Back to School High

Iz is in high school. A rather awesome public high school, if you must know. (It was chosen for its combined excellence and diversity to kick off Education Secretary Arne Duncan's upcoming Education Drives America bus tour.)

I can't believe it either. She was in preschool when I started this blog in 2003. So those of you parenting tiny people right now, hold them tight, and take lots of pictures + copious notes. Parenting mental fog plays tricks with how we track time, and if you don't pay attention, that scrumptious tiny person will disappear and be replaced with a great big person -- and if you ever want to spend time with the mini version again, you'll need your records to reproduce them.

That doesn't mean I want tiny Iz back, because -- idiopathic, random, yet stereotypical teenage bershon behavior aside -- she is still the warm-hearted, thoughtful, intense, amazing kid she always has been. But just so big! She's almost as tall as me. She has ... distinct ideas about how to dress, what to read and listen to and watch, and they don't always sync with our nerd family hive mind. Which is fair. But. But.

Leo also restarted school, this year in 6th grade. He was also tiny -- not even three years old! -- when this site started, now he's nearly as tall as me when we sit next to each other on the couch. I think Leo was pleased to have school resume after a one-month break, as much as he enjoyed our constant excursioning and hiking and visits to CalAcademy, plus a week at camp. School is consistent, school is reliable, school means constant 1:1 attention and extra-close attention to requests and needs. He was generally in a good mood this summer, but has been even more cheerful since his school van resumed picking him up every morning.

His school also remains the best possible place for Leo -- the staff so responsive and intuitive, so firmly behind our boy, in terms of believing in him and understanding what he needs to succeed and keep learning. I just wish that it didn't have  ongoing funding worries, like so many CA schools and sped programs.

I also remember when school for Leo was ... not so good. So we've been running a back-to-school series at Thinking Person's Guide to Autism, and I recommend reading the last two entries: Autism & Back to School: What Do You Wish You Knew? with advice from several TPGA contributors from parent and student perspectives, and Autistic Students Need Autistic Role Models, on how autistic self-advocate Karla Fisher helped get an autistic student out of crisis so he could succeed in school. Karla has excellent points about how just about any program for autistic students can benefit from autistic insights.

Mali was the last of our three to be summoned back to class. Third grade! She didn't even exist when this site started. But I am constantly grateful she's here, even though her on-the-fly parenting needs suck up my energy disproportionately (anyone who's hung out with her in the last few months can attest to her OMG social supernova factor).

We've decided to keep her in Spanish immersion, even though Iz's former GATE school offered her a spot. Bilingualism and biliteracy are huge gifts, plus I've observed Iz's friends who completed the program through the years -- they're certainly not at an educational disadvantage compared to Iz's GATE classmates, quite the opposite in some cases. And Mali seems to grasp not just the opportunities but the fun of being bilingual. It's a good choice, for her.

Back to school is a good choice for me, too. My brain fell out of my head the moment classes ended in June.  I've only attended to items that were on fire for the most part, in the interim. So it's good for us all to be back. And I hope those of you also in the thick of back-to-school are feeling the goodness.

Two-Timer

Leo's dad has an iPad now, too. Which means that Leo can completely control one of his favorite scenarios, which is to have a preferred video and a preferred app going, simultaneously. Happy boy. (Talented boy.)

----

We've been busier than busy this summer, this year, for just about ever. Hence the lack of documentation. But the kids start rolling back into school tomorrow. Expect tears, of regret and of relief.

For New Autism Parents: On Gratitude

Leo's passed the eleven and a half years mark. I feel like I'm finally hitting my stride as an autism parent, in terms of accepting Leo on his own terms, and not giving a damn about the imaginary "easier" alternate reality society thinks I'm supposed to pine after. This means I think a lot about the information and attitudes I'd have wanted to jack, Neuromancer-style, straight into my brain eight years ago so I could instantly be the parent Leo needed me to be.

And that's silly -- neural enhancements aside -- because instant downloads do not equal instant attitude adjustments. There's often no substitute for experience constructed out of progressive, natural epiphanies. Still, that experience can be altered dramatically by external factors, like consistent exposure to positive attitudes and helpful perspectives; they shape our final outlook as parents and as people. So I'm going to dole out some perspective, and attitude.

I think a lot about gratitude. Appreciating what I have -- and I have a lot, as does autism parent Marie Myung-Ok Lee. Appreciating Leo and his sisters for who they are. Thinking about what we do have, what we get to do (see local hike photos below), and recognizing the poisonous futility of dwelling on what we don't.

