calendar would tire Madonna's nanny. But I will write that one of my happiest memories from this past year was being invited to a friend’s home for the first time, for a New Year’s Eve party--and then having another friend with a special needs child show up, too. We bid goodbye to 2005 just like any other family, and it was lovely.
TweetAfter the IEP
The IEP went well. Incredibly well, though Supervisor M thinks they could have given us more ... p'raps a Pony Party? I jest, but since we had expected to have to go in swinging, I was shocked by the offerings. Here is what they agreed to provide before we even asked:
- Weekly 1:1 OT (1/2 hour, to start this Thursday. To increase as needed)
- Weekly 1:1 speech (to start as soon as they can find another vendor). As Leelo already gets speech 1x weekly with Sage, this fulfils our goal of 2x weekly speech
- Summer school placement in the SDC Behavioral program, with a 1:1 aide. They cannot officially call this class their Autism Program, but that's what it is.
- If they are not able to get the Summer program together (they do not yet have a teacher), then they will pay for ALSO summer school.
- Fall placement in the same SDC/Autism class, again with a 1:1 aide.
- A home behavioral program of up to 15 hours per week. If Supervisor M can get certified as a NPA (Non-Profit Agency) before this time, then we can use the funds to supplement the program we already have.
Another suspicion is that we got so many services because they evaluated Leelo during the worst part of his Winter Crazies. Which mortified me at the time, but now strikes me as a very good thing.
TweetLeelo's Latest Checkup
Silly me, I forgot that Leelo's Kindergarten entry forms included a medical statement that his doctor must fill out.
Off we went to the health center. I stripped Leo to his pullup so his pediatrician could survey the various ailments listed below. This made it really easy to gauge just how terrified he now is of She Who Burns Off Plantar Warts, because he got so hysterical when she entered the room that his entire body turned beet red. He kept muttering, "Back to the car...back to the car...back to the car" for the rest of the appointment--and the rest of the day.
This doesn't bode well for the TB test the school requires. But, still, his doctor was tenacious and so was able to examine him closely enough to determine that he is well and healthy, and to pass judgment on the following items:
1) The rash on his back is either slight eczema or a mild virus. Either way the treatment is to take shorter baths and use lots of lotion afterwards.
2) The bite on his side is healing, but not as quickly as it otherwise would. His doctor suspects folliculitis, which results from too-long baths. Again, shorter baths, plus neo- or polysporin.
3) Treatment on his plantar wart can't progress until we get the pad of dead skin off its top. She suggests cutting it off (yeah right); I think we will try a pumice stone approach. With one of us sitting on him.
4) His more frequent urination is unlikely to be due to a bladder infection. More likely he's becoming more aware of his body, and either likes the sensation or urination or dislikes the sensation of even a partially full bladder.
I think we will be submitting his kindergarten reg forms without the medical form, for now.
Iz is desperate for a pet of her own. The Frantic Fish doesn't count, and neither does Pat the Cat. She wants a critter in her room.
I told her that she needs to demonstrate sufficient responsibility beforehand, as I am certainly not willing to add another item to my caretaking plate. I said that if she could keep a plant alive for a year, she would then qualify for pet ownership.
What kind of plant did she then request? Why, a carnivorous one, of course. We made our way to the wonderful East Bay Nursery in Bezerkely, where the knowledeable and helpful staffers talked her out of a Venus Flytrap (as they are annuals) and into a lovely pitcher plant.
After a nice long stop off at the East Bay Vivarium to look at potential future roommates (Iz: "A crocodile monitor is the biggest lizard in the world! It gets bigger than a komodo dragon! Can I have one? Well, then, can I have an emerald tree monitor? How about a chameleon?" Mali: "Toi-tul! Shhhnake!" Me: "Ooooh, your daddy and I used to have one of those, until we had children."), we then brought the plant home to repot it.
Iz has christened it Smoothie, as that is what it will make out of its bug victims.
TweetSeymour Needs Advice
Did I mention that our internet connection has been spotty and mostly down for almost a week? Hence the flurry of posts--must get them out while I can. And if you're in real-world contact with me, don't rely on email just now.
At any rate, my dear partner and favorite cyclist Seymour recently got harrassed by a bunch of monkey boys in a truck. They drove up right behind him, leaned out of the truck, and hollered. He was so startled that he almost crashed. Then he became so livid that he would have torn their limbs off had they not the benefit of superior horsepower.
Seymour didn't get to accost them, but he did scrutinize their truck intensely, as he'd seen it in the neighborhood. He didn't actively search for it, but he did keep his eyes peeled.
Last week, he found it. He's since driven by several times to ensure that it is the same truck, and that it belongs to the adjacent home. Irony: the truck and all the cars attached to the house are covered with the local Fire Department's stickers.
What would you do? Seymour would like to let it go, but can't. I think he should write an anonymous letter detailing what was done and how dangerous it was, and send it to the house. Others have suggested calling the fire department. I am also a fan of paintballing, but think that--deeply satisfying as it might be--it is the riskiest approach. Opinions?
