The Autism Rights Movement

New York Magazine recently published a lengthy article on the Autism Rights movement. I've been chewing on it ever since.

And I have come to the conclusion that I want my son to be happy, and I want other people to recognize his rights and respect him as a person. That is where all my efforts go.

Normally I would write more, but what combat energy reserves I have left today will go towards keeping Leelo from harassing his little sister.

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Leelo's Sleep Pattern: It's Normal -- for Him

The autism sleep researcher came by yesterday afternoon to let us know the results of the first leg of Leelo's study.

The good news: Our boy does get REM sleep, and he does sleep very deeply once he is asleep.

The bad news: He fits one of two typical autism sleep patterns, in that he just doesn't need as much sleep as his typical peers.

We are lucky, in that it could be worse. He could have been in the second typical autism sleep pattern group, in which the kids are active all night long. So, THANK YOU CHRISTIAN GOD WHO SMILES UPON US WITH SUCH BRILLIANCE.

The researcher does think we can address the two problem areas of Leelo's bedtime routine, which are:
  1. Taking up to an hour to go to bed and
  2. Waking up with sun
For the early waking, she suggested blackout drapes. Not sure that would work, as his sleep patterns were the same when he slept in a dungeon rather than a lightbox, but there's no harm in trying.

As for his nighttime bed routine, she suggested that we make minor modifications to the current routine. As of now it is:

  • Dinner
  • Quiet non-computer play, books, or video
  • Bath
  • Computer time while sisters get bathed
  • Bedtime books
  • To bed
  • (30 - 60 minutes of jack-in-the-boxing)
  • Asleep
She suggested that we apply a picture schedule to his bedtime routine, and swap the girls' bath time with Leelo's so that Leelo's computer time, which she says is extremely stimulating, can happen before his nice relaxing bath and quiet bedtime books. Makes sense.

We can pat ourselves on the back a little bit. She said we had a good nighttime routine in place, and a relatively consistent bedtime. Apparently she frequently deals with a bit more bedtime chaos.

And there was a coda of amusement: She arrived at 5 PM, after I had had one of the longest days ever of errands and Leelo hating being in the car and Iz reminding me that she'd switched her Aikido practice to Wednesdays plus Therapist R's being sick and not there for her usual 4 - 5:30 shift. I was beyond burnt when the researcher appeared.

We talked through the every-two-minutes and from-three-directions interruptions fairly well, I think. But Leelo was not terribly interested in putting his clothes back on after a toilet trip, and I was not all that concerned about it, instead focusing on trying to help the researcher work through her task list. But apparently it concerned the researcher, as she took pains to let me know that my son's naked butt didn't bother her. Note to the world: If something truly doesn't cause you worry, then don't mention it unless your host does. I write this while smirking, not frowning.

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Back Away From the Plastic Water Bottle

A snarky little kick in the brain from Seymour & Co. regarding the wastefulness of plastic water bottles:

Please do what you can to make this video go viral. The ubiquity of plastic water bottles tends to make us forget that they are an environmentalist's nightmare.

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Pigs Wouldn't Be This Happy

When I was eleven years old and daydreaming about a little girl I would name Khrystell Adelle and a little boy I would name Eden Something because boy names aren't as interesting, I never once anticipated the joy a child's successful bowel movements could bring.

Today I thought I had misplaced Mali, only to find she'd put herself on the toilet to have a poop ("A big one, Mama! And lots of little ones, too!"). Today Leelo interrupted a bout of trampoline ecstasy to announce "Poo poo!" and haul bare-assed past several of Iz's friends to place his entire load entirely within the bowl. Today I allowed myself to consider that my daydreams about a Diaper Genie-Free household just may come true.

Today, I am very grateful that Iz's friends are so blase about Leelo's quirks.


I am also so very amused by Mali, who at age three and a half (as of yesterday) sulks and stomps out of the room if you tease her -- sometimes leaving slammed doors in her wake. Who spontaneously breaks out "Somewhere Over the Rainbow" in its entirety and in a key not of this earth, without any of us having taught it to her. Who only wants to wear "beautiful dresses" or skirts, and comes down the stairs every morning with a full outfit in hand, color-coordinated down to the shoes and underwear. Who, upon being told, "You can't always get what you want," screams back, "But I do! I do always get what I want!" Who tries so hard, every day, to do nice things for her brother, even though he terrifies her.

Sometimes I want to put her in a cage and suspend her from the balcony, but mostly I am delighted that she's here to keep us all entertained.

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Take Action for Alex Barton

Liz Ditz sent me the following post from the Autistic Self-Advocacy Network, regarding how we can take action and let Alex Barton's school district know that his teacher and classmates' behavior will not be tolerated:


Here is a quote from the post:
"We need to band together to prevent future such abuses from occurring, to ensure that this teacher is properly disciplined and to encourage this school to adopt both a strong bullying prevention policy and training on respect for all forms of diversity aimed at both teachers and students. As such, we've provided contact information below for you to write to communicate your outrage. Please be polite yet firm in your comments, pointing out the unacceptability of such actions when aimed at any student, as well as the need for this school to adopt policies to prevent this from happening in the future. This is an opportunity to drive home the message that we will not stand by while one of our own is abused. We ask that you please cc: info@autisticadvocacy.org in your e-mails to the school district so we can keep track of the strength and sources of this response. Remember: abusive messages hurt our cause - please be respectful in your comments."
And, as I wrote before, we parents need to be pro-active in cultivating the kinds of inclusive attitudes so sorely lacking in Alex Barton's classroom. Check out Paula Kluth for more ideas on fostering and maintaining inclusive attitudes in our schools.

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Can I Sit With You?: New Story, and Radio Story Too

This week's Can I Sit With You? Story is Ella Enchanted, about a twelve-year-old pubescent girl surrounded by horrible boys who cop feels and then demand that she not tell anybody. This was one of the harder pieces for me to read, and will certainly have me talking to my nine-year-old daughter about not letting anyone bully her into silence.

Also, Jennyalice let me know that the Can I Sit With You? Annex Theatre show story aired, on Seattle's KPLU. Not all the authors who read were featured, but still, very exciting. Go have a listen.

If you didn't read my entry on Alex Barton, the pre-diagnosis Aspie kindergartener who was "Voted Out" by his classmates because it was buried by my Lolcatzing, please do. I like to think that Alex Barton's ostracization wouldn't have happened if his classmates' parents kept up with the Can I Sit With You? project.

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Memorial Day

What do you tell your children about the reasons we observe Memorial Day in the United States?

I'm going to have Iz read the Youth Noise Memorial Day Page when she wakes up today. I will ask her to memorize the following quote:
"When we say 'war is over if we want it,' we mean that if everyone demanded peace instead of another TV set, we'd have peace." (John Lennon)
And I will tell her how lucky I felt when her uncle Chet came back from Bosnia, and then from Afghanistan.

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Okay Go Vote 4 My Lolz Oh Paleeeze!

funny pictures
moar funny pictures

OH HAI Sundae morning!

Have piteez on the lolvirgin. It's mah first time! Go vote 4 dis picture!

(That is our dum cat Shia shreddin' ma screen.)

Catption by DivaLea b/c I are stoopid to fink of one.

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Why Inclusion Is Critical: Kindergarteners Vote Out Special NeedsClassmate

If you don't yet have on your angry hat, you might want to go get it: A kindergarten teacher in Florida allowed her students to "Vote Out" their about-to-be-diagnosed autistic classmate, Alex Barton. WTF doesn't even cover it: http://www.tcpalm.com/news/2008/may/24/30gtteacher-lets-students-vote-out-classmate-5/
This is exactly why we parents of special needs children need to advocate for inclusive attitudes in our schools. Inclusion considers that all students are full members of the school community and are entitled to the opportunities and responsibilities that are available to all students in the school. No one gets to vote ANYONE out.

