3.29.2009

Today's Found Item: Steak Calligraphy

Found Item: Zelly's Steak Calligraphy

Iz taught herself calligraphy via The Double Daring Book for Girls, a useful book indeed and one that will get a proper review later in the week. Until then, it appears that I need to go stalk a cow, as my attempts to serve my family lively vegetarian fare are not being appreciated.

3.26.2009

Not About Bunnies and Fairies

Ann Bauer's most recent Salon article is about the recurring waking nightmare that is her adult autistic son's downward spiral into unthinkable violence. Please don't click through if you're in a tender or vulnerable emotional state:

http://www.salon.com/mwt/feature/2009/03/26/bauer_autism/index.html

This story affected me so deeply that I wrote my first-ever letter to a Salon article author:
Thank you for sharing this.

Like your past self, I put a lot of energy into emphasizing my autistic son's many, many positives. But he is only eight, and I have always been aware that his challenges may multiply. So, while your son's story initially had me vomiting with stress and fear about the future, I agree that it had to be told.

If parents of younger autistic children only hear success stories, and our children's paths follow your son's, then none of us will be prepared. We might even feel cheated -- or, cheated again, if we'd also bought into post-diagnosis cure and recovery hoodwinkery.
You have my empathy, and thanks.

Leelo is already a violent boy, though less so than he was this past winter. But he is also a young boy, with an unwritten future. I will continue to search for and celebrate the positives in his and our lives, while remaining aware that no one can guarantee an ideal outcome, not for any child.

More opinions:

Kevin Leitch at Left Brain|Right Brain
Kristina Chew at Autism.Change.Org
Emily Willingham

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3.23.2009

Pinch Me. Again.

The good folks at BlogHer have asked me to be a community editor!

I will be writing about parenting special needs children, a topic Blogher has not previously covered, and on which I can opine endlessly.

The contract is signed, the details will be forthcoming, and I am quite giddy. This is a welcome, cherished opportunity to share more resources with families of special needs kids.

It is also an opportunity to make our families less "other," because BlogHer community editor articles circulate on the home page. While fewer people may click on me than on the very entertaining BeautyHacks, I'm hoping to cajole at least a few brains into thinking beyond the Special Needs label, and towards considering us parents, caregivers, siblings, and children, first.

A final thanks to BlogHer for once again shaking me out of my winter tailspin, as they did with last year's invitation to speak at the BlogHer 08 conference. I will do my best to kick ass and not let anyone down.

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3.22.2009

Costco Carnivores Experimental Dinner Party #1

So, the economy. Smacked us in our asses, too. We are budgeting like the wind. We are born-again Costco shoppers.

Did you know they sell really, really big hunks of meat at Costco?

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Mali was "helping" me with pre-party house prep. After the picture was taken, she stashed this broom. It took us 24 hours to find it.

Hunks big enough that were one to be in possession of, say, an industrial oven that was bought on the cheap for a dream house that never materialized, one could talk twelve friends (and friends of friends) into an experimental gourmet potluck dinner by promising them at least a pound of restaurant-quality rib-eye roast, for a per-person investment of only six dollars?

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Points to anyone who can name this china pattern.

It's all true. And while I found the roast to be a notch or two below the epiphanic rib-eye steaks (also Costco) that Jennyalice, Seymour, Descartes, and I enjoyed on Valentine's Day, I thought it worth the investment. I hope our guests agreed.

And I hope we do it again. Because -- damn -- people can cook! The appetizers, salads, sides, wine, and desserts gave me indefinite fodder for happy foodie daydreams.

What did we do with our kids, you may ask? Well, few of us monkey-tenders have extra babysitting cash, and many of us have quirky monkeys who are not always restaurant-friendly anyhow. Why not feed the monkeys pizza and then let Homer Simpson be their babysitter while the adults eat the human food?

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Scoff if you will, but my kids know the difference between satire (Simpsons) and parody (Weird Al). Do yours?

Ideally. Leelo is not a pizza-eater or a Simpsons-watcher, so Seymour, Sage, Jennyalice (blessed, all), & I took turns hanging with him during the dinner. The other kids were happy to enter TV trances.

Were we to have another side-of-beef feast, I would likely get a sitter just for Leelo. But we have had other dinner parties, smaller dinner parties, Costco-fueled dinner parties, babysitter-free dinner parties; parties in which our friends with the quirkiest, Leelo-bracket kids have brought said kids along and put them to sleep in the guest room after kiddie dinner, and we adults have enjoyed late but happily kid-free dinners and apertifs:

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Yaar, they be gripping the Green Fairy.

And then we all get to wake up the next day and have a happy happy multi-family morning:

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Note that last night's sidecar fixings are still on the counter.

So, if you're like us: looking for a good time, don't want to pay for babysitting, can't really take your kids out anyhow; or if you just can't pass up an opportunity to knaw on some damn fine meat, you know who to call.

(P.S. I've not linked to the mostly bloggity-blogger attendees so as to not stand on their shoulders.)

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3.20.2009

The Screaming Match

Even though I spend most of my time plugging mindlessly along the rails of our family routine and reacting rather than thinking, I do occasionally engage with other sentient beings. During those times, I try to keep two higher ideals in mind:
  • Even assholes deserve a chance to have their say.
  • The greater good is more important than my pride.
I am not always successful.

