Raw Autism Trench Blogging

Raw Autism Trench Blogging

It is very hard to muster up the energy to clean one's trashed house when one has spent the entire morning having one's autistic child punch, slap, and pinch one's face, arms, chest, and neck. And who then thinks it's funny when one starts crying. And who hits himself even harder than he hits anyone else. Thankfully he's not yet strong enough to leave bruises from his punches, though my face, arms, and chest are all bright red.

I am so worried about Leelo. Not because I think he'll never be able to leave home, but because he might not be able to stay. I am going to have to talk with Supervisor M about what we can do to manage his violence and aggression -- at this point I don't care if he never becomes potty trained (not that I'm suspending or scaling back those efforts). I am only grateful that he remains very sweet and gentle with Mali -- last night he used great language when she tried riding him in the bath, saying "Get off me, Mali, and tapped her shoulder gently (as Supervisor M and Therapist L have worked so hard to get him to do) and said "My turn, Mali" when she kept stealing his favorite straw even after I asked her not to. But he does hit anyone one else, unpredictably. This means I am worried about taking him anywhere and having anyone over.

I am also not discounting how difficult it is for him to adjust to summer school ending, his therapist being sick on the first weekday afterwards, having to take his baby sister to her first very noisy and crowded day of school, and his dad and big sister being gone for a week.

Anyhow. He just did a great potty session and I promised him french fries. All hail drive-through cuisine.

Technorati Tags: autism, autism blog, autistic

Grabbity Grab Grab Bag

Grabbity Grab Grab Bag

Today is our twelfth wedding anniversary. Yay us! Of course, Seymour is up on a boat near Port Hardy with his parents and Iz. But still, a cool dozen. We did the schmancy dinner at Bella Vista in nearby King's Mountain. It was quite the classic French cuisine throwback treat. And the souffles were from heaven above -- not in the least bit eggy, as Seymour remarked.

Mali is as always cute beyond measure or the camera's abilities. And she starts for-real drop-kick preschool tomorrow. Thankfully the school's toileting policy has been revised since Iz's day, when "go in panties or go home" was the rule. Now they just charge extra money for the kids in pullups.

Holy Shit on a Shingle

Holy Shit on a Shingle

Potty training is ongoing. I don't ever remember feeling this continuously stressed, but suspect this is because both my long- and my short-term memory have been obliterated. Certainly not getting a damn other thing done. And I think it's stressing Leelo out, too, and making him withhold -- in the last two days his entire output has been a scant handful of pellets. But he has done some pooing in the potty, and didn't have any pee accidents yesterday or today.

Below are daily notes directly copied and pasted from Leelo's daily record as I've no time and Seymour and Iz are leaving for tomorrow for a week boating with Seymour's parents (with my blessing; his folks built their boat for luring family and friends to sea, and there's no point in all five of us staying home just because Leelo isn't boat-compatible). Herewith:

WED 8/1

Underwear 6:30 AM - 8:30 PM. Well now. Did very well staying dry until school. Accident at school. Was placed in pullups; had poop in those. When we returned home and I returned him to underwear, he had a major hissy fit. Took him into the pool; he pooped there. Took him out of the pool and put him on the potty where he peed nicely; then he ran into the backyard and peed on the trampoline. Did very good poops in the potty for Seymour with juice as reinforcer (***EPIPHANY***). Had two more huge poops after being put in bed (with pullup). [Killed three or four outfits and at least one set of sheets.]

Very kindly and spontaneously handed a water bottle to Mali in the car when she asked him to. No external prompting or repeeating of her request. Beat the holy hell out of me when I put him back into underwear after a mid-day pullup stint.

Very good asking to "put diaper back on" when I put him in underwear in the afternoon (he had an accident at school and I had forgotten to take the pullups out of his backpack).

THURS 8/2

Underwear all day. Naked during break b/t morning therapy and summer school. Only accident was when naked and ran into living room and peed on futon right after peeing in toilet (random). Some poops in the potty at night for Babysitter K, but not much. He is trying to push really hard, though. No night poops.

Asked Seymour for "No kiss" as Seymour was leaving for work,which meant that he wanted a kiss. Still adding "please" to the end of all sentences.


FRI 8/3

Underwear all day. No accidents doing toilet intervals of 30 - 45 minutes, even during errands (dropping Iz off at camp, etc.). Trying to use cheesy puffs & juice as reinforcer. He is having a rough time producing poo even with lots of trying. I am worried that he is getting blocked up.

