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?

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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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2.24.2009

My Poor Assless Boy

Leelo gained a lot of weight during his Abilify horrorshow phase: almost ten pounds in two months. In the two months since he switched to Risperdol, his weight has drifted halfway back towards its pre-drug-siege status.

But he still can't pull his pants up properly. He is an assless boy like his assless grandfather and assless mother, in stark contrast to his bootyful dad and big sister. When you cap that butt with a great big belly and compound it with questionable fine motor skills, not even elastic-waisted pants can save the day.

I know this because I thought the issue was waist size. So I bought him bigger pants: we jumped from husky sevens to husky eights. Which are indeed much easier for him to pull up and on, but spend most of the day inching towards his knees. He can't wear them to school. He can't wear them anywhere at all unless an adult is with him, because he -- like his assless grandfather -- is incapable of sensing when several inches of crack greet the world.

We got my dad to wear suspenders, but I don't think that's going to work for tactile-aversive Leelo. I guess we just need to keep helping him deflate that belly, and prompting him to pull up his pants.

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2.17.2009

Izzy Howser

Torn straight from Twitter and Facebook, with a nod to e. for the title:

My 10-year-old just gave me a detailed explanation of the difference b/t a colostomy, an ileostomy, & an ileoanalanastamosis (sp?). OK then.

She is just generally interested in anatomy and medical conditions. We got into this discussion via another discussion of why cancer can be fatal, e.g., cancer cells outcrowd the normally functioning cells in an organ and prevent it from functioning; her example was a colon blockage, I said that one could just get a colonostomy, she then learned me about the various large intestine surgical scenarios (and expressed disbelief when I didn't know where my sigmoid colon was). Right now she is telling me about infant blood transfusions to treat Rhesus disease (i.e., Rh incompatibility).

On Saturday night Jennyalice & crew came for dinner and stayed for a family sleepover. We four adults tried our best to stump Iz on the symptoms for various medical conditions; it took about an hour and Sjogren's Syndrome to trip her.

She is having big med school dreams at the moment, naturally. I don't have the heart to tell her how much sucky foundation learning, cut-throat peer competition, and intern/residency sleep loss is involved. I'll let her think it's all pure coolness and knowledge-inhaling, for now.

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2.13.2009

It's a Match!

Leo Matching Icons Aquarium
This is the draft version of an icon matching activity I'm making for Leelo, in which he can match pictures to the picture and word, or just word to word. I figured using one of his favorite places in the entire world, the Monterey Bay Aquarium, would be a motivator.

I would enjoy hearing from other people who make their own materials as to how you've fine-tuned your sight-reading and matching activities, and/or other approaches you have used.

Happy Valentine's Day, Interweb. Leelo loves you.

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2.09.2009

Come to Can I Sit With You? Live!, Wed. March 11 in Redwood City

Parents, children, or anyone who has ever been either one of those; fans of social skills development, special needs advocacy and/or special education fundraising; or anyone who simply enjoys a good storytelling session:

Come join editors Shannon Des Roches Rosa and Jennifer Byde Myers as we talk about the mission of the Can I Sit With You? Project, then laugh and squirm through live story readings by four of our most popular authors.

The Can I Sit With You? Project's frequently hilarious and often heartbreaking stories will be appropriate for anyone who has ever struggled with awkward social scenarios at school -- especially so for currently curious, concerned, or socially cornered children.

Wednesday, March 11, 2009, 7:00 PM
Redwood City Main Library, Fireplace Room
1044 Middlefield Road, Redwood City, CA 94063

Featured Readers:
Mike Adamick, The Weirdest Kid in the World
Amanda Jones, The Cure of Nowhere
Sarah Dopp, Will You Go Out With Me?
Judy McCrary Koeppen, Men-Stru-a-Tion


Copies of Can I Sit With You Too?, our second story collection, will be available for purchase (and signing).

Remember, all proceeds from The Can I Sit With You? Project (www.canisitwithyou.org) fund SEPTAR, the Special Education PTA of the Redwood City School District.

Thank you for your support.

Parents: please review the featured stories (linked above) if you have concerns about subject matter.

We'd really love to see you all there!

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Direct page link to the information above, for copious forwarding, Facebook Status updating, or Tweeting:

http://www.canisitwithyou.org/?p=345

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2.06.2009

Attitudes Under the Avalanche

Not sure when I'll dig out from under the avalanche that was the past few months, in terms of getting anything at all done ever including the occasional post. Though I have just finished all the laundry from our recent week-long barf-and-poop family symphony; there is that. (Seymour alone escaped illness, if not house-arrest drudgery.) So I'm going to send you elsewhere:

I only now watched Emily's remarkable video about autism parenting, attitudes, and advocacy:


This week's Can I Sit With You? story is quite a raucous one: high school shop, boys, bullying, and defensive urination techniques. Plus lots of swearing!
http://www.canisitwithyou.org/?p=339

We have to let love rule! (But don't forget to sign the petition.)

"Fidelity": Don't Divorce... from Courage Campaign on Vimeo.

We had lice scare a few weeks ago, so I plucked the kids out of school for the day and headed to the Monterey Bay Aquarium. **Just me and my three kids**. We had a lovely outing. This should give you some sense of just how fucking awesome Risperdol has been for Leelo, so far.
Leo Spends Half the Time Looking Out at the Ocean

Have a good weekend, Blogosphere.

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