Jennyalice, DoubleTrouble, and I recently signed up our boys for 1:1 aide-slots at a summer camp for special needs kids. According to my veteran friends, the sign-up process has become more of an endurance contest, more like Hands on a Hard Body, each time. That process needs to change, or someone's going to get hurt.

Last time, which was my initiation, our friend Betty went to the camp office at 6 PM, and signed our four names on a posted list. She called to let us know that though the list had only been up for an hour, we were applicants fifteen through eighteen. DoubleTrouble, Jennyalice, and I arrived to stand vigil -- to represent -- at 3 AM. Things got prickly as dawn approached, with parents who'd arrived after the 5 PM list posting complaining about said list loudly and not without basis to anyone who would listen. It was a tense and not particularly pleasant experience. When the office opened at 8 AM, we were all ushered in, by number. My friends and I got the last 1:1 slots, and left by the side door so as to avoid mob-style retribution.

DoubleTrouble let us know in that she wasn't taking any chances with this latest session -- she was going to go down to the office herself at 5 PM. But Jennyalice and I had a conflict -- we had scheduled a Can I Sit With You? Live! event months ago. We decided that our only option was to go straight from the event to the vigil, and join DoubleTrouble there.

At 5 PM on the day the vigil began, and as Jennyalice and I were scrambling in our respective homes to juggle in-the-moment needs of our broods with the last ninety minutes of CISWY event and vigil prep time, DoubleTrouble called to say that she was at the camp office, that THERE WAS NO LIST, that people had to line up physically, and that she was already #5 in line. Freeeek.

Thankfully Jennyalice's partner Descartes, in characteristic jump-on-grenade mode, volunteered to be the placeholder for the two of us until we could arrive, and secured slot #10. For which I will be forever grateful, as my own partner was stuck at work forty miles away.

After our wonderful, wonderful Can I Sit WIth You? event, Jennyalice and I headed south to join the endurance contest. I wasn't feeling optimistic, given the nasty vibe lingering from our previous sign-up experience, so imagine my surprise when DoubleTrouble and some other folks greeted us with beers and pizza and chatty, foxhole-style comradeship. Even as the night wore on and temperatures plunged towards 40°F, things stayed cheery. Several people -- who had expected a list rather than an in-person marathon and so did not bring cold-weather gear -- headed for the relative warmth of their cars, while the rest of us said we'd hold their places.

Then 5 AM came, and with it a most intense woman.

We let her know that she was number twenty-one in line. She freaked. And I get why she would freak, seeing as the camp office staffers had told her less than 18 hours beforehand that she did not need to wait out all night, that she should come in the morning and get in line, and that they would take applicants based on their place in line.

But she wouldn't shut up. And she was extremely loud and unpleasant to those of us who were there, perseverating on how she didn't care that it was near-freezing and that she didn't care if people had been waiting since 2 PM, that anyone who was not in line RIGHT NOW was not in line as far as she was concerned, and she wouldn't respect their position when they returned.

A couple of us tried to explain to her how things had been up until her arrival, how circumstances were adverse, how people were caught by surprise, how we were trying to take care of each other. She wouldn't listen and said she didn't care. Loudly and repeatedly.

Finally one of us told her, rather firmly, that she needed to be quiet, now. She responded that her kid didn't get a spot at camp last time even though she waited all night and that she was going to get her kid a spot this time. I felt for her, even under my growing layer of irritation.

And then she told us that her kid deserved to go to camp, because her kid was just as autistic as everyone else's kids.

That is where I, to my discredit, lost most of my sympathy for her. When she let loose with that crack -- which was almost certainly based in ignorance and panic -- she was standing next to a parent with two non-autistic kids. Two wheelchair-bound non-autistic kids.

I started to fear for the brawl she was going to touch off if someone didn't shut her down.

The group that had stayed in front of the office all night was a relatively calm group. The group that would return from their cars momentarily contained some parents who might not be so tolerant. Some of whom had three kids, some of whom had two, and many of whom were a whole lot bigger than me or her. What if they had tempers? Tempers that would likely not be helped by a freezing night without much sleep?

I started thinking of Jimmy Carter, and his handling of the Iran Hostage Crisis. In a recent radio interview, he stated that while his almost exclusively diplomatic approach was unpopular and cost him a second term as president, we did not go to war against Iran, there were no rivers of blood, and all of the hostages eventually returned home. He said he could live with that resolution.

I am not a diplomat. I wish I had Mr. Carter's diplomatic skills, but I don't. But I knew something had to be done. So, when the woman revved up for her next complaint cycle, I told her that she needed to be quiet and respect the people who were here before her. She didn't want to hear that, and got louder and angrier, and wouldn't let me finish a single sentence without yelling over me. Finally, I shrieked,
"You need to SHUT UP RIGHT NOW because a bunch of really big, really angry parents who have been freezing their asses off since last night are going to show up soon and THEY ARE GOING TO HANG YOU FROM YOUR FUCKING ANKLES IF YOU DON'T SHUT THE FUCK UP!"
She spit back, "I'd like to see you try!"

Then DoubleTrouble came over and soothed my huffing and puffing form back into my sleeping bag cocoon.

And the woman? She mostly shut up. By which I mean she talked pleasantly and ceaselessly to the people behind her, without another argumentative word about anyone's place in line.

