12.31.2009

Leelo Leading a Family Singalong

Leo might not be the most assertive member of our ensemble, but he's the one improvising and leading the spontaneous family singalong:



Seymour and I spent New Year's Eve 1999 with his parents, his brother James and our very pregnant SIL Bree at Emeril's Las Vegas, where we dined for three plus hours while everyone cooed about our perfectly gorgeous and angelic baby girl. We then pulled a Moses/Red Sea maneuver, screaming at the New Year's Eve revelers on the bridge between the MGM Grand and New York New York to part ways so baby Iz and Bree's baby belly could make their way to the other shore without being crushed.

Tonight, there'll be a bit less excitement, but we'll be a family of five -- five! -- hunkering down and watching silly movies and enjoying our own version of togetherness. I'd rather be in 2009 than 1999, honestly. 2009 was a good year for our family.

Here's cautiously hoping for more happiness for our family in 2009, and openly wishing extreme happiness upon the rest of you.

Cheers!

12.23.2009

Scenes From a Family Who Travels



 

 

 Don't let the swimming kids fool you, folks -- it was 51°F outside. But the pool and hot tub are heated and hey, it's Vegas (proof in the skyline behind that happy happy otter/dolphin boy). People do unexpected things. 

Leo is having a good day today, still. The visual schedule, which Seymour had to remind me to bring (frazzled travel prep brain) has made it much easier for him to adapt to a new environment, and moderate any displacement anxiety. He is soothed by his favorite dinosaur puzzle from our friend Charlie, and a couple of new sensory toys. We have swimming and hiking out the back door, so all that energy has a place to go. We are still very much in a 1:1 me-or-Seymour scenario, but his outbursts have been few, entirely understandable, and easily defused.

Seymour and I are tired but pleased, and so grateful to get spend time with his parents. Fingers crossed, so tightly. If this trip succeeds, what could Leo succeed at next? We're trying dinner out with the grandparents tonight. They have no problem with Leo needing to leave early, but definitely want to make the attempt.

So grateful for such a supportive family, both sides, every tier.

12.22.2009

Happy Boy at 30,000 Feet


Couldn't ask for a better, happier traveler at this moment in time. Now we just need to work on his slightly demonic younger sister. P.S. We are on the plane right now and I heart Virgin America Air.

Five Sets of Wings

Today we will be flying as a family quintet for the first time since the Can I Sit With You? Annex Theatre show in April, 2008. We will be staying with Seymour's parents as a family for the first time since Thanksgiving 2007.

I am nervous. I am cautiously optimistic. I have packed the full arsenal of Leo-happiness triggers. I am open to suggestions from anyone who knows about good activities for kids on the spectrum in beautiful Las Vegas.

Nervousness: Leo's been doing less well than his almost beatific well of 2009's January through November. He was still doing reasonably well when December started, so we decided to take a chance on a full-family trip (the kind where Mali doesn't have to ask, "Is Mommy coming too?").

It seemed like Leo's behaviors spiraled downward the day after we booked and paid for our flight. He started being fidgety, loud, and doing a lot of rapid-fire and ceaseless raspberries whenever he's seated. I didn't really notice this until Rook and I took our four kids to see Fantastic Mr. Fox, and Leo's noises and behaviors drew looks from other members of the audience.

He's also started to bust out with occasional hopping flailing octopus episodes where he decides that the best way to inform me that he dislikes an activity or wants to get my attention is to thwack me as fast and as many times as he can. At home I back away and tell him NO very loudly and firmly; in public places like post offices I have to keep ahold of him lest he bolts, and get pummeled.

I really, really hope his spitting and pummeling don't happen on the airplane or in the airport. But just in case, I am carrying a copy of the U.S. Department of Transportation's Nondiscrimination on the Basis of Disability in Air Travel (note: PDF) and will wave the following excerpt under the nose of anyone who complains about Leo's behaviors:
§ 382.31 Refusal of transportation.
    (a) Unless specifically permitted by a provision of this part, a carrier shall not refuse to provide transportation to a qualified  individual with a disability on the basis of his  or her disability.
    (b) A carrier shall not refuse to provide transportation to a qualified individual with a  disability solely because the person’s disability results in appearance or involuntary  behavior that may offend, annoy, or  inconvenience crewmembers or other passengers. 
This is not a preemptive #suckit for the other passengers; it's a way of guarding Leo's rights. Air travel means playing a lottery in reverse: usually you'll win, but sometimes you lose and get stuck near a crying baby or a kid like my son, neither of whom are responsible for their behavior, both of whom are likely in great distress,  each of whom have as much right to be on the plane as you do -- and who are  accompanied by freaked-out adults doing their best to calm the kids down, because we so do not want to piss off an entire planeful of people.

** Deep breaths. Not hyperventilating.**

On the cautiously optimistic side, he's using a lot of great language. Some of it makes us really sad; he enjoys thinking and processing and reciting items in pairs, and has a hard time mentally adjusting when we tell him that some of his favorite pairs of people are no more, like Jo Spanglemonkey and Manny, or my mom and dearly missed dad. He then goes over the pairs again, looking at us quizzically, as we remind him yet again that Pepere isn't here anymore.

He's also starting to verbalize whether people are present or not. The same sadness applies when he keeps insisting, "Grandma is at home. Pepere is AT HOME," and I have to tell him, again, that Pepere isn't here anymore (I don't know that "dead" makes any sense for him). Although I do appreciate his growing ability to recognize when house guests are no longer staying with us, e.g., "Badger is at home! Moomin is at home!" Those wheels are turning.

I hope his continuously expanding language skills and love for his grandparents (and their love for him) factor into a good, or at least a manageable, visit. We used to be quite the traveling family, and Leo used to be quite the traveling boy. Every single one of those trips was to visit or travel with family and friends. Leo usually loves being in airports and flying on planes. I'd like to see us inch back towards the traveling lifestyle that our sweet, social boy deserves -- but only if he can tolerate it, only if he wants to.  This trip will be telling.

12.21.2009

In Which I Stalk An Amazing Young Man

I've kept my latest BlogHer post in my back pocket for the past two years, even though the force known as Susie Bright encouraged me to write about it when we were all oversharing at last spring's Woolfcamp. The story? It's about how I stalk my birth son on Facebook:
Of course I stalk my birth son on Facebook. How could I not? His barely-open adoption slammed shut fifteen years ago after his mother suddenly took ill and died, and the gods of irony handed his father the closed adoption he'd always wanted. I spent years hoping for information but listening to cricket chirps -- until two years ago, when a cynical Facebook search turned fruitful: he had a limited public profile! I've been checking in on him weekly ever since.
I finally wrote it out after Facebook exploded everyone's privacy settings, and I gained access to his Wall. It was too much OMG to keep to myself! Also, acquaintances who knew about my birth son kept asking if I wanted to see the new birth parents/children reunion reality show, Find My Family. (My answer: hell NO. He doesn't know he's adopted, there will be no reunion, stop sticking bamboo slivers under my fingernails please.)

But the BlogHer post wasn't the first time I'd written about my birth son -- I blogged about him in 2005, when Facebook didn't exist and he was still lost to me:
When he was still very small, his mother died. I found this out while my husband and I were trying without success to have children of our own. In my anger, I cursed the universe that allowed my birth son to be a motherless child, while I remained a childless mother. I simmered down after the joy of our first child's birth, but still wonder how that boy will feel if he ever finds out that he could have had contact with another mother during all those lonely years.
(Note that I was still in thrall to DAN!/curbie/autism stigmatization at the time, and also complained about giving up an NT son and then having one with autism. We all learn and grow, right?)

People have mostly been kind about the story, and said kind, supportive things. Jeanne Sager even wrote her own post about it, on Strollerderby:
The sudden opening of Facebook pages scared plenty of people into purging their pages of their drunken idiocy, but for one mother who gave up her son to adoption, it was a gift.

