So you know how we made sure to have a very lowkey Thanksgiving and also to keep things real simple and understated for Charlie’s birthday, a holiday involving days off from school and an event that has been known to cause Charlie some serious consternation? In 2008, both of these days passed well and quietly for us, largely because we strove to make them Super No Big Deal in the biggest way.

So you think I’d have applied the same tried and true formula to Christmas and New Year’s.

Granted, since we take a 3000 mile airplane trip from New Jersey to California, and (as we traveled on Christmas Eve day, due to Charlie’s having his last day of school on December 23rd) no sooner had we landed and gotten to my parents’ house then we all got into a rented minivan and drove a couple hours out to the Sacramento area to my uncle’s—-due to this, Charlie was doing a lot more (energy-wise, social-wise, transition-wise) in one extremely long day than he often does in a week. The next day, being Christmas, meant that we went to the cemetery, then lunch in Chinatown, then relatives came over, then we went up to my aunt’s house—-and the next day, one of my relatives invited us and several family members out to a big Chinese dinner—-and then the next day, we took, or rather attempted to take, Charlie to Target, only this Target was one he’d never been too and was in a two-story building with mod-metallic-architecture—–

You get the picture. It was totally newness and super over-sensory overload, with a couple dashes of lots of food of a rather rich, holiday feast nature, and several switches from this activity to that event and the result was:

A very big stomachache, in a literal and figurative sense, leading to literal and figurative headaches and some rather erratic moments when Jim and I found ourselves flying after, and flinging ourselves (again, literally and figuratively) upon our boy.

We’ve been saying “nope” to social engagements (with the exception of a lovely afternoon of conversation and camaraderie with friends and their super great kids and a very attractive trampoline; Jim spent the day hiking with Charlie and walking him all over the neighborhoods around my parents’ house); have been all suddenly aware of how many echoes and sounds my parents’ house (it has all hardwood floors) resonates with, and also the height of the ceilings in some of the rooms and the way the space is sectioned up; have been adding up all the greasy sweet (gluten-free, actually, but greasy nonetheless) treats Charlie ate too much of the first two days; have been noting, yes, he is still sleeping in the little single bed my parents bought for him when he was, oh, a toddler. We’ve been making sure that Charlie does all the things he knows how to do at home—setting the table, stripping the sheets off his bed, carrying bags—out here.

And, I appropriated my mom’s calendar and x’d out the days of December that have passed, and pointed out the date we’ll be back in New Jersey. It’s actually a calendar that I made for her (courtesy of iPhoto software). Charlie looked at the boxes with the x’s and then started to turn the pages of the calendar. I pointed out shots of him sitting in the black chair he always slumps in after school; the cheap and study IKEA carpet that never seems to be crumb-free; the kitchen in our condo where he gleefully chomped on half a watermelon; and, of course, the ocean where he surfed and boogie-boarded last summer. Charlie’s eyes brightened up at all this.

No place like home for the holidays.

Saw those 4 letters on the license plate of an older SUV while driving around Berkeley on Tuesday—–no kidding!

So, you’re reaching for the eggnog or another piece of gingerbread and Great Uncle W says to you, “Now what is all this I hear about autism and vaccines?”

Or, some friendly step-relatives happens to end up next to you while the Christmas carol sheets are being handed out and, just as you’re trying to sneak out of the chair to sit by your child who already has his hands over your ears while your musician second cousin starts playing something from Jersey Boys on the piano to expressions of delight, said step-relative says, with a concerned smile, “Does he have this thing called sensitive-processor disorder too? A friend says her nephew has it.”

Now don’t get me wrong. After the initial incredulity that Charlie “had” something, my extended (and not small) family has made it a point to reach out and include Charlie. Considering that a frequent family activity is “getting together in someone’s house or an economically priced restaurant in Oakland Chinatown,” and a certain amount of conversation is about the food we ate last time we met, the food we’re eating, and the food we’re going to eat (say, when we get together for dinner……..that night), Charlie is quite in his element and certainly knows how to work the lazy Susan.