So, mission accomplished. By me being an asshole. Which I regret. But nobody got hurt, and guess what? I'm pretty sure that everyone in line got their kids a spot at camp.

I hope that woman has the support she and her child deserve, and need. I wish I could put on a wig so she wouldn't recognize me and meet her again, and encourage her to join SEPTAR or a similar support network. I wish I'd had the skills to help her understand that no one liked our gordian knot scenario, but we were dealing with it as positively as we could.

My biggest hope is that the camp changes its sign-up procedures for the next session. The current model is not tenable, especially for single parents. My friends and I are going to write to the directors and suggest a lottery, but if anyone else has a better idea, I'd love to hear it.

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3.19.2009

Leelo During a Lovely Phase

Leelo is in a good space right now, and has been since the year began. I like to think he is where he is because his medications and environment have been adjusted to ideal parameters.

I have not been writing about his and our good fortune for many reasons, one of which is my fear of post-hubris karmic retribution: the storming, aggressive, miserable, sleepless, bottomless-pit Abilified Leelo of November and December brought me as close to despair as I've ever been. While I realize that Leelo's ability to wear his own skin comfortably will wax and wane, I don't want my boy to revisit those dark lands any time soon.

So, for now, delight in our happier Leelo. Sometimes, when we've done something that makes him really really happy -- understanding what book he's asking for, or correctly guessing what activity he wants to do -- he jumps up and gives us bear hugs with locked-on eye contact, and laughs galore. Approaching Nirvana couldn't bring more joy than those moments.

We are fully indoctrinated into the use of visual schedules (mostly a portable hand-held one), and it makes life easy on both sides. Leelo wants to know what to expect, and we are trying not to abuse his unquestioning obedience of icons. As far as he's concerned, those icons appeared via a conversation with a burning bush.

Leo's Portable Visual Schedule

He's still eating too much, but at least he's got more variety than he had in the previous five years. He still eats at least an apple a day -- guaranteeing his health forever -- and is down with raisins and dried cranberries.

His new therapist, V., who started the day after Leelo switched meds and so has not yet seen Leelo in a black phase, is a wonder. It's as though we pulled a Weird Science maneuver for an ABA therapist instead of Kelly LeBrock. More happy days.

Leelo is waking up dry most mornings, and is back to relatively spontaneous pit-stopping. It still may be a few years before he achieves total self-sufficiency, but his overall continuing progress is undeniable.

He has a knack for soccer -- really good eye-foot coordination. He can stop the ball with his feet, and has excellent aim. Goofing around with a soccer ball is now one of our few whole-family activities; one-on-one play with Iz or Seymour (both of whom have skill) is particularly fun to watch.

I removed his five-point harness "throne" from the back row of the minivan in January, for reasons that now elude me. It took me two months to put it back, because I so enjoyed having him sitting on a booster in the front seat next to me (the only other seat placement in which he couldn't get to Mali). I still love it -- we hold hands, sing, talk as much as Leelo ever talks, and have some fairly pure and honest together time. As Jennyalice or Gollum would say, it's precious.

His ability to anticipate musical tones, and keep a beat, is still dead-on. I need to lure someone who really knows or perhaps even teaches music (**cough**) up here to figure out just what Leelo's abilities are and how far he can go. I won't torture you with the vocal exercises I create to test him myself, because then you would have to listen to me singing and then your ears would burst into flame, but I will embed the video which gets him to pogo in perfect time:



He has two camps coming up. TWO! One weekend in May, and one six-day extravaganza in August. He's going to be so happy! The rest of us are too dazed by opportunity to figure out what we'll do with that free time.

At the moment he is the star of his classroom, and is able to stay on task most of the time even when the other students are screaming or otherwise vying for my son's former "most disruptive child" mantle. He is even starting to go on field trips with the big kids.

These classroom improvements mean that he may be able to "spread his wings" (in the words of one of the school administrators) and try out a classroom on an integrated campus, next year. A campus where he and I will have friends, on which the SDC kids have "buddies" and are made to feel part of the campus, where he will have typical peer socialization opportunities, as opposed to his current segregated campus. Fingers crossed. This is an option we weren't considering even two months ago.

We finally got respite hours approved, 12/week. This is more than is usually alotted, so it's a good thing our social worker saw Leelo when he was on a downward behavioral spiral. And even though he's doing so well, these hours are still necessary -- because while Leelo is no longer randomly assaulting people (e.g., his social worker), he is still determined to get Mali. Those two still need a barrier between them at all times.

Things with Leelo are not perfect, but many of us parents with special needs kids stopped gunning for Perfect a long time ago. I'll settle for 90% happy, because that's where we are today.

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When to Tune In

If you want to read about my screaming match with another desperate mom of a special needs kid, then please tune in tomorrow.

Check back this afternoon for a bit of verbal tap-dancing about my lovely Leelo at this moment in time.

On Saturday or Sunday, I will post about the Costco Carnivores dinner party we're hosting on Saturday (like grad school potlucks, but with prime rib!).

And on Monday, I will make an announcement about which some of you may already know; about a scenario that has put back the long-missing spring in my step.

