Panic Viruses, Surgeon Generals, Fungus Fairs, Grants, & Tsunamis

Busy week. Damn. See that title?

I know the iPad2 came out today. And I'm excited, we're all excited. Camera = instant icons and social stories, can you imagine? But we're going to wait a week to get one -- assuming they're still available. Neither Leelo nor I like crowds or waiting in lines, and that bests any must-have factor.

Update: iPad 2 shipping in two to three weeks (Engadget) [Pooooop!]

Seth Mnookin came to town in support of his crucial vaccine misinformation guidebook The Panic Virus (note: it was a self-organized tour). On Monday, he had a fine conversation with KQED Forum's Michael Krasny about the media's botched handling of the Wakefield debacle, and another with Steve Silberman (anti-vaccine commenters have roosted, you might want to leave a pro-evidence comment) on how autism parents' need for support and the elusiveness of autism causation answers can lead families to false beliefs and harmful actions -- including immunization choices that undermine public health.

Mr. Mnookin also came to Science Cafe, where Jennyalice, Liz Ditz, and I got to meet him in person. I was impressed -- he was not only a great speaker, but radiates kindness coupled with a Heinlein's Fair Witness-like dedication to evidence and information-gathering. That's a combination I wish more reporters would grok.

On Wednesday, Seymour's team's Fungus Fair piece went live -- and for those keeping score, that was indeed the mushroom indoctrination experience that led to our family's Mushroom Frenzy. Have a look, and please leave a comment on KQED Quest's own site to let Seymour's team know what you think.


QUEST on KQED Public Media.

Thursday (yesterday) the ASF notified me that I won an Autism Science Foundation IMFAR travel grant. A big honor. I hope to do the award justice. More info:

The Autism Science Foundation, a not for profit organization dedicated to supporting and funding autism research, today announced the recipients of its IMFAR Stakeholder Travel grants. ASF will make 11 awards of up to $1000 to be used to cover expenses related to attending the International Meeting for Autism Research in San Diego in May 2011. After the conference, grant recipients will be expected to share what they’ve learned with families in their local communities and/or online.

This year’s recipients are:

• Geraldine Bliss—Parent
• Matthew Carey—Parent
• Shannon Des Roches Rosa—Parent
• Mark Fornefeld—Self Identified Individual with Autism
• Abby Hare—Graduate Student
• Erin Lopes—Parent
• Molly McGrath—Self Identified Individual with Autism/MIT Media Lab
• Brianna Miller—Special Ed Teacher, Newark Public Schools
• Sharman Ober-Reynolds—Parent/Senior Research Coordinator,SARRC
• Megan O’Boyle—Parent
• Max Rolison—Undergraduate Student

IMFAR is an annual scientific meeting, convened each spring, to promote exchange and dissemination of the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

Yesterday I also spent the entire day speaking about iPads (natch) and listening to the other speakers -- fabulous speakers -- at the UCSF Developmental Disabities conference. Speakers that included Surgeon General Regina Benjamin. Adding to the goodness: I got to spend the day with lovely Laura Shumaker, who got me the speaker gig. I learned so much that my brain shuts down each time I try to recap. But I will force my brain to give up the goods this Monday, for a TPGA post.

Today -- Friday -- we are all worried about and horrified by the earthquakes and tsunamis in Japan. My cousin and his family, all residents, are fine, but so many are not. Here are some helpful links, including today's coincidental TPGA post on why IEPs should be part of emergency planning:

• TPGA: Emergency Evacuation Should Be Part of the IEP 
• Mail Online: The big pictures: The moment Japan's cataclysmic tsunami engulfed a nation 
• Mother Jones: Tsunami makes it to our back yard…San Francisco Bay, moving toward Emeryville on the Bay’s east side 
• Grist: Today’s tsunami: This is what climate change looks like

Wouldn't change anything, as usual -- but I hope next week is more placid for all of us.

Vrrrrrooooom!

Here's Leo riding his first-ever go kart racer with his dad, while we were in Phoenix over the holidays. He had a great time!

This is also a good representation of the clip at which are days are going lately. Don't blink, is all I can say.

There are two massive top secret projects on the front burner, I'm hoping I can share the news about them eventually.  But even just living the lives we've arranged for ourselves is not an endeavor for the faint-hearted or the easily winded, not lately.

So I'll likely be re-evaluating participation in a number of those day-to-day things, mostly with an eye towards improving quality of life with my family by being less tired and therefore less grumpy and twitchy, and snagging more hours of sleep than I can count on one hand per night. Reasonable goals.

I have to say, I am really proud of The Thinking Person's Guide to Autism, even though crafting the associated book in a manner than does its content justice has taken longer than we editors anticipated. But as for quality of content: In the last two weeks on TPGA I interviewed vaccine expert Dr. Paul Offit about the most commonly held public myths about immunizations,  I interviewed investigative reporter and The Panic Virus author Seth Mnookin about why we need to hold the media resonsible for allowing vaccine fears and misinformation to proliferate, we featured Mark Osteen's powerful insights on his son's never-ending attempts to talk despite largely uncooperative wiring, and Jennyalice wrote a barnstormer, When Medication Is the Right Choice -- a post I think should be posted on every parenting forum in the country (or dropped on the head of every parent who has ever gone around proclaiming "I could never medicate MY child" because they've been fortunate enough to have a child who doesn't require medication just to get through five minutes of a day, let alone an entire day).