Lest eating numerous Chinese meals (ok, sometimes we “go American” and eat sandwiches) in various settings with various combinations of relatives seems boring and repetitive to you, I can see how, if we lived in California, this would provide Charlie with constant opportunities for interactions with the same (more or less) people. I was a picky eater as a child, so I suspect my family watches Charlie’s hearty eating with some equally hearty approval (and I think he’s started on another growth spurt—-he spent most of a snow day last Friday and the weekend sleeping, and I just realized the sleeves of his coat ride up when he raises his arms). It’s true, Charlie doesn’t run off to hang with my cousins’ kids, but he does like to be in the same room or nearby them, with Jim or me or my parents around.

Mostly my relatives like to hear what’s going for Charlie at school and someone inevitably says that “X who they know has a child with autism,” and various therapies get listed. One side of my family being quite up-to-date regarding technology and TV, should anyone mention that December 11th The Doctors episode on which DAN! doctor Jay Gordon I am grateful to have checked in with Orac at Respectful Insolence’s thorough working over of supernova stupidity:

What’s really annoying about this episode is that, mixed in with some accurate information is a bunch of infuriating false “balance” and Dr. Gordon’s antivaccine stylings. The parents (Dan and Lori) featured in the segment have seven children, with another one on the way, and four of their children are autistic. I don’t know about you, but to me that fact alone would strongly suggest a genetic component, but naturally these parents blame vaccines for their children’s autism.

As Orac concludes, “the one thing that The Doctors demonstrates beyond a shadow of a doubt is that having physicians involved in the making of a show about medicine and medical controversies is no guarantee that the resulting show will be science-based”—-indeed, the resulting show will be TV medicine or science, Hollywood style, and, as noted when the comedic legal drama Eli Stone aired back in January of this year, the whole “child becomes autistic after receiving a vaccine and some professional [legal in Eli Stone; medical in The Doctors] proves there’s gotta be a link” gambit can fit very well in the allotted hour, with some commercial breaks allowed for. The idea that vaccines can be linked to autism is readily explained as a simple matter of cause and effect, plus you can insert, to good effect, a few shots of those needles and those mysterious vials that have had who knows what injected into them by some unknowing pharm tech.

So yes, I am feeling prepared to address any “but what about those vaccine” questions—-and the sensory stuff—-and, if no one’s rushing off to take a turn at Guitar Hero, am glad to speak to genetics and the fact that autism really is a family thing.

While I’m contemplating where to locate twinkling bike lights and as it’s the holiday season, I thought I’d make a confession:

Charlie’s never sat on Santa Claus’s lap.

We have tried, when he was much younger and we found ourselves in a mall in New Jersey, the land of malls and mallrats. Or maybe we had gone to the mall that day for that sole purpose. Something about “mall air” and the deliberately smiling velvet-clad elves/Santa’s helpers, and the line of overly excited, bored, or wandering about children, led Jim to say, quite wisely: “Let’s get out of here.”

We never really brought up the matter after that. Charlie was around 4 or 5 then and he wasn’t too inclined to sit on anyone’s lap for too long, and we worried about what if he got upset and back-arched while Santa was a ho-ho-ho-ing, and we found ourselves handed a picture of forced smile Santa and not smiling Charlie, for a not-cheap price. And so we kept sending out photo cards with Charlie in random candids, usually shot outside (and often from the summer, by the ocean).

On once relaying our guess-we-gave-up-on-the-Santa-thing, I was immediately reminded by my mom of the response that both my sister and I had while sitting on the lap, or even getting near, Jolly Old St. Nick. “You cried,” my mom said. And, indeed, there’s nary a photo of me on Santa’s lap in the rather extensive photo and slide archives in my parents’ house.

