My Poor Assless Boy

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

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

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

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

Technorati Tags: autism, autism blog, husky, pants

Izzy Howser

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

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

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

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

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

Technorati Tags: autism siblings

Happy Valentine's Day!

It's a Match!

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

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

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

Technorati Tags: autism, autism blog, Monterey Bay Aquarium, reading, sight reading

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

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

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

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

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

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

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

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

Thank you for your support.

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

We'd really love to see you all there!

------

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

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

Technorati Tags: Can I Sit With You Too?, Can I Sit With You?, Can I Sit WIth You? Live, social skills, special education fundraising, special education PTA, special needs parenting

Attitudes Under the Avalanche

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

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


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

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

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

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


Have a good weekend, Blogosphere.

Technorati Tags: autism, autism blog

Raise Shields!

From the Forgot to Mention pile:

About a month ago, Leelo broke our new flatscreen TV (which itself replaced the ten-year-old B-stock TV that he broke in August). Once he stopped grimacing, Seymour replaced it, and installed a custom polycarbonate shield to protect our media altar from future THWACK THWACK THWACK attacks:



(Bonus points to anyone who can name this ST:TOS episode. Hint: Spock does Flamenco dancing.)

Of course, Leelo has already figured out how to remove the shield. But doing so takes significant effort and time, and detaching industrial-grade velcro makes a lot of noise. We've been able to intercept all incidents, so far.

Meanwhile, I am feeling grateful for my sizable and conveniently located laundry room, as Mali and Leelo have been home for two days, ejecting foul-smelling material from various orifices. More gratitude: Neither Seymour nor I have been affected (other than the additional cleanup duty), nor have we been caught in the line of fire. Keeping our fingers crossed for more of that luck, as this weekend looks like it's going to be a beautiful one.

Technorati Tags: autism, autism blog

Hot Soup on a Cold Winter's Night

Tonight's dinner guests loved tonight's Vegetarian Chinese Hot-and-Sour Soup so much that I felt I should share the recipe. Either that, or they asked me for the recipe and I'm always up for repurposing significant typing efforts.

Here is the pork-riddled, complex multi-mushroom-rehydrating, nasty canned bamboo shoots-containing Epicurious recipe I bastardized, and which Epicurious/Gourmet had already "adapted" from Bruce Cost:
http://www.epicurious.com/recipes/food/views/Chinese-Hot-and-Sour-Soup-231354

And here is what we actually ate:

Simplified Though Scrumptious Vegetarian Chinese Hot-and-Sour Soup

Makes four large or six/eight small servings.

INGREDIENTS

* 4 medium fresh shiitake mushrooms, stems removed, caps thinly sliced
* 1 1/2 tablespoons cornstarch
* 2 tablespoons red-wine vinegar
* 2 tablespoons rice vinegar (not seasoned)
* 1 tablespoon soy sauce
* 1 1/2 teaspoons sugar
* 1 teaspoon kosher salt (Michael, if you are reading this, I now own a three-pound box)
* 2 tablespoons peanut oil
* 4 cups vegetable broth (I used Better than Bouillon)
* 1 block firm tofu, rinsed and drained, then cut into 2-inch by 1/4-inch-thick strips
* 2 large eggs
* 2 teaspoons roasted sesame oil
* 1 1/2 teaspoons freshly ground black pepper (Aiiigh! You can see the pepper but you saved $10 because you didn't buy white peppercorns!)
* 2 tablespoons thinly sliced scallion greens
* 2 tablespoons fresh whole cilantro leaves

SPECIFICS

1. Stir together 1/4 cup broth with cornstarch in a small bowl and set aside.
2. Stir together vinegars, soy sauce, sugar, and salt in another small bowl.
3. Heat a wok over high heat until a bead of water vaporizes within 1 to 2 seconds of contact. Pour peanut oil down side of wok, then swirl oil, tilting wok to coat sides. Add mushrooms and stir-fry 1 minute.
4. Add broth and bring to a boil, then add tofu. Return to a boil and add vinegar mixture.
5. Stir cornstarch mixture, then add to broth and return to a boil, stirring. (Liquid will thicken.) Reduce heat to moderate and simmer 1 minute.
6. Beat eggs with a fork and add a few drops of sesame oil. Add eggs to soup in a thin stream, stirring slowly in one direction with a spoon.
7. Stir in pepper, cilantro, and scallions, then drizzle in remaining sesame oil and divide among 6 to 8 small bowls.

NOM NOM good on a cold January evening. Enjoy!