I'm also considering going to the IMFAR conference this year. Have any of you ever been? What did you think? From the INSAR website:

The International Meeting for Austism Research (IMFAR) is an annual scientific meeting, convened each spring, to exchange and disseminate new scientific progress among ASD scientists and their trainees from around the world. The first and primary aim of the meeting is to promote exchange and dissemination of the latest scientific findings and to stimulate research progress in understanding the nature, causes, and treatments for ASD.

Also, I'll be speaking on iPads for people with special needs at the UCSF Developmental Disabilities Conference on March 10th. Our key note speaker will be Surgeon General Regina Benjamin:

Dr. Regina Benjamin, [...] our major keynote speaker [will] address issues related to diversity among health care providers serving an increasingly diverse population of children and adults with autism and other disabilities.

Here's info about the conference itself:

This conference provides a practical and useful update for primary care and subspecialty health care professionals caring for children, youth and adults with complex health care needs and developmental disabilities. This year’s topics offer new perspectives, research findings and clinical guidelines, including an overview of relevant information for pediatricians, family physicians, internists, and nurse practitioners who are involved in the care of individuals with autism spectrum disorders, cerebral palsy, and other disabilities.

Even though the conference is geared towards health professionals, much of the information will be useful for families, too. I'd be so grateful to see familiar names and faces.

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By the way, it's Jennyalice's birthday today. Please go wish her joyeux anniversaire (she has a thing for French).

A very hard day at the end of a string of very hard days

It's been a while since I did a straight barf-style download. Blarghagahgh:

Today was a very hard day at the end of a string of very hard days. Just so tired. Literally no break for too long, except occasional 10 minutes of bath reading in the AM. I don't like living this way. It compromises parenting skills and patience, and is not ideal for anyone, no matter how many other people have it worse or harder or more intense.

Anyhow. It's been several weeks of child illness, therapist illness, partner traveling, and a full eleven days of Leelo out of school with a mom who needs to work at least part of every morning and has not had a break during the day for weeks. That latter isn't really fair to Leo, but I had to decide whether it would be better for my son if I was distracted by work or too sleep-deprived to supervise him safely, because if I don't work all morning that means I'm working far past bedtime. I must really be getting old, as I tend to err on the side of sleep more frequently. Leo did a lot of fantastic puzzling and spontaneous drawing (usually with chalk on easel) while waiting for me to finish my damn work shifts (which are going to be shorter starting next week thanks to my awesome awesome boss). Working with him at home is doable, but guilt-wracked.

And Wednesdays are always grueling, six straight hours of child errand running and hauling, though the payoff is Costco pizza for dinner so we are always motivated. (Except Leo who has been having a PB and J for dinner for six years and doesn't seem to mind.)

The day started off well -- Leo went to school! -- and then a friend called to let me know how crappily the district budget crisis meeting at her son's school went (that would be at Leo's resented former kinder site, get a copy of My Baby Rides the Short Bus for the formal rant). She said that a parent stood up and asked why all special ed kids couldn't be institutionalized, so that "regular" kids could still have their music and dance classes. Reader, I burst into tears. And then I tweeted the hell out of this SpedPro article citing my friend Lea's guest post on the Cost/Benefits of Special Education. I think Jocelyn Sloan's reaction said it best: "I pay the same taxes [that woman] does. Therefore I expect the same benefit: educated children." I also think that original woman is a total asshole. Please forward the SpedPro article to as many people as you can, to help them understand that kids with special needs do not steal education funds from regular ed kids! Or print the article out and nail it to foreheads that are particularly thick. Your choice.

Later I traveled to Leo's school for a Leo team meeting. We (Supervisor M, E, and Sage, Leo's dear dear speech therapist) are worried that our boy is not getting sufficiently rigorous learning at home or at school, and is not going to meet most of his IEP goals. (Though we may have set them too high to begin with, as he was on such a radiant arc during IEP April 2009). I am going to talk with his school staff about accountability and progress reports, Supervisor E and M are going to help me and Therapist V set up core home "learning" centers both in Leo's room and downstairs to supplement IEP goals. Yes the goals are the school's responsibility, but I want Leo to learn them regardless of who does the teaching. There's no room for petty or finger-pointing when it comes to my son's education.

Leo's behavioral psychiatrist then called. He wants to increase his Risperdol dosage, adding in another .5 mg right before he goes to school for 1.5 mg/day total. We think his agitation at school has less to do with medication, and more to do with the aides rotating through every 10 weeks and never really getting to know him, not really, but hey -- we've been wondering about upping that dosage anyhow. If it helps, and his aggression and sleep patterns stabilize (he was up tantrumming on Seymour's shift until around 10 tonight) yet his OCD stims persist to an interfering-with-instruction degree, then we will consider adding in anti-anxiety meds Zoloft or Luvox.