Leo does love benches along the trail

It's understandable for people new to the disability community to dwell on not-having. Our society stigmatizes disability so vehemently that it's often difficult to see this new scenario through any lens other than that of exclusion and unfairness. Until you step back and realize that all of life is not-having, if you make the choice to view it that way.

Early evening summer hike

A frivolous example: I can't take Mali to this weekend's Mary Poppins singalong because Seymour will be out of town, Leo wouldn't like the decibel level or chaos, and I can't justify a babysitter (Iz is hitting the back country trails at high Sierra camp for two weeks). I'm bummed, but I also accept that parenting in general means not doing a lot of stuff I'd rather do. Missing a movie is no different from the hours I spend not-having experiences and options because of the choice I made and time I put into to being a parent. Yet I'm encouraged to chuckle over and commiserate about typical parenting drudgery, while anything having to do with parenting Leo is perceived as either noble or tragic. Which is unfair and uninformed, as what we do for Leo is simply what we do, because of what he wants and needs. Just like what we do for his sisters.

Manzanita berries

Is parenting Leo different than parenting his sisters? Sure. Are parts really damn hard? Sure. Is parenting him harder than the unfixabilities of raising a neurotypical child who cannot retain friends, or who gets pregnant at fourteen, or who is an ungrateful, entitled, unapologetic, dismissive jerk? Now that I've been doing this for a while and we have defined our own happiness, I don't think so. I look into my beaming, affectionate son's eyes -- they are gorgeous -- and wonder, why is anyone supposed feel sorry for the two of us, in our contented companionship? I'm grateful that this beautiful boy is my son.

Poison oak can be beautiful, too

I suspect some of the pity we get ladled with has to do with communication. Leo's is atypical,  speaking and articulating are a challenge. But as I watch multiple marriages flame out around us -- many with little thought for the children involved, except as extortion crowbars, and all sans significant quality-of-life issues -- I have to wonder: what exactly does the ability to communicate typically guarantee? Especially when listening is not prized equally? Leo listens well. He's not much for abstract concepts, but he's present, and he understands, and he acts directly on what he hears. He always tries to get it right. Who should you feel sorry for, again?

Found structures along the trail

I wish I'd known how important gratitude is, earlier. I wish I'd had someone shake me by the shoulders and to tell me to focus on my giggly, sweet Leo and what he can do, on helping him do more, on putting my energies into on helping him build his best possible present and future. On searching out role models in both the parenting (what it's like to be Leo's mom) and autistic (what it's like to be Leo himself) communities, all of whom understand which parts of our lives are genuinely challenging, and which parts are a matter of what Leo's godfather Michael calls "attitude recalibration."

210° panorama from the hike's hilltop. Embiggening encouraged.

We've been fortunate enough to find those communities, and for that and for so much in our lucky, lucky life -- I am grateful.

Autism: It's Nobody's Fault When It's Hard

Iz is a wonderful big sister to Leo. This is her at last week's family reunion, letting Leo know that the group photos won't take that long, explaining that if he could just sit for a minute, then he can go back to the playground even sooner, and that he's being awesome and patient.

I don't have a photo of her and Leo from yesterday, when she got into a teen defiance spiral while we were in the car, and wouldn't stop yelling, wouldn't stop shrieking even when I said she needed to stop because she was upsetting Leo. He ended up losing his temper completely and whomping her. I wouldn't want a picture of that.

Afterward, she cried and cried and said she was sorry -- but she also said it isn't fair that she has to behave in certain ways so Leo won't get upset. I said I was really sorry he hit her, and I was glad she was OK -- but that the situation was completely preventable. I reminded her that Leo has both sensitive hearing (yelling is painful) and extreme emotional sensitivity (if other people are upset, he becomes even more so and will do anything to make it stop). Getting upset was not his fault. If we want to help him control himself, we have to control ourselves. (That it is never acceptable to yell the way she was yelling is another, puberty-driven issue.)

Accommodation is part of being part of an autism family. It's just what we do. And while we may wish things were easier for Leo because it is hard to be intensely autistic in an NT world, and while I understand that it's not easy for kids and even parents to have to change their behaviors for another child's sake -- accommodating others' needs is the deal in any family. It's just that accommodations can be more obvious when a family member is disabled.

I told Iz and Mali that it's OK to discuss situations that are hard. But I also told them it is not acceptable to blame Leo, or resent him, because of circumstances over which he has no control or which are part of his autism (e.g., they are welcome to chastise him if he steals a piece of their pizza).