While you were trying to figure out if Mark Zuckerberg was indeed drunk or stoned, Shannon Des Roches Rosa was lovingly taking in every last detail of her biological son’s life, piece by amazing piece.

A commenter on BlogHer has suggested that I investigate the matter more fully, and try to find out if he knows he's adopted. Another hell no. If it's meant to happen, it will. The means are available. I will leave it entirely up to him, mostly because of stories like Beth Broecker's Salon.com story about being stalked by her own birth mother:
At age 6, when I first learned I was adopted, I cried and cried, not because I wanted to know who my birth parents were, or because I felt lost or empty, but because I wanted to have been born to my parents. I loved them so completely that I didn't want any mysterious thing out in the world to mean that I was less a part of them.
I also think that, were such a reunion to happen, I would like it to happen more gracefully and with more professional courtesy than those on Find My Family. So would SocialWrkr24/7:
Also, this episode was the beginning of my issue with the hosts because I thought it was pretty obvious that the adopted daughter had NOT been looking for her birth parents. She said she thought about it and that her adoptive father had encouraged it - but she hadn't done so yet. Obviously she had her reasons - but all of a sudden there was Tim Green at her door with the "exciting" news that her "mom and dad" had been looking for her! I felt like the poor girl looked shell shocked through most of the reunion process. This is one of the many reasons that I feel like some kind of "professional" would be better suited as the host. Reunions are wonderful on TV, but in reality that can bring up all kinds of complicated mixed feelings. 
And finally, there are the good folks on Reddit, who framed it in the context of privacy violations, and were 45% creeped out. Sigh. But they also thought the story would make a good movie:
ravenrue: 
lol. I enjoyed it. Makes me think it could be made into a movie.
Golgo13:
Tim McGraw - Evil Adoptive Dad
Hilary Swank - Dead Adoptive Mom
Michael Cera - The son
Cameron Diaz - Artsy Mom
Who is with me?
Me, I'm just glad the story's out there. Who knows, maybe he will come across the BlogHer post one day and recognize himself despite the scrubbed and altered details, and pursue contact. I certainly wouldn't mind. He seems like a very cool young man.

12.15.2009

I Don't Give a Straw About Your Autism Stereotypes

If I had my own reality show, I'd  do a Mythbusters spin-off called Exploding Stereotypes, in which my team and I would travel the world, methodically exploring stereotype histories and flaws. I'd want to start with autism, of course. Should I begin with the "special gifts" savant stereotype, or with the "no empathy" stereotype? How about the latter?

Because people with autism or Asperger's can have difficulty interpreting body language cues, they are stereotyped as unable to feel empathy. So untrue! My son is not much for conversation, but he can be highly sensitive to my body language, snuggling with me when I'm physically slumped and low, dancing with me when I'm happy. Ours is a genuine emotional connection.

Body language isn't required to feel empathy, anyhow. How else to explain the actions of the gracious and thoughtful Lindsey Nebeker, who gathered and sent Leo his latest supply of green Sbux straws,  even though she was in the middle of an interstate move? L.U.S.T., the League of Unrepentant Straw Thieves, is honored to have Lindsey join our ranks. And I am grateful to her for living a stereotype-exploding life.


So many straws! Leo says Thank You, Lindsey!

12.14.2009

Every Busy Mom Is Busy in Her Own Way

So this is what having a slightly-more-than-part-time job means to me: I have finally reached my personal busyness limits. There is no space for cramming, no staying up late to finish what needs to be done because I already am staying up late, sometimes until 2:30, and still running into a daily wall of personal fail. "Taking a break" now means watching an episode of Glee while doing laundry. "Taking it easy" means going to bed before midnight. It's fascinating, invigorating, and soul-deadening all at the same time.

But, being busy gives me a good reason to say No, though I am still struggling with actually saying the word. Being busy also makes prioritizing a hell of a lot easier.  Two weeks ago, while I was on deadline, my mom called. She was staying with us for Thanksgiving and was out running errands in my car, so I figured she was calling to check in. Except she was calling to tell me that she'd been the victim of a hit-and-run accident.

Former me might have freaked out. Busy me blinked, then asked if she was okay. She was (whew). I asked if the car was drivable. It was. I asked if everything was under control, or if she needed my help. It was, the police were on site, and she didn't. I thanked her, the stars in the heavens, and went back to work. Everything turned out fine, she was unshaken, they caught the other driver, and I'm tooling around town in a snow-white minivan courtesy of the perpetrator's insurance while my own car gets fixed. All of which would also have happened, had I gotten agitated. But I no longer have time to get riled about that which is under control. Thank you, busyness.

Busy me is both more and less in touch with my body. Three weeks ago, I sprained my ankle by walking down the street while on a work conference call -- but no one on the other line ever heard a peep (though Jennyalice, who was a few paces away, wondered why I started hopping up and down on one leg since we were discussing matters more administrative than incendiary). I was in control! That same afternoon, while attempting to demonstrate that the pain did not get to me and yes of course I could entertain my friend and all of our children while both chatting and serving up group snacks, I misjudged a pupusa location and flash-seared my fingertips on our cast-iron skillet. Clearly, the distraction of being busy doesn't always agree with my body.

Since my laptop lets me work anywhere, I have to be careful about reining in Busy Me. Otherwise, I'll try to fit in a bit of work while making dinner. While watching Ugly Betty with Iz or Totoro with Leo or Dinosaur Train with Mali. While doing laundry. While supervising homework. While helping Leo do puzzles. While decorating the Christmas tree. I thought I was being an able juggler, but this past weekend Iz complained that I work too much, that I'm always working, and she hates it. So I'm thinking about shelving the laptop between school pickups and bedtime. And slightly panicking about losing those valuable interstitial work minutes.

The biggest struggle so far, though, is self-judgment. I'm far from the most busy person in my circle. Yet everyone else I know seems to be juggling more, and hitting all their deadlines. Perhaps I know too many superhumans? I'm not sure. I do know this will only get more interesting. Seymour is going to start traveling a lot for work (everything he's doing is damn cool; I entirely support his going). Leo is only going to get bigger. Iz is coming up on teenhood (please God no). Mali is experimenting with unrepentant defiance (not just towards me but towards her teacher). What are we going to do?

But despite my time challenges, our family situation remains an awesome one. Our kids are sweet and funny, and genuinely caring beings. We have good friends. We carve out time for the events that truly matter. We laugh a lot, we eat well, we are warm at night. I'll give this busyness another couple of months. I'll put away the laptop in the afternoons. And then I'll re-evaluate, because I don't want to be too busy to enjoy the wonderfulness that weaves in and out of my life, every day.

12.11.2009

Where I'm Writing When I'm Not Writing Here

The busyness of the past two weeks has been a big wow. Lots of work hiccups keeping me & the rest of the team on our toes, a cool business trip for Seymour, a birthday party for Mali, lots of visits from relatives and friends, BlogHer parties, soccer tournaments for Iz, excellent behavior & new developments from Leo, and very little sleep for me. The result: I declared this past Sunday's tired "unprecedented." I didn't win anything, though, except the satisfaction of getting some decent writing out on other internet spaces besides this one:

On BlogHer, I interviewed Jen Silverman, Sarah Talbot, and Yantra Bertelli, editors of the wonderful new book about parenting our children with special needs, My Baby Rides the Short Bus. Here's Yantra's take on why the book matters:
I hope our book helps its readers to stretch their definitions of inclusion and helps complicate mainstream ideas around individualism that silence or obscure the ways children are connected to their families and societies. Inclusion is a process and the work is never ending.
On Body Impolitic, I described my unapologetic efforts to equip my daughters for a life-long fight against a culture that wants them to hate their bodies:
I do my best to teach my two daughters to celebrate their beautiful and very different bodies just as they are. I talk about any problems of my own in terms of health, not moral failure. I do not hide my body, nor make excuses for it. And I stock my girls’ everyday lives with strong, confident women who talk about their bodies with practicality and humor, because I believe a positive body image is learned, like table manners or martial arts.
On (Never) Too Many Cooks, I laid out a recipe for one of my family's favorite meals, Vietnamese Grilled Pork with Rice Vermicelli:
My kids call this scrumptious all-in-one meal "Vietnamese pork bowl." It's a crowd pleaser: gluten and dairy free, vegetable gateway for picky eaters, straightforward preparation, and its three-hour process is done in spurts with lots of interstitial free time to pull apart brawling children—and oh my goodness is it delicious. Even my picky son with autism can be coaxed into nibbling on one of the carrot sticks.
And on Can I Sit With You?, I got to enjoy the fruits of a solid month of badgering Michael Procopio for another story, as he sent us The Horror of Chitty Chitty Bang Bang (So I didn't write this one. But I did solicit, copyedit, and post it!)
As the two cute-as-can-be children of Dick Van Dyke’s character, Caractacus Potts, Jeremy and Jemima were the manifestation of my two greatest childhood fears — abandonment and replacement. Where did these children come from? I squirmed in discomfort every time they screeched, “Daddy! Daddy!” I simply could not accept that these were Mr. Van Dyke’s children, because as far as I was concerned, Dick Van Dyke was named Bert [from Mary Poppins] and already had two children.
Time for some sleep, though I once again failed to get to bed before midnight. I'll try to get up some details from the past two weeks, perhaps tomorrow.

12.07.2009

A Fifth Birthday Party for a Third Child

Mali's fifth birthday party was nine days ago. Half of the wrapped presents our lucky girl was given are still in the back of the car, a third of them are on the dining room table, and Mali opened up two -- one a cherished package of all possible sparkly accessories, from Jenijen & Willow.

This is how things have been lately. An avalanche of goodness that we're too overwhelmed to process.

I have to laugh, remembering Iz's 5th birthday party. She created her own superhero, Super Jill, who was superstrong and had a cape with magic gold dust pockets and could levitate objects, specifically evildoing egrets. Her party invitations were mix CDs fronted by an original Super Jill cartoon. Her favors were custom Super Jill comics/coloring books, with story by Iz and illustrations by me. My mom and I made her an actual Super Jill costume. There was a pinata, a bouncy house, 80 or so guests, and Chris Molla was the entertainment:



By contrast, Mali's 5th birthday party took place at a local bouncy house establishment. We booked it, 20 of her friends and their families showed up, we brought in cake and cupcakes, and everyone was in and out in two hours. Everyone also had a fantastic time. I suspect the only real difference between Iz's and Mali's parties was the level of adult involvement, not kid enjoyment. Lesson learned!


 

For Mali's party, the kids (even Leelo) decorated the party favors themselves: a blank jigsaw puzzle and packet of 8 crayons, in a custom-illustrated & be-stickered ziploc bag (thank you, teacher supply store).


Happy birthday girl Mali got a pink dinosaur cake (made by my mom, with scrumptious maraschino cherry cream cheese frosting). Seymour also made her chocolate cupcakes "just like Leo's."


The kids all jumped themselves semi-senseless, and then were revived by cake. Mali got to be the girl in the giant birthday chair to whom everyone sang Happy Birthday (and then shared her chair with Jennyalice's Lucy).

A much easier and still very joyous birthday party! I just need to figure out when we're going to open those gifts...


(As you can see, the adults had their own toys.)

11.27.2009

Four Empathy-Boosting Gift Books

Do people you otherwise love and respect still not get you or your child? Then I heartily recommend gifting them the new book My Baby Rides the Short Bus this holiday season. It is a diverse collection of truth tellings about parenting our wonderful, challenged, and challenging kids. While the stories spill over with love and hope and advocacy, they also illustrate our frustrations with the way other people see and treat both us and our children -- as well as with anyone who has ever said, "I don't know HOW you do it!"

Instead of trying to make us saints, the book shows that we are human. Throw it at the heads of everyone you love this holiday season!

Disclosure: I have a story in My Baby Rides the Short Bus. But so do Jennyalice and thirty other authors.

Three more books with empathy power, and which also make you a thoughtful gifter.

11.26.2009

Facepalm: Deaf Choir on Glee


I was so pleased with Glee's portrayals of people with special needs in the episode Wheels ... and then last night's episode thread about a competing Glee club from a Deaf school dripped patronizing treacle. Blech.

Meloukhia already wrote what I would write so I'll just quote (big lift, but it's a long post citing multiple fails, and this is from the end):
"Glee is finally allowing us to see the Deaf choir performing, I may have to give them some points for trying even though they are doing it very badly.

"And then, to my shock and horror, someone from the glee club started interrupting the Deaf choir to sing. Ok, now, I have not sung in a choir, but I consulted a real live person who has performed in choirs, and I was informed that, no, it is not actually conventional or acceptable to interrupt a choir while they are performing.

"Why was it ok here? How was it inspiring to watch the Deaf choir’s performance being interrupted and co-opted by the glee club? Because the Deaf choir were doing it wrong? Because “the poor impaired folk need normal people to fill in their defects,” as Lauredhel said when we were chatting about this episode?

"I wasn’t inspired or moved by watching the two choirs perform together. I was PISSED. Because it was framed as perfectly acceptable for the glee club to just jump in on another performance. And for this to turn into a Special Learning Experience, look at how they can all sing together and be happy! Yes, folks, totally erasing people with disabilities and not allowing them to perform is Inspiring! [emphasis mine -SR]

"The Deaf choir has been a running joke in this series. (Because everyone knows that Deaf folks can’t sing, or dance!) And now, in the scene where we finally had a chance to see them performing, they were treated with complete disrespect and condescension. They were framed as a failure, until the nice glee club came in and rescued them. But, you know, nice try, Deaf choir!

"Incidentally, check out Gallaudet Dance if you want to see actual Deaf people actually performing and being amazing in the process."
Note: I copied this post - sans Double Facepalm magic - from a comment I made on my original BlogHer Glee post.

11.25.2009

Mostly Thankful, Occasionally Thankless

We have a full house for Thanksgiving. My mom, her dog, siblings, nieces, friends. Support for Leo. A turkey in the fridge, a bag of potatoes, and some fresh cranberries. Not much planned beyond that. Not worried about it. It will all be fine. More than fine -- it will be fun. Or it had better be, because I recently wrote a post for BlogHer about how we're planning a reasonable holiday season. No pressure!

Here is Iz (photo by Barak Yedidia). She is not a little kid anymore. She cares about fashion though not to an irritating degree, yet with an understanding of how to put outfits together. She is smitten but not giddily so with a cute boy at school. The boy likes to hike and talk about science just like her -- dreamy. Oh, and he's totally open about his Asperger's.

She got her first letter grade report card last week. Her math grade was a C+, which was surprising. I told her that grades weren't all that important now, and that as long as she's keeping up with the comprehension, the study skills and top grades will come -- and that maybe she missed turning in an assignment or two (characteristic first trimester behavior for our girl). She insisted that she turned everything in, so I advised her to go talk to her teacher. She did, and a couple of days letter I received an apologetic email from that gentleman, saying that he'd misrecorded Iz's assigments, and that in fact she had an A+ -- the highest grade in her class. Heh.

She is a kicking butt at soccer and is really into it -- she wants to win, yes, but she's mostly interested in improving her skills. Seymour has been taking her down to a local field and teaching her technique, and she's been talking soccer every chance she gets with her Portuguese grandfather, who was a college soccer recruit. Soccer is teaching her the kind of patience she otherwise still struggles with at home (unless she's working through increasingly challenging levels on World of Goo). Without going into details, and while reassuring readers that we practice non-violent parenting, I relate the following exchange:
Squid: "I cannot be in the same room with her right now. I am too exasperated. *Sigh* How do you think Gandhi would parent a girl like that?"
Seymour: "I think he would beat her with a spindle."
Mostly her problems are topical perseverations (what would be called nagging in a typical family) and inability to back away from an argument, and our responding to her even after we've declared a subject closed. We will now follow through on those declarations, and not respond to her relentless rephrasings until she changes the subject in a non-loophole manner. I'll report back.