Inclusion is not always appropriate for all children; my own son attends a segregated special ed school because his needs cannot be met any other way. But when special ed students attend a regular school, it is critical to demonstrate that every last student is a full member of the campus community; otherwise, the special ed kids get segregated, and discriminated against. Starting as young as age five, the age of Alex Barton's classmates.

A good start towards fostering inclusive attitudes is a fun project like SEPTAR’s Drawn Together, in which special needs kids and their typical classmates collaborated on collages and paintings. I did not work on Drawn Together, but if you want more information on how to start something like it at your own school, I can put you in contact with our resident inclusion/art geniuses.
A painting from the Drawn Together project

Inclusive attitudes. They are critical, and unless they are actively cultivated, our children's peers will have the same attitudes as the kids in Alex Barton's classroom, and they will carry them through to adulthood.

(Alex Barton info via LeftBrain/RightBrain via Whitterer on Autism.)


The Loveliest Family Day

I did not have high hopes for this Saturday past. Iz needed to get up too early for a Girl Scout campout, and our usual three hours of Leelo help was not to be, as Babysitter A was celebrating her birthday on some island in the torrid zone. No sleeping in, no help with Leelo. No reason for expecting much, if you're a grump like me.

Turns out low expectations pay off: we ended up having one of the loveliest family days in memory. (I am not sure if it was because of or despite our oldest child's absence.)

Mali & Leelo at the Conservatory of Flowers
Leelo and Mali at the Conservatory of Flowers

We dropped Iz off with her troop then headed for the local cafe, which is the same place we have breakfast every Saturday, Pinky. But thanks to our new approach of bringing activities like dot-to-dots and matching cards for Leelo, our boy was happy and calm for the whole meal, and was satisfied with one croissant instead of two.

He also went to a new level with his food tolerance by not just kissing the orange pieces the cafe so thoughtfully provides on each plate, but by placing it inside his mouth. He didn't eat any orange, but still, progress. Any progress with tolerance is good. (Supervisor M thinks that we should have him eating those damn oranges within two weeks, and then we can start mixing in something new; I am thinking chicken nuggets so he can get some concentrated protein missing from his diet.)

Once breakfast wound down the kids wound up, and we needed to leave. I proposed to Seymour that we not go home -- we had the whole day open, so why not do what I've heard some families do: be spontaneous! He looked momentarily confused: What is this 'spontaneous'? but then agreed, why not.

We decided to hit Golden Gate park to see what Leelo and Mali thought of Strybing Arboretum, because what is more family-friendly than a huge rambling fenced trail-ridden series of gardens with no entrance fee?

The kids loved it, as did we. They enjoyed following the many meandering paths through all of the different biomes and plant varieties. Seymour and I enjoyed geeking out over all the various varietals. (I am particularly fond of the giant yucca in the succulents garden, and the meadows in the California garden.) Leelo especially loved sitting on the many benches, because he could make a routine out of visiting them. Neither child tried to jump in the ponds or fountains, and Leelo even threw pieces of his beloved croissant to a pond turtle before wolfing down the rest himself! (Must tell Supervisor M: feeding animals is an incredibly strong reinforcer for Leelo.)

We left the Arboretum and followed the beat of live Afro-Cuban music to the de Young Museum, where Leelo and Mali went cuckoo over the Garden of Enchantment's Fog Bog, enjoyed but did not succeed in jumping into the lily pond, and clambered happily all over Andy Goldsworthy's Fautline installation. Unfortunately, the de Young was a pricey risk for kids who might end up screaming and having to leave after five minutes, so we didn't go inside.

Seymour spent much of his de Young time looking longingly at the living roof of Cal Academy across the way, and wanting to clone himself so that he could work there and at his current post.

But then he remembered the amazingness of the job he already has, and the very cool orchid segment his team filmed did at the Conservatory of Flowers last year. Off we trotted to the Conservatory's corner of the park

There were Morris Dancers outside The Conservatory! Music-loving Leelo was so mesmerized that he sat still for several numbers, and asked for "More Music!" after each one.

The Conservatory was full of treats both floral and faunal. The kids enjoyed its maze-like pathways, and Leelo again got to stim-sit on many benches. Seymour and got to have a second wave of botanical geeking out, mostly over the physical diversity of the orchids and the size of the pitcher plants. And then we found the bbutterfly exhibit! It was a perfect last place to take two children who had spent a good long time walking in the sun. The Conservatory had a nominal entrance fee, especially for kids (Leelo was $1.50, Mali was free).

All that walking meant that we needed to visit the Outer Richmond for the next installment of Boba Challenge. Category: Earl Grey Milk Tea, large pearls. Result: Tapioca Express San Mateo smacked down Quickly Outer Richmond!

A long day. A long, wonderful day.

A day in which we had many minor miracles, not the least of which was our two on-the-cusp potty trainers staying clean and dry. Thanks to the strategically placed toilets throughout the park, all bodily functions were directed into the proper, flushable receptacles! Leelo even peed in a urinal! (Neither Seymour nor I commented on this until we were in the car on the way home, lest we unleach a jinx).

A final "Can you believe it?" happened on the way home. Leelo did some spontaneous imaginative play with a toy car, making "vrroom vroom" sounds and yelling "You're flying!" as he piloted the car through the air. I think he really enjoyed our day.


The Arboretum was such a splendid experience that I think we local special needs parents need to organize a Saturday or Sunday brunch there. The path access means we can include our kids in wheelchairs, the fenced perimeter means that our bolters should be safe, the free means that everyone can get in. My only concerns are pond- or fountain jumpers and families with multiple bolters, but I think that with enough advance notice we can provide babysitters to ensure those children's safety. We can also meet in the California or Redwood Forest corners, away from the water and in the shade.

We could have an outing with all of our children, and all of our families. Imagine.

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Autism Versus Church

When I first read about Adam Race, the thirteen-year-old autistic boy who was banned from Mass at his parish, I was irate. Then I got broody as I sat in my own church the following day, without my own son. Then, as usual, life overwhelmed and I did not write the post I'd spent the church service mentally composing. Then TinaMc sent me a different version of Adam's story, and the irate and broody redescended.

We haven't taken Leelo to church for two years. I didn't see the point: he didn't enjoy sitting for services, Sunday School with his peers was not feasible, and even though the church offered a volunteer to mind him, Leelo has grown so strong and unpredictable that I only trust his supervision to friends and professionals.

Instead of staying home, Seymour and I decided to alternate church weeks: one of us goes to services with the girls, the other takes Leelo to haul ass ride his tricycle on bayside trails. Our family has broken into parts every Sunday for two years. I hate it. If I didn't require so much reminding about How to Be Good, or adore our church's religious education program, I would stop going.

So, part of me understands Adam's family's desire to attend services with their son. They are a family, damn it, and families do things together. I also applaud their activist perspective: Our autistic children are part of the community, we are proud of them, and we're not leaving them at home if we can find a way to make an outing work. We're here, we're quirky, get used to it. [I am so making that my new tagline.]

But then another part of me wonders if Adam wanted to be at services. I don't know him or his parents. But I am constantly fighting with myself about whether to expose Leelo to activities that he will find unpleasant for the sake of increasing his tolerance. Does it benefit him, or us? Which is fair?