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3.13.2009

Promoting Peer Empathy for Special Needs Kids

This is a follow up to Monday's post Not Nice, in which I bullied a girl despite (though not because of) learning about her sister with special needs, and Wednesday's post What Kind of Kid Bullies the Sibling of a Special Needs Child?

(Apologies for the posting delay. I'm coming off a 40-hour day that included a Can I Sit With You? Live! event, plus an overnight vigil to sign Leelo up for summer camp -- during which the temperature hovered around 40 degrees, I got in a screaming match with another parent (not proud, details to come), and my cohorts and I succeeded in getting our kids into our first choice camp dates.)


Why is it that no one ever talked about my junior high classmate Deanna's sister? Why is it that we didn't know that she had a sister with special needs the same way people knew that Sally's sister played the tuba, that Michael's dad was a dentist, or that Gillian had a single mom?

I suspect it was because parents of children with special needs were so much more isolated from each other twenty years ago. I am guessing that without today's online social facilitation tools like Yahoo! email groups, Twitter, Facebook, and blogs, it was much more difficult to hook into a community of friendly but assertive parent advocates, and so speak out or take action on behalf of one's kids.

I have those online tools at my disposal, so this is what I do with them:

I blog, obviously. While my posts skew more towards Leelo's challenging and less towards his happy contented times, I want his humanity fully documented. I want people outside the special needs community to know that kids without recovery success stories can thrive, too. And that they are very, very loved.

I take advantage of my position on both typical and special needs parenting yahoo! email boards to promote easy opportunities for kids to build empathy for their special needs peers. I want the parents of those typical kids to see that I have no problem talking about my special needs child, and that I want their kids to feel the same way (am I using guilt to twist their arms? Maybe. That line is sometimes blurry). Here's this week's example:

The last three performances of the Pacifica Spindrift Players' The Miracle Worker are this weekend: http://www.pacificaspindriftplayers.org/

For those who may not know, The Miracle Worker is the story of Helen Keller and Annie Sullivan, and is a wrenching but ultimately cathartic portrayal of the freeing of a trapped mind. In the play, blind and deaf Helen is basically feral until Annie comes into her life and shows her how to communicate. With Annie's guidance and advocacy, Helen blossoms and eventually becomes an author and political activist. (More information:
http://en.wikipedia.org/wiki/Helen_keller)

My eight-year-old son won't sit through a play, but I'm rounding up a crew of his neurotypical ten-year-old sisters' friends, and driving them to the play myself. And not because I'm altruistic -- it is part of an ongoing campaign to help my daughter's friends see her autistic brother as a person and a soul despite his communication difficulties.

I'm putting this out there for any like-minded parents who might not know of this opportunity.

-S
I use those same boards to spread information and hand out tools from our local Special Ed PTA (SEPTAR) meetings, such as Diane Levinthal's presentation on Helping Peers Understand our Kids's Social Challenges. Diane's is a script that any parent can present:
http://www.squidalicious.com/2008/11/helping-peers-understand-our-kids.html


Those peers and their parents only live inside their computers part of the time, so I take offline action, as well:

I take Leelo out as much as I can. I want peers to know that my daughters have a brother. (Really, I want Leelo to be comfortable with our entire community, and I would like that feeling to be mutual.) Leelo's recent behavioral challenges put his ambassadorship on temporary hiatus, but Risperdol seems to be helping him once again tolerate and even enjoy the world outside our house and his school.

I try to make our house a destination for all three of my kids' friends. We have a pool, a big trampoline, and lots of toys. We always have pizza, cookies, or ice cream. We have wiggle cars, scooters, and ideal hide-and-seek conditions. We have beanbags and walls of books. We have a big wild tree-filled hillside for exploring, including a path that leads to a neighbor's horse corral. I want Iz's and Mali's friends to want to come to Leelo's house. I want their peers to spend time around Leelo, to get to know him, to understand how to hang out with him. I have no problem providing whatever bait it takes to reel them in, and get them to stay.

I know we can't reach all of Iz's and Mali's friends. I know that peer pressure may get to the more weak-willed of them, and make them start declining play dates. Friends who once understood that Leelo has occasional accidents, that his behavior is sometimes erratic, may start to be less comfortable as coolness and rebellion factor into their social calculations.

I also know that kids can be heartless. The most horrifying conversation I've ever overheard took place between two typical high school jocks: they laughed as they described the mean things a friend did to his wheelchair-bound paraplegic mother because she couldn't stop him. I have always wondered if they were just crossing sticks to impress each other, or if they really were that awful? If they and their parents had been exposed to everything I've listed above, would they have known better?

What I am trying to do, what I will keep doing, is trying to reach kids like them, like the junior high me. Kids whose empathy can hopefully be cultivated, with enough early guidance and immersion.

My girls' lives are going to be challenging enough with Leelo as their brother, darling as he can be. I'm doing whatever I can to make sure their peers don't make their lives even harder.

------

The inspiration for this series was Facebook's continuing insistence that I Friend Deanna -- we share almost 30 friends. I cringe every time her picture is served up.

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3.11.2009

What Kind of Kid Bullies the Sibling of a Special Needs Child?

This is a follow-up to Totally Honest Blogging: Not Nice, in which I tormented a junior high classmate even after I found out she had a special needs sibling.

What kind of kid acts the way I did? Harasses a peer without cause, for sport, and after discovering facts about the victim's home life that should have made them totally off-limits?