She does demonstrate a lot of love and empathy and thoughtfulness and consideration for others. Some of that is teaching, most of it is the core sweetness of a good kid. It makes her daily screeching sessions bearable overall, though rarely in the moment.

Last week's birthday boy is doing well with his food tolerance -- I got him to eat a couple of carrot sticks by using M+M chasers, and am optimistic. He makes a disgusted face with every carrot bite, but he did that with apples too, last year. Now he eats apples voluntarily and requires no bribe/reinforcer. Carrots could happen.

He has taken to scavenging through the girls' lunchboxes when he gets home. I don't mind as he uses great language in asking permission at every step, and it's a very engaged social activity that he enjoys. Usually he finds a sandwich crust or two. Yesterday he found an entire half sandwich, out of which he took two enormous bites before I could stop him -- because it was not the standard PB&J, it was tuna fish. Poor Leo who only eats six bland things and never any flesh! He retched but waited until I got a plate to spit it out. Then he asked for lots and lots of water.

He has also been eating homemade garlic bread, which by itself is not terribly nutritious or exciting -- but he's been letting me dip it in increasingly large puddles of tomato sauce beforehand. This, also, bodes well for a potentially expanded diet. Which in turn bodes well for restaurant options and socialization and his happiness, as he will not need to stress out about whether or not his preferred foods are available.

He's still having an accident of the stenchful variety, almost every day. His teacher and I are frustrated. Control doesn't seem to be the issue (he demonstrates excellent control all the time) so Supervisor M and I think it might be behavioral. We will step up the positive reinforcement and attention, and not engage/give eye contact but absolutely have him clean up too during incidents. He's capable of being very independent, and I want him to have the satisfaction that comes with self-care, even during less-than-ideal circumstances.

And here is Mali. She will be five tomorrow. Our friend Badger helped her make the cupcakes for tomorrow's classroom birthday happy time.

Seymour is thrilled that I caught her "Doink?" face and posture. She does this a lot. It is part of the ongoing amusing drama.

She keeps helping herself to lunch at the school cafeteria, saying that "it's free!" Telling her not to do it is not working so far. We may have to put her poster up in the cafeteria with the caption, "Do not give this child food!"

We've realized that Mali's diet is not a whole lot more varied than Leo's. So I've been having her join Leo's food tolerance sessions. She did eat most of a carrot stick along with her brother. I don't know if we'll ever get back to her "tabbouleh baby" openness, but more green and orange foods are needed in her diet.

Two days ago she got the payoff from several weeks of "accidentally" breaking crayons: recycled crayons! Made in mini-muffin tins. I think they came out well, don't you? She and Leo both enjoy using them, as they're easy to hold, and the colors change as you draw.

Her writing suddenly became legible last week, also she started writing out words spontaneously (she's been reading for months, but her writing has been messy and minimal -- as is developmentally appropriate). When she handed me the 50th picture she'd drawn of me wearing a tiara with purple jewels, I noticed a difference: A dedication. She'd very neatly written, "To Momy, from Mali."

She likes books about animals, and Fancy Nancy. Her latest literary treasure is Percy the Perfectly Imperfect Chicken (a review of which is listed on ye olde review blog), but she is also taken by the Fancy Nancy series -- which makes sense, as our sparkly gold and tiara-wearing dress-up lover practically *is* Fancy Nancy.

Probably the funniest thing she does right now is read name tags and greet all grocery store and Costco employees by their first name. And that's the last thing you'll read about Mali as a four year old.

11.23.2009

Our Birthday Boy's Bash

Leo's birthday party was exactly the kind of free-for all bash I predicted. All our kids, all those children, got to run and tumble and jump and play without any weird vibes from anyone in the area. The bouncy house emporium staffers were mellow and helpful, and everyone had a good time. Jennyalice already posted a warm we-love-our-village update about Leelo's party so I'll give you a (mostly) visual tour instead:


I made sure Leo got three of his oral fixations in one cupcakey package: chocolate, forbidden M&Ms, and a nice green straw. He nicely allowed me to share these cupcakes with the other partygoers.



Leo's Dad loved the bouncy slides.


And Leo loved having  his dad on the bouncy slides.


Mali appreciated that some of her brother's friends are her friends, too.

 
Izzy and Mali tried to take down Descartes, who is 6' 5". It was a bit like watching Rebel forces attack At-Ats during the Battle of Hoth.


Leo got his own special birthday chair during Cake Time. Cheeky!


Everyone sang him Happy Birthday. He always loves that. He blew out the candles himself, though there were so many that it took more than one puff.


He was given lots of love from the right...


photo by Jennyalice

...and lots of love from the left. This pretty well summarizes his life. Love all around.

Still can't believe he's nine.

11.19.2009

Goodbye and Good Riddance to the R-Word

Our culture is finally starting to clue in: "retarded" is increasingly off-limits as a casual pejorative. This mindset shift is the result of activism like The R-Word campaign, and as evidenced by last week's epsiode of Glee, it's taking hold. As I wrote for BlogHer:
The word "retarded" was never mentioned once, not even with regards to Becky [who has Down syndrome], even though Glee's writers sub-specialize in creative taunting. I don't know if the writers sidestepped the term because of anti-r-word activism or because it is increasingly simply not done, but it was noticeably absent. Let's hope this omission represents a cultural trend on the upswing.
This is not to say it's not used. But it's also increasingly not tolerated. My friend Emily recently came across a website called "Retarded in Love," and was not alone in letting the blogger know she didn't appreciate her use of the term:
It would be thoughtful of you to change the title of your blog…yes, this probably comes across as uptight oldness or just plain uptight, but people who actually are labeled as retarded cannot defend themselves when someone uses this term for amusement. While the word itself should not be used as a label, it is still, and we all know exactly what it means. It’s painful to people who love someone who is intellectually disabled to see a word like this used for humor by someone who is patently not intellectually disabled. If you must use a term that refers to cognitive deficiency as a result of being overwhelmed by love or made a fool of by love, I suggest “Stupid, ” as in “Stupid in Love.” God knows that’s enough of a norm to avoid being offensive.
Are there circumstances where using the r-word is acceptable? Parents and advocates in the disability and special needs communities have been known to take advantage of its shock value, to effect change, precisely because it's now taboo. In the new collection My Baby Rides the Short Bus: The Unabashedly Human Experience of Raising Kids With Disabilities (in which Jennyalice and I both have stories, which I had to read slowly because almost every story made me cry with knowing, helpless rage, and which you should distribute widely as a holiday gift), Chloe Eudaly describes the desperation that drove her to use the word on her son Henry's transition team -- they wanted to put her previously happily included son in an inappropriate placement: a segregated special ed classroom (you know, like Leo's):
...sensing impending defeat, I dropped the R-bomb ... I pointed out that the best way to learn a language or skill was immersion, and what the self-contained classroom was but retarded immersion?
Or, as another Short Bus author Amber Taylor wrote about her son Brave, who has Down syndrome:
We would get an array of questions and comments along the lines of "When are you going to institutionalize him" and ... "Why isn't he walking yet?" To which I would reply, in my most June Cleaver sort of voice, "Because he's retarded, you ass!" I blurt it out in that way because when a person is being a jerk, and I say "special" or "has needs," "Down syndrome," et cetera, it doesn't seem to sink in. When I blurt out "he's retarded," they get all red-faced and embarrassed, and I enjoy their discomfort.
And finally, there are those who, like The Pioneer Woman, have spent their lives loving someone with cognitive or developmental challenges, and use the word in a purely descriptive fashion. While I wish PW would update her terminology, as I said in that same Glee post:
...I know that The Pioneer Woman uses the word 'retarded,' but her affectionate descriptions of [her brother] Mike -- as just another complicated person who happens to have developmental challenges -- temper her non-malicious use of an outdated label.
The r-word is still around, but it's on its way out. You can help extinguish negative r-word behavior, by politely pointing out its inappropriateness while anticipating some defensiveness. I know you're all strong good smart people with nice thick skin, who understand how important it is to stand up for people like Leo who can't defend themselves. My thanks, in advance.

