1.30.2009

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:

New TV, New Polycarbonate Shield

(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.

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1.27.2009

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!

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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:

Someone Doesn't Get to Go to Camp

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

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

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

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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:

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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:

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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:

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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.

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1.26.2009

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.

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1.20.2009

We Have Chosen Hope Over Fear

Gary Kamiya summarizes what we need to process and get past, if we want to fructify the promise of Barack Obama's joyous, clear-eyed, righteously positive inauguration day:
I cannot forgive Bush for what he did. With reckless arrogance and blind stupidity, he trashed the country I grew up in and love. He has the blood of hundreds of thousands of people on his hands. He exalted greed and selfishness. He spied, tortured and kidnapped. He brought shame to our nation's name.

There must be a reckoning for such grave acts. Unless we acknowledge the grievous damage Bush did -- to the environment, to the economy, to Iraq and the Middle East, to our cherished tradition of civil liberties, to a world that desperately needed a wise and compassionate America -- we will leave ourselves open to making the same mistakes again. Unless we hold those who committed crimes accountable, we will degrade the rule of law, our highest values and morality itself. To free ourselves of the cancer that was the Bush years, we must see it clearly and cut it out.

But clinging to anger, however righteous, eventually corrodes one's soul. You become the thing you hate. You can't get to where you want to go if you are forever looking backward. Like millions of Americans, I have been living with anger and bitterness for much too long. In his second inaugural address, Abraham Lincoln asked Americans to finish their great appointed task "with malice towards none, with charity for all."
Looking forward to moving forward, being inspired, and living in an era in which compassion and hard work are equally valued.

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1.16.2009

Iz Turning Ten

We're the parents of a ten-year-old?

Zelly Three Days Before Turning Ten
Rare non-mugging moment. Mirrors, beware! Our almost-tween will spend hours trying out different personalities and expressions on you.

Reading the Mayo Clinic Family Health Guide
Reading the Mayo Clinic Family Health Guide. For hours and hours. Then asking me detailed questions about what kinds of blood vessels are used as replacements for heart bypass surgery, where in the body do they come from, what happens to the circulation in that part of the body when they're gone ... exhausting.

Unruly Trio
She can be a twit, but she does her best to be a very good big sister.

My Iz-party energy has dwindled significantly with each passing year. This year it's sputtered out completely. We're off in a few hours to visit The Mouse instead.

Have a lovely weekend.

1.14.2009

JerseyGirl, Where Are Yooooo?

Write me, please!

Everyone else: Why hello there! We are still recovering from the holidays. You?

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1.08.2009

Mind Institute: California's Autism Increase Not Due To Better Counting, Diagnosis

Researchers from Sacramento's U.C. Davis MIND Institute have mined extensive Census, Department of Developmental Services data, and concluded that our state's autism increase has only partially resulted from changes in diagnosis, migration, etc. In their opinion, autism researchers need to give environmental toxins and microbes the scrutiny currently they currently afford to genetic research:

http://www.sciencedaily.com/releases/2009/01/090108095429.htm
...[Researcher] Hertz-Picciotto said that many researchers, state officials and advocacy organizations have viewed the rise in autism's incidence in California with skepticism.

The incidence of autism by age six in California has increased from fewer than nine in 10,000 for children born in 1990 to more than 44 in 10,000 for children born in 2000. Some have argued that this change could have been due to migration into California of families with autistic children, inclusion of children with milder forms of autism in the counting and earlier ages of diagnosis as consequences of improved surveillance or greater awareness.

Hertz-Picciotto and her co-author, Lora Delwiche of the UC Davis Department of Public Health Sciences, initiated the study to address these beliefs, analyzing data collected by the state of California Department of Developmental Services (DDS) from 1990 to 2006, as well as the United States Census Bureau and state of California Department of Public Health Office of Vital Records, which compiles and maintains birth statistics.

Hertz-Picciotto and Delwiche correlated the number of cases of autism reported between 1990 and 2006 with birth records and excluded children not born in California. They used Census Bureau data to calculate the rate of incidence in the population over time and examined the age at diagnosis of all children ages two to 10 years old.

The methodology eliminated migration as a potential cause of the increase in the number of autism cases. It also revealed that no more than 56 percent of the estimated 600-to-700 percent increase, that is, less than one-tenth of the increased number of reported autism cases, could be attributed to the inclusion of milder cases of autism. Only 24 percent of the increase could be attributed to earlier age at diagnosis.

"These are fairly small percentages compared to the size of the increase that we've seen in the state," Hertz-Picciotto said...
Contrast this excerpt with the letter below, written by a veteran special education professional from a midwestern state, who opines that the autism rate has not in fact increased -- but rather that spectrum diagnoses have been given to children who would previously have been labeled mentally retarded/disabled, quirky, eccentric, or mentally ill:
I am a lurker and Special Education Teacher. I read your blog and several others' who have kids with autism. I've learned so much from doing this. To me it's a chance to be an invited mouse in the corner for educational purposes. I also teach kids on the severe side at the high school level in a large town/small city in the midwest. Some have autism, some do not.

In my opinion -- and I do not have any data to back this up, just twenty-eight years teaching and living in our district -- the incidence of autism has not gone up. I think more kids are diagnosed. I know adults in our community who have many autistic-like behaviors but never had the official medical diagnosis, and were labeled mentally disabled at school.

I also think some higher functioning kids dropped out of school at a very young age because the social issues were just too much. They usually live with their families forever and were considered the really different, quirky kids when they were at school. They were not supported socially at school. I think this still happens, but not quite so often. I also wonder if some were diagnosed mentally ill and were served in the state mental health system.

I live in a state where kids are not labeled by a specific disability at school. It has been this way for about twelve years. This system has its advantages and disadvantages, my point is that there is really no incentive (that isn't the word I want to use but is the best I can come up with right now) for parents to seek an autism diagnosis. I have kids at school now that have autistic-like behaviors that do not have an official diagnosis. The idea is that any disabled child will recieve support/services based on their needs to be sucessful at school. Our state and in particular our school system has excellent early childhood services available for every disabled child.

Also, I don't think families in the midwest pursue private services for education and therapies paid for out-of-pocket or by insurance like they do on the west or east coasts. Families are more likely to rely on public schools and extended families for most if not all their services. Our state social service system can also provide some respite and limited in-home services for a child with a "significant developmental disorder". That is a generic diagnosis for any disability that affects development. Really it's all a word game.

I do not think that there are any private schools that serve kids with autism in our state. In fact there are very few private schools for anybody. Often districts will bus kids to special public schools in other districts or larger public districts and very rarely pay for children to attend an out-of-state residential school. Is this a cultural thing? I think so but I've never really thought about it. Anyway if you don't have to justify costs to an insurance company why pursue a diagnosis?

Now, there are reasons to have an official diagnosis when kids transition into adult services in our state. Independent living services in particular are better or maybe just different for individuals with an autism diagnosis. Adult work and advanced education options might also be better for higher functioning adults who are diagnosed with autism.
Regardless, I can only be grateful for articles that raise awareness of the size and needs of the autistic population, and influence the legislators-that-be to provide more funding for Leelo and his peers.

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1.03.2009

I Wish I Knew

Where Are My Pants?

May our stress levels recede to the point where we *know* where our pants are, all the time, in 2009.

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