Leo is always doing his best, he just got through a week of chaotic family gatherings, his sisters know he's a capable kid. He also needs us to support him as best we can, and avoid avoidable crises. He deserves nothing less.

Side note: I've been blogging for 9 years as of yesterday. And this is my 2,500th post. Holy hell.

Birth Mother Dithering

A new comment popped up on my two-year-old BlogHer post Facebook-Stalking My Birth Son:

"I really have no right to say one way or another what you should or shouldn't do, but from what I have read,-If you are correct in that your son has never been told of his adoption-than he has had something taken from him that nobody has a right to take; it seems that you are justifying and making excuses for the adopive father's completely selfish choices, even though your pain and anger is apparent in the intro of your post.  Your son is now an adult, and you speak of him as though he is still a child. Your decision is perhaps very "noble" but quite unfair to him really...IMHO, he at least deserves to be given the right to choose what he wants to do with the information.  He has a mother out there who has never forgotten him!!!! What could be more valuable?  If he's not interested in following up then fine, but lurking behind the shadows is certainly no good to him (or you really)."

My response:

It is reality-altering information, and there's no taking it back. But you are right in that I'm feeling cowardly, too -- so far, I haven't been rejected by him, at least not overtly.

What do you think? If you were adopted, do you think it is your right to know that information, even if your adoptive parents never told you?

His parents and I never agreed to open or closed, really. His mother was always good about sending me photos, but she died fifteen years ago and since then I've not heard a thing. And I really do think  this information should come from his father, not from me. It would be a hell of a lot easier if I could just find out if he knows he's adopted or not!

We Rode the Ducks!

When Leo and his sisters are out of school for the summer, my focus shifts to keeping us busy busy busy -- as I wrote this week both on BlogHer and at Thinking Person's Guide to Autism. So when we were invited to Ride the Ducks in San Francisco -- take an amphibious tour of the city's streets and bay -- I said Yes Please.

Leo adores riding in buses, trains, boats, and planes, so I suspected he'd love riding in the boat/cars. And I was right. The tour ended up keeping him happy and entertained for nearly two hours (and you're welcome to browse our photoset). The only issue we encountered had nothing to do with the Ducks -- Leo announced he needed to hit the head as soon as we boarded the vehicle, and all the bathrooms in the Fisherman's Wharf vicinity have long long lines -- so we ended up needing to take the next tour instead of the one we'd booked. The Ducks staff were patient, friendly, and helpful and made the transition to the later trip seamless. Whew.

Leo and his sisters were all thrilled. We spend a lot of time in San Francisco, but we rarely visit the most touristy places -- which means they don't know those areas of the city. So tours are actually a decent way for kids to learn some history nuggets.

 

The kids were given "quackers," and were encouraged to quack throughout the tour. Mali had no problem leading the charge. Iz helped Leo figure his quacker out.

While we waited for the tour to start, Leo and Iz chilled via iPad. Leo is absolutely obsessed with the spelling app WordWall.

We saw many, many, many landmarks. Like Alcatraz. Which, to my great embarrassment, I have never visited.

And hey, Coit Tower. We visit it frequently, because we love its murals and the local history they depict.

Wish we'd been able to make some stops, alas. City Lights actually has a great kids' book section.

It was a beautiful day to pass through Union Square.

This is the main San Francisco Apple Store, which is always a beehive. I was one of the speakers on an iPad panel there just last month.

About to go into the water, just south of AT&T Park. Look, there's another Duck!

Our captain, who is also named Leo, let Iz drive the Duck once we got in the water.

As  you might guess by this photo, the sea leg of our trip was Leo's favorite part.

AT&T Park! I hear it's a lovely place to see a game. I've never been. You'd have to hit me over the head with a baseball bat and drag me in by the ankles -- I spent my entire childhood being shunted to my three brothers' baseball games, and never care to see another inning.

We weren't the only ones at sea.

When we got back on land, we drove right by the ball park. I will admit that it is a beautiful ball park.

And it really was a beautiful day, as this Bay Bridge shot illustrates.

Again, Leo had a wonderful time. I knew from experience that he would likely sit still through the entire trip, but I also knew that since we were going through the touristy parts of San Francisco, we could exit the vehicle and take a cab or cable car back to Fisherman's Wharf and our vehicle, at any time. I was slightly nervous about the vehicle's open sides, because Leo has jumped out of small boats in the past, but it would have taken a significant effort on his part to escape. I think if your autistic child is the kind of kid who enjoys "transportation days" and has never tried to escape from a moving vehicle, the Ducks tour would be a fun choice.