11.13.2009

Obsessive Compulsive Denial

We had a Leo team meeting today. Me, Supervisor M, Supervisor E, Therapist V -- and Leelo, because I couldn't find anyone to watch him. Having him at our table was fine -- he was willing to do activities during the meeting's first 45 minutes as long as I kept replacing them, and let him count out and eat occasional goldfish.

I received a lot of careful and welcome reminders regarding interaction with Leo --backing off on verbal prompts for activities where the goal is independence (eating slowly, post-toileting hand washing), no verbal interaction during self-injurious behavior but, after a beat, immediate praise of praise-worthy actions, e.g., "You're sitting so nicely! Good job, Leo!"

And we talked about whether he's having his annual November behavioral spiral. He seems less engaged and more giddy, and he's been having toilet accidents at school. The stinky kind, not the wet kind. Every day this week. It's a huge, consternating surprise to us all and especially to me, because it's been so long since he's had a toileting accident of any kind on my watch that I stopped toting backup clothes or wipes. I do think it's a mostly intentional behavior, because he can hold it when needs to -- for instance, for the 30 bathroom-free I-5 miles between announcing his need to go, and reaching Coalinga. Wanting attention, wanting post-bathroom reinforcers, having trouble with transitions,  a sensory layer we've not perceived fuzzing up his internal signals? I don't know if I'd feel comfortable sending him to a new school -- even for one day a week -- if he's having toileting issues.

He's having beyond-stim issues as well. They've piled up slowly, so I wasn't alarmed until Supervisor M gently pointed out the frequency of Leo's spins, his need to trace certain paths between our car and house, and his empty rather than processing based echolalia. She wants us to confer with Leo's behavioral psychiatrist. I suggested that his OCD-like behaviors might be rooted in how much he's grown over the last year while his Risperdol dosage has remained constant, but she quietly reminded me that Risperdol helps with aggressive, not patterned, behaviors.

So it looks like we might be having a November after all. So far it's a milder version than the aggression- and depression-fests of past Novembers, but a November nonetheless. Not enough of a November to derail Leelo's planned Christmas trip to his grandparents' home for the first time in four years, but enough that steps need to be taken, and the worry furrows on my forehead are deepening.

11.12.2009

I Wish We Didn't Know a Flu Victim

Seymour and I took all three kids in for flu shots this morning. I love our medical office -- they are masters of the BAM - DONE! injection. Leo barely had time to freak out, though I was certainly glad Seymour was there to help hold and reassure our boy.

That was the first of many errands. We also had the pleasure of visiting Kristina's gracious mom, and fetching a bag of puzzles freshly couriered from the East Coast. Leo was a patient and good-natured visitor, in contrast to his couch-vaulting and -submarining baby sister.

Then we were off to lunch at our favorite Eritrean restaurant, where Izzy ignored the siren call of vegetarianism by happily sucking marrow out of lamb bones, and Seymour and I went to injera heaven. Leo was content with the lunch we brought for him, and to do small puzzles and dot-to-dots.

We then drove back across the bay to our own town, and I took Mali to a ballet and Jazz dance class at a local studio. Her goal is to dance like Beyoncé, which as a fan of great dancing and Gwen Verdon is fine by me. She thought Ms. Knowles was going to be teaching her class, though -- thankfully her teacher was skilled and cheerful, and Mali enjoyed herself too much to be disappointed. She'll return.

---

When we arrived home, we learned that Leo's and Mali's former preschool director had died from complications of a short but intense bout of the flu -- she had been perfectly well just a few days ago, as members of our church (where she attended) can attest. Both communities are reeling. I can't believe she's gone.

She was one of the smartest, calmest, and most experienced teachers I've known. She always knew how to talk to children and make them feel valued and respected (she was less tolerant with immature parents). She not only allowed but encouraged us to enroll Leo in her preschool, and bring along an aide -- and she took every opportunity to facilitate interactions between Leo and his typical classmates. Even so, she supported our taking Leo out of the school in the middle of his pre-K year, when the play-based lack-of-structure evolved into structured play and no longer suited his abilities.

She retired after (though not because of) Leo's class, but was still active in community educational and mentoring activities. And we still saw her at church. She told Seymour we'd need to "keep an eye" on Mali, after she witnessed our girl read the Welcome words during a recent service (not sure if she was advising caution or attentiveness, as her delivery was deadpan, but she is not someone whose developmental observations of young children should be ignored).

She was so valuable, so respected, and so loved. Our community and our children are poorer without her.

11.11.2009

Review: Liking Myself, and The Mouse, The Monster, and Me

The good people at BlogHer Ads (what a fine, fine crew) let me back on board even though I jumped ship three years ago. Times have changed, and spare blog ad change now seems like a fine idea. But hosting ads means no more reviews on this site, as they could dilute the perceived value of purchased ad space.

The way I see it, I've sold my soul, so I might as well fracture it too. All future reviews will be sequestered in my bloggy horcrux, SquidRosenberg.wordpress.com. My opinions will remain honest, and I won't be reviewing anything I wouldn't purchase for myself or my family.

I've posted a new review, even: all about some really sweet kids' self-help books by Pat Palmer: Liking Myself, and The Mouse, the Monster, and Me. I really do recommend them, especially to kids on the autism spectrum who can articulate their sense of self and how it is affected by social struggles. Pop over to the review site, and sit through some cute videos of Mali reading from the books, to see what else I had to say.

Selling out,

Squid

11.10.2009

Turning Nine on a Ninth in 2009

Leo had such a busy, fun, indulgent, and productive birthday that he asked to go to bed right on time. We even had him declaring that he was nine- rather than eight-years-old by day's end. But before that...

Seymour and I woke him up and presented him with his new Catbus! He was not as immediately overjoyed as I'd hoped, mostly because he didn't want to wake up. But once he realized what we were shoving at him, he was pleased.

Every seat had a cute little butt in it during carpool this morning, which meant that six people sang Leo Happy Birthday while we made the morning drop off rounds. Our cabin music also featured happy birthday songs, by The Jimmies, The Candy Band, and Justin Roberts.

After Leo and I returned home and he got on his bus, I worked for a bit then awaited the behavioralist sent by the regional center. Leo's regional center case worker was pleased by the reduction in Leo's aggressive behaviors since last year, but since his remaining behaviors are still dangerous when they do happen, she offered us a few hours of in-home behavioralist consultation. Supervisor M works at Leo's school almost exclusively, and supervisor E works on his home program rather than doing QA as she used to, so I figured a good pair of QA-like eyeballs might be helpful. Let's hope the regional center reviews the behavioralist's intial report on Leo and grants those hours to us.

Then I scurried off to Leo's school with his sad looking but tasty cake. Before I could make it to his classroom, both his teacher and Supervisor M asked me to walk down the hall and meet with the county director to talk about transitioning Leo to an integrated site. Which I did. We talked for a while, and I think we're going to move him -- ideally, when the new year arrives, Leo will spend one day per week in an autism classroom on a typical elementary campus, where he will get to mingle with neurotypical peers under the watchful eyes of one of the best teachers in the county (and an aide who knows him, of course). If the class works for him, he will transfer fully for fourth grade. The best part: he will have two friends in the class, the children of two of my favorite people!

More scurrying after the meeting, to Leo's classroom. The class staff had covered the tables with festive purple paper, and Supervisor M was there! A huge treat. His teacher even had a candle for him to blow out -- something I'd left at home as I didn't think it would be allowed. Everyone sang Leo Happy Birthday to the best of their abilities and then he blew out the candle (with some assistance from inspired classmates). And Supervisor M got him a solar-powered remote controlled car! How very cool.

