5.27.2009

Two Firsts

1) posting this from my phone.
2) My mom is now reading this site

Hi Mom! You already know I'm a twit, no surprise, love you!

5.26.2009

Louse-y New Can I Sit With You? Story: The Cooties

OMG The COOOOTIES! Read it now: http://www.canisitwithyou.org/?p=425

By far the funniest story we've featured on Can I Sit With You? lately. Our thanks to ShinyGrape of American Goulash for letting us republish the tale (and to Liz Henry for discovering it).

Please remind your kids that anyone can get lice. The only real difference is whether you have to deal with them yourself, or can pay someone else to get rid of them.

This is a particularly timely story, given that Mali's school is embroiled in Lice Wars: The Second Coming. I now bring her in five minutes early so that her teachers have enough time to give that curly mop a thorough cootie-check before she enters the classroom.

So far, nothing. Whew. I'd hate to have to shave her head on the day she turns four-and-a-half:

Monkey, Interrupted

5.23.2009

We Hike

We like to hike. We like to climb. We like our kids to hike and climb.

Since we live in the Bay Area, we can hike and climb in a different park every day, should we want to. Which is a good thing, since the kids' Memorial Day Weekend is four days long, and hiking and climbing is one reliable activity our family can do together.

Scenes from the first two days of the weekend:

Briones Regional Park

Briones Hiking Crew, Lafayette Ridge: Front View

Castle Rock State Park
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Castle Rock State Park
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5.21.2009

What's Going On

We have become a bit more about the proclamations and features and a bit less about the journaling in this space, so it seems. But I don't want to forget:

Leo's triennial IEP was a big success. All of his services were retained for the summer and the upcoming school year: speech, occupational therapy, 1:1 aide, behavioral program supervision at home and at school (and for two weeks during the month between summer and regular school), bus. Every one of the ten educators and therapists around that table was on my son's side. It was a delightful feeling.

Mali stopped wearing pullups at night. She probably could have stopped months ago, but I just could not bear the thought of washing more than one set of sheets each day. Still not used to the feeling of a soft little bottom instead of a tough diaper under her jammies, when I pick her up in the morning.

Seymour's work got nominated for a (Northern California) Emmy. We went to the awards ceremony this past weekend. He didn't win because the judges were high but the event itself was sure a lot of fun! Who wouldn't want to party all night long with a bunch of news and weather anchors? And Jennyalice came over to relieve the babysitter at 9:30 so she could drink all of our absinthe and we didn't have to pay for five thousand hours of babysitting.

Mali didn't get in to our local Spanish Immersion school for kindergarten. And I'm okay with that. It's halfway across town, in a totally different direction than Iz's or Leo's schools, and our local school is good plus I already pass it six times a day. Also I am not-so-secretly hankering after a stereotypical first day of kindergarten -- one where we get to meet some neighbors. My kids have never gone to a neighborhood school, Leo's kinder class was a disappointment from the day one, and Iz finished kindergarten a year early.

Leo had a decent blood draw last week. I used a visual schedule with a "snack" icon following the "doctor" one, which helped him be upset only during the procedure rather than before and after as well. (It still took three of us to help him comply.) Also the ever-patient Jenijen walked down from her office on the floor above the medical office, and sat on my girls during the procedure -- otherwise Mali might have spent Leo's blood draw time trying to convince every patient in the lobby that they needed to wear disposable water cups as hats.

The weekend before that, Leo had a fantastic two days at camp. He almost jumped out of his pants with excitement when he realized where he was going! His aide said that our boy was *definitely* ready for week-long summer camp! It's so great to see that kid be so damn happy in that safe, dedicated, but non-therapeutic and purely recreational setting.

Seymour's parents arrived just in time to join us in taking Leo to camp, then stayed through Mothers Day. This was the first time they'd been able to visit us in over a year. They both looked great, and Seymour's mom looked extra-healthy and gorgeous with her new super-short haircut. She wasn't convinced the look was right for her until Iz declared that she looked like Jamie Lee Curtis. Now my MIL thinks she's going to keep her hair as is (as she should).

I realized that logistics and the BlogHer conference were not compatible this year. Serious sadness. But I sold my ticket to a woman who was quite pleased at the reprieve (for those of you who don't know, the conference sold out in about five minutes). There's always next year.