Which brings to me to a quandary that’s a sort of corollary: The whole matter of telling Charlie about the guy in the red suit who comes down the chimney and, for that matter, the bunny that brings the basket full of Easter eggs, and the fairy who takes away your teeth and brings coins……while we’ve talked about all these to Charlie at the appropriate holidays, as of a couple of years ago, we ceased to. Charlie never developed any particular interest in any of those make-believe characters. He’s never been one for stuffed animals (aside from the says-100-things Barney he used to have) and his main concern regarding his teeth was getting that loose hanging thing out of his mouth.

Part of me feels that maybe we didn’t try enough to explain about Santa Claus et al., and the other part of me sends out a reminder: You would have had to reveal that Santa = Dad and Mom anyways.

What Charlie most seems to be interested in during the holidays is seeing my parents and staying in their house at the bottom of a hill in Oakland, California, and eating in a lot of Chinese restaurants with food-laden lazy Susans swinging ’round. I have a rather large extended family who likes to get together and, as the three of us usually only visit once a year (Charlie and I did go out to California in June, but it was a very teary visit as Charlie really missed Jim), Christmas has become a time to connect and reconnect with my relatives (I haven’t lived in California for over twenty years). As it’s rather likely that we may end up in California, we try to pack in a lot in each visit, and our time on the west coast with Charlie—it means a lot to show him and Jim all the places (Chinatown, where my grandmother Ngin-Ngin still lives; the cemetery where Yeh Yeh, my grandfather, and many other relatives are buried) that made up my world as a girl.

Yes, Santa will just have to wait.

Did Thanksgiving and now full speed ahead into December with all of its festivities, plus a few extras. Today is “Black Friday” here in the US, formerly known as “the day after Thanksgiving when people line up at 5am to charge the stores to get super-special-deal-discounts on holiday purchases”—as you probably guessed, we didn’t hit any malls with Charlie in tow. He has a general aversion to shopping for clothes, electronics, and anything in the closed confines of the modern mall. Once upon a time, we went to malls with pretty much the sole intent of walking around for exercise on a cold winter day, with the promise of escalator and elevator rides. Charlie’s interest—desire—to ride the likes of those has waned (and, too, some rather painful memories of dragging a very unhappy boy away from the down escalator, which he wanted to go up on).

Fortunately, there’s cyber-shopping, and no need to drag Charlie on any shopping expeditions. A lot of the bloggers at b5media have put together gift guides and I’ve included the list at the end of this post (just click where it says “read more”). I haven’t put together a guide of “stuff” that’s appealed to Charlie (and that he’s actually liked and used……) but I might, could, if anyone’s interested………. here is one suggestion:

Can I Sit With You Too? is the second collection of stories from the Can I Sit With You? project, which gathers together tales from the “stormy social seas of the schoolyard.” Here’s the book blurb:

These new tales represent an even wider range of schoolyard experiences, including best friend disappointments, new kid fears, harsh discrimination, living with disabilities, and emerging sexuality. By sharing moments from kindergarten through high school, these stories once again remind us that we are not alone: chances are, if it happened to you, it happened to someone else, too. The Can I Sit With You? project has been featured on NPR, and in live shows and readings from Seattle’s Annex Theatre to the San Francisco Bay Area’s Book Passage. Proceeds from this book benefit SEPTAR, the Special Education PTA that Jennifer Byde Myers and Shannon Des Roches Rosa helped found in 2007.

As related, we had an incredibly quiet Thanksgiving with just the three of us. We used to go to the club where Jim’s aunt, Aunt Joan, was a member; she passed away, very suddenly, last June; she was happy, well-loved, liked, and regarded, and she’s more than missed. Thanksgiving at that club would not be the same without her ushering us in and sitting down with some white wine beside her husband.

The club was a challenging place for Charlie to be; he had to get all dressed up and after he ate, there was never much for him to do (or, rather, never much that would have been considered “appropriate” for him to do), and his whole day would be thrown off because of eating “dinner” at 3 o’clock in the afternoon. People—and no one more than Jim’s aunt, whose oldest son is severely disabled—were understanding but I guess difficult, awkward moments in social settings still feel, well, difficult and awkward.