In my case, there were two reasons:

First, I suspected that no one would stop me. Most people didn't realize I was such a little asshole. Adults like my kind, hard-working parents considered me harmless -- if sullen and a bit of a shirker -- and most students didn't notice me. My victim Deanna was quiet and kept to herself. When I decided to bully her, I anticipated smooth sailing on those soulless seas.

Second, people with disabilities were theoretical to me. Most kids my age tossed around the word "retard" as a synonym for "jerk" or "loser;" I had never before known a classmate who would find "retard" hurtful. I never considered that people I actually knew could have family members with disabilities. When I found out that Deanna's sister had special needs, I was intrigued, but not enough to change strategies or target. Not enough to stop badgering a blameless girl, or consider that her life might have been challenging enough before my bullying.

I had no empathy touchstone. I had no personal connection to anyone with a disability.

The problem wasn't lack of exposure: there were eight students in the special ed class at my sizable elementary school, and their three teachers frequently brought them onto our enormous shared recess field. But I don't remember any attempts to integrate those students into our community, to help us meet them, talk to them, understand that they were just kids, too. They sat on the grass near us while we played statue maker, but they might as well have been behind a glass partition.

No one ever helped us recognize the shared humanity behind the special ed students' differences. And unfortunately, my personal experience has been that many people still need to be smacked upside the head before they can see the kid under the special needs label.

If I could reach back in time and smack myself, believe me, I would.

On Friday: What parents and teachers can do to help promote understanding and prevent bullying of children with special needs and their siblings.

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3.09.2009

Totally Honest Blogging: Not Nice

My friend Jennyalice frequently remarks that she is "Not nice." I don't believe her. But I do believe that I've been Not Nice for a long, long time, as this mortifying post illustrates.

I found every last part of seventh grade bewildering. The hundreds of new students, the maze-like new campus, the rows and rows of lockers, having to choose classes and then needing to switch between those classes six times each day, the concept of "popularity" and its blatant yet slippery links to student government elections, and the hundreds of new students.

My classmates and I had been plucked from our isolated, comforting, elementary school nerdling pod, and dropped into a massive social cage match. I found myself on the sidelines, confused and lost, in a holding pen with the geekiest geeks from five other elementaries.

I might have been at a social disadvantage, but I was also not a nice kid. And I quickly compensated for my social disorientation by picking on the weaker and geekier. Morgan Van Grundy and his bolo ties? Fair game. A friendly, gangly new kid with the then-rare name Cameron? In my sights. I quickly had them both squirming. Both asking me why I couldn't be nicer to them. Asking what they had ever done to me.

I remained unrepentant. Besides, I lacked the self-awareness to explain that I preyed on them so I wouldn't feel like fair game to the kids outside our fast-track classrooms.

After a few weeks as a free agent, I found an equally callous partner. Lara was a transplant from New York and had the accent to prove it. She was creative and vivacious and interesting, and told me secrets about life outside Southern California, about things like boroughs and fashion models. I started to spend afternoons at her house. I would moon over her designer jeans. She would tell me what it was like to have a single mom. We would talk in hushed tones about S-E-X even though no one else was home.

Lara was no more bone-evil than I was, but she shared my fondness for easy targets. So, when we weren't gossiping, watching TV, dressing up, or laying waste to her family's stash of Jello pudding pops, we were tormenting her neighbors and our classmates Deanna and Adele.

Deanna lived next door to Lara, and Adele lived a few houses down the street. They were good friends, and were cut from the same quiet, good-natured, studious cloth. I got the sense that Lara had been friends with them both in elementary school, but that they'd since had had a falling out. I never even bothered to ask what happened. I had no reason to target Deanna and Adele, not one -- except that Lara wanted to pick on them, and I liked to pick on people. Because I was not a nice kid. Because it was easy. Because I felt powerless, and so craved power, no matter how tainted or piddling.

This is what Lara and I would do:
  • We would walk behind Adele and Deanna and snicker.
  • We would follow them onto the volleyball court during P.E. and demand to know what "that thing" on Adele's face was (it was a beauty mark).
  • We would "oink" at Deanna and her perky upturned nose when the teachers weren't listening.
  • We would call them at home, several times a day, and then hang up when they answered.
One day, a voice that wasn't Deanna's answered the phone at her house. It was a teenage girl's voice, but a thick voice, a slow voice. I hung up and told Lara what I'd heard.

"Oh, that's Deanna's sister. She's retarded. She wears maxi pads in the swimming pool!"

And, inexcusably, I laughed and called right back. The sister picked up the phone. I wondered again at her voice's tone and texture, and then I asked for Deanna. Deanna picked up the phone, said "Hi?" and of course I hung up, because Deanna's sister and our need to harass Deanna were two entirely separate issues.

But I thought about Deanna's sister a lot, even as Lara and I kept up the harassment. What did the sister do all day? Did she go to school? Did she ever go out of her house?

Our own classes were small enough that after a few months we knew baseline biography information on just about everyone, so while I knew that Deanna had older parents, she never once mentioned her sister. Nor did anyone else. Not through five more years of classes together. I still wonder if Deanna's sister was a source of pain, strength, peace, or all three. If Deanna's silence was to protect her sister, herself, or both of them. If her silence was even a conscious effort.