Afterwards, I skulked into the neighborhood Starbucks to caffeinate and finish off my work shift. I didn't really want to be there because I am disappointed with that company: I sent their customer support crew an email asking if would be possible to procure my Starbucks straws-obsessed son with autism a case of their straws as a birthday treat, and their bot-like answer was:
No, we don't sell our straws, and furthermore our supplier is confidential. 
Seymour said they had a right to refuse and I understand -- but it seems like a missed opportunity to generate serious social media goodwill while delighting a challenged little boy who doesn't ask for much. I grumpily and defiantly grabbed a big bunch of the longer straws when I left.

Leo's birthday afternoon was about mellowness and watching Totoro while squealing and tossing around his new Catbus. And sometimes even offering it to his little sister while informing her, "It's Catbus!"

We picked up Indian food for dinner, as we'd promised. Leo not only sat patiently and non-violently in the regular non-five-point-harness booster seat next to Mali the entire way there and back, but he accepted that he had to wait until we got home to eat his naan bread. No hitting, no complaining, no whining. Whoa.

We still had to portion out his naan when we got home -- if he ever does learn to reasonably self-regulate his eating, naan will be the final non-bolting test item.

He asked to go to bed, as I mentioned. He also asked me to play him some tunes on the penny whistle, as has become part of our bedtime routine. Many of the songs he loves fit within that seven-note range -- including the Totoro theme song (mostly), Good Night by Laurie Berkner, This Little Light of Mine, and, as we discovered tonight, the Justin Roberts version of Happy Birthday. Afterward, and after only fifteen minutes of giggling in bed, he slid into sleep.

Nine nine nine. My son is nine. I still can't believe it.

11.09.2009

Happy Ninth Birthday Leelo!

Leo in the Shark Cage

Happy birthday beautiful boy!

I am thrilled about what Nine Years Old means for Leo. Our happy, well-adjusted boy has helped us be happy and well-adjusted, too. One year ago I would not have believed such gladness was possible. This is a precious time.

I love that he was excited yet conflicted about going to camp this past weekend. He wanted to go, but he didn't want to be apart from his family -- both positives. He also may have been worried that this was a week-long rather than a weekend-only camp, even though I reassured him that it was the latter. He had a great time, with a great aide, and greeted me at pickup with Spiderman-worthy leaps of joy that ended in a bear hug. He was voted Sweetest Scarecrow during the Harvest Carnival.

I can't wait to greet him when he wakes up, because we got him a new stuffed Catbus for his birthday. I thought was going to be the size of a Chihuahua but no -- more like a portly Jack Russell terrier.  It's huge, and really well made. Leo is going to go out of his mind when he sees it.

I am saddened that Leo's birthday day carrot cake is a pathetic-looking, non-CakeWrecks-worthy fail. I give up on gel decorating tubes! They are sploogy and gush liquid half the time. His cake may be covered in wee rainbow puddles, but it will be delicious and I'm hoping his classmates only care about that. I promise to make a better one for his birthday party, which I am really looking forward to (as I wrote on BlogHer last week). I hope he is too.

There will be green straw snatching runs and naan bread for dinner tonight!

11.05.2009

Mali and the Mathematics of Fibbing

Here's Mali and her friend Trinian, off to shoot dragons and eleven-year-old boys during her friend Merlin's birthday party.  Look at that determined walk -- she had absolutely no fear when it came to battling the older kids with her mini-Nerf gun.

"No fear" has always been her standard operating mode. It's served her well for almost five years. As have bravado and enthusiasm. But she's almost five, she's becoming more tuned into social dynamics, and she's starting to change.

Example: She is starting to fib. About anything. About nothing. When it really doesn't matter. Why? I suspect she's had an epiphany similar that of Ricky Gervais in The Invention of Lying (an excellent and original film, though it fails the Bechdel Test), in that people will believe any reasonable statement, so why not say something that gets a reaction? Like saying she's allergic to bees? Or peanuts? I suspect and hope it's a phase, and am running interference where necessary.

She does not like not being the center of attention. She spends her entire soccer game ("game" possibly being too organized a word) stomping around the field, looking at the ground and scowling as the ball and the rest of her team whizz by. (The coaches, thankfully, mostly ignore her non-sporting behavior.) And she hates the after-care dance class at her school, possibly because there are so many other kids.

I would like her to find an outlet for her energy and coordination, and brought up the possibility of a martial art to Seymour, but he doesn't think it's a good idea for her to learn combat skills. Maybe tap or jazz dancing? I would like to find an activity she likes, that also taps her natural rhythm and energy.

She was out of school for two weeks in the middle of October -- one of the many benefits of her year-round school calendar. What a delightful opportunity for us to bond, given that my youngest is fast approaching five and her souped-up version of four years old is so much fun?


Well, no. I work now. Whoops. I forgot about her upcoming break when I took the job. But I had a plan! I would finish almost all of my work at night, and hang out with her during the day, devotedly.

This plan sort of worked on her first day of break, which was also my 40th birthday and so an excuse to cajole her into a Mini-Me outfit complete with houndstooth check pants. She came with me on errands and we may have even read a book, though I remained preoccupied with my new schedule.

And then we came home from that day's school pickups and errands to find my mother in my house, even though I had talked with her just the day before about how much she was continuing to enjoy her family visit to Vancouver. Seymour had imported her as a birthday surprise! I was so very much beyond surprised that I ran around in a little circle instead of bounding over and hugging her, which she probably would have appreciated a bit more. But yay!

If I was happy to have her visit, Mali was even more so. Our poor third child is a social beast like her grandmother and unlike her  mom, so what a treat to spend the first week of her break playing, baking, dressing up, reading, painting, coloring, and talking talking talking with her beloved grandmother. It was also a relief for me -- I was able to shift some work hours to the day, without feelinglike I was abandoning Mali.

I think Mali wore five different outfits each day while my mom was here. My mom put makeup on her, too, which Mali thought was so dandy that she helped herself to the makeup the following morning. Her version of "eyebrows" (her natural brows, like my mom's, aren't visible) was hit-and-miss, but she put on the mascara perfectly. I still can't do that.

Eventually, and after Seymour, my mom, and Jennyalice threw me a surprise birthday party so fabulous that I'm still pinching myself, my mom left. Then it was just me and Mali again during the day.

I can't say I balanced work and parenting perfectly during the remainder of her break, but we did have a good time, including a trip to San Francisco during which she charmed the cupcakes off the Ferry Building vendors, ran most of the length of the Embarcadero, made friends with or totally irritated half of Seymour's co-workers, and surprised the patrons of Coffee Bar by being a child (love that place, but it is deadly grown up-serious). Did you know that My Little Ponies have magnetic feet that work really well on metal staircases?

I love this kid. I want her to stay just like she is, right now. I worry that I underestimate her, given that she's the third kid and I already taught Izzy and Leelo everything and won't remember what I need to revisit for her, or pay enough attention to where her mind is at. Recently I was wondering if she understood counting and one-to-one correspondence because she kept asking me what 1 + 1 and 2 + 2 equaled, but then after I teased her by answering "6" to "What is 1 + 2?" she looked at me witheringly and said, "No, Mommy, it's half of six." So I guess she gets what to do with numbers.

I hope I continue to get what to do with her, how to help her remain such a  treasure, even as she repeatedly experiments with pushing our buttons. She is one of the best things that has ever happened to our family, and that is a sentiment that needs to be on the public record.

10.31.2009

Cat Heaven


I'm sure that's where Pat the Cat has gone. It's been four weeks since he waltzed out the door with the other cats in the morning, then for the first time in his life didn't come back for dinner. He had been getting stiff and frail, so we are telling ourselves he did a typical feline hide-and-die somewhere in the multi-acre wild canyon below our house.