Shannon Des Roches Rosa recently posted about helping peers understand our kids’ social challenges and some of what she notes might be helpful to mention to others—relatives, family friends—too, especially at a time of year when there tend to be more social gatherings, parties, and other “holiday cheer” (that often doesn’t feel so cheerful). I’ll just quote some bullet points from the post:

• Don’t to give up on [kids with social challenges]
• Don’t ignore them
• Make them listen to you sometimes!

I’d also suggest, we should listen to kids and those with social challenges all the time, however they’re communicating, with words and without.

And in regard to holiday gifts—just today I found and carefully refolded the silk Christmas tree scarf Aunt Joan gave me in a drawer, and thank her always for some very wonderful memories.

Read more

In Massachusetts, Michael Mayes, an 18-year-old senior at Marshfield High School who plays baseball and football, is one of 28 students who will serve on Governor Deval Patrick’s Statewide Youth Council, today’s Boston Globe reports:

The panel was established by the governor to allow young people to weigh in on issues important to their communities and to them personally - such as soaring college costs, violence prevention, and healthcare. The opinions and concerns, voiced during council meetings, will be relayed to state legislators. The council has two representatives from each county in the state. They serve for two years.

Mayes is autistic and recalls that “‘In elementary school, everyone always underestimated me.’” Not any more……

And across the country in California, this news: Schwarzenegger Vetoes Bill Recommended By Autism Commission. Bill SB 1563 would have required state agencies that deal with health insurance to create a workgroup on insurance coverage for autistic individuals and those with developmental disabilities. Here is Governor Scwharzenegger’s veto message:

Governor’s SB 1563 Veto Message

To the Members of the California State Senate:

I am returning Senate Bill 1563 without my signature.

The provisions of this bill are currently being accomplished administratively through the Department of Managed Health Care. Therefore, this bill is unnecessary and duplicative of existing work. For this reason, I am unable to support this bill.

Sincerely,
Arnold Schwarzenegger

In these instances, it looks like some are listening, and some need to listen a lot more.

Darn, I thought it was my own state of New Jersey that does: According to the most recent figures released by the Centers for Disease Control and Prevention in 2007, about 1 in 150 8-year-old children in multiple areas of the United States had an ASD, and New Jersey has the highest prevalence rate, 1 in 94. An article in the August 20th CityPages in Minnesota suggests that it’s rather the North Star state that has the highest rate, 1 in 81.

The CityPages article mentions a 2001 CDC study but not the more recent one in 2007, though it does cite the 1 in 150 figure. For the 1 in 81 figure, the article relies on a chart made up from data from public school districts around the country. (You can see the chart here via a parent’s website.) The parent of an autistic child, Dan Hollenbeck, arrived at this figure by finding the number of cases of autism services provided by each state’s public schools and then dividing this by the number of children enrolled. The figures that Hollenbeck arrived at provide an idea of how many children who are classified under the code of autism are receiving services in school districts across the US. But, it should be noted that school districts around the country vary in how they classify children as needing to receive services for autism, and services and programs for autistic children in public school vary widely from state to state (and within states—that’s certainly the case here in New Jersey–between rich and poor school districts, for instance). More than a few children classified under the autism code wouldn’t be diagnosed with autism if a full diagnostic assessment was done.

Further, Hollenbeck is the Director of Technology at Thoughtful House, an Austin-based center which is “fighting for the recovery of children with developmental disorders through the unique combination of medical care, education, and research.” Dr. Andrew Wakefield (the figure at the center of the MMR-autism controversy) is on the research staff of Thoughtful House, which says that we are “in the midst of an epidemic of developmental disorders that includes autism, Asperger’s Syndrome, attention deficit disorder (ADD), attention deficit hyperactivity disorder (ADHD), pervasive development disorder (PDD), and nonverbal learning disorder (NLD). And, Hollenbeck and his wife, Laura Hewiston (the researcher behind a certain infamous poster presentation on monkeys and vaccines) are listed as litigants (see #437) in the Autism Omnibus proceedings in which some 4800 families are claiming that vaccines injured their children and causes them to become autistic.