Lara and I eventually gave up on Deanna and Adele because, to their credit, they ignored us. They didn't have their parents or teachers intervene, they didn't confront us, and they never retaliated in any way. They didn't even acknowledge that we'd said or done anything to them. We stopped bothering them, because without reactions to fuel our actions, we lost our motivation.

We never succeeded in taking away even an ounce of their power.



Not that I didn't find other victims to needle. After all, I wasn't very nice.

On Wednesday: What kind of environment creates children with such little experience with and sympathy towards people with special needs? In which siblings of special needs children never talk about their brothers or sisters?

---

For those who now need something with which to wash their eyes, here is Susan Etlinger's latest hero, slamming the foulness of the word "retard":


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Total Blogging Honesty: The Frivolous Version

Fact: I would eat an entire pan of these lemon bars if doing so wouldn't cause my stomach to burst.

LEMON SQUARES

With a pastry cutter, mix together:

2 cups flour
1 cup butter
1/2 cup powdered sugar

Pat lightly into a buttered 13 x 9 baking pan. The thicker the pan, the better.

Bake at 350F for 20 minutes, until slightly golden brown.

Mix together:

4 eggs
2 cups sugar
6 tbsp lemon (or key lime) juice
6 tbsp flour
1 tsp baking powder

Pour over crust (hot crust is fine). Bake another 20 minutes.

That's it. Seriously. Everyone who can eat this will love you. But if you do decide to share, I recommend not disclosing their simplicity -- best to let your friends think you're the only supplier of this particular foodgasm.

A slightly less frivolous post will pop up later today.

3.05.2009

Who Doesn't Love Drugs?

I suspect that Leelo's pediatrician thinks I'm drug seeking (and, to be fair, she has seen Leelo at his worst and so probably sympathizes with this imagined drug-seeking me).

I'm trying to figure out how to get Leelo all the shots, blood draws, and dental exams that he needs. I tend to let them stack up, because these scenarios requires a team of three-to-five people to hold him down, or (in the case of the dentistry) result in a cursory exam only. Leelo needs these procedures. And I need to figure out how to get them done without resorting to general anesthesia.

I called up Leelo's behavioral psychiatrist (the gentleman who prescribes his Risperdol) and was told that there are no contraindications between Risperdol and tranquilizers like valium or xanax, and that I could even get Leelo's pediatrician to prescribe them. So I left a message for his pediatrician, and received a call back saying that she wasn't really comfortable prescribing such things for Leelo. Which, again, is understandable. I probably wouldn't leave me in charge of a tranquilizer scrip, either.

But I'm still wondering how other violently non-compliant children and adults get through these routine procedures. I am tempted to call her back and ask if she would be comfortable giving him something in the office before the shot or exam, so that no prescription was involved, but feel that it would be better to have some anecdotal information as to what has worked for other kids like Leelo to give her, beforehand.

I am very interested in hearing what other people have tried.

After almost four weeks of fighting with various flus and colds, Leelo had what seemed to be a bout of sinus trouble this past weekend. It made him very unhappy. And his behavior deteriorated accordingly. Supervisor M said that she had more than enough data on Leelo's Risperdol experience, so we started giving Leelo Claritin at night, three nights ago. He's having a bit more trouble going to sleep at night on those three nights, but he also has been sleeping in to the point where *we* have to wake him up, and has had dry morning pullups for the first time in weeks. That's a rather marked correlation for a drug that's supposed to take up to two weeks to hit its stride. But Leelo does seem a bit better.

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3.04.2009

Leelo Progress: The Official Version

The bulk of what follows is excerpts from Supervisor M's progress report dated 1/20/09. Much of this data was collected when Leelo was still in his terrifying November/December 2008 Abilify phase -- a phase from which we are still recovering despite the fact that Risperdol has had such a generally lovely affect on Leelo's behavior and contentment, a phase that has left me in suspended animation and leached out any interest in writing or indeed most things. Though I did recently send the following email to a local parents' group, prefacing a summary of advice I'd been given re: autism, aggression, and antipsychotics:

It has taken me four months to write this summary because I wanted to add our own experience, and I wanted it to be positive or at least hopeful. That was unfortunately not the case with Abilify; even at a low dose it increased my son's aggression to the point where we stopped taking him anywhere or having friends over [though we made exceptions for my entire family during the holidays, obviously, and also for out of town friends], made him unable to sit still or focus on/complete simple tasks, made him so hungry that we had two choices: feed him all day or be assaulted (he gained a lot of weight), and disrupted his sleep patterns so that he was waking between 3:30 and 5:30 AM daily. Obviously, Abilify was not the right drug for him, despite the reports ... as to how other children benefitted.

I am happy to report that we have seen only positive results since we switched to 5 mg of Risperdol 2x/day (it has been eight weeks so far). My son has become focused, happy, sweet, affectionate, chatty, connected, and the star of his SDC. He has simultaneously started trying new foods while losing five pounds of his Abilify weight. For the first time *in his life*, he goes to sleep without a fight and on time, yet gets a full night's sleep. I am considering putting a small shrine to Risperdol in our entryway. And I am yet again fascinated by how very differently our children with autism respond to identical treatments.
Wouldn't you know, almost within 24 hours of writing that email, Leelo spiraled into another aggressive episode, directed mostly towards Mali, and me. We've resumed Claritin after a hiatus of several months, and are crossing our fingers. Anyhow.

