Too Grumpy

Too Grumpy

I do not like having a husband who has to work until 10 PM every night and then take the CalTrain home after that via his bike because his car broke down in an "and then parts started dropping out of the bottom" way last Thursday. I do not like that he has also been gone for the past two weekends. Even if his project is totally amazing. Long-term solo parenting makes me grumpier than fuck, and too sleepy to stay awake even during my ten minute morning bathtime reading quickie. I do not like that Leelo has been waking up at 5 AM most mornings. I do not like being fried when I am spending so much time alone with my kids. I do not like that my house is a shittier shitheap than usual. I do not like that I yelled at everyone this morning, and slammed the bathroom door in Seymour's face when he questioned my doing so.

I do like the idea of the sidecar that I will be rewarding myself with, once the kids are all in bed.

Technorati Tags: parenting, parenting burn out

Shake That Healthy Butt

Shake That Healthy Butt

So, I had Iz watch Baby Got Back. The salaciousness went right over her head; the healthy talented women who could dance like hell and were proud of their bodies (bodies very much like what she's going to end up with) seemed to make a big impression.



I think one viewing is probably enough, though--I don't want her to scrutinize it because I'm too tired to field queries such as, "What does 'Me so horny' mean?"

Now she wants to listen to more rap and hip hop. Any suggestions? I'm good up to about... 1994. Then I started working and breeding and fell off the face of the contemporary music world.

Technorati Tags: Iz, raising girls, role models

Worried About Iz

Worried About Iz

Two things today:

She didn't want to put a jacket on top of her sweater because it made her look "fat." Calm discussion about different body types ensued, about how she is a healthy girl and only a doctor can tell you if you're overweight but, FUCK. I asked her if she has a reflexive negative reaction to overweight people, and she said, "Yes, but I know it's wrong."

She joined another child in unkindly chanting "Leelo go away! Leelo go away!" When his only crime was sitting in the wrong car seat. Not as calm discussion of family loyalty and the need to be her brother's champion even when it's hard ensued. She sobbed that, basically, she couldn't overcome the peer pressure.

I already wrote to the local snk parenting board, asking after therapists with experience counseling autism siblings, and came up with zilch. I am really starting to fret about my girl. She is at a watershed point in her emotional development, and needs some impartial support.

Technorati Tags: Iz, parenting, parenting burn out, autism siblings, raising girls, special needs siblings

Drugging Your Child Is Really Expensive

Drugging Your Child Is Really Expensive

Turns out the bridge insurance folks are not entirely tight-assed cheapskate bastards, after all. I picked up Leelo's Fukalin prescription today; without an insurance buffer that sweet little cocktail of focus and aggression cost more than four dollars per pill. Ouch.

Technorati Tags: adhd, autism, medication

I Have Girls, Too!

I Have Girls, Too!



Dude, Iz got to touch a coelacanth during today's behind-the-scenes tour at the Steinhart Aquarium/Cal Academy of Sciences (Seymour arranged it, and we played hooky with her teachers' full blessings). The tours are something new they're trying out for their 2008 re-opening in Golden Gate Park, and ours totally kicked ass. It was as close to geek heaven as this fish nerd is likely to get. Someone even asked me if I was a fisheries biologist, so enthusiastic was I. Oh, and Iz had a good time, too--she totally held her own even though she was the only kid on the tour, and even knew things that the docent didn't (kind of like when we went to Año Nuevo to see the elephant seals and she schooled the guide on the Ohlone chert/obsidian trading system).



This is Iz during her typically freeform and chaotic birthday 8th birthday party. Jenijen and her partner Corbie gave Iz a snake and critter show for her birthday, and it ruled. If you live in the Bay Area, you simply must hire Corbie for your kid's next party. He does Mad Science parties, too, and his dry ice in a bucket of water demonstration may have been the party's highlight.



Iz, ever on the invention warpath, has invented the Flossomatic for people like her who dislike cleaning between their teeth.



We have demanded that Iz start picking out her own outfits now that she's eight. I don't get why she hasn't shown more interest; many of her friends have been doing so since before they could talk. Anyhow, whoops. Maybe not such a good idea.