Picking up and dropping off of various trumpet-playing and jazz-dancing sisters commenced. Leo was a good sport through various interstitial errands, but was not in the mood to wait for Mali to get out of her dance class, and got quite aggressive as the girls and I walked with him from the studio to the car. Could we chance Costco? We've had a couple of really bad times at Costco. Iz pleaded with me not to go, said she didn't want to risk me getting upset. Which was so sweet of her.

I reassured Iz that we would be fine, that we would leave if anything went wrong. That Leelo hasn't had a bad time as Costco in months. And it was fine until we exited and started walking towards the car and the girls couldn't break their cycle of completely and utterly stereotypical sibling bickering and yelling. It was maddening, both to me and Leo.

Maddening especially as I had just been talking with Iz about sticky interactions with peers, in trying to take her ego out of the equation, in asking people "what makes you think that?" instead of striking out or judging. In reverting to her comic book Buddha's strategy of "I don't accept your angry words, you can keep them" when absolutely necessary. But she can't not react to Mali. She can't.

And I realized that I can't control my children, I can only control how I react to them, and how I model for them. So after five minutes of the girls refusing to stop despite pleas and threats and reassurances that not reacting to your antagonizer really does work, and as Leo's agitation increased and he kept hitting and pushing me, I disengaged. I told them I would give them a demonstration of how effective not reacting can be.

We loaded up the car. I turned on our local classical music station, and I didn't speak to them or react to Leo's pushing and hitting me for the next 20 minutes, not until we arrived home.

Leo stopped fairly quickly. He needs a steady supply of reaction fuel. Iz wailed, then wilted, then went back to reading the copy of Anne Frank's Diary that she'd swiped from Susan.

It took Mali longer, because she has the tenacity and craftiness of an oft-ignored third child. First she announced to Iz that I wasn't speaking to them because I didn't like them, even though I'd assured her moments before that I always love my children even when I don't like the way they're behaving. Then she asked me the kind of deep, complicated questions that usually keep me talking for hours, this time, "Mommy, what is a god and why did the Ewoks think C-3PO was one?" But eventually she turned back to her book.

By the time we pulled onto our street and as we crested the summit of our hill, with its truly glorious view of the San Andreas fault's valley and the rain cloud-kissed Santa Cruz mountains behind, Delibes' Lakme: Flower Duet was playing and the car was otherwise silent. For a few minutes. For a few inhalations.

And then we walked in the front door and chaos resumed. I would be okay with taking a small break from it in the near future.

Glimpse

Wedding was good. My pilot brother looked shellshocked, Rita was efficient and direct and amusing. Iz was a gorgeous flower girl. I really enjoyed being suspended in a cloud of relatives for four straight days, but it all came and went so fast that it may never have actually happened. I didn't have time/remember to file my ragged fingernails, bring jewelry (Seymour's mom is very generous in gifting me sparklies for birthdays and holidays so I try to bring it when she's around, as she was), assemble or dry clean a suitable outfit (went with my Steviae Nicks gear), do the same for Leelo (he wore a long-sleeved t-shirt, jeans, and sneakers), or repair the ratty shoes I ended up wearing anyhow. I certainly never had time or opportunity to replenish Leelo's take-along foods like I thought I might. So, Leelo got to eat yogurt, froot loops, peanut buter and jelly, and cookies, and Seymour and I got Leelo through the wedding ceremony by plying him with M & Ms (he's not supposed to have chocolate, excess sugar, artificial anything, peanuts, dairy, or wheat).

Mostly I was too busy to be stressed, but on the way back I realized that things had gotten truly dire when I had to feed desperately hungry Mali macerated peanuts and ginger ale during our flight, because the Phoenix airport was so insanely busy that most people had boarded by the time we got to the gate and there was no time to purchase food.

Gauge of how things are going now that we're back: The entire counter is covered with dead fridge foodstuffs that need to be dealt with (emptied, mostly, so the containers can be cleaned or recycled); Leelo's birthday presents are still gathered in a corner, unopened, on top of a box marked "Halloween," which itself is supposed to be filled with all the pumpkin-themed decorations still bedecking our home.

I have not yet written or contacted Tia Izobel to tell her how sorry we are about her son Dick's passing last month. I have not sent presents to the two last weddings we attended. I've not yet mailed birthday presents to TLF or Hayley. I've yet to even purchase them for Dee's Artoo. Or Kerali, for that matter.

There is an Iron Gate meeting tonight. I told Sage I was going but I might just have to bail. I literally, literally have not had a break (except right now while Marroqui is watching Mali while I'm supposed to be cleaning the house) to even read a book for five minutes or be by myself for a very long long time. So, if you've not seen me yet it is because I might have to kill anyone who looks at me sideways. If you've got someone on your list, though, send them my way for easy dispatching.

What keeps me afloat is the horrible yet comical image of poor, dear, vegetarian Ep, who came to the rescue of our kids' three placentas in the melty freezer and--I'm guessing from the empty containers on the counter when we arrived back home--had to transfer the nasty things into some other receptacle. Eww. Even I wouldn't want to do that. I owe her, big.