In other words, there is some motivation for Hollenbeck to offer data that suggest that the rates of autism have risen “epidemically,” and especially due to vaccines or something in vaccines. (And, CityPages needs to make a few clarifications about the data that it is using.)

The 1 in 81 figure suggests that educators in Minnesota are very aware about autism and about providing services for children. And that’s certainly also the case in New Jersey which, according to Hollenbeck’s figures, has 1 in 115 children with autism, which is rather counter to the CDC’s 2007 figures, and rather counter to what the “Jerseyan in the street” would tell you about autism here. Down here at the shore on Tuesday morning, my son Charlie got over-stimulated in a bakery—chock full of vacationers and display cases—-and someone who is probably the owner appeared from the back; he has an autistic grandson. (We’d always noted a collection jar for autism events on the counter.) Last week, there was a young autistic man in the waves with his father every day, and this week there’s a boy a bit older than Charlie. And there’s Charlie himself; when we tell the lifeguards about why it’s so hard for him to understand about “swimming flag to flag,” saying “autism” is pretty much all that needs to be said. Back home, there’s our school district which has a quite high rate of autistic students compared to the overall total of students—-because it’s a district with a very strong autism program and also special education services, and many families (like us) have moved to it for that reason.

No discussion of autism rates among students (and no discussion of the so-called “autism epidemic“) is complete without keeping in mind Washington University Paul Shattuck’s 2006 article on The Contribution of Diagnostic Substitution to the Growing Administrative Prevalence of Autism in US Special Education,” in which he found that, as the rates of the autism diagnosis increased from 1994 to 2003, the rates of diagnoses of mental retardation and learning disabilities decreased. George Washington University anthropologist Roy Richard Grinker’s 2007 book Unstrange Minds: Remapping the World of Autism further explains how historical and cultural factors have led many to feel and even to believe that there is an epidemic of autism, in no small part due to our better understanding of autism, broadened and refined diagnostic criteria, and a huge increase in public awareness. There’s more and more research going on about the causes of autism: The August 19th KQED has a report on northern California researchers who are studying the causes, especially environmental ones , of autism. A blog details a video report, which can be seen here. Researchers are studying seemingly everything from dirty diapers to carpet dust in an effort to find if there are any “risk factors” that an expecting mother might encounter, that might be linked to her having an autistic child.

Having gone from Minnesota back to Jersey by way of California in this post, I have to note that we’ve connections to all three of these states. Charlie was diagnosed in Minnesota, has receive most of his school education in New Jersey (Jim’s native state), and I’m California born and bred, and there’s no question that, in all of those states (and in Missouri, where Charlie was born), we’ve encountered many autistic children. But then the chicken or egg question arises: Is the increase in autism is due to something specific that can be pointed to, something external and in the environment; or is it because of our being able to better detect and diagnose autism, significant changes in the diagnostic criteria for autism, the steady rise in public awareness about autism, and the increase in services, schools, therapies for autism (and college students)?

We’ve got the technology to measure Michael Phelps winning his seventh gold medal by .001 of a second—surely we’re better able to count cases of autism?

Much happened over the past two weeks but I want most of all to think about Evan Kamida, who passed away on July 24, just a few days shy of his eighth birthday. Please keep his mother Vicki Forman and Evan’s family in your thoughts and prayers—-and to honor his memory, here’s a small and lovely thing to do: Please take a photo of flowers at a swingset and post it to this Flickr pool. Shannon Des Roches Rosa and Jennifer Graf Gronenberg have posted more information.

Thinking of Evan.