I can't ask Leelo; I can only observe his behavior. Behavior that Seymour and I can interpret, but which, like Adam's, is alien to many people. And perhaps Adam is like Leelo, who wants to go out with his family, but who also needs accommodations so that his sensory triggers and stressors don't overwhelm him. Leelo loves to hum and bounce in his seat and chew on straws. Adam finds it comforting to have his wrists bound with soft fleece strips, or have his parents sit on him. What person outside the special needs world wouldn't find such behaviors odd?

But odd behaviors are not necessarily disruptive or dangerous, so this is where participating outsiders in special needs scenarios need to put on their very best thinking and empathy hats. Is the behavior truly untenable? Or does it just make you uncomfortable because you don't understand it?

Adam's behavior certainly doesn't conform to the church's expectations. And even though the church says it has attempted to make accommodations, those accommodations were not described, and I have to wonder if the family was consulted as to their scope.

For all the behavioral problems the article cited, I wonder about what no one outside the family probably saw: The herculean efforts by Adam and his family, everyone doing whatever it took to stay in that pew, week after week and month after month. They get my applause.

I feel for the Race family, and Adam. I look at Adam's picture, past the cuts on his face, and see a beautiful boy. A very big, unpredictable boy, like mine but fast-forwarded six years. A boy who sometimes does crazy things that no one could have predicted. A boy whose family is doing their very best. If they do not always succeed, that just means they need more support. They certainly shouldn't be further isolated by punitive legal actions.

We have come up with a number of techniques to help Leelo deal with scenarios he would not otherwise tolerate. And maybe it is time to see if we can use those techniques to help him sit through services. It might be slightly distracting to the other congregants; he'll be stimming with a straw, and I will be occasionally prompting him on mastered activities such as lacing cards, puzzles, and drawing on a magnadoodle. But Unitarians would rather die than openly discriminate. And it would feel wonderful to attend services with my husband and entire family.

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The Iceberg Blog

That's really what this site's title should be. I have ten draft posts in my mental or digital queue for every one that actually surfaces here.

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Screaming and Sobbing and Throwing Things

The article below describes children who, like Leelo, have seizure or "blanking out" spells that were considered too mild for treatment. These children improved dramatically and phenomenally upon being treated with seizure meds:


Leelo had an EEG done when he was three. The neurologist (not our current one) said that "the seizure activity is significant enough that if your son was not autistic, we'd put him on seizure meds."

Well, why fucking not?

I have always had a bad feeling about the possibility of constant seizures scrambling my son's brain. Given Leelo's tendency to space and blank and his atypical autism traits, I have always wondered if it was constant seizure brain fog preventing him from learning and responding to stimuli as he otherwise might.

Leelo is scheduled for another EEG on 6/2, as ordered by his current neurologist. Then five days ago we received a letter informing us that the medical director had reviewed our request and denied it because the EEG was not "medically necessary to manage our son's symptoms."

I talked to the neurologist yesterday, and she told me to absolutely not cancel the EEG. But now I'm wondering if, since we already have the initial EEG, perhaps we should just go ahead and try seizure meds anyhow? The EEG is going to be a complete fucking ordeal for us, the technician, and especially for Leelo, and perhaps we should just skip it and go to the next steps.

Don't give me any crap about magical "cures" or wishing on stars. I know seizure treatment might not have any effect. But I sure as fuck am going to investigate the possiblities as fully as I can.

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Burn Those Bras Anyhow!

Iz had a great time at her regional girl scout campout this past weekend. She bitched and moaned about getting ready, but ultimately packed her own gear and clothing, and made her own damn bag lunch.

The theme of the camp was the Groovy '60s, so she wore her bedazzled tie-dye camouflage peace sign shirt (mixed signals, anyone?).

When she got to camp, she and her troop crafted and crafted. And crafted. When they were done, all the campers went into a frenzy of craftlet swapping. (Anyone who wants a bag of painstakingly twisted, glued, tied, and painted testaments to the half-fledged creative exuberance of grade school girls, do contact me.)

Then the leaders staged a bra-burning! They had paper bras, and threw them in the campfire. How cool is that, giving those girls a taste of righteous feminism?

Iz's approach to the bra-burning, however, was less than enthusiastic: "But those women didn't actually burn their bras at the 1968 Miss America pageant! I mean, they were going to, but the police warned them not to because they were standing on a wooden boardwalk! People only think they burned their bras, but they didn't!"

Facts. They get in the way of context for her, just like they do for her mom. Sigh.

I'm proud of her for knowing about this chunk of feminist history (thanks once more, Book of General Ignorance), but wish she could have gotten into the groove of the faux-bra-burning despite the historical inaccuracy. Wish she could have turned it around and declared, "Now we're going to do what they couldn't!" But she just needs more practice in thinking past the red flags of factual errors and back into context.

She said that one of her leaders also told this joke, which she thought was naughty (I told her it was so not) and which made me cackle:

Q: What did the bra say to the hat?
A: "You go on ahead, I'll give these two a lift."

I wasn't so keen on Iz being a girl scout, but I do like her troop.

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New Story on Can I Sit With You?

Did your parents ever embarrass you in front of your friends? Past the cringing point? In close quarters? With no chance of escape?

See what you think of Dad Drives by Charles Ries.

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This Sunday May 25th: Inclusive Art Show in Redwood City

Bay Area Locals:

Please come to the art show below. It is an amazing example of how a few dedicated parents can successfully bring special needs and typical kids together. The parents who spearheaded the Drawn Together program and grant will be present, so please let me know if you'd like to meet them (or email them) and learn how to start a similar program in your own school district or area.

Drawn Together is a unique collection of art created by special education and general education students at five Redwood City schools. The students created art projects together and learned how diversity results in a stronger, more beautiful world.

Developed by SEPTAR, Drawn Together is part of a long-term strategy to build inclusive communities within our school district. The show will remain on display at the library through the end of June, 2008.

Please come!

Event Details
Redwood City Public Library
1044 Middlefield Road, Redwood City
Sunday, May 25, 2008
Noon to 1 pm

We would like to thank the Redwood City School District; the participating teachers, students, and administrators of Henry Ford, Hoover, Roosevelt, Selby Lane, and Hoover Schools; and the California State PTA whose funding made this project possible.

SEPTAR brings families and educators together to meet the special education needs of children in Redwood City. For more information, please visit: www.septar.org.

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CA Supreme Court and Gay Marriage: Do Worry, But Be Happy for Now

(Just left a variation on this comment on Susan's blog but as always am a huge fan of reusing and recycling.)

My church had a post-service celebration today, in which the entire congregation celebrated the CA Supreme Court's decision to legalize gay marriage by having all the same-sex couples cut and serve wedding cake to everyone else. Much joy, few dry eyes.

We also had several clear-headed members speak up about how important it is to keep fighting while we celebrate, because if the haters have their way, November will bring an opportunity for voters to amend the state constitution and overturn the Supreme Court's decision.

What to do? One volley: send these video segments from If These Walls Could Talk 2 to everyone you know, anyone who might be swayed to do the right thing. Vanessa Redgrave broke my heart as the elder lesbian who is barred from her dying lover's hospital bedside (she wasn't family), and then turned out of the house in which she lived and loved because she had no legal right to it.

Here are the five segments' URLs:

Segment 1:
Segment 2:
Segment 3:
Segment 4:
Segment 5:

More information at Human Rights Campaign.

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Lite Brite Leelo

Here he is showing of his latest creation, and obviously being very proud of himself.

Leelo with his Lite Brite Creation

Many thanks to the ever-thoughtful Jersey Girl, who got us this toy six years ago. We still use it All The Time.

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Iz's Dream Come True

Some of you may remember Iz's "I have a dream" essay for MLK Jr. Day two years ago:

Iz's Position on Gay Marriage

Can't wait until she wakes up and I get to tell her that the California Supreme Court has her back.