Seymour and I found Pat the tiny flea-ridden kitten in a Charlotte, NC rental truck yard, during a 1994 Brooklyn -> Bay Area relocation trip. He rode across the country in my lap and received flea baths in many I-40 motel sinks. He was waiting in the truck while Seymour and I succumbed to the Painted Desert and got engaged. He lived in four different homes with us, and went through three separate WTF processing periods each time we brought home another yowling infant.

He was our beautiful otter pelt cat, he drooled copiously when he was happy, he was much prettier than he was smart, and everyone loved him. His non-pseudonymous name was Boone. Now you get the joke.

10.28.2009

The Sharer

Leo made it all the way through our cavernous new Costco without much fuss over the baguette he requested and which I placed in our cart. He so desperately wanted to attack it and shove it in his mouth while we wound our way through the aisles between the bakery section and checkout! But I told him he would have to wait, and that he could have a bite once we got back to our car. He made a few more requests for his bread and hit his head once or twice along the way, but was easily calmed, and -- so you know our benchmark -- I rate one or two yells/head slaps strictly mathematically, i.e., almost zero.

His tolerance of delayed gratification was amazing. It was not so long ago that I would have let him have a few nibbles so we could complete our trip. Now I have faith in him, and his self-control.

I tore him a hunk of baguette once he'd strapped himself into his car seat, then started loading our haul into the car. His sisters noticed him nomming the baguette, and pleaded for some, too. So I tried an experiment: I tore another piece from the baguette, then handed it to Leo, and said, "Leo, pass this to Izzy."

He did. Though all he wanted to do was to eat the bread himself, and without me mentioning any kind of reward, he did what I asked.

That would be a milestone.

10.26.2009

Please ask for *Luv Ya Bunches* at your local Scholastic Book Fair

Written by an anonymous friend who very much wants her message to be passed on, so feel free:

You might or might not have heard by now about the recent brouhaha over Lauren Myracle’s new book *Luv Ya Bunches*. If you haven’t, here’s the story in a nutshell: Myracle wrote a book that features, among other things, a girl with two moms; Scholastic wrote her editor a note asking her to change it to standard hetero parents so they wouldn’t have trouble featuring the title at book fairs; Myracle refused to change it, and (not particularly surprisingly) Scholastic is not offering Luv Ya Bunches at book fairs.

Scholastic says it’s not censorship because there are *lots* of books they don’t offer at book fairs; they pick and choose based on many factors. I’m sure they do select for a number of factors, and also that
potential controversy is one of those factors (I once heard Gordon Korman recount a conversation with his editor who, having just read the first page of Korman’s *Born to Rock*, which features a reference to an a prison cavity search, said matter-of-factly, “So, not a book fair candidate, then.”).

Nonetheless, and regardless of what it's called, as a former book fair chairperson, a librarian, a reader, and the lesbian parent of a girl right in *Luv Ya Bunches*’s target audience, I am spitting mad about this. There’s a petition going out to Scholastic leadership asking it to stop censoring gay-friendly books.

I’d like to try another tack as well. The truth is that overall, this mess is probably (I hope!) going to bring lots of welcome publicity and sales to *Luv Ya Bunches*, so that’s not an issue. The issue is the book’s availability *at book fairs*. Book fairs, like libraries, are where kids get to exercise their autonomy and freedom of choice by picking their own books about the things they’re interested in. Book fairs are one of the places where kids’ horizons get expanded. (I still have the copy of *Are You There God? It’s Me, Margaret* that I bought at a book sale in elementary school, and still remember the feeling of revelation I had when reading it.) If this title isn’t available at book fairs, kids like my kid and her friends won’t have the chance to make that choice for themselves. By excluding Luv Ya Bunches from book fairs, Scholastic is putting same-sex parents  in the same category as a prison cavity search: something yucky, distasteful, and for mature audiences only.

When I told my daughter yesterday morning about this development (I left out the cavity search analogy, and in fact didn't give my opinions at all), she was shocked and indignant. “They need to WAKE UP!” she said. “Families can be different. NOT everybody has a mom and a dad. It’s just not right!” I couldn’t agree more. I suggested to her what I’m going to suggest to you: that when your school has a Scholastic book fair, you ask for Luv Ya Bunches by name **at the fair**. If you are a school librarian or book fair chairperson, and you have your initial consultation with your book fair rep from Scholastic, ask them to send Luv Ya Bunches in your shipment. If you are a parent or classroom teacher, ask your school librarian and/or book fair chairperson to order it. If you are a book blogger, ask your readers to do the same. And if you aren't any of the above but know someone who is:
pass it on.

And then, if they do manage to order it at the book fair? Buy it.

Look, Scholastic isn’t evil, and I’m sure most of the people involved would tell you that they’re not homophobic themselves. Scholastic is a business, and it’s driven by the market. Its decision-makers are afraid of getting negative publicity and losing book fair sales in conservative communities if Luv Ya Bunches is offered at book fairs. But if there is demand, they want to sell books. If there’s enough demand, regularly, for a title, and they’re licensed to offer it, they’ll stock multiple copies and send it in those huge unwieldy metal carts loaded full of books about vampires and best friends and Bionicles and cute little puppies. Communities that don’t want the book offered can always ask for Scholastic not to send it, or can pull it at book fair setup and hide it (like the Easter books Scholastic inevitably sends to Jewish schools' book fairs).

So, please, ask for *Luv Ya Bunches* at your local Scholastic Book Fair. Let’s help Scholastic wake up to the 21st century.

10.24.2009

Leave Photobooth Pix On My Desktop, Will You?


Though they both have nice healthy pink tongues, don't you think? Oral hygiene is important.

Fat Talk Free Week Is Over, Dude


photo by Barak Yedidia

I think this is a lovely photo, in which everyone in my family looks great, our yard looks appropriately autumnal, and even the broken concrete pieces forming our leach field's retaining wall appear picturesque. But I also think that my right breast looks larger than my head, and that my overall shape is displeasing -- to me at least.

I told Jennyalice about my concerns. She was sympathetic, and asked if there was anything she could help me do, go on walks, etc.

"Hell no!" I said, "I'll just ask Barak if we can do a reshoot from a different angle."

10.22.2009

He's the King of a House! And a Bush! And a Cat!

Check out this boy. I bet he's saying, "Oh marvelous me! For I am the ruler of all that I see!" While these projected thoughts mostly reveal how much Dr. Seuss we listen to in the car, my boy does rule.

His food tolerance continues to stretch and accommodate. He flabbergasted his parents three weeks ago, by willingly taking chewable antibiotics to treat an ear infection. I ran with that precedent, and bought him some chewable vitamins to see if he'd take those, too. He did! Six years of grinding NuThera vitamin pills into his rice milk, all done!

Unfortunately his food cravings -- we think it's more of a stim -- are at an all time high, and so is his weight. His pediatrician is not yet worried that he weighs 91 lbs, but Seymour and I are. More exercise for everyone, more activities to keep him away from the kitchen. Not easy as the kitchen/counter/peninsula area is our house's socializing nexus, but we'll make efforts to congregate elsewhere. Otherwise Leo thinks he gets food whenever he sees people gathered in the area.

We had Leo's annual social worker visit last week. My son did not hit her. That is a win! She did not cut our respite hours despite how well he's doing compared to last year, as Leo is still very obviously a 1:1 boy.

He is mostly cheerful and snuggly, grabbing us for spontaneous hugs and kisses, with huge lit-up smiles and giggles. He loves for us to lie down with him in the morning before he gets out of bed, and just hug. I'm normally a rather tactile-averse person, but cannot resist Leo's ever-so-sincere requests to "Lie down wif Mommy!" I'm savoring these moments, too -- I know two boys with autism who hit puberty a lot earlier than their peers, so who knows for how much longer early morning snuggling will be appropriate.