BEHAVIORAL CONSULTATION AT PLAYA AZUL SCHOOL
Emphasis for consultation this quarter has been on reducing aggressive behaviors, and reducing stereotypic use of straws during recess by increasing engagement.

BEHAVIOR
Incidence of aggressive behavior: hitting self, hitting others
At school, Leelo’s aggressive behaviors [decreased] from last quarter. However, staff and family reports and observations suggest that the intensity of Leelo’s hitting has increased, as he is growing larger and stronger.

At school, hitting self and others continues to function most often to escape demands which cause frustration and confusion, and to gain access to preferred tangibles and activities (usually a straw, or outside time). Leelo may also hit other people to gain attention from staff and peers. He hits specific peers more often than others. These peers sometimes are screaming when he hits them (screaming can be a trigger for hitting); other times there is not clear antecedent other than the peer is present and nearby. Typically, hitting peers results in sudden and dramatic activity, as adults rush to the scene, suggesting an attention function, or perhaps that Leelo is bored and seeking change or activity.

MEDICATION
In consultation with a developmental psychiatrist Dr. R, Leelo started on a trial of Abilify 5mg 1x daily on 11/20/08. The dose was increased to 2x daily on 12/14/08. Leelo’s school staff were not informed of the medication trial. Hitting self and others appeared to continue at similar rates as before, and with similar, if not greater intensity. For example, in December, Leelo began pushing people and furniture (room area dividers) intensely enough to knock them over. [...] Leelo appeared less focused during independent work. [...] he was more obsessed with straws, throwing them away and requesting fresh ones. Parents reported similar behavior at home with Abilify.

PREVENTION OF PROBLEM BEHAVIORS
Staff consistently use name cards to prompt Leelo to refer to his visual schedule when he transitions between activities. Staff also use simple, clear language when giving Leelo directions. Staff are familiar with Leelo’s high risk times, including circle time, when other children are screaming, and waiting for computer. Next steps: increase use of praise and reinforcement for appropriate replacement and coping behaviors (e.g. waiting, hands down, etc); increase use of visual supports when giving routine less-preferred directions (walk together, put on shoes, wait), increase learning opportunities for practicing requesting breaks and help, waiting.

REPLACEMENT BEHAVIORS
Leelo is learning more appropriate behaviors to meet his needs:

Getting attention by tapping and/or calling someone by name. Staff provide daily opportunities for Leo to tap and/or call them by name. Leo consistently uses this replacement skill throughout the day when making requests. He does not yet use this when he wants to play or interact. He does approach adults and hug them. He also approaches both adults and peers and hits or pushes them. It is unclear if this type of hitting/pushing is an attempt to interact socially, or to create excitement/change in the environment.
Next steps: Teach Leelo to invite someone to play by giving a play suggestion e.g. “Let’s play ball”, or “Let’s play swings”.

Requesting a break: Currently Leelo practices requesting a break 1-3x daily, usually in context of circle time, and/or work with teacher.
Next steps: practice more frequently, or Leelo will lose this skill; staff should consistently honor Leelo’s request for break during circle time.

REPETITIVE BEHAVIORS
These continue to wax and wane. In general, they are best treated by blocking him from completing them, if possible, and redirecting Leelo to the task at hand. Currently, Leelo is requesting [others] to repeat words or phrases before he performs a skills e.g., ... “one at a time” during snack.

STRAWS
During the summer, ... Leelo’s stereotypic use of straws [was identified] as a problem behavior which interfered with learning, was associated with aggression, and posed health risk (he takes used or dirty straws). Leelo hits himself and others when his request for a straw is denied, and prolonged use of straws is a risk factor for aggression. An assessment in September of straw use throughout the school day showed 3 general patterns for straw use:

  1. No straw access: Leelo does not use straws during work station, puzzles, and snack, and generally does not ask for straws during these times
  2. Straw as reinforcer: During work with teacher and OT, straws may be used briefly (up to 10 seconds at a time, for a total of less than 1 minute) as a reinforcer for completing a task; Leelo also receives a straw for a few seconds when he completes all of his independent work station tasks.
  3. Unlimited straw access: During recess, motor room, walks, and circle time, Leelo has prolonged access to straws, for more than 5 minutes at time. Often, during these activities, Leelo may hold the straw for the entire duration of the activity
... Focus on reducing straw use [during leisure/unstructured time] by implementing a visual choice board of activities from which Leelo [will] select and participate in .... Straws were used as a reinforcer following participation in the activity.

The intervention was effective immediately with straw use reduced from 100% ... to an average of 54% .... Straw use continued to be high on days when [routine was irregular], and when [demands were reduced] due to aggressive behavior. When the choice board is used, 2 positive outcomes follow: Leelo is more engaged with the activities and equipment available during [leisure/unstructured time], and straw use is reduced.