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To Parents of HFA (High-Functioning Autistic) Kids

Please stop signing your posts and emails:

"Name, parent of Name (age, HFA)"

That acronym, and the use of the term "High-Functioning Autistic" outside of a clinical or symptoms discussion and as a signature to emails inside a parenting forum is insulting and offensive to those of us whose autistic children don't get to use that H.

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Not Ready

Within the past two weeks, Mali has decided that she is now potty-trained, needs to sleep in her own bed, and doesn't need anyone to tell her how to pronounce words.

The potty training I'm down with, and sweet baby Jesus who wouldn't be (she's usually even dry in her overnight pullup in the AM). But even though I've wanted her out of my bed for two years, I didn't get a warning. Suddenly she's in her own big girl bed in the room she shares with Iz, and she's not looking back. Suddenly she's playing with Leelo's Starfall.com phonics program and reading the words before the program pronounces them for her. Suddenly I don't get to read her books without her stopping to ask or tell me what every fourth word is.

Suddenly she's really not a baby girl anymore. I just wasn't ready for that.

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Mali Meets the Urban Chickens

Thanks to the gracious facilitation of Left Coast Mom, Mali and I were introduced to the Urban Chickens yesterday:

Mali Meets the Urban Chickens!

We even got to bring home some eggs! They were cooked up immediately: rice and eggs for the kids; rice, eggs, flaming swamp cabbage (okay, spinach), and kimchee for the not-kids. Sooooo good. Much better than your standard store-bought eggs.

Before Leelo was officially diagnosed as Leelo and Mali made her appearance, we used to take an annual family trip to a farm near Sebastopol. The farm's owners had beautiful green-egg laying chickens, and we ate fresh eggs every day. I hadn't realized until now how I missed those eggs and those simpler days (as simple as any time away from home can be with both an infant and a toddler). Chowing down on the Urban Chicken eggses brought up some lovely sense memories.

Another benefit: Mali has heretofore refused to eat eggs. Scrambled, coddled, tamago'd, absolutely not. But when she found out that it was those chickens right there who laid her eggs and that she could eat those eggs? NOM NOM NOM. One more thing to thank the Urban Chickens for.

Mali Eats Her Urban Chickens Eggies Right Up!

I will go to bed tonight dreaming of my own coop. Braaak braak, braaaak.

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When the Kidz Karaoke Gets Elusive

Leelo loves his music. He gets it. He's always humming a tune, or slapping out a good beat. He seems to have perfect pitch. When his fine motor skills get a bit better, we plan to have him learn an instrument. For now, though, it's a treat to be around him when he breaks out in one of his spontaneous songs (right now his favorite ditty is "Sweet Potatoes" from Music Together, many thanks to Gwendomama for stocking us up).

Izzy's got music skills, too. Even though she doesn't grok the music like her brother does, she is a decent piano player and is not tone deaf. But she is also not what I would call a gifted singer, and I honestly have no idea how her and Violet's singing act qualified them for their school talent show. Perhaps they have good stage presence?

Further complicating matters is the act: A Hannah Montana (don't even start with me) song, True Friend, that has no commercial karaoke version. Gaaaah. Now they've been told they cannot be in the show without the karaoke version.

Does anyone know any good, cheap (or free) Mac software for converting regular songs to karaoke tunes? Violet's family is not available to investigate just now. HALP!

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New Story on Can I Sit With You?

The new story is called "Shoes Can Buy Me Love," about a new kid who literally had to do just that -- buy the right shoes -- before the other kids would play with him.

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New and, Well, New

I have brought this blog into the brave new world of 2006.

Bear with me while I fiddle around, finally add an About page, and wonder how the hell I'm supposed to integrate thousands and thousands of exported Haloscan comments into Blogger's own commenting system.


Happy Mother's Day

Happy Mother's Day

To each and every over-stressed mother out there, whatever the nature of and numbers in your herd may be. Today I want you to:

  1. Do something for yourself
  2. Check one big item off your to-do list
  3. Cut one other item loose, and be done with it
Here are my own choices and recommendations:

I plan to ask Seymour to take Leelo and Mali this afternoon while I watch Singin' in the Rain with Iz. I will not feel guilty, because spending Sunday afternoons watching musicals with my family is a parenting dream that doesn't usually get to come true. Leelo dislikes musicals and needs constant supervision, and the only tube-viewing Mali and I agree on is Kim Possible. Lazy Sunday afternoon movie-watching does not happen, and Iz's musicals education is years behind where it should be. (Note: Must remember to buy kettle corn.)

If you don't have the resources to do anything for yourself, be creative. Do whatever it takes to get some time for yourself. Tell -- or imply to -- your partner that you're constipated or otherwise bowel-compromised, and take off to the bathroom for thirty minutes with a good book. In the middle of the day. Whatever it takes.

If you don't have a partner, then today is the day you should explore community and online opportunities for connecting with other parents. Find out if there is a local parenting or mother's group. Browse Yahoo! groups for organizations that appeal to you. This can be a real first step towards making friends who will get you, who will support you, and whom you can support in return.

I am going to a 9 AM yoga class today. And I will continue to attend. Neglecting my physical health is idiotic. I need to be healthier and stronger in the future, as Leelo will only get bigger and stronger.

If you're like me, your to-do list is probably yards long and possibly too overwhelming to write down. For today, pick one important task that you can finish or make significant progress on before you go to sleep. Then maybe tomorrow you can tackle another. And so on and so on. Sometimes, seeing that you can complete that first task is the catalyst you need.

For some reason, I was asked to be on a grant committee at Iz's school. It's been months since that request, and the committee is finally starting to materialize. However, I now realize that I am overcommitted. Tomorrow I will write to the grant committee and bow out. I will be polite, but frank, will apologize briefly, and will not look back.

Please, for today: figure out what you just shouldn't keep doing, holding onto, or promising. End it. Move on. If anyone tries to make you feel guilty, ignore them.

And have a happy Mother's Day.

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Smartypants Leelo and Mali

Smartypants Leelo and Mali

Today I gave Leelo a new dot-to-dot puzzle. Only six numbered dots to connect, but in a zig-zag rather than the circular pattern he'd previously done. I prompted him, "1 to 2...", thinking he might need encouragement through the whole puzzle, but he took off and completed it independently -- in the totally new and 100% correct pattern, because HE UNDERSTOOD THE SEQUENCE. Huge! I think he is starting to feel a bit better, more resident in his own skin.

A couple hours later Mali was sitting next to me and chattering for five minutes before I realized she was SOUNDING OUT WORDS and reading them. L-E-E-L-O, F-I-S-H. S-H-A-R-K. D-0-G, etc. SHEEIT! I called Seymour over as my witness, and wrote down D-A-D. Mali performed, "Duh-ah-duh ... Daaaad ... Dad!" Seymour then said, "Well, now, Miss Smartypants, why don't you try writing your brother's name?" And she did (!). So, it looks as though mostly neglected third kids still find ways to learn. Mali was certainly very pleased with herself.

Iz, meanwhile, has to choose an instrument for next year's fifth grade music program. I encouraged her to consider the clarinet (compact! She can swing or go orchestral!) but she is stuck on learning violin. (As though with our three cats we don't get enough caterwauling in this house.) But I am glad that she thought thought thought and decided to go with her instinct rather than cave to her mom. It's not as though she chose tuba, like her uncle Chet. (I still shudder to think of the Christmas family road trip to Canada with his tuba strapped to the roof of the car so he could practice over the break. Canadians, of course, are far too polite to confront their tuba-playing American cousins, no matter how out of tune.)