...and I took all three kids back to Costco yesterday. There's no way in HELL I was going to let one bad experience keep us down, plus I had so much good advice under my belt! We made it through just fine.

5.19.2009

The Agents of L.U.S.T.

Or, how our friends and family have my autistic son's back.

L.U.S.T. The League of Unrepentant Straw Thieves. A grassroots, volunteer-only organization dedicated to a single mission:

Swiping drinking straws to support my son’s straw habit.


That's my most recent BlogHer post. For those who are stimmy and/or obsessive, and the people who love them.

5.16.2009

My Kid Has Autism: Now What?

If your child has recently received an autism diagnosis, you're going to want some answers to your questions: Why? What can I do? What does this mean for his or her future?

You really won't know until your child's diagnosis is complete. If that diagnosis is based purely on a pediatrician's screening or a developmental evaluation, then it is only partial. You need to find out if there are any genetic or neurological components, seizure activities, or brain abnormalities contributing to your child's autism.

You need a referral to a pediatric neurologist.

Your pediatrician may not make this referral on their own, because regular pediatricians are not always aware of the extent to which autism and autistic-like conditions should be evaluated. If you are not given this option, you'll need to press for it. (Another potential fight, I know.)

We were lucky. Leo's pediatric neurology referral was part of his evaluation at the Stanford Autism Clinic. The clinic staff referred us to an on-campus pediatric neurologist. This is what that doctor recommended for Leo:
  1. A genetic workup to rule out any of the many chromosomal conditions that can lead to, be comorbid with, or mimic autism.
  2. A pediatric neurology assessment, including a general exam and family history.
  3. An EEG to monitor our son's brain for irregular electrical activity (some kids diagnosed with autism actually have seizure disorders).
  4. An MRI to look for structurual abnormalities in the brain, such as demyelination.
The EEG was a struggle, but the MRI was done under general anesthesia so logistically if not emotionally easier.

The results: of course my son had no chromosomal or brain structure abnormalities. He had a bit of irregular electrical activity, but it was consistent with patterns seen in other autistic people.

The tests didn't tell us why Leo has autism, but they did rule out many potential causes and typical physiological issues. With no answers, no more "but what if he has?," our faith about continuing to pursue 1:1 behavioral therapy -- the only proven method for helping kids like Leo -- was renewed.

Organizations like Generation Rescue proclaim to know why your child is autistic, and what you can do: let them rescue your child from autism! Unfortunately they are full of shit, though not intentionally. While a small subset of children may in fact be helped -- though there is not yet any unbiased evidence supporting this claim -- "We might be able to help your child a little bit if you're one of the lucky ones" doesn't rally frightened parents like "We can cure your autistic child!" does.

The bulk of GR's focus is not on detailed diagnoses or helping to gain skills, but on these biomedial and dietary "cures." I think most of the biomedical supplements Leo used to take were a racket.

Some do have merit. Leo still takes daily doses of cod liver oil, calcium, probiotics (though we're tapering those off), and autism-specific multivitamins from Kirkland Labs. We retained those only after consulting with a medical dietician about properly supplementing my son's self-limited diet.

And while I think there's no harm in trying the GFCF diet (even though it didn't work for us), you need to know that it is a lot of work, especially during the initial transition from a regular diet, and because so many autistic children have limited diets anyhow. You also need to be serious about it for at least one year.

Even before your child's autism diagnosis is complete, you need to decide how you're going to help your autistic child make sense of this world. Behavioral therapy is the best choice, and you can do it *even if* you decide to swallow Generation Rescue's very expensive pills. But if you have to make a choice, put your money (or your school district's money) on the approach based on evidence, not testimonials.

5.14.2009

Gwendomama Fund: Make a Real Difference for a Real Person

Gwendomama is one of my favorite people and bloggers. She is a loud-mouthed, small-business-owning, straight-shooting, food-loving, empathetic woman and dedicated mom. She is a wonderful friend to folks both inside and outside of the computer, to parents who advocate for special needs kids, and especially to parents who -- like her -- have faced the unimaginable in losing a child.

The unimaginable happened to her again. Last month, she became a victim, and to literally add insult to injury, she has found herself in a financial hole. Please, please help us help our hardworking friend gather funds for her and her children's immediate needs: food, rent, utility bills.