Next steps:
  • Provide more variety of materials, and choices [during unstructured/leisure time]; consider bringing large trikes out during [this] time, as well as motor time; sensory table; large playground balls and basket hoop; bean bag activities; balloons; cones for tricycle obstacle course;
  • Continue to increase Leelo’s engaged time with recess materials, and reduce straw time further.
  • Explore this and other intervention strategies (e.g. noncontingent access) for reducing straw use at home
  • Consider putting straws on Leelo’s schedule, so that he knows when he can get a new one.
FOOD TOLERANCE
Family and staff are working to increase his tolerance of new and less-preferred healthful foods. In November, Squid worked intensively and successfully with him on eating apples. Currently, Leelo can eat a large slice of apple (about 4-5 bites), before receiving a handful of preferred snack (veggie booty) [Currently Leelo will eat an entire apple's worth of slices with no reinforcer]. His family is now working with him on eating orange slices [Discontinued; he loathes oranges. Via Sage and during speech/feeding therapy, we are having some success with freeze-dried mango, soy nuts, etc.]. Next steps: continue with apples, gradually increasing the size of the slice prior to receiving the reinforcing snack; begin to introduce next target food at home, in intensive session. Select food that was previously eaten by Leelo.

ENGAGEMENT
In addition to being critical for learning new skills, engagement in learning and activities is related to reduced aggression for Leelo. The more engaged Leelo is in purposeful, varied, and motivating activities, the less likely he is to hit himself and others.


HOME ABA PROGRAM
This quarter, Leo’s home ABA program continued to emphasize self-care and behavior, leisure, and communication skills.

VISUAL SCHEDULE
This quarter, Leelo’s family worked hard to produce materials for Leelo’s home schedule.
Next Steps: begin to implement the schedule, beginning at a convenient time (e.g. one where parent can attend relatively uninterrupted to Leelo and the schedule use)

VISUAL CUES FOR INSTRUCTION
Leelo’s family now keeps four visual cues in the car, which help Leelo when given directions, including “shoes on,” “seat belt on,” and “wait.”
Next Steps: keep these and/or other visual cues on person when spending time with Leelo in any location (store, around house, etc). Options include a key chain, small book, mini velcro board, etc.

SELF CARE
Check schedule: Continue to use visual schedule throughout ABA session
Next steps: begin using visual schedule with family during designated 1-hour periods each day (e.g. morning prep for school, evening routine, etc).

VISUAL SUPPORTS
Use text and icons to support routine, less-preferred directions (e.g. wait, shoes on, stop,etc).

INDEPENDENT WORK
  • Leo has mastered working on 5 tasks independently for between 15 and 30 minutes in his room.
  • Next steps: do independent work at kitchen counter, or in living room. [implemented]
  • Community Outings: Continue working on following the directions “stop”, “walk together” using visual supports. Increase independence by using visual cues on schedule e.g. “put on shoes” to prepare for walk.
  • Setting table: Continue working on setting multiple places at the table in the kitchen or dining room.
  • Laundry: Leelo has mastered putting clothes in correct drawers. Continue working on sorting and folding clothes.
  • Make a snack: continue working with Leelo to make a simple snack, such as sandwich or apple.
  • Food Tolerance: Leelo is beginning to request apples spontaneously when he is hungry. Continue working on newly introduced food (orange).
  • Toileting: continue work to increase Leo’s independent initiations, reduce accidents.
BEHAVIOR:
  • Getting attention: Leelo has mastered calling people and/or tapping them to get their attention.
  • Next steps: Leelo should learn to give a play idea or direction following getting the person’s attention.
  • Help: continue work on requesting help; introduce text prompt (e.g. yellow card with word “help” on it);
  • Wait: continue work on waiting, using text prompt;
  • Taking/requesting break: continue; teach Leelo how to take a break by leaving a less-preferred activity/area, doing something relaxing, and then returning to the area/activity.
LEISURE
  • Computer: Continue new games; continue keyboarding
  • Reading: read stories with Leelo; do reading-related puzzle (e.g. matching word to picture, putting letters together to spell sight words);
  • Games: continue learning new table games; begin playing with sister at table;
  • Gross motor activities and exercise: swim, trampoline, walk/hike, bike, other.
  • Craft or project: Continue working with Leelo on a multiple step (e.g. cut and paste) art or science project; Use visual cues and a finished product along with verbal directions
COMMUNICATION AND ATTENTION [if you know Leelo IRL feel free to jump in and reinforce]
  • Leelo is fluent at requesting, giving directions related to tangible things he wants; he occasionally comments to others about the current activity; his articulation and eye contact are inconsistent
  • Continue to require eye contact and clear articulation, and only reinforce those communications.
  • NLP: continue 5 words; emphasize giving play ideas (see above in behavior- attention);
  • Talking in past tense about day at school: continue working with Leelo, using school day folder with photos. Increase the variety of questions Leelo is answering (e.g. what did you do, who did you play/work with, what did you eat). Begin teaching Leelo to ask a reciprocal question following his answer.
  • Asking and answering social questions: continue. Have Leelo practice with family, others.
  • Taking conversation turns: work with Leelo to increase the length of his conversations from 1 turn each to 2 turns each. Include social and reciprocal questions and comments.

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3.02.2009

New Can I Sit With You? Story: Kindergarten Lessons

About a MEAN MEAN Kindergarten teacher. And a principal who keeps a paddle with nails in his office! Kindergarten Lessons is from our beloved Gwendomama:

http://www.canisitwithyou.org/?p=352

And, locals, don't forget about our upcoming reading at the Redwood City main library.

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