Mali the fashion plate. With her hair contained. She is two with a vengeance, has a bucket of "no" in each hand, and might get dropped of on the doorstep of the next person who tells me how cute she is.



With her hair not contained. Poor baby.

Technorati Tags: ichthyology, Iz, Mali, Ohlone, raising girls

Kicking Special Ed Ass, Deadwood Style

Kicking Special Ed Ass, Deadwood Style

And I know some of the people they interviewed, too! Wish us luck tonight as we try to make a difference for the Special Ed families, students, and staff here in Deadwood.

Technorati Tags: Special Ed PTA, special education, special needs kids, special needs parenting

Donating Blood

Donating Blood

My thanks to everyone who asked about donating blood for my dad. He is in the Keyser Permanent network, so anyone who lives near a Keyser blood donation center can go there (you don't have to be a member), donate blood, and give them my dad's name. If you are interested please write me at aba_help AT yahoo.com. Thanks again.

Technorati Tags: blood donation, donating blood

Letter to Supervisor M

Letter to Supervisor M

Hi M,

Wanted to let you know that I spoke with both Ulla (Alyx's mom) and Therapist L, and that they are both in favor of continuing the Wednesday faciliated playgroups. Ulla says that Alyx has no problem letting her know when she is either uncomfortable or doesn't want to do something. So that is reassuring.

Also, I am as you might suspect fairly upset about the way Leelo's incident at school was handled, especially as Seymour and I were never included in any of the school's discussions or decisions, merely informed. Though I am very grateful to you for being so proactive with regards to B.I. and the behavioral plan.

Even though my instinct is to throttle everyone involved in the incident and aftermath, I suspect that approach won't exactly help our position. Instead I would like to talk to the principal and the K teachers about what my friend Dee suggested, about making this "a teachable moment about giving someone the benefit of the doubt, even if he pushes you..." Also I can volunteer to go into the classes to read the kids books like Ian's Walk and Andy and His Yellow Frisbee, and donate copies to the classes. What do you think?

Finally, Seymour and I were already wondering what the hell Leelo is doing in that class. (I know this has been your take for some time.) Not necessarily because of the instruction or supervision, but because Leelo isn't really like the other kids in his class. They are all either conversationally verbal, have conversational receptive language, are potty trained, or all three. I don't see how the staff could address Leelo's needs with respect to the majority's needs. And I am sick of seeing worksheets coming home that were obviously done for him.

My friends have suggested we look into the county classes. Seymour and I are wondering about private schools. Jersergirl suggested that I contact Supervisor Andil to ask about private schools on the peninsula, but I wanted to first ask you if you'd already done that before we looked at schools last yet. ALSO is not an option because they don't take kids at the K+ level who aren't somewhat conversationally verbal.

Thanks,

Squid

This Is Getting Comical

This Is Getting Comical

Mali didn't really sleep until 3:30 AM! Weird fever, whimpery pseudo-sleep, then what I guess must have been a night terrors attack.

Leelo woke up at 4:00 AM again! Didn't go back to sleep!

On the way out the door to school, Leelo discovered that the cat had barfed, and proceeded to trample through it, necessitating an outfit change when we were already late for our meeting with Teacher S!

Teacher S informed me that the parents of the girl Leelo pushed had talked to the principal and were very upset and that the compromise they had all agreed on without even calling me was to ban Leelo from the playground during General Ed!

(This is so not fucking happening long-term, not without a very polite but firm confrontation.)

Took Mali to my work day at Iron Gate. Teacher L informed me that they rock-salt laden play doh I'd made was not usable for two-year-olds because they will eat the playdoh and rock salt is poisonous!

I have actually been in a fairly good mood all day, because, really, this is all getting a bit silly. But I really do appreciate all the kind words and helpful suggestions, thank you.

How Do You Solve a Problem Like Our Leelo?

How Do You Solve a Problem Like Our Leelo?

Leelo went back on Fukalin XR 5 mg this morning.