Seymour has an iTouch from work (because he needs to see how his site and its media perform in the iEnvironment) and is playing playing playing with it. WiFi, ooooooOOoooOOOooo. Best teeny interface I've seen so far.

I am more sleep-deprived than usual and it is tingeing my every thought with the grumps. I prefer being cheerful, so, to bed.

Leelo vs. His Giant Car Seat, Sleep, and Food Tolerance

Leelo vs. His Giant Car Seat, Sleep, and Food Tolerance

First of all: CISWY Live! in Redwood City: The Videos. Now you can see what you've missed.


Leelo got put in lockdown today. Car lockdown. Back in the Britax Husky, a five-point harness car seat that accommodates kids up to 120 lbs and is so large that, when installed in the back seat so that he cannot reach/hit his sisters, nothing else fits in that space that normally accommodates three kids. Sigh.

Using the Husky is quite inconvenient, from a logistical/me having to go into the way-back seat to buckle/unbuckle Leelo perspective, so I put off installing it until yesterday. Then Leelo decided to leap out of his regular seat belt seat while I was driving down a 35 MPH street in busy traffic, and started smacking Mali. I almost drove into oncoming traffic. The car seat got installed within the hour.

I thought Leelo would view the Husky as aversive, but apparently he considers it to be a throne. But hey, if he's happy, everyone's happy. I'll go with it.

We've started his sleep study. Every night for the next eight, Leelo will wear a watch-like device that monitors his motion while he sleeps. He had it on when he went to bed last night, but when I went to check on him at midnight (he hadn't pooped before going to bed, so I knew his pants held a late-night surprise), the device was off his wrist. He did not wake up while I changed and wiped him (praise be to you, oh Flying Spaghetti Monster) so I got the device back on his wrist, where it stayed until he woke up at 6 AM this morning.

He started his food tolerance program today, at school. The goal is to get him to eat more than the seven not-terribly-healthy food items he currently eats (whole wheat croissants, PB&J sandwiches, bananas, veggie booty, pancakes, graham crackers, and fruit smoothies), and is one of his nineteen IEP goals for the year. Supervisor M and his Occupational Therapist (OT) were both on hand to assist with the program launch.

Basically, they're using the same approach we use to get him to take his rice milk/vitamin concoction and straight cod liver oil in the morning: Do what is asked of you re: the food, get a reinforcer. The goal is to get him to successfully comply with the each step below (and be reinforced; we're using a bite of veggie booty) many times before moving to the next. Repeat until he eats.

1) Tolerate having the food on your plate without throwing it across the room
2) Touch the food
3) Pick up the food
4) Smell the food
5) Touch the food to your lips (or "kiss" the food)
6) Touch the food with your tongue
7) Take a bite of the food

We're starting with oranges. Since the taste of orange rinds is aversive, the OT recommended that we take those off. Supervisor M called me to let me know that apparently Leelo doesn't hate oranges (otherwise they would have been stuck on step 1 for a loooong time), and that as of this morning he'd already progressed to "kissing" the orange. Excellent.

I figure a kid who takes his cod liver oil straight and unflavored can be taught to tolerate almost anything, with enough patience and persuasion. I wish I had more patience and persuasion.

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Can I Sit With You? Redwood City Recap

Can I Sit With You? Redwood City Recap

Go to Can I Sit With You? for a recap of last night's Redwood City show. Video excerpts to come.

Also, we've received the audio from the CISWY Seattle show and will post it soon.

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Mali Bedhead

Mali Bedhead

Mali Bedhead

This cloud of tangles was eventually rearranged into three (NOT TWO, Momma, THREE) ponytails.

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Loopy Leelo

Loopy Leelo

Can I Sit With You? Live! is in Redwood City tonight. Come, damn it!


Today I'm not even sure I know who Leelo is. Maybe Sage can tell me, when I take him to speech therapy this afternoon.

There is something going on with Leelo's sensory systems, some kind of input/output jamming signal that our regular Leelo can't break through. He will not comply with any request, is having toilet accidents at school, and is having the shrieking for shrieking's sake and mad giggling fits that I haven't seen in a very, very, very long time and frankly never expected to see again.

Possibly his body is reacting to not having had cod liver oil for four days straight (we ran out), and getting more sugar (cookies and juice) than the usual no sugar. Sweets have historically made him koo-koo-kooky, but we hadn't seen this kind of reaction to the occasional juice box in a verrrrrry long time.

Part of me also worries that he might really be in pain, that his mad laughing fits are equivalent to an injured cat's purring. But I can't think about that too much. Just like I am not going to think about Mali's new, and understandable, habit of screaming in terror any time Leelo gets within five feet of her, once I finish writing this sentence. I will keep them separate.

I tried dosing Leelo with Motrin last night. His weight requires three teaspoons; his temperament made him refuse to take more than 1.5 before he grabbed the cup and poured it down the sink (with really good language, too: "Put it in the sink, Mom."). I guess we'll try the Sudafed tonight, instead.

We're going to start the sleep study tomorrow night. Part of me is excited to think that Leelo might get more help, might get more skills and tools to make one part of his life go more smoothly. I will pursue almost anything that might ground him, or help him feel comfortable, relaxed, and happy.

Though I have to admit I have slight reservations about the sleep study's surveys about Leelo's home life and my own mindset and approach to parenting. The surveys are lengthy and thorough. The researcher mentioned that it is not uncommon for parents of autistic children to be diagnosed with clinical depression after such forms have been completed and reviewed.

My concern: I don't have time to be depressed. I can't have a depression label. I would be too likely to use it as an excuse to step off the speeding freight train that is my life and responsibilities. And then who would take over? Seymour is doing more than his fair share as is. No, I am an adult with adult responsibilities that are overwhelming but certainly doable. Best to carry on and keep busy. And still fill out the forms honestly, sigh.


Good news: Iz and Violet got into their school talent show. This is good news because they organized, practiced, and auditioned completely independently, during school, and without the help of whatever being the opposite of a stage mom would make me. Icky news: They're singing a Hannah Montana song, which goes to show that while we parents can block our children's primary media feeds, we can't stop lame tweeny gloss pop from seeping into their lives if that's what they crave.

And in why not share everything news: Mali is starting to use the toilet independently. The switch in her brain flipped over this past weekend, and we've had both solid and liquid production but not a single accident since. Some children just need to wait until they're ready. (My mom pointed out, with a only slightly vindictive gleam in her eye, that I refused to toilet train before I was ready, too.)

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Leelo Update: Migraines, Sleep Study

Leelo Update: Migraines, Sleep Study

Before I rip into the latest with Leelo, I just want to remind everyone that Can I Sit With You? Live! is in Redwood City tomorrow night. Jennyalice and I are actually reading our stories this time. Please come, and bring your kids. But don't forget to make a reservation. Or introduce yourself.


Leelo and I saw Dr. M, his pediatrician this morning. Leelo wouldn't let the nurse take his axial (armpit) temperature, which means he's grumpy indeed. He did let her weigh him, though. He has hit 78 lbs which means a gain of three pounds in the last few weeks. Not good. I could hardly lift him onto the examining table, something that has never been a problem for me before.

The point of the exam was to see if he had any visible earaches or congestions/sinus/cold symptoms that might explain what seem to be intense symptoms of head pain from the past few weeks, especially the past few days.

Leelo had totally clear ears. He did not even have fluid buildup. His nose and throat were likewise clear and dry.

So, Dr. M thinks it is likely that Leelo has migraines, given his symptoms and my family history. She also said that he may be experiencing "auras" either from the migraines or the absence seizures.

Here is what she'd like us to do:

1) Try dosing him with Motrin. She emphasized the importance of giving him the correct dose, as many parents tend to underdose and that greatly reduces the drug's efficacy. She also emphasized the importance of treating migraine pain proactively rather than reactively.