• Not a Team Player in the Office?—-Not Necessarily
  The difficulties that autistic individuals face in the workplace.
• Use of Restraints Increasing in Public Schools?
  Kids coming home with bruises on their wrists, arms, legs: That’s not supposed to happen in public school, and not at the hands of teachers—well, it does.
• Mouth or Eyes: How do you look at someone’s face?
  Researchers studied 42 parents of autistic children and found that some of the parents evaluated facial expressions in ways similar to autistic individuals.
• The Latest Players in the Vaccine Drama
  Hollywood meets science……
• The Perils of French Fries
  On a ubiquitous staple of American kids’ cuisine.
• 4-year-old shown the door at Georgia restaurant
  A Georgia mother and her daughters are kicked out of a Jackson restaurant because one daughter, 4-year-old Alyssa, who is autistic, was crying.
• Savage Language, To What End I Do Not Know
  Talk show host Michael Savage mouths off on autism and starts a media maelstrom.
• “He’s Just a Late Talker—He’ll Grow Out of It”
  Late talking child or child on the autism spectrum?
• About a “grossly misinformed actress” and a certain doctor
  Jenny McCarthy, a certain doctor, and……
• Back in Jersey Where There’s “Looming Dread of Autism”
  Has autism become this generation’s polio?
• Remembering BART, BlogHer, and Some Books
  Reflections on BlogHer and being in the Bay Area.
• A Little Autism Education for Michael Savage
  What Michael Savage needs to know.
• The R Word and Not So Nice Language
  Is it time to retire the word “retarded”?
• Here’s the Autistic Adults
  The Vancouver Sun doesn’t quite know what to say about autistic adults.
• 9 Years Ago Charlie Was Diagnosed
  9 years ago, we received Charlie’s formal diagnosis of autism.
• Rates of Autism in Somali Children in Minneapolis
  Why are first generation U.S.-born Somali-speaking children in Minneapolis schools disproportionately identified as having autism?
• Network Defends Dr. Savage
  Talk Radio Network has announced that it will not be firing Michael Savage in the wake of his incendiary comments about autism.
• False Controversy: Autism and Vaccines
  On science, medicine, doctors, scientists, and the mommy gambit.

The first thing I have to say about being at BlogHer was that, because I didn’t have to keep looking for a boy at my back (not that I didn’t sometimes turn and scan the room for him; it’s a reflex)—-because I was on my own, I got a chance to look at some things a little more.

I got in at the San Francisco Airport mid-Friday morning and took BART, and was briefly disoriented. When I growing up, BART ended at Daly City, not the airport, and went to Fremont, Concord, or Richmond. Now it goes out to Pittsburg/Bay Point and Millbrae and to Dublin/Pleasanton, places not unfamiliar to me but not familiar as BART stops. As I waited for the train, I remembered how, with my sister and father and Yeh-Yeh, my grandfather, we all took a ride on BART when it opened—a ride to nowhere in particular—and how my sister and I chewed a pack of orange gum and every time the flavor ran out, I asked for another piece.

The conference hotel was near the Powell Street station which is the one station we always went to, as it’s very near Macy’s and the stores. And the hotel, was across the street from Union Square which we’d walked by hundreds of times. Strangely familiar territory—-not that I ever thought I’d be back here at a blogging conference to talk about being the mother of an autistic son and writing on the internet about it.

Friday, I met the members of my panel “in person and actually,” went to a panel on video blogging (no plans of starting that here), and wandered around the exhibits, where I helped myself to a plate of smiley-faced McCain fries (thinking of Charlie; he only likes the ones that looks like McD’s) and got into a conversation about Charlie’s struggles to read with the folks at the Leapfrog booth. Then to BART to Oakland, where I met my parents for dinner at a restaurant across the street from where my high school was once located. I dozed off on my parents’ couch as my dad explained how he has been printing out every entry from my original blogs about Charlie, My Son Has Autism and Autismland (”gives me something else to do besides play Solitaire”) and my mom prepared to make oxtail stew—a dish that made sense since it was about 50 degrees in the Bay Area, versus (as Jim reported to me) 95 in New Jersey—as my relatives were coming over on Saturday night.