He vocalized and stimmed and had ansty-pants to an almost unmanageable extent all the way to and into school. The other kids were looking at him like he was an alien--thought it was kind of cool to see that sort of focus in an autism classroom.

I asked his aide Rosie to call me if he got really out of control. And then I walked the long way out of the school so I wouldn't run into any parents I know because I didn't want them to notice that I was crying behind my sunglasses. Yay sunglasses!

On the drive home I wondered whether Leelo really does belong in his class. It seems to me that all the other kids have at least one strength, be it academic or verbal or physical or receptive, whereas Leelo doesn't really have any of that plus he is a big behavioral challenge. The rest of the kids seem fairly docile. I don't know where else he would go, though.

I also wondered if we should put his playgroups with Alyx on hiatus. His unpredictable behavior has her starting to look at him skeptically. I don't want her to come to playgroup if she doesn't want to come, and more importantly I'm worried that Leelo might push her. Supervisor M advised me to ask both Alyx and her mom about it.

It also occurred to me that really intense depression feels sort of like being drunk. And it's free! Guess I'll put off buying that bottle of Cointreau for another week.

When I picked Leelo up, Rosie mentioned that he had eventually calmed down, though he had had a toileting accident (#1, thankfully--so far he doesn't do #2 at school). I thanked her and took Leelo off to his first OT session in six weeks, which made him very very happy.

I returned home to a voice mail from his Teacher S, letting me know that Leelo had had an "incident" at school with a general ed kid, and that I needed to come in early tomorrow to talk to her about it. No details. FUCK.

Thankfully Teacher S had reaached Supervisor M, who filled me in. Apparently the general ed kids came onto the playground when Leelo's class was there, something they do not normally do. Rosie and Leelo were sitting on a bench, and Rosie asked Leelo if he wanted to go play on the playground. He responded, as he frequently does to a request he doesn't like, by pushing the nearest person. Unfortunately in this case it was a little girl who was sitting next to her teacher--and they both fell off the bench and were both pissed and they had to tell the principal and apparently Leelo will most likely be banned from the playground when NT kids are there if not totally. Which would suck because exercise is one of the only things that calms him down. And now we have to come up with a "behavioral plan" addendum to Leelo's IEP.

Apparently the two people he pushed are both fine, but shaken, which is understandable. I will apologize to whomever I need to, and profusely, but I am worried about the unofficial aftermath, about unfriendly parents and about Leelo being stigmatized (not that he would notice). People are generally not kind or understanding in these scenarios, especially those who view the Special Ed world as one that intersects with theirs only by a special dispensation on which they were not consulted.

I spent a lot of the rest of the day wondering what families like ours are supposed to do. More help? I am tired of having people in my home so much of the time, much as I love the wonderful members of Leelo's team.

Leelo spent much of the afternoon terrorizing his two sisters, despite my best efforts. I really do try, but there are three of them and one of me, and I need both Mali and Leelo within my line of vision at all times. It is just not right that Iz and Mali have to be constantly on guard and scared in their own house. Especially Mali--she just fucking turned two. She is starting to cry any time Leelo comes anywhere near her. I spent a lot of the evening holding her, which then meant I couldn't really interact with Leelo--Mali's crying, at close range, makes him cry.

But he pulled through the crying. And he did come up with enough episodes of interaction and good eye contact and good listening to keep me optimistic. He verbally refused to put on his pajamas. I ran out of the room for moment to tend to Mali, and when I returned he had taken a pair of pants out of his drawer and put them on. For him, that is awesome. He had really great listening, in terms of following all sorts of purely verbal instructions regarding going over to places and turning off lights, etc., and more subtle directions such as a suggestion that the item he was looking for might be under his stool. That head of his, we're going to find a way in one of these days.

Technorati Tags: autism, autistic, special needs parenting

Leelo vs. Winter

Leelo vs. Winter

Leelo is in such an odd space right now. He always has a shitty winter.