2) Stop feeding him goldfish crackers. Cheese can be a migraine trigger. I will send in veggie booty and graham crackers (two things I hope he loves as much as goldfish crackers) for classroom snacks.

3) We can try putting him on Sudafed to see if that will relieve any sinus congestion she couldn't detect (but which she suspected from the way he was getting me to push on his head/sinuses while she and I were talking). We should know whether or not this is helping in three days.

4) If we like, we can also switch his seasonal allergy meds to Zyrtec. This can be used at the same time as the Sudafed. She said that Claritin is not working for a lot of people during this intense allergy season.

She was relieved to hear that we have already been talking with Dr. Cheyenne, Leo's pediatric neurologist, and that we have an EEG scheduled for June 2.


Also, I just met with a PhD student who is running a research study on autism & sleep disturbances, out of Stafnord (she did her undergrad at U.C. Davis, under one of the founders of the MIND Institute, and did her MA at Brown, including extensive work at their sleep lab). Leelo will be participating, starting this week.

This is a really incredible study. She is collecting data (from me doing extensive surveys, brief sleep diaries, setting up an IR camera recording during sleep, and training Leelo to wear a watch-like device to record electrical sleep pattens) to determine the environmental and physical causes behind any sleep disturbances. She with then identify any problematic factors we might have overlooked, and help us develop a sleep routine, including a picture schedule and a personalized bedtime story book.

The study takes approximately ten weeks, comprising one eight-day period of recording Leelo's sleep patterns, a period of family discussion/sleep training/new routine, and then another eight-day recording period to see if her modifications have been helpful.

She has room for a handful of additional lab rats; if anyone is interested contact me immediately as her window closes soon.

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BlogHer 08 Special Needs Parenting Panel: Kristina Chew, Jennifer Graf Groneberg, Vicki Forman, Susan Etlinger, and ... *me*.

Leo's Progress: The Good Stuff

Leelo's Progress: The Good Stuff

Although things have been rough for the past month, before then Leelo was having his best learning and behavior (and happiness) period to date. When Supervisor M called me to consult on details for the progress report below, she giggled and said she'd never had so much fun writing one of these reports. Enjoy the good long snapshot of happy Leelo before we were revisited by sad, pissed off Leelo from days of yore (who had two milestones today: pooping on the bus and hitting a classmate in the face; whom we're hoping to banish with Tylenol meltaways, comfortable undergarments, a working trampoline, and pool-friendly weather; and whom I both hope and hate to hope will be diagnosed with an ear or sinus infection tomorrow so we'll have some idea about why he's so miserable in his own skin).


Student: Leelo Rosenberg
Date of Report: 4/9/08
Supervisor M, MA EdS

In the past year, Leelo has experienced many changes in his instructional program, including a change of placement to a classroom at the Saint Matthews County School at Cielo Azul, an increase in the use of visual supports at home and at school, and a greater emphasis on directly teaching appropriate alternative behaviors to replace aggressive behavior. He is also spending a full day at school.

Leelo has made exceptional progress this year. As his aggressive behavior decreased and his behavior replacement skills developed, he has been able to tolerate more challenging instruction and demands. He currently enjoys a complex and comprehensive instructional program.

Leelo transitioned easily to Room 4 at Cielo Azul. Everyone who knows him will agree: Leelo loves school. The physical layout allows for the outdoor gross motor activity which Leelo so enjoys. The classroom is convenient for working on his functional and academic goals. In September 2008, Leelo quickly learned to follow his individual visual schedule. He currently scans the entire day (at least 15 activities) upon arrival. He consistently checks the schedule when given a name card, and when he doesn’t have a name card- he approaches staff and says “check schedule”. He is currently learning to read a text schedule by fading the pictures and enlarging the text. Leelo also uses a picture schedule at home during ABA therapy.

This year Leelo made progress in independent work. He now consistently does 5 consecutive activities, with 3 to 6 prompts, for up to 25 minutes at home and about 10 minutes at school. The activity trays or shelves are numbered, and he matches a number on his desk with the number on the activity tray or shelf. He can do a variety of activities independently, including puzzles, folder tasks, lacing, and some open-ended tasks like listening to headphones, and playing with trains or a toy piano. At home, he is able to do independent work in a variety of locations, by moving the trays to each location. His parents use the independent work trays when they are busy, and need Leelo to play by himself.

Leelo has also begun to tolerate small group experiences, and one-to-one instruction of new skills in a classroom environment. Previously, Leelo generally mastered new skills mostly in a one-to-one environment using discrete trial methodology at home. This year, Leelo is tolerating one-to-one instruction with a teacher in a noisy, busy class, and he is also participating in group circle time with up to 6 other children. For new skills, he continues to require one-to-one instruction, and to do best with 3 to 5 repetitions of a single skill at once. Contingent, tangible reinforcement is essential.

New skill instruction includes the Edmark sight-word reading program. Leelo has progressed steadily through the pre-reading section, and has now begun the sight-word discrimination or actual reading section of the program. In class, he is also working on identifying emotions, developing one-to-one correspondence, sorting and categorizing, and learning the functions of objects and senses. This year he also learned to set a table place using a placemat jig, and he currently sets the table for his entire class at snack time, with 3 to 6 prompts. Recently simple cooking activities and dish-washing were introduced.

At home and at school, Leelo has been working on his computer skills. With an adapted mouse, he can click and drag to complete simple actions on the screen. He currently uses the TeachTown program at home, to reinforce computer skills and some basic vocabulary skills. He also plays simple leisure games which emphasize mouse skills. Computer has become a preferred activity for Leelo.

As his school program capacity has grown, Leo’s home program has been modified to emphasize more functional, life, and social skills. Leelo has learned to put away his clothes in the correct drawers, and is currently learning to fold them. He continues working on learning to play games and do craft activities, sing songs with actions, and to further develop his language and social social skills. His home independent work includes many open-ended activities, which he can play with for up to 25 minutes.

This year, Leo’s parents worked hard with Leelo on bowel training, and he is now mostly independent at toileting and washing up afterwards. He currently wears underpants during the daytime, and pullsup to bed. He typically has infrequent accidents at school (less that once per week). At home, Leelo has bowel accidents about once a week. He generally had been staying dry for about three months, but recently has had one to two urine accidents during the day.

Leelo does not yet consistently initiate toilet use, but is scheduled trained and will always use the bathroom when given a bathroom card or when taken. At school he can withhold urine for about 2 hours. He occasionally independently initiates toilet use at home.

Critical to this progress has been Leelo’s improvement in behavior. Since his FAA (Functional Analysis Assessment, 3/26/07), Leo’s aggressive behavior (hitting himself and hitting others) at school has been reduced from an average of 8 episodes per hour (range 3 to 16) to 2 episodes per hour (range 0 to 5). Previous episodes at school often involved 5 or more hits to himself and/or others, plus an escalation in intensity. Current episodes are generally 1 to 3 hits, and his behavior does not escalate.

Appropriate Replacement Behaviors: Leelo has learned some key replacement and coping behaviors that address his needs to either escape from demands, get attention, or to get tangible materials (usually a straw). He has learned to request a break using a voice-recorder break button, and this month he has been verbally requesting a break without the button. He has mastered tapping adults to get their attention, and continues to work on calling them by name. With a “wait card” prompt, he can wait appropriately for at least 30 seconds in context. He independently transitions between activities with a name card, even when his behavior is escalated. He is learning to use headphones to enjoy music and also block out aversive crying, screaming, and other noises. He has learned to tolerate ending preferred activities, especially access to a straw, which he now consistently ends by counting to five and giving the straw back to the adult. And he has learned to play and work by himself, without adult attention, for up to 25 minutes.