We are bloggers. Our superpower is connectivity, and when we use that power for good, we can save and change the world. Please forward, blog, connect, and -- especially -- donate. The campaign will end next Friday, 5/22. No amount is too small, and the sky's the limit. Thank you.

updates (because the widget doesn't update consistently):
  • 5/15 | 12:15 PM We have raised over $1000 so far, from 40 generous people, many of whom are scraping by, themselves. Blogosphere superheroes, I heart you!
  • 5/15 | 6:00 PM: $1,765 from 59 contributors!
  • 5/16 | 1:00 PM $2,240 from 70 contributors. Zowie!
  • 5/18 | 7:30 AM $2,545 from 85 contributors. Four more days, thank you and keep it coming!
  • 5/19 | 9:00 AM $2,940 from 96 contributors. Surely we can push it over $3K today?
  • 5/20 | 5:30 PM $3,310 from 103 of the awesomest people ever linked by the Blogosphere. Two days left!
  • 5/22 | 8 AM $3,450 from 107 scions of amazingness. Fundraising ends in 13 hours, so please give now if you can.
  • 5/22 | campaign over: Volcanic thanks to the 108 of you who contributed to the Gwendomama fund; you gave us $3,475 reasons to believe in the Blogosphere!
Click on the widget to contribute money DIRECTLY to Gwendomama's PayPal account. Click the COPY tab to get the widget embed code:

Not a Huge Fan: Autism and Biomedical Interventions

A mom from a local, general parenting egroup sent out an email about her new naturopath, and mentioned that "he treats autistic children, too." This doctor just happens to be Leo's former DAN! doctor, Dr. Prattle. Here was my response:

Dr. Prattle is an advocate of the scientifically unsubstantiated "biomedical" approach to treating autism, which involves dietary modification as well as enormous quantities of supplements, creams, injections, and sometimes chelation to remove heavy metals. It is an incredibly intensive and expensive endeavor.

He also makes recommendations for his autistic patients' sensitivities to be treated through a technique called Bioset, of which his wife is a practitioner, and to whom he refers patients -- a ethically questionable practice, but not one that families in shock from an autism diagnosis are likely to question.

The only proven methods for helping kids with autism gain skills are individualized 1:1 therapies, like Applied Behavioral Analysis, Floortime, or RDI. These are also intensive and expensive. Families with newly diagnosed autistic children might want to reserve their energies for methods proven to help their children, and explore biomedical interventions only if they have the extra resources.

Now, I personally know at least two families who swear that Dr. Prattle has made a difference for their children. I know many others who swear by the dietary modifications, such as the GFCF (wheat-free, dairy-free) diet. [Note: Dr. Prattle's testing revealed one of these children to be truly sensitive to wheat and dairy. The same testing showed no such sensitivities for Leo, but Dr. Prattle recommended that we pursue full-fledged biomed/dietary approaches anyhow "because some sensitivities just don't show up on tests."]

I also know that my son's ABA team, who have been working with severely autistic children for ten and even 20+ years, swear that they have never seen any any benefits from Biomedical interventions. [Note: This opinion was given to us six years ago, when we were starting Leo's home ABA program. His team knew that Biomed is mostly time-consuming rather than harmful, and trusted that we'd find our own way eventually.]

If you or anyone you know is reeling from a child's autism diagnosis, the best thing to do is start making connections in your new (and totally ass-kicking) special needs parenting community. Join local special needs parenting boards (e.g., http://groups.yahoo.com/group/peninsulaparentssnk/), join local parenting support groups (like our own SEPTAR, www.septar.org), and read the blogs of people in the autism community, especially those of parents who've been there before you and have made peace with -- and love -- the child they have, rather than the child they thought they would have.

Bubbly Leo
Most importantly: do not let fear override your gut when it comes to making the best decisions for your child.

Please feel free to contact me, or have your friends contact me, if you have any other questions. I mean that sincerely.

5.13.2009

The ExplOratorium Gets All the Gold Stars

Two days ago, San Francisco's Exploratorium hosted an exploratory Autism/Aspergers Family Night. The goal was to help ascertain the needs of certain Exploratorium-adoring families who can have a hard time being *at* that wonderful science center, and how best to accommodate said families when the Exploratorium moves pierward in 2012.