Saturday morning I left later than planned. I left my bag by the door for my dad to bring when he picked me up in the evening to go to the airport. “How about we go to the Lake Merritt station?” he said. “That way the trains come every 10 minutes instead of every 20 minutes.” I didn’t think that made much of a difference. As we were approaching Lake Merritt, my dad said, “Do you have a few minutes?” I said, of course yes; no Charlie duty going on. “Good, then you can go visit Ngin-Ngin,” and he pulled the car in front of her house.

We walked by two young Chinese American women who offered us pamphlets about their church and up the old stairs. Ngin-Ngin was in her kitchen, bright and cheerful in the morning sunlight, and one my aunts was there, too. My grandmother has a live-in aide; the aide gets every Saturday off, and my dad and his siblings stay with Ngin-Ngin, who’ll be 103 in October. “She’s going blind in one eye, we think,” my dad said under his breath and went to the dining room to check her mail. I said something in English and Ngin-Ngin said something in Cantonese: The same exchange we’ve been having all these years. I said good-bye and my dad walked me to the BART station and soon I was back at the conference.

Here’s a photo of our panel on mom-bloggers with special needs kids: Shannon Des Roches Rosa, me, Jennifer Graf Gronenberg, Vicki Forman, and Susan Etlinger, who organized the panel. Susan’s put up some photos here, Vicki’s blogged twice about it here and here, Jennifer wrote this prior to the conference, Shannon put up the photo and also here. and wrote about the most important parenting panel at BlogHer08. We talked about how we got started blogging and balancing public and private, especially for children who are disabled. Jennifer talked about editing an anthology about parent writing and how she was told that three submissions by parents of disabled children were too “scary” to include. She disagreed and worked and pushed to get those three submissions in; only one—poems by Barbara Crooker (a friend; I’ll soon be reviewing her latest book, Line Dance)—was not included. (Yes, I couldn’t believe it, and yet I could.)

The panel was too short and there’s more to be said about what was talked about, especially from the audience. I went to another panel, wandered again through the exhibits area and—when I passed the Leapfrog booth again—it was insisted that I take home a Tag and a Leapster for Charlie. I was a little flabbergasted.

After the keynote—Heather Armstrong and Stephanie Klein—-I found myself in two places that are straight out of my childhood mythology. First, the lower level of Macy’s, through which we always entered to look for school clothes before the stores got bigger on the Easy Bay side. The conference held a reception in the handbag section of the store, which led to the surreal feeling of hors d’oeuvres amid the Marc Jacobs. Then onto dinner at a Chinese restaurant, but the handbag displays made it very difficult to find my friends and I left the reception and found myself walking up the hill, pass the Sutter Street garage where my family’d squeezed in our cars many a time. Then through the Stockton Street tunnel, and into Chinatown.

My family never goes to eat in Chinatown anymore. We used to—-Joe Jung’s for the fried chicken, Empress of China for something really fancy, a place maybe called Hong Kong Garden for dim sum—but there’s plenty of places across the bay now, so no need to bother. I went down Jackson Street and only had time for 25 minutes of dinner before hurrying out to meet my dad. I watched the multiple generations of a Chinese family stand around and talk in front of the restaurant as the multiple generations of my family used to. “Ho sik?” the grandmother (who still had black hair) asked three children; the boy was wearing green crocs and running back and forth with his sisters. Someone who might be their father, uncle?, appeared with a baby in a baby carrier and a plastic bag of leftovers.

My dad appeared, very glum. “Do you have my bag—-” I started to say. “Mom called me,” my dad said, with suppressed exasperation. “It’s still by the door to the garage.”  “I said I’d put it in the car but you said not to,” I said. “Yes, I know,” said my dad.

Somehow one of my aunts got to the SF airport in record time, with my bag (containing my cell phone charger….) and I went through security and onto the plane and then to Newark Airport and a Port Authority train station in a random unweeded area on an 80 degree Sunday morning and then to NJ Transit and then I walked home, as it was only 7.30am on Sunday morning.