TweetMali Needs Music
Not my baby Mali. No. My Malian friend--the one who apparently named his baby after me--would like some contemporary music to shore up his aging collection. And no, I don't fucking mean Kenny G.
Send me your (favorite) iMixes and I'll buy them for him. Thanks.
TweetGood Leelo Language
Naturalistic language from Leelo over the weekend:
During Church: "I want to go home, Mommy."
Re-entering church after mid-sermon park excursion: "I want to go to the car, Mommy."
Upon my leaving the house to run errands: "Come back, Mommy!"
All three phrases were new and spontaneous. We may never hear them again, but it was excellent to hear them at all. Perhaps in the future we may even hear spontaneous naturalistic language about things Leelo likes rather than things he dislikes.
The dreaded IEP is Thursday. Eeeeep. We have very good support in the form of Supervisor M (who will attend) and Sage, but I am still nervous. Even though I am the spoiled princess of Autism Parents Land (Leelo will always have support--whether it comes from the school district or his fairy grandparents).
I am starting to fret about our boy's summer school schedule. We'd thought he wouldn't need an aide for school as of the summer but that is looking less likely. His stim/sensory needs are still very intense, and I'm not certain we can address it sufficiently by the end of June. I hope Therapist Y has some time in his schedule.
Finally got around to filling out his district Kindergarten paperwork with the intention of turning it in this afternoon, only to discover a previously unnoticed medical form that must be filled out by his doctor. Who didn't have availability until Wednesday. But hey, maybe we can freeze of more of that huge tenacious plantar wart, and get his urine checked to see if a bladder infection could explain why he's not able to hold his pee for even an hour when he's been doing 90+ minute intervals for weeks.
TweetMali Riding a Rocket
Someone punched the button that transformed Mali into a real little person over the past week. This is oh-so-reassuring. I clearly remember Iz rounding this corner; it was a particularly joy-filled phase of parenting. Leelo approached the corner but then turned and ran in the other direction.
Mali's biggest changes are in the way she combines verbal and body language to communicate--she's simply not baby-like any longer, especially her facial expressions. Though I can't see the body language in the middle of the night when she murmurs, "Mama...? Nurse? Nurse?"
Yesterday she clicked onto the fact that "M-A-L-I spells...?" should be followed by shouting, "Ma-ee!" and pointing to her chest. When she sees her name, she says it. When she sees other words, she names letters. Conditioning rather than anything else, most likely.
She knows how to knock on doors. Not just slapping the door with an open hand, but rather rapping with her knuckles. I have no idea how she figured this out; I am guessing from observation.
She adores her friends, especially Merlin, whom she chases around while squeaking, "Hi Muryin! Hi Muryin! Hi Muryin!"
She likes to find writing implements and draw on walls. She also automatically places any stray socks in the cat's water bowl.
I am not pleased that she is still nursing two-three times a day, and insulted that she will sometimes ask for water afterwards. I am downright pissed that she won't fall asleep unless I'm in the bed nursing her, most nights.
She has one hell of a temper. Oh my. But she is the most fun baby to goof around with, ever, when she's chipper--which is most of the time.
Her standout characteristic, to me, is that she is proactive rather than reactive like her siblings. She makes her own fun, and figures things out on her own. I had heard that children were capable of independent thought and play but have never before witnessed the phenomena.
Summarized: Mali is an ideal third baby. I feel very blessed. We didn't know we were entering the cakewalk, but as of now we're licking icing off of our fingers.
TweetSad About Leelo, Sometimes
Leelo has more energy than five typical kids put together, but he also has absolutely no idea what to do with himself when not being directed. So he paces and gets himself a a strip of paper or a twig to fiddle with as he walks in circles and hums to himself. I do not believe that this is what he prefers to do, but rather that is is a coping method.
I cannot spend all his non-aided time directing him. I wish I could; it hurts my heart to see him buzzing around with his head down, trying to keep himself busy because his brain won't let itself focus long enough to remember all the things he likes and knows how to do. I can't even do the parallel work/play that typical kids will settle for, with me participating verbally in the hijinks as my hands and eyes hack away at neverending housework.
He wants to be with us, and craves our attention, so badly. Every time an aide arrives, Leelo runs at us and grabs our hands, saying, "Want to go see Mommy? Want to go see Daddy?" When Seymour came home from work today and gave Leelo undivided seesaw time, Leelo was so giddy that his grin almost split his head in two.
When Seymour and I left for our first date night in two months, Leelo protested and tried to get in the car with us. He allowed himself to be led back to the house, but then when bed time came around he burst into tears and sobbed for us. I would have come back home, had I known.
This morning at coffee part of the conversation flow touched on parenting only children. I sometimes wonder how much fairer Leelo's unfair life would have been had he been an only child. But I also think that his sisters will better learn how to draw him out as they get older, and that once Mali is less dependent then Leelo will have a crack in-home support quartet to help keep him busy, all the time.
Trapped in an Ouroboros
After two more rounds and--I shit you not--10 more phone calls, I think I finally figured out the deal about getting Leelo a meds consult at the MYND Institute.