Admission was free. The event was fantastic. Leo and the girls frolicked. I was floored -- and so, so grateful. I've never seen a non-autism organization put so much effort into meeting the needs of my son and his friends. My faith in humanity has been restored.

There are so few places we can go as a family where Leo will enjoy himself, and where we needn't worry about a scene if his enjoyment ceases. Hiking, swimming, the Monterey Bay Aquarium on a slow day, the Arboretum ... that about covers it. There are many places Leo tolerates, but few in which both he and his sisters get to have fun.

At this event, our entire family got to have fun. Unbridled, rambunctious, kooky fun. Hours of it.

Whole-Family Fun at The ExplOratorium

This success didn't come without significant, almost herculean effort to accommodate Leo and his friends. The Exploratorium brought in Bryna Siegel and her UCSF Autism Clinic crew to plan, and to staff. (Side note: It was amusing to see Ms. Siegel instructing Mali on using an exhibit properly; autistic and defiant behaviors can both be handled with similar techniques.) Exploratorium staff also volunteered their time.

As a very thoughtful bonus, dinner and snacks were provided, and they were mostly GFCF. Representatives from both Mariposa Baking Company and Acre Catering donated their time to serve the food, which was all super-healthy and delicious -- Seymour and I tucked in. Unfortuntely our picky boy only liked the toast wedges, but I always bring food for him so it was no problem.

Fortunately and un-, they limited the number of attendees. I feel for the numerous families who had to be turned away, I really do -- especially because I know several of them. But limited attendance also meant a relatively mellow audioscape (they provided earplugs for the truly sensitive) and lots of personal space, and no typical Exploratorium crowds or noise -- so no overwhelm and resulting acting out. It was thrilling to see Leo running around, exploring, and investigating without us having to worry about him bumping into people or stomping on toddlers.

Leo Befuddled by Reversed Audio Input

Leo explored like crazy. He loved being in a space full of manipulables that were all about tactile, audio, and visual feedback. (He was also excited about "going on an airplane?" because he thought the hangar-like space was an airport. We spent a lot of time explaining that we were already at our destination.)

My son's experience was made even easier by the planners, who understood that Leo and his friends are not all alike in their needs and interests, and planned three different pathways/walks: sensory-based, reading-based, and an organization-centric. Each path came with a map, each station on the path was marked with color-coded balloons. The staff gently encouraged but did not interfere, and the kids the interacted with exhibits in their own ways. Leo, for instance, was as happy to play with sand wherever he found it, inside or outside the exhibits.

OooooOOooOoooh: Sand on a Spinning Wheel

Leo absolutely loved the Exploratorium, and so did his sisters. But we might never have risked a visit, had we not been given the gift of Autism Family Night. The staff said that it's not as busy in the late afternoons. We just might show up.

Exploratorium staff, you have my sincere thanks and gratitude. Please say you'll do it again!

5.11.2009

New Can I Sit With You? Story: The Injustice of a Test

New Can I Sit With You?: Stepanie Chin's The Injustice of a Test.

In which an advanced placement-tracked ten-year-old dissociates on seeing two classmates thrown out of enrichment classes and realizing that, in school, your test scores are your identity.

http://www.canisitwithyou.org/?p=417

We're always looking for new Can I Sit With You? stories, so don't forget to send yours in.

5.09.2009

Better Than Flowers on Mother's Day

For New York City area mamas and the people who love them:

Mamabration!

Sunday, May 10, 2009
6:00pm - 8:00pm
Bluestockings bookstore
172 Allen Street between Stanton and Rivington
New York, NY

Get down with these irreverent and thought-provoking mamas as they read and perform in celebration of motherhood:

Christen Clifford is a writer and performer in New York. She has written for Nerve, Salon and the Huffington Post. She is a storyteller for the Moth and her solo show BabyLove ran for three months off Broadway and was a critic’s pick in Time Out and New York Magazine. She is married to writer McKenzie Wark and is the proud mother of Felix and Vera. More at www.christenclifford.com, and twitter.com/cd_clifford.