Trying to give him more fiber & oil.

Very pleased to see that he now always wipes the fronts and backs of his hands on towels (I've only been working with him on it for three years) while reciting to himself "fronts and backs...fronts and backs...")

Technorati Tags: autism, autism blog, autistic, potty training

Reunion Final Recap

Reunion Final Recap

Okay, so here is the short version of the reunion. I'm never going to get to anything longer:

• Gwen Stefani didn't come. No surprise; she was very shy in high school.
• A bunch of the very nicest people I know got divorced. Their exes have to be the stupidest fucking people on earth.
• I love Dee so much!
• A lot of people looked like hell, but all the people we hung out with looked amazing. I think Mr. Bakery, Dee's partner, and Godfather M were among the few men who didn't look bloated and partially melted. But most people were quite nice.
• Two people who hung out with me when I was wee but figured out by 5th grade that I was a geek and dropped me cold wanted to come up and reminisce about Good Times. Uh, okay. I guess I'm still slightly bitter! Yay for maturity!
• The people I really loved in junior/high school but haven't seen in, oh, forever? I still think they're wonderful and we still get along amazingly well. Will have to try to be better about keeping connected.
• Two guys I've always really respected turned out to be major comix junkies. We were working through some small talk, one of them mentioned that he was missing Comic-Con, we other two yelled out in anguish, "I KNOW!," and the conversation took a deep plunge into Geekland. Will have to follow up with them, too. Especially since I couldn't remember that the reason for reading Runaways (which one of them hadn't read) was that it was another Brian K. Vaughan project like Y: The Last Man (which we all keep up with).
• Anasleim is still a shithole. But now it's a shithole be-ringed by Starbucks.
• God do I not miss Orange County.

Now, I didn't want to go to this reunion. Not because it conflicted with BlogHer, because last year's local event proved that I am even less voluble or socially enabled than advertised, and I ain't paying money to go to fricking Chicago just to remind myself how well I suck at conferences in which I have no role. No, indeed, I didn't want to go because I honestly was not interested in seeing anyone from my high school whom I wasn't already still in touch with, nor did I feel like hanging out with a bunch of people who would spend the entire evening, as they did at the last reunion, wondering whether or not Gwen Stefani is going to show up. Besides, Hayley had offered to let me be her roommate at Comi-Con, a conference at which my role would be clear: I would be her partner in mainlining fangirl-strength geekitude. And her job set her up with cool passes to cool events.

But I am glad I went to the reunion. The people I did hook up with again, they were worth it. And there is nothing better than getting to hang out with Dee and her crew, except maybe hanging out with Giddy AND Dee AND their crews. I just wish my boy was in a space where both of my boys could have come along, too.

Reunion Weekend Continued ... Oh, Wait, Someone Peed on the Floor

Reunion Weekend Continued ... Oh, Wait, Someone Peed on the Floor

Seymour, bless his proactive soul, decided while I was off reunioning that as long as he had a weekend with Leelo all to himself, he might as well put our boy on the All Undies, All the Time wagon train. Then Seymour went back to work.

I was slightly surprised by the change in schedule, but fortunately am in a state of continuous daze, and adjusted well. Besides, I agree with Seymour that there is no going back.

Leelo is making a good effort for the most part, as long as we take him to the potty at least every 45 minutes. The only accidents that occurred on my watch happened when that time frame was breached, which means that I am becoming increasingly alert, and that is not a bad thing.

Leelo won't poo in the pot, though; he holds it all day (or until we take our eyes off him for a moment and he can lie down and stick his butt in the air) and waits until after he gets to put on his bed-time pullup. I am worried that this kind of withholding could lead to encopresis, but am willing to stick it out for a few weeks at least. I think that the withholding itself indicates that he has the necessary control for full-fledging toileting, and that once he realizes the all-underwear concept is a permanent lifestyle change rather than a phase, he will start doing what he needs to do. All ten fingers crossed.

At the moment Leelo only leaves the house to go to school, and we make very few stops along the way. When we're home, I have him and Mali spend as much time naked as they can, but regardless have to watch Leelo constantly to make sure he's not perched or standing on anything absorbent (e.g., the futon currently serving as our couch). I have also checked out every single potty-related book at the public library and stacked them next to the toilet, and read as many as Mali and Leelo will tolerate while they do their every-45-minute potty time. Mali even produced a miniature turd today, though she seemed mostly unaware.