Technorati Tags: cooking, vegetarian

Faces

When your big sister goes to outdoor education for a week and you don't get to go even though you really want to and have been arguing your case strenuously for over twenty-four hours, this is the face you make:



Your sister, however, will be making this face while her Godfather makes his "rugged" face:



It is similar to her "I won the school spelling bee" face:



Which is similar to her "Everyone in the restaurant is singing me Happy Birthday!" face:



This is what both of you look like when your mom decides that she's sick of throwing birthday parties and begs free passes to Disneyland off her sister-in-law instead:



This is what your face looks like the next day when the mercury edges towards 90 in January and your mom springs for ice cream:



And, for the grand finale, here are the pleading faces of your Littlest Pet Shop friends after your mother decided that their cutesy needed some diluting via Rebel and Empire Force companions:



So many faces!

Miracles and Invectives

I have deleted a comment by our consistently anonymous friend from NH, in which commenter Amber was chastised for calling Risperdol a "miracle drug" because many people have negative reactions to it in terms of weight gain, honeymoon periods that come crashing down, etc.

We all know that drugs which work for one person may not work for another. I received scores of positive testimonials re: Abilify. It turned out to be a horrible choice for Leelo. But it has proven beneficial for many other children, a few of whose parents also used the term, "miraculous."

I consider Leelo's reaction to Risperdol somewhat miraculous. It has transformed many aspects of his and our lives for the better. Our formerly angry and unsettled boy is currently a bundle of happy playfulness. Who could resist superlatives in such a situation? I know that his buoyancy and clarity may not last, but we are certainly enjoying his joy, moment by moment.

Short version: Don't tell other people how to feel.

And, a reminder: respectful disagreement is fine, and encouraged. Disrespectful statements towards other commenters will disappear.

Technorati Tags: autism, autism blog, etiquette, medication, Risperdol

Hello With Eyes

We switched Leelo to Risperdol on December 31st.

The positive changes in our son have been amazing. I've not seen a Leelo this happy, friendly, and engaged for years. He is a delightful boy, and I am enjoying all the snuggling on the couch, snuggly wake ups (yes, we occasionally have to wake him up), and requests for kisses and hugs.

However he is still targeting his baby sister (and in fact has become increasingly crafty about it) and so we remain very very vigilant, and our house is by necessity divided. At times I find the stress incapacitating.

We have gotten some extra help with Leelo (and are working on getting more regional center respite) and that helps. His new therapist, V, is a strong, intuitive guy who believes in Leelo absolutely. He is a gift.

We also changed the position of his bed away from the wall as he was compulsively dropping straws behind it and getting up and moving the bed himself.

Here are general notes for January from Leelo's home record, which I was also not keeping up for the past few weeks:

----

HEALTH
Very healthy. Continues to gain weight on Risperdol. We have eliminated croissants, added more fruits & vegetables. We are making a concerted effort to get him more exercise (though this is hampered by recent rainy weather).

SLEEP
Sleep in all of Jan has changed. Due to Risperdol? Generally goes to sleep easily 8:30 - 9, wakes up between 6 and 7, sometimes has to be woken up! Averaging 10 - 11 hours FOR THE FIRST TIME IN HIS LIFE.

DIET
Whole Wheat croissants eliminated. Soy yogurt added (eats with spoon). Probiotics switched to every other day. Over course of month, has started eating apples without reinforcement. With Sage, has started eating freeze-dried mango, green beans, snap peas, blueberries. Yesterday ate dried cranberries voluntarily with reinforcer, ate greasy buttery homemade garlic bread with huge whole cloves of garlic happily and without reinforcer. [Who is this child?]

MEDICATION
Risperdol .5 mg every morning and evening at 6:30.

LANGUAGE
Language has been generally good. Lots of shouting, "Mommy!" or other names to get attention. Continues to reverse pronouns, "Mommy, give it to you!" (me). As Supervisor M has noticed, he has been compulsively asking for his statements to be echoed. When asked to say hello to a friend, he didn't look at them but said, "hello." I said, "Leelo, with EYES," and he turned and looked at them and said, "Hello with eyes"!

BEHAVIOR
"Abilify anger" and inability to tolerate being denied is practically gone. Behavior has generally been really great; friendly, happy, engaged, snuggly, asking for lots of hugs and kisses. He is a delightful boy 1:1. Still has occasional compulsive head-slapping upon being denied; when done for attention it is reduced by lack of eye contact. ***HOWEVER*** he still has a compulsive need to hit/push/slap Mali. The two of them cannot be anywhere near each other without a physical barrier between them. Also, okay with going on long walks again, and also is once again allowing us to brush his teeth.

TOILETING
Has been having some problems with toilet accidents, especially at school, with Therapist V, Therapist R, and Seymour (though not with Squid). We have generally gone back to taking him to the toilet every 60 - 90 minutes.

IN GENERAL
Abilify "fog" has dissipated. Two days after stopping Abilify, he spontaneously picked up and properly manipulated "egg tower" toy that he had previously found baffling. However he has become more crafty about trying to hurt Mali, for instance throwing projectiles at her (phone, balls) which he has never previously attemped, and also going upstairs while she is sitting at the bar and trying to drop shoes on her head.

Technorati Tags: autism, autism blog, medication, Risperdol