Medication: Leelo’s behavior improvement is likely due in part to ongoing use of the medication Claritin since Spring 2007. His aggressive behavior had previously increased during the winter and spring, and he appeared to have headache pain (head hitting, rubbing, preference for forehead pressure); so there was some suspicion that he was suffering from allergies and sinus problems. This winter/spring of 2007-08, while on Claritin, Leelo has not experienced a long period of behavior escalation. [SNORT. Did I brag too much? Sigh.]

Problem Behavior Prevention and Response: In addition, implementation of other behavior plan interventions have been critical to his learning and maintaining appropriate replacement behaviors. Staff currently prevent behavior problems by using a range of strategies, including managing straw access, maintaining routine, using visual supports and reducing verbal instruction. Staff also teach Leelo replacement and coping behaviors, including waiting, requesting breaks, tapping or calling people for attention, and schedule use. Staff respond to problem behavior by prompting Leelo to use these more appropriate skills to meet his needs. The staff at Cielo Azul rotate within the class, so Leelo has had to learn to tolerate some variation in instruction. This is beneficial to Leelo, as long as all staff are skilled in his behavior plan implementation and instructional goals.

Visual schedule and prompts: Learning to follow a visual schedule has been central to Leelo’s reduction in aggressive behavior. Previously, Leelo was regularly aggressive during transitions, including transitions within a multiple-part activity. With the visual schedule, Leelo understands what is happening now, and what will happen next and later, and he appears much more relaxed and able to engage with this understanding of his day. In addition, visual prompts have been helpful in teaching Leelo to wait, and to walk together instead of running ahead.

Independent work: Engaging in independent activity has also been important in reducing problem behaviors. Leelo enjoys attention, and previously engaged in aggression and self-injury to get attention. In addition to asking for attention in more appropriate ways, it was also important for Leelo to learn to tolerate and enjoy his time alone, and to engage in activities without adult attention. His progress in this area has been wonderful to observe. Leelo is becoming self-directed, and independent. Most importantly, he appears to be enjoying himself in purposeful ways, and is now better able to participate in his family and school communities.

Leelo has made great progress in the past year. He has mastered skills which are pivotal to his ability to learn in a classroom and to function independently. The use of Applied Behavior Analysis (ABA) in understanding Leo’s problem behavior and learning challenges, in developing and modifying interventions, and in tracking his progress has been critical. Specifically, Leelo behaves more appropriately and makes progress when skills are taught in small steps, when reinforcement is consistently provided contingent on correct responding, and when data is collected immediately.

It is recommended that he continue to receive ongoing behavioral consultation at school and at home. His home program should emphasize functional living/self-care, social/ language, and leisure skills. Generalization to siblings, parents, and family friends should be the focus. Instruction to increase food tolerance is recommended. Classroom consultation should continue to emphasize implementation of Leo’s behavior plan; the use of effective instructional strategies to teach new skills and to increase Leo’s time actively engaged in learning across the school day. Opportunities for peer social interaction and group learning should also be increased.

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Leelo Loves Materials

Leelo Loves Materials

Turns out that bringing "materials" when we go out and having them available all around the house is a really good thing for Leelo. During our usual Saturday breakfast at the cafe, instead of constantly asking for straws or croissant, he strung beads, laced cards, and did concentration-style matching games. He still ate a lot, but not as much, and not at such a panicky rate.

He is still having a rough time, though, behaviorally. He woke up at 6 AM with what must have been a hell of a headache, because when I walked to his bed to greet him and say "good morning," he reached up, started smacking me and then his head, and ripped off my necklace (I really will have to give up wearing necklaces for now as that's the third one in six months). He calmed down eventually but I am going to take him to the doctor tomorrow to make sure he doesn't have an ear infection.

Also, as Seymour pointed out, Leelo's increasing girth means that he is just too wide for even the size 10 - 12 underwear we've stocked for him. If he has inherited my clothing sensitivities (any binding or pinching means headaches and nausea) and has a headache as well, then he must be really miserable.

And, again, some of it is just behavioral, as in when he punches me and then prompts me, "No hitting!" Or yesterday, when we arrived to pick up Izzy from her girl scout meeting and she wasn't ready and we had to take a walk around the block and then Izzy still wasn't ready. I told Leelo that we couldn't get "in the van" just yet. He looked me right in the eye, and then calmly and deliberately raked his nails down my forearm.

It's the usual good and bad around here. I'll end with some good:

One more reason why I love Leelo's school: On Thursday night, Supervisor M sent a letter to Leelo's teacher, asking if we could get home-use copies of eight picture/word icons that Leelo uses in class. Four copies of each (painstakingly printed, copied, cut out, and glued to cards) came home in Leelo's backpack Friday afternoon. Sometimes I am just dumbfounded by the supportiveness of his class staff.

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Izzy in the Hall of the Mountain King

Izzy in the Hall of the Mountain King

Iz is starting to appreciate the value of hard work and effort as a means to self-satisfaction, entertaining people who then exclaim and cheer, and making her grandfather so happy to finally see a grandchild playing his piano that he gets tears in his eyes.

I almost made Iz quit piano because her refusal to practice was driving both me and her teacher bananas. But Iz swore she'd step it up, and she did. I'm proud, but more importantly, she's proud of herself.

She goes to geek school with kids who play Rachmaninoff flawlessly, so Best is not the focus. No. We're trying to learn her that practice and dedication eventually leads to skill, passion, and beautiful music, like the Xena theme song she's starting to play by ear.

Izzy quote for the week: "Mommy, I am not getting into the bath with Mali because she is tooting! I am not getting back in there until the gas DISSIPATES!"

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Fantastic Autism Resource for Educators and Parents: AutismGames.org

Fantastic Autism Resource for Educators and Parents: AutismGames.org

It's been a long time since I've come across a site with so many new resources, that plinked my brain in so many different directions, that gave me so many new ideas for activities to explore with Leelo.

Autism Games (www.autismgames.org) has an extensive selection of descriptions, photos, and even videos of games that parents and educators can do with autistic children of all abilities. The site is divided into helpful sections: Site Introduction, Game Pages, Parent Tips, and Learning Objectives.

Thought the site's creator, Tahirih Bushey, is a speech pathologist, the site does not focus solely on communication and language acquisition. In fact, it cover areas as different as using music, and rules for using the computer. There is even an extensive and informative companion blog.

This is the kind of resource that makes me love teh internets so deeply. Unlike the Autism Speaks 100 Day Kit, which I am not trashing but which has to be ordered before you can start DOING SOMETHING to support your newly diagnosed autistic child, AutismGames.org is available to help families right now. For free. And I am very grateful.

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Resources: Notes from Leelo's Team Meeting

Resources: Notes from Leelo's Team Meeting

Here are my notes from Leelo's team meeting earlier today. We covered a lot of ground. Probably the materials most helpful for other parents/caregivers are the sections on compulsive vs. anxiety-based behaviors, and how to manage/prevent crisis situations by modifying school behavior plans for home use. We also discussed implementing a more thorough visual support system for Leelo at home, since he is so skilled with and so centered by using an extensive visual schedule at school.

Leelo Rosenberg Team Meeting Notes 5/1/08

Supervisor E: When researchers did MRIs of people on the spectrum while they asked them to identify emotions, the subjects’ brains didn’t fire up the way typical people do, so it’s really important to use real world emotional models as well as pictures. Otherwise it’s just rote memorization and not generalization.

Squid will make more emotional model photos, esp. of her and Seymour

Improved hand washing. Currently he gets the soap, but then washes it off before he has a chance to lather.