So, busy. If you want to see me then you'll most likely need to come to my house. But it's for the greater good; it may be that our family is heading towards a diaper- and pullup-free future. That would be blissful indeed.

Technorati Tags: autism, autism blog, autistic, potty training

Reunion Weekend Capsulized

Reunion Weekend Capsulized

FRIDAY

• 12:30 PM Pile four kids in car (mine + niece Nicole), drop Leelo off at school
• 1:00 Leave Deadwood.
• 2:00 Stop in Gilroy for reinforcements: drive-through triple latte
• 2:05 Hit snarly Garlic Festival traffic
• 3:00 Leave Gilroy
• 3:30 Did they give me decaf? Pull over to side of road and tell big girls to watch Mali while I take a short nap
• 4:00 Onward, stopping every 30 minutes - hour for some reason concocted by the big girls. Decide that I no longer like listening to Henry the 8th I Am (Iz and Mali's constant request) or Rehab (Nicole's)
• 9:30 Arrive at my brother's place in Orange County

SATURDAY

• 8:30 Wake up everyone so as to gear up for the beach
• 9:30 Phone call from Dee as I'm getting in the car: Apparently the World Cup of Surfing is taking place at the beach we'd targeted
• 10:00 Beach!!!!!! Dee was there with family, so was Mr. and Mrs. Bakery, and we even had a surprise showing from Joshua and family, whom I hadn't seen since their wedding in '02. The very best fun was had, all the kids were cute, and I was reminded once again that SoCal beaches trump those up here.
• 2:00 Ack, time to go to the restaurant! Mr. Bakery rode with me and the kids. On the way we debated the etiquette of flatulence, seeing as Nicole was bombing the car every five minutes. Mr. Bakery averred that it was silly to hold them in as it would give you bad cramps. Mali's response: "Are you serious?" Everyone in the car laughed.
• 2:20 We picked up Godfather M at his mom's house. His sister was there, too as was their new beagle puppy! The girls went into cuteness apoplexy.
• 2:30 At the restaurant. Met up with Dee's family, Mr. & Mrs. Bakery (sans kids; they'd been jettisoned to a relative's), and also Riane and Ima from our high school class. Much photo taking took place. The kids were all cute little bugs, especially Dee's Lecia, who is almost two and narrowly escaped being eated up by me because she kept requesting that I sing "Wouldn't it Be Loverly" and the cuteness, it was too much. The ticket for all those people plus quite a bit of Sangria was around $60. I still owe Godfather M my share.
• 4:30 Hit my brother's house. My mom, her dog, my pilot brother, his two kids, his heavily pregnant wife, and her mother had arrived in my absence so that the cousins could all play together. Much jovial mayhem ensues.
• 5:30 Ran into the bathroom to scrape, scrub, and shellack myself.
• 5:35 Looked at the bright red water running from my head and realized that not only did I forget to bring the dark towel I had been using as a pillow cover into my brother's white bathroom with me, but that all of his towels are either snow or milk colored. (And if you get that reference, I'll send you ten dollars.)
• 5:40 Used a white hand towel, to dry first my body and then my head. Tucked ruined towel into a plastic bag to sneak home.
• 6:00 Okay, now I'm ready:

• 6:05 Kat, my date, arrives with her two kids so that they can be part of the frolicking.
• 6:15 We drive all the kids to the local park, where they will meet my sister-in-law Bree and her two kids in my absence.
• 7:15 Kat and I arrive at the reunion.

Um, I'll finish tomorrow.

What You Don't Want to Hear From Your Kid's Teacher

What You Don't Want to Hear From Your Kid's Teacher

Leelo's main teacher was out yesterday, so instead the class was lead by the assistant teacher and a sub. I have been assured all along by the program director that they really get Leelo and that his instances of behavior have been manageable. This is why I was a little surprised to have the assistant teacher tell me yesterday that "Leelo had a really great day! He had nowhere near his usual amount of explosive aggression!"