Right now he is on a meds holiday. Fukalin was fabulous at first, but after a few weeks the attention and language benefits waned and we got a whole lot of aggression instead. You can't imagine how much fun it is to hang out with a kid who may deck you, or anyone nearby, at any moment. If this keeps up we are going to have to go into seclusion. Or do something.

Leelo spent much of the holiday break pushing anyone who came within five feet of him: My dad (who because of his various heart/blood conditions ended up with huge bleeding gouges down his cheek), kids at the trampoline arena, Seymour's mom who was already afraid of him and despite our best efforts, Hayley and basically anyone who would come over, kids in the jumpy house at Sage's house even though jumpies are usually a source of pure enjoyment no matter how crowded--and the crowner of pushing a little kid off of playstructure at the park. The meds holiday started that next day, Jan. 16th.

There were some obvious differences in his non-Fukalined behavior. He was distractable and disorganized for academics and interactions, but was giving me hugs, was much calmer for me unless provoked by overstimulating environments, and was much calmer for Babysitter A (especially during Iz's traditional birthday sushi dinner). He has also been keeping his shoes on more, and we're seeing more of the sweet Leelo we love.

Supervisor M said that during his Jan. 17th home session Leelo was able to work longer without rewards.

He has been asking for us more lately, and has been noticing our facial expressions more. If we're making particularly grumpy faces he will use his hands to mold our mouths into smiles.

His aggression is not totally gone, but it is mostly turned inward and is frustration-based. I appreciate the longer ramp-up to self-injury, and to attacking his sisters. I do not appreciate that he has started waking up at 4:00 AM, or that he is literally climbing the walls all day long (I woke up this morning to the sound of glass smashing all over the kitchen from Leelo climbing on top of the fridge to get at what I thought was a secret madeleine stash, and his then dislodging a empty Strauss milk bottle onto the stone countertop. I am still finding bits of glass everywhere in the kitchen).

Dr. Sheyenne has suggested that we return Leelo to the Land of Fukalin after a week off to see if the meds vacation will "reset" his Fukalin tolerance. As mentioned, he had a wonderful initial three-four weeks on Fukalin, but then--according to Dr. Sheyenne--started metabolizing it too quickly. Then we had less organization and focus and that unnerving aggression.

If the Fukalin reboot doesn't work well then we'll see if alternating Adderupp and Fukalin months can keep him in a good place. If that's a wash then we'll try Stratifera, which is supposed to have less of the stimulant-based aggression side effects. Bummer is that it takes five weeks to kick in.

Funny side note about Fukalin: we have bridge health insurance for January as Seymour's new benefits don't fully embrace us until Feb. 1. Guess who the bridge folks wouldn't insure? Was it the two-year-old who keeps getting sent to the ER and who has been hospitalized twice for respiratory infections? Is it the older girl who has had three costly and lengthy ER visits due to febrile seizures? Nope. It is the kid with the $50/month Fukalin prescription. Apparently that is a pre-existing condition. Bastards. Leelo, do not get sick or injured for nine more days!

Here are some other crappy Leeloisms of late. Meds? Winter? Wish I knew.

We tried him on 2 mg of melatonin as a sleep aid, for about a week. No noticeable effect.

His spontaneous speech is really minimal and also mushy. He's also back to refusing to state colors. He doesn't want to put in the effort to look at objects in question and so will tell you that they're all blue. These kinds of regressions are painful because it not only takes such effort to help Leelo acquire skills, but then he can lose them so quickly.

So I am trying to focus on positive things like singing Shake Your Sillies Out with Mali, which Leelo loves and which they will actually sing together; counting goldfish crackers up to 10 (more reciting than counting, but hey); and the fact that, for now, when he wakes up at 4:00 in the morning he will often let us bring him in bed with us to snuggle and then will go back to sleep. I haven't gotten to really snuggle with him in a long, long time.

Also we are in the middle of transitioning Leelo's space in our house. Right now his therapy is taking place in the office; soon we will get all the rest of the office equipment out of there an up in our living room, and Leelo will have his very own for real space just for him. Should help. I am hoping it helps.

Technorati Tags: autism, autistic, aggression