He had his first-ever full dental exam two days ago. They had no choice but to knock him out cold, and pull his loose front tooth as it was a liability for the anesthesiologist. (The awesome part: she handed me his tooth to keep, another first. He's swallowed or ignored/lost every other baby tooth.) His dentist couldn't believe what good teeth he has -- no cavities! Apparently the saying about "an apple a day" extends to dentists. He had a hard time coming out of the anesthesia, with prolonged emergence delirium, but eventually we got him into the car and took him home. Then he had a hard time remembering that he temporarily lacked sufficient balance to run rings on his beloved tactile path. By late afternoon he was just fine.

 
Yesterday we took him on our annual pumpkineering excursion to Bob's Pumpkin Patch in Half Moon Bay. He so loves running around with all the other kids, between the pumpkins, over the dead truck, through the cornstalks, around the goat pens, and up the hay bale pyramid. He enjoys his yearly trip to Bob's more than any other part of Halloween. And because he loves it so much, I feel the same way. Not that this will stop me from mooching candy off of his sisters on November 1st. (BTW, yesterday's BlogHer post is all about how to do Halloween -- or not -- when your kid has special needs.)

Even among all this happiness and goodness, I know that winter's coming. Leo's never had a good winter. The fact that Leo's never had a good winter is why he's still at the all-quirky-kids school rather than in a special ed class on a regular campus. But today, he is good and we are good and hope you're good, too.

10.20.2009

Dr. Bridget Taylor: Interview, Webinars on Autism & Problem Behaviors

The amazing behavioralist Supervisor M has been leading Leo's ABA therapy team since he was two, but not every child with autism has my son's luck. ABA therapy can be expensive, school districts can be resistant, and qualified therapists can be elusive.

How lovely that Dr. Bridget Taylor has become the senior clinical advisor for Rethink Autism, the online ABA Therapy curriculum resource. I know am not the only parent who, upon hearing that ABA therapy could actually make a difference for my child, daydreamed about having Dr. Taylor on his ABA therapy team. Dr. Taylor is the ABA therapist and researcher who helped Let Me Hear Your Voice author Catherine Maurice's children lose their autism diagnoses. She also co-founded New Jersey's center for learners with autism, the Alpine Learning Group. Thanks to Rethink Autism, she can now be part of any ABA therapy team with internet access.

The Rethink Autism team is aware that not everyone can afford their monthly subscription rate, so they have engaged Dr. Taylor to conduct free webinars, both tomorrow, Wednesday, October 20, and Monday, October 26, in which participants can discuss autism and behavioral problems with her, via live chat. Here is Rethink Autism's summary of the webinars:

For many parents and families with children on the autism spectrum problem behavior can be challenging. That's why this month's free live webinar focuses on the best problem behavior treatment and prevention strategies available. You'll learn how to begin immediately applying these techniques with your child and have a chance to ask questions via live chat with autism expert Dr. Bridget Taylor, a leader in the field of autism treatment and research, and rethink autism's senior clinical adviser.

Register for a webinar session now by clicking a date below:

For those who can't participate in the webinars, read on -- Dr. Taylor agreed to answer a few of my and Supervisor M's questions about autism, managing problem behaviors, the role of the internet in the autism community, and the most important things parents should be focusing on at various stages in their children's lives:

What has drawn you, personally, to the Rethink Autism online and webinar model?

As a clinician working in the field of autism treatment for over twenty years, I am very excited about being involved in an innovative company that has the potential to reach many families of children with autism. I have always been committed to translating complex concepts and teaching techniques for families so that they can be empowered to teach their children. Rethink Autism’s video-based curriculum presents teaching techniques in a simple step-by-step manner so that families can see how to teach their children.

Do you plan to have your Rethink Autism curriculum contributions about managing problem behaviors at home, etc., evolve with your research findings at the Alpine Learning Group, for example reducing too-rapid eating by use of a pager prompt?

All of the Rethink Autism’s teaching techniques and procedures are based on research that has been conducted in the field of applied behavior analysis. The techniques that I will discuss about managing challenging behavior are based on general principles of learning, and how challenging behavior is usually a result of the interaction between environment and behavior. That is, behavior occurs in relationship to certain events occurring in the environment. If we can identify those events and determine the reason for the challenging behavior, we can change behavior for the better. The pager prompt study is one example of how you can teach an individual with autism to attend to specific cues in the environment in order to reduce a behavior of concern. In this case eating too quickly.

Some children with autism engage in problem behaviors due to skill deficits and; a general lack of self-management skills; they do not yet have a rich repertoire of independent play, leisure, and self-care skills (and so must always be engaged by an adult). In addition to teaching independence, what are some ways school staff and families can manage these problems without promoting problem behaviors (e.g. excessive repetetive/stimulatory behaviors, prolonged dependence on adults?

Yes, many children engage in behavior because they lack skills in specific areas. So, teaching children with autism play and leisure skills can replace some repetitive behavior. Teaching children with autism for example to follow photographic activity schedules can help to keep children stay engaged without constant prompts from adults. Research in the use of activity schedules has shown that children can sustain engagement by attending to photo cues that serve as prompts to engage in play and leisure activities. In addition, teaching other functional skills such as how to ask for a break when demands are too difficult or how to wait for a preferred activity can be helpful to reduce challenging behavior associated with these contexts.

What are some suggestions to include the family member with autism in general family activities? Day to day living?

Make activities very predictable and start with short realistic activities. For example, if you are going to a restaurant, begin with one that does not require a long wait (e.g., a fast food restaurant), and bring your child’s preferred activities to engage in during the waiting period. In general, help the child with autism know what is expected of him / her in during the activity (e.g., first we are going to the store and then we are going to Grandma’s house). Pictures can serve as cues for children as to what will take place during the activity and the general sequence of the activities.

In terms of general family routines such as eating at the dinner table together, start with a short duration of sitting and use timers to help the child know how long he will have to sit. For other family activities the child may need an incentive or a reward to participate. For example, if you want the child to sit and watch a TV show with his sibling, intermittent rewards such as access to a preferred snack while he is watching the show, may motivate him to participate in the activity the next time. Over time, you can fade the snack out. In general, the more you practice family activities and make these activities very predictable, the more the child will learn about what is expected and it will become easier over time.

How can parents assist the teams they collaborate with? 

Parents are clinicians' best allies. They can assist in many ways. For example, they can help clinicians identify important goals to work on (e.g., cooperating in haircuts, attending religious services, playing with siblings), they can help in transferring skills learned during teaching sessions to every day, real-life activities, and they can support the intervention by implementing the interventions in daily life. In addition, since they truly know their child best, they can provide essential information to team members about the child (e.g., likes, dislikes, general patterns of behavior, etc).

What is the one suggestion that you would make to a parent of a newly diagnosed child? 

Access interventions based on applied behavior analysis as soon as you can.

What would be your one suggestion to a parent whose child is ten years old? 

This is a good time to reevaluate the goals you are working on. Ask yourself, “will he need this skill when he is twenty years old?” How often will this skill be needed in daily life? How is this skill going to help him be as independent as possible?

How about for a parent of a child who is transition age? 

Identify agencies and supports in the community that your child can be part of for the long term. Identify agencies that have multiple program components such as career planning, residential planning, and recreation and leisure activities.

What is one piece of advice you would give all parents? 

No one knows your child better than you – you will be your child’s strongest and most passionate advocate. You are after all the architect of your child’s future and as you collaborate with professionals help them to learn as much as they can about your child and your vision for your child’s future.

What is one thing you would suggest that parents avoid? 

Avoid interventions that are not grounded in sound scientific research.

What are your thoughts with regards to the internet and the role it plays in the autism community? 

The internet can be a great resource to families in terms of learning about treatment, accessing services, and gaining support from other families. Unfortunately, it can also lead families down the wrong path to a treatment that does not have a lot of research supporting it. When parents google “autism and treatment” they are confronted with hundreds of options, this can be daunting for families. But, the internet allows families to learn about effective, science-based interventions such as applied behavior analysis. Rethink autism’s innovate web-based curriculum is one such example of how the internet can potentially change lives.
Related Posts with Thumbnails