Sigh. This is the class where it looks like he'll be going in the Fall. I've not found anything else that works for him, and have still not had any luck getting in touch with the County classroom folks. The one time the County director did call me back--thanks mb!--was when I was at an IEP and couldn't talk. I'm not thrilled about this class for Leelo, even though I think the instruction is mostly very good. But Supervisor M thinks Leelo needs the legally mandated first grade curriculum of five hours per day, the classroom is far too small, there's no playground, the bathroom is not in the building, it's only three hours per day, and it's in the afternoon from 1 - 4 which completely fucks up my day as it is in direct opposition to his sisters' schedules: Iz will be in school daily from 8:30 to 2:50 and Mali will be dropped off at Teacher Anarchy's school (thank you Baby Jesus) from 8:30 to 11:30.

Calling the county folks again today.

Technorati Tags: autism, autism blog, autistic

Simps0nia

Simps0nia

We stopped off in The Valley on the way home from The OC, to drop off my niece Nicole at her mom and stepdad's house. (Nicole had stayed with us in Deadwood for the previous week; we drove her back to and stayed in her dad's house in Orange County for the reunion weekend.) This is not terribly remarkable.

What is worthy of note is that Nicole's mom and stepdad are both animators on a certain show/recently released Springfield-centric movie. Nicole's mom gave Iz a signed season box set (she created and directed all the interstitial pieces), and Nicole's stepdad not only gave Iz a signed copy of the Enterfoinment Weekly sporting his cover art, but walked her through the storyboards and script and general episode development process he was currently working on. Which meant I got to see it too. So frickin' cool! Iz nearly passed out, so intense was her glee.

To those of you who know of Nicole's mom: I am happy to report that she seems to have matured one thousand fold, and has become a person upon whom I no longer wish to take out a contract.

I also feel obligated to report that the fact that our intended Highway 101 route was shut down due to a thirteen-car pileup, and that the Valley-top 405/5 interchange was plugged due to an accident including a Jeep that was still in flames as we passed did very little to alleviate my near-phobia of El Lay and general Southland traffic.

More reunion weekend stories coming.

When Your In-Laws Offer to Pay

When Your In-Laws Offer to Pay

Someone recently asked whether or not it is a good idea to have well-heeled in-laws pay for an autistic child's home therapy program when public (school district or regional center) funding is available. Here is my reply:

My first thought would be to take your in-laws up on their offer. Private pay often affords you more control and flexibility (i.e., if you do not like the agency's approach, you can take immediate action; if a wonderful therapist feels he/she may leave due to cost of living, you may be able to offer them a raise), and you may be able to transition to regional center or school district (SD) funding later. We did private pay (thanks to fairy grandparents) for three years before transitioning to the school district. Because we had a truly fantastic, well-documented, established program, the SD agreed to take over funding rather than disrupt our son's program and life. We feel extremely lucky.

However, my in-laws are tolerant, trusting people who feel that those on the front line -- my husband and I -- are the experts. They wrote the checks and read the reports, but never imposed themselves on our program or decisions. If your in-laws' financial help comes with their intolerable interference, it may be better to go with regional center funding. (Though that also usually means a big struggle.)

Another thought is that your in-laws may be able to help you out with respite/babysitting that is completely separate from your therapy program. My in-laws still pay for a "babysitter" (actually a behavioral pre-K school teacher) to come for a few hours a week to do "engaged play" with our son, to follow his lead and keep him interacting in the less structured real world outside of therapy.

Good luck, and please keep reaching out when you need to.

-Squid

Technorati Tags: autism, autism blog, autistic

Fifty-Five Hours There and Back

Fifty-Five Hours There and Back

I had no idea a person could drive 1000 miles and see so many wonderful friends and relatives and do so many fun things in less than fifty-five hours. 'Twas fun, but I'm going to sleep now.

Leelo was very happy to see me. I felt the same way. And look, my handsome husband!

Chest in a Vice

Chest in a Vice

That is what my lungs feel like at all times for the past few weeks. I am not dealing well with living my life in sixty- to ninety-minute increments.
Moderately trivial events are stressing me into paralysis. And I am no use to my family or friends in this state; in fact I am being awful to people who are helping me out.

Today the girls and I head south for Ye Olde Reunion. My hair, it is hot. My dress, ditto; same for the shoes, purse, and baubles. But I will be missing my favorite accessory, which is Seymour. He and Leelo will be staying here in Deadwood, because no event is worth giving my son three weeks of post-travel-stress right before Poo(t) Camp. But I so very much wanted to show off my hot husband with the cool job, seeing as I myself will have very little to crow about. Sigh.