Ayun Halliday is the author of four self-mocking memoirs, No Touch Monkey! And Other Travel Lessons Learned Too Late, The Big Rumpus, Job Hopper and Dirty Sugar Cookies: Culinary Observations, Questionable Taste, and a brand spanking new children's book, Always Lots of Heinies at the Zoo. In her spare time, she is the Chief Primatologist & sole staff member of the quarterly zine, The East Village Inky, as well as BUST magazine's Mother Superior columnist. Ayun lives in Brooklyn with her husband, playwright Greg Kotis and their increasingly well-documented children. Dare to be Heinie and visit www.AyunHalliday.com!

Born in Portimao, raised in Rockland, and residing in Brooklyn, Tomasia Kastner emerged from New York City's spoken word renaissance, where she shared the stage with Saul Williams. A captivating lyricist, Tomasia has brought audiences to their feet at such esteemed venues as the Brooklyn Academy of Music and Hammerstein Ballroom. Tomasia opened up for Gil Scott-Heron, has performed with the likes of Me'Shell N'DegeOcello who called her "…too funky..." and has shared the stage with Mos Def who exclaimed "She's really good!" as well as Mums the Schemer (Oz) who declared, "She's like a female Rakim!" Tomasia recently released an album entitled Death of the Fresh with DJ Stef-Eye as their latest incarnation FISHEYE.

As Sharon Kwik has a severe case of writers' block when it comes to composing bios, her four year old son, Macèo, has written one for her: "I am a nice woman. I work, I play, and I play with my son."

Victoria Law is a writer, mother, and photographer. Since 2002, she has worked with women incarcerated nationwide to produce Tenacious: Art and Writings from Women in Prison. Her writings have appeared in Hip Mama, off our backs, make/shift magazine and Left Turn. Her new book, Resistance Behind Bars: The Struggles of Incarcerated Women is the culmination of 8 years of research, writing and listening to the stories of women incarcerated nationwide.

Jennifer Silverman is a recovering journalist, mama of two rambunctious sons, agitator and co-editor of the forthcoming anthology My Baby Rides the Short Bus (PM Press, 2009). Her writing about mothering her son with autism has appeared in Hip Mama and off our backs, and the ‘zine version of Short Bus, among others. She resides in Queens, NY.


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5.06.2009

Attention Costco Shoppers: You Have Destroyed My Faith in Humanity

Had to go to Costco this afternoon. Had to. I needed to buy a bushel of apples for a conference that SEPTAR is hosting in two days, plus snacks to give Iz and all thirty of her classmates caloric boosts to help them plow through the mandated silliness that is STAR testing, plus stock up on the treats that Seymour's parents prefer as they're coming to stay with us in less than 36 hours.

I've had good luck taking my three kids to Costco. Leo likes to ride in the big cart and get straws from the restaurant area. Mali likes to make new friends every five yards. Iz likes to cruise the sample carts and tell me which food items we simply have to buy. It's fun. Most of the time.

Today I needed to buy more bulky items than I usually do, so Leo had to walk for the last half of the shopping. And Mali was being a serious PITA* to Iz, who lacks the self-regulation to move away instead of retaliating. The three were fairly roily by the time we reached the checkout.

At which point Mali lost it, because they had balloons and she wanted one and she couldn't have one. She turned on the tears.

So then of course Leo lost it. He started sobbing, with big tears of his own, and smacking himself in the head. This scared Mali, so she cried harder. This made Leo more upset, so he kept trying to reach Mali in her basket seat, to hit her and make her be quiet.

They were really, really loud. They drew the attention of every single person in the crowded space between the checkout stands and the exit, many of whom watched/tried not to appear as if they were watching as I struggled to push the overfull cart to the side while trying to keep Mali and Leo apart, hugging and kissing and reassuring them to see if I could help them calm down.

At least forty people walked by. Not one asked if they could help, even as Leo's attempts to hit his sister grew more obvious and his crying grew louder.

I was able to get Mali to take a deep breath and stop wailing, and resumed our shuffle to the exit. We then had to walk across the parking lot to our car. It was a visible struggle to push the weaving and uncooperative cart with one hand while holding onto Leo with the other. He was still determined to get his little sister. Iz, bless her, kept stepping in to deflect Leo's maneuvers, but her actions made pushing the cart even more difficult. At one point I resorted to hopping on one foot and pushing the cart with the other. All as people kept passing us on either side, pretending we weren't there.

