5.30.2008

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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5.29.2008

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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5.27.2008

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:

http://www.autisticadvocacy.org/modules/smartsection/item.php?itemid=28

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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5.26.2008

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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5.25.2008

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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5.24.2008

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.
Flower
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.)

5.23.2008

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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5.21.2008

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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