I didn’t start unpacking till after noon. Charlie—after devouring some Chinese treats my mother had sent—-was sitting on the couch when he saw me take the Leapster out of my bag.

“Give,” said Charlie. “Mom! I want.”

“Sure,” I said. I helped him type in CHARLIE and he fiddled around with the buttons and screen and stylus for the rest of the afternoon until a bike ride with Jim. Charlie reached for the Leapster again as I tucked him into bed and it was by his side when I went to check on him.

I’d been remembering how he had one of the first Leapbooks and loved it, years and years ago, and then things plateaued and we put the toy aside. The Leapster is the same green and green as the book, and has the blue stylus attached by a string.

And I wonder if Charlie thought, on seeing it, that’s something I had once when I was younger, and now I have it, here, again.

Photo courtesy of Ji Design.

I’m speaking at the 2008 BlogHer conference in San Francisco, on a panel called MommyBlogging: Blogging About Our Children with Special Needs and with some other more than noteworthy mother-blogger-writers:

If parenting in general can be isolating, it can be more so when raising a child with special needs. Susan Etlinger, Shannon Des Roches Rosa aka Squid Rosenberg, Kristina Chew, Jennifer Graf Groneberg and Vicki Forman are among those MommyBloggers who are blogging their experiences…and finding both a community…and a cause. Join them. Share your story. Find out how, to quote Vicki, “…to embrace and treasure what makes us all different. And the same.”

The panel is this Saturday, July 19, 1:45-3:00 pm; heartfelt and lively discussion expected.

As noted, the BlogHer conference is in San Francisco and I, as you know, live in New Jersey. I’m flying out Friday morning and taking a red-eye on Saturday night so I’ll be back at Newark Airport around 6.30am Sunday.

I did go to an academic conference in Atlanta last November; I stayed over one night and made sure that my parents were visiting. This time I’m going to be gone for two full nights—-I haven’t been away that long from Jim and Charlie for four years, since 2004. Actually, though I bought my ticket a while ago (mindful of fast-rising airplane ticket prices), I wasn’t sure until this week that I was going to go at all.

Jim, as I’ve mentioned a bit, injured his back very badly while giving Charlie a piggy back ride at the end of May. Jim’s been in pain more or less ever since, sometimes excruciating. For the first couple of weeks, he couldn’t walk more than a few steps and it’s been a long stream of visits to doctors and the orthopedic surgeon. He has a herniated disc—some serious measures are being discussed—-the days of piggy-backing Charlie are completely over. By some great grace, Jim is able to ride his bike and somehow that motion is soothing to his back and leg, so he and Charlie have still been able to go on their journeys around town. Jim’s been able to walk more in the past week and things have been looking much more hopeful.

We’ve both wanted to carry Charlie as long as we could, as if—so long as we knew we could swoop him up into our arms or on our backs—we’d be able to protect him and keep him safe. I stopped carrying Charlie when he was turning 8 and he was on the verge of being able to look eye to eye with me; I still have the muscle in my left arm from years of holding him, supported on my hip as he smooshed his face into my upper arm and shoulder. Jim, being much taller and stronger, has been carrying Charlie longer, but no more. From here on in, he has to walk on his own two feet.

Scary, the thought.

Inevitable, though.

We’ve both been thinking even harder then ever about the realities of Charlie growing up. The challenges ahead often seem greater than if we were to try to scale Mt. Everest. But the fact that I’m going to San Francisco, and that Charlie’s doing so well at school and has shown so much understanding about Jim’s injury—getting himself out of bed without much cajoling to go to school, looking extra serious when I’ve explain that “Dad has to go the doctor right now”—-that I think we’ll be able to keep moving forward (if a bit more slowly; there is no rush); that we’ll be able to keep walking the long road with Charlie. He’s never, ever, a burden and now, indeed, he’s begun to take up his share of the load.

And hope very much—very, very much—- to meet you if you’ll be at the conference.