Supervisor M suggests hand-over-hand

Supervisor E suggests turning off the water after wetting hands, or using hand sanitizers and wipes.

The current goal of this program is to teach Leelo mouse skills. The games are fun and reinforcing for items that he already knows, like vocabulary and numbers, to introduce new vocabulary, cover gaps, reinforce concepts like “same & different”. It’s okay for Seymour & Squid to use it however we see fit; data collection has not been active since Therapist L left, so other people using the program will not affect any calculations.

Currently most activities result in an on-screen reinforcer, but Therapist R and Therapist L frequently have/had to use tangible reinforcers to get Leelo to tolerate the interval before the reinforcer. Supervisor E suggests modifying the intervals before he gets to the on-screen reinforcer.

Squid & Seymour & Therapist A have not been able to get past the preview mode, so will set aside time to work on figuring it out.

Leelo is currently able to independently navigate Starfall.com and many PBS kids.com programs because he is good at clicking and dragging. Although he will perseverate on many small intervals (one screen over and over) and sometimes needs prompting to get out of these cycles. Supervisor M suggests getting Leelo more varied software to play with, e.g., Reader Rabbit.

The last couple of weeks have been challenging. Lots of aggression and hitting, occasionally escalating to full-scale freak outs with scratching, hair pulling. He is also targeting his sisters a lot, though he resorts to hitting or pushing them and usually does so for the reaction he gets from them or adults around him (Squid tries to comfort his victims without giving him any eye contact or input whatsoever) He is generally less able to tolerate the usual demands we place on him.

Therapist A question: is there a correlation between dropping demands and giving him a less stressful environment; does this contribute to his rigidity? Supervisor M and Supervisor E says only if it happens when you’re in a situation where you’ve asked him to do something and you drop your demand because of his behavior. That is very reinforcing, negatively. Different than dropping your demands across the board when he’s grumpy.

Roots of aggression: Many, many changes in environment: Therapist L is gone and he’s realized that she’s not coming back, pool access is unpredictable, trampoline is off-limits (Seymour has taken it apart to replace worn parts), his school days are longer, allergies flaring, he has been having absence seizures and possible migraines.

Squid talked with his pediatrician Dr. M this morning. She would like us to try dissolvable Tylenol tablets for his headaches, and move from Claritin to Zyrtec for his allergies (Supervisor E mentions that Zyrtec can cause sleepiness, and that we should dose him at night). Note: there is anecdotal evidence that Zyrtec can make some kids hyperactive.

Squid’s litmus for a good school day: When he gets off the bus, is he wearing the same clothes he wore to school this morning? At least he has stopped having the several-times-per-day toilet accidents he was having a few weeks ago, though he did have one at school today.

Existing plan was written for school. Supervisor M brought a copy with highlighted areas appropriate for home guidelines. She wants to work with Therapist E to rewrite it for home.

  • Know high risk times.
  • Reinforce good behavior using praise, tokens, & tangibles (e.g.: currently he’s having problems with transitions between tasks at school). Supervisor E: “Gentle Reminder” is a pager-like object that can be sent for a predetermined interval (every minute or so) to remind grownups to give constant verbal reinforcement.
  • Careful about the attention and not use it when he’s using problem behavior.
  • Use of straws: they try to manage straws in the classroom, harder to do during recess. It’s okay if he’s engaging in other things when using a straw. If he has a problem behavior while using a straw: count to five, and then take the straw. He can earn it back by completing a simple task. (Rule at school: he only gets new straws 3x/day [during a 9 – 3 day]; he gets a straw when getting off bus, in the middle of the day after his independent work time, and at end of day.)
  • Use of visual aids: Need to start using them at home. They override a lot of problem behaviors because he can’t argue with the icons. He is compulsive about obedience to icons and checking his schedule because they shift control from people to the schedule. He’ll even rearrange the schedule to his liking when he can get away with, which Supervisor M thinks is a good demonstration of thinking and engaging.
  • A good start would be “walk together” (icon + phrase) which helps address the bolting.
  • Visual Support icons we need for home. We need at least eight copies of each for home. Examples:
  • Wait
  • walk together
  • stay in car seat
  • play with toys
Leelo is starting to refuse to stay in his car seat if he drops a straw, if he wants to take off his shoes, etc.. Yesterday he dove over the seat back and into the trunk because he knew there were cookies in one of the grocery bags located back there. While Squid was driving down the street.

Beg five-point harness car seat back from Jennyalice if possible. Start using icon for “stay in car seat” and give lots of praise (use Gentle Reminder) about what a good job he’s doing sitting in his car seat.

Might be that he will dislike returning to the five-point intensely enough to comply with booster/seatbelt again.

Squid says she will probably have to take out the non-Mali seat in the middle row of the car to use the five-point, as it is very difficult to strap Leelo into it in the back row of the minivan with that seat in the way, but if he sits next to Mali he may hit her.

What do we do to prevent Leelo from getting into a crisis?

When we see him escalate, first thing: straw out of mouth. Immediately give him his name card, then immediately give him an icon card for what he needs to do next.

When people are in an aggression crisis, we should not be approaching them and asking them what’s wrong. We should make sure that person and everyone else is safe, and let them de-escalate on their own. Sometimes they can learn to de-escalate on their own if they have a safe, designated space to do so.

Supervisor M has spreadsheet of mastered skills for us to practice.

Supervisor E suggests using visual prompt for “How old are you?” question.

Important to differentiate between anxiety (“wet” shirt) and compulsion (repetitive behaviors).

How to deal with rigidity and compulsive behaviors. Compulsive behaviors (stretching out car seat strap five or six times, touching everything in certain sequences, etc.). Supervisor M says this may be neurological path that gets stronger every time the action is performed; this is something that isn’t usually an issue unless Leelo is uncomfortable in his skin like he is right now.

Supervisor E says that this is something where you just block the behavior.

With anxiety issues (“wet” shirt) we need to get him through it however we can (reinforcers and distractions). We need to increase his exposure. We can block and delay. We can use the Wait card. We can also re-create the situation while he is doing something highly reinforcing like watching a video. Therapist R says it’s sometimes helpful to talk about it; this helps him relax. “Your shirt is wet. What should we do?” L: “Change your shirt,” introduce distractions; maybe eventually you’ll still have to change the shirt, but maybe not.

Also again with the positive reinforcement: “You are doing a really good job keeping that wet shirt on.”

Leelo has gained a lot of weight in the past few months, over ten pounds since the fall. Historically he has bulked up over the winter and slimmed down over the summer, but in his family’s opinion he is far too chubby right now (over 75 lbs).

Squid thinks Leelo eats compulsively because it’s something he’s mastered and it’s self-reinforcing. At the moment he doesn’t get a lot of food reinforcers; they have been completely eliminated from his home sessions, and he only gets food as a reinforcer for successful BM toileting or to distract him during times of anxiety/rigidity.

Squid thinks that if we were able to distract him more with things he was able to do independently, he might not need to eat so much. She also expressed concern over the amount of snacks made available at school; Supervisor M confirmed that Leelo was being given two bowls of goldfish crackers during snack time. Squid sent in some Veggie Booty today instead.

At home it would be great to have bins in various places for mastered tasks.

Supervisor M distributed lists of mastered and ongoing tasks, as well as checklists for IEP goals.

Leelo has started to be reluctant to take his usual neighborhood walks with his therapists. Squid mentioned that Leelo can walk over two miles on trails, where there is a defined path to follow. She will accompany the therapists on their walks for now and show them how to get to the nearby nature preserve where there is a trail, so that Leelo can hike there.

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