We can't have one. The MYND will only accept a referral from Leelo's pediatrician with her medical group's support. Her medical group won't support it because they consider it to be a mental health issue, and want us to take it up with our insurance. Our insurance says we can go see anyone we want at the MYND as they're all part of our HMO, but that the insurance co can't themselves authorize that referral--it has to come from our doctor. Who's got a hole in her fucking bucket, dear Liza.
Once I'd finally sussed all this out and called the MYND to ask about self-pay (we have a flex-spending account so we'd get the money back), they told me that really, I shouldn't bother anyhow as they're so slammed for availability that they aren't accepting new patients.
THANK YOU, FUCKERS, MAYBE YOU COULD HAVE TOLD ME THAT LAST MONTH.
Back to the list of local referrals for Autism meds specialists. Which I should have been pursuing in tandem, anyhow. Lesson learned.
TweetThings I Would Have Posted Earlier
Except our DSL had been near-comatose, Mali hadn't let me out of her clutches during waking hours (i.e., between 8 AM and midnight) for well over a week, and Seymour had to go to a librarians' conference two beats after I returned from points north. That was not a complaint list but rather a explanation of lack-of-time. (I've pretty much had it with my own whining.)
Sebastopol continues to be my favorite destination. Something surprising and lovely happens every time I go. Yesterday the minor miracle was the goofy slacker-looking dad at the playground who suddenly busted out the throat singing.
OMFG that Super Playground--fully entertaining for five kids between 1 and 9, adjacent to a duckpond that Leelo can look at and from which the ducks can exit for begging bread crumbs, but which is fenced so that Leelo cannot bring his desired bellyflop to fruition (Babysitter A kindly came along, so our guy was doubly though cheerfully thwarted). We had to drag all the kids away.
Leelo is in a weird space. He peed on my feet twice yesterday, both times while I was prompting him to sit on the toilet. His hyperactivity and verbal stimming are constant; any chance of having him pass under the public's radar is now officially jettisoned (and the public will just have to deal with that because we will never allow Leelo to become Boo Radley). He now thinks trips to the grocery store are fun, because he likes to see how many things he can knock off the shelves. Putting him in the grocery cart seat merely adds to his challenge.
But he has been going to bed without protest and on time. He is so sweet and chatty, in his own way, about how much he loves his parents and how much he wants to spend time with us. I suspect that a few weeks without one parent or the other traveling might be what he and our whole family needs.
Today, two hours before we left to pick up Seymour from the airport and just as I was about to lose my head over the impossible task of keeping all three kids occupied at once (it is spring break), I realized that I could no longer hear the typical crashing sounds that Leelo makes when he goes downstairs and starts tearing apart his room because he cannot figure out what else to do with himself when undirected. I was worried that the quiet meant he had injured himself, but, lo--he was sitting on the floor quietly paging through a favorite book.
Later on while we were all eating dinner (almond butter/rice bread toast sandwich for Leelo and leftover pizza for everyone else) Leelo--who never ever ever EVER tries any new foods--decided for some reason that the dried chili flakes accompanying the pizza looked tasty. That was a shock. He didn't freak, but he did get big-eyed and expressed dismay both vocally and by trying to chew on anything within reach in order to stop his mouth from burning. Poor guy. We have no idea what he thought the chili flakes were...possibly dried raspberries, as he eats those occasionally.
Finally: thanks to Badger for pointing me towards Angry Black Bitch's post about living with an autistic brother. I'm going to keep that one on hand for Iz and Mali.
TweetOver and Out
It has taken me a couple of days to recuperate from what was to be a frothy little lark of a trip to Vancouver and Seattle. Except that I'm far from recuperated and now Seymour is flying off to present at yet another conference. And Mali has one of those Cascades of Mucus colds. Thankfully Ep has graciously taken Iz for a sleepover with Merlin.
(Two days later as Mali started screaming for boob after that first paragraph.)
The trip was boffo in that I got to hang out with thirty or so ladies from my extended family, got to hang out with my favorite auntie and cousins, got to hang out with my mother-in-law without 10 other people in the house, and got to get tipsy atop Seattle's Space Needle.
I also had the pleasure of meeting SJ from I, Assh0le and her sidekick Strudel. SJ brought along buckets of wit, charm, and extreme politeness--she could take tea with The Queen. I, of course, reverted to my usual first meetups mode, which Badger describes as "overeager puppy" but which I suspect is more like irritating puppy who doesn't understand No and won't stop licking your face and then piddles in your lap. I will learn to listen, someday. Our girls got on great.
Oh, and you fuckers at The Naam in Vancouver? FUCK YOU for not letting a lady with a screaming baby order take out instead of waiting for a table, and extra shame on you for greeting my, "But I've been trying to get here for five years" comment with a flat apathetic lizard stare and a dismissive "Uh-huh." Once I get more than five minutes to myself, my mission will become the reverse engineering of the Naam burger, and then I'll never again need to even think of your sorry soy-and-sprout covered asses.
Iz got in to Big Noggin. (!)
The acceptance letter was accompanied by Iz's scores, which themselves were listed along with the baselines for Big Noggin acceptance. She would have gotten in handily even if she had been applying for seventh grade. So, phew.