We made it to the car and I got Leo and Mali strapped into their seats. That's when I started crying, too. Iz was concerned, but seemed relieved after I told her, "Yes, I'm crying. That was really hard. You were very helpful. Thank you."

Please know that if you see a child who looks too old to be having a tantrum going into full tantrum mode, there's a good chance that child is autistic. It's okay to watch and see if the adult has the situation under control.

Please know that if you see someone who looks like they might need help -- as opposed to someone who is disabled yet going about their business -- please ask if you can be of assistance. Even if they tell you "no, thank you" or even if they're hostile in refusing your offer, think of what would happen if they really did need help and you didn't offer it because you were too afraid of offending them or interfering. Were those people at Costco waiting to see if one of us actually got hurt, first?

Leo has been doing so well on these kind of excursions, today excepted. I don't want to stop bringing him along. Learning to tolerate routine errands is critical to his social and cooperative learning. Leaving him at home even more than we already have to do fractures my kids' perceptions of sibling- and family-hood. Most importantly, Leo is a social boy. He doesn't want to be a shut in.

But we don't always have successes. Sometimes, like today, we have catastrophic failures. And when that happens, it is doubly difficult when our community fails us, too.

My hands are still shaking, hours later.

*Pain in the ass

5.05.2009

My Child Has Autism and I Vaccinate

That's the title of today's BlogHer post, in which I also come out about watching Law & Order: SVU.

If you've read this blog for the last six years, then you'll be familiar with how my attitude towards vaccinations has changed from anti- to pro-, and the very good reasons why.

And if you do feel moved to comment (and I hope you do), please remember that respectful disagreement is the preferred M.O.

http://www.blogher.com/my-child-has-autism-and-i-vaccinate

5.01.2009

Free to Choose Buddha or Barbie

Morning and afternoon school runs are some of the most satisfying times I spend with my kids, and not just because they're strapped into their seats and can't hit each other. Leo sits in the back, creating atmosphere by happily bopping to whatever music is on (or he's making). The girls consider it Forum with Mommy Rosenberg time; it's when we have some of our best discussions.

This morning, as we were halfway down our hill, NPR announced that David Souter would be stepping down from the Supreme Court. "Woo-hoo!" I yelled, not because of any antipathy towards Souter, but because of President Obama's pre-election declaration about what he would look for in future justices:
"We need somebody who's got the heart, the empathy, to recognize what it's like to be a young teenage mom," Obama said. "The empathy to understand what it's like to be poor, or African-American, or gay, or disabled, or old. And that's the criterion by which I'm going to be selecting my judges."
"Yeah, baby!" I crowed, "Let's put some liberal moxie back into that court!"

Which of course led to a discussion of what is liberal and what is conservative, and no, eldest daughter, belonging to a Unitarian congregation in town does make our town liberal. We live in a mixed town, one with representation from various classes, cultures, countries, and political creeds, and that's the way we like it.

I told her that while it's nice to be around people who think just like we do and hold the same values, we don't learn as much that way, and we can also feel pressured into behaving a certain way. She said, "But we're liberals! Liberals don't do that!"

I told her that liberals are supposed to believe in personal freedom, but that liberals can be every bit as conservative as conservatives when it comes to herd-think.

I told her that in certain liberal strongholds, I might not feel entirely comfortable sending her little sister to a party dressed in her favorite Dora the Explorer gown, clutching a Barbie doll. I would both feel -- and fight -- the need to explain that the gown was a gift from her grandmother, the doll was a hand-me-down and oh my god surely you don't think I participate in mindless consumer culture because we don't even let our kid watch commercials!

I told her -- with the loaded, anxious sincerity of a mother to a blossoming tween girl -- that it can be really hard to be yourself, without apologies or explanations.

And then we were cut off by another driver in front of her school, saving her from some truly maudlin preaching on The Value of You.

I remained in Role Model mode, reined in my impulse to shriek at the other car, and told Iz, "We all have impatient days. Well, everyone except Buddha!"

"Even he had impatient days before he reached Enlightenment," she chirped back, and bounced out of the car.

We are reaching a tipping point, the two of us. My ten-year-old daughter and me. There is still respect and love and wisdom (and occasional irritation) flowing from both sides. Does it have to end? Do we have to become victims of stereotypical tweenhood polarity?

I hope not. I am hoping for our own versions of liberalism and Enlightenment, instead.

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