An Autistic’s Review: Thinking Person’s Guide to Autism

L to R: Corina Becker, Kerry Magro, Shannon Rosa,
Stephen Shore, Carol Greenburg, Jennifer Myers.
TPGA contributors all. At IMFAR 2012.

This review is by self-advocate Kerry Magro, whom I finally met in person at IMFAR last month. Thanks Kerry!

Kerry was diagnosed with Autism at 4 years old. Now as an adult Kerry has become a disability advocate who has been featured in television, radio, and film. Today Kerry works as a Motivational Speaker, Co-Host of Hope Saves The Day: Autism Radio, and Vlogger for his blog “My Autism My Voice.”

Kerry also taped a video review:



A community is defined as a group of people living together in one place where they are often intertwined with a common goal or purpose. Now, if you were trying to define an autism community, this book could certainly be one of your best examples of that. Thinking Person’s Guide to Autism, which was edited by Shannon Des Roches Rosa, Jennifer Byde Myers, Liz Ditz, Emily Willingham and Carol Greenburg gives us a look inside autism in today’s society from some of the people who know autism the best. It started off as a blog where they asked people within the autism community to send essays focused around autism related topics. It ended up book published by Deadwood City Publishing.

This is no ordinary book. After reading it I was astounded by the amount of information. There is a wide range of topics in essay’s that stay on point with a clear mission and purpose. It is something that any reader who cares about autism can get behind.

I had always been an avid reader of the Thinking Person’s Guide to Autsim blog and even wrote a blog post for them about Coming Out About Autism in College in August 2011, so I knew first hand that a collection of these blogs posts could be great.

The main areas of the book that stood out to me were done by the editors along with the essays by Laura Shumaker (SF Gate, A Regular Guy with Autism) and Jess (A Diary of a Mom). The book does a great job of balancing between informing the reader and also giving hope and inspiration to them as well. It’s a book that’s very well rounded overall.

Along with the essays comes a great deal of resources at the end of the book, which I found impressive. Between recommendations for books, movies, online resources, and blogs, there is a sense of further learning for readers of the book.

The next step I see for the autism community now is to continue to encourage young individuals on the autism spectrum to pursue literary work. There were several essays from autistic adults in the book and I’m optimistically hoping that we hear from one or more of these voices on a best-seller list in the near by future.

In the end I commend everyone at Thinking Person’s Guide to Autism for all their great work in this project and hope they come out with a sequel very soon to include more of the blog’s wonderful essays.

If you want to learn more about The Thinking Person’s Guide to Autism please check out the blog here.

"Want to go to Disneyland?"

Leo keeps asking to go to "Disneyland," so we spend the morning looking at pics from our trip -- to Leo's utter delight. We need to figure out a way to get this boy back to Mouse Land -- he's been asking for "Disneyland?" with increasing urgency.

My brother (the cheeky dude in the glasses) took the above shot-of-the-shot of us on the California Screamin' roller coaster. At the time Leo wasn't so pleased, but when he saw this pic this morning he pointed at it with extended index finger and said, "Again?" (Yay fine motor skills!)

Also Leo woke me up this morning via the repeated top-volume "ka-thunk ka-thunk ka-thunk ka-thunk" of a cheap plastic soccer ball being kicked and successfully, repeatedly returned to a wall at short range (though I'll admit to wishing he had chosen a location other than my echo-chamber bathroom). Our boy has some serious gross motor coordination and reflexes, we need to provide him with more outlets -- but in the meantime, any one who wants to hang out with Leo should now feel free (or even obligated) to kick a ball around for five, ten minutes. (Yay!)

In the meantime we have been watching this Star Tours video a lot -- that was Leo's favorite ride. Anyone have any other favorite YouTube Disney videos?



---- We have been so many clicks beyond busy that I don't even know what to write about that. But Leo is certainly in a good space, and that makes everyone happy here.

How You Can Counter Jenny McCarthy-Style Autism Misinformation

The Chicago Sun-Times recently featured a Q&A puff piece about Jenny McCarthy and Autism One. It was the kind of outside-autism reporter's guileless autism misinformation-mongering we might have expected three years ago, but which has all but disappeared from mainstream media after Jenny's autism-vaccine oracle Dr. Andrew Wakefield lost his medical license due to his callous disregard for scientific ethics and rigor.

As this is 2012, Thinking People were understandably upset. Specifically Seth Mnookin, who wrote about the McCarthy Q&A and its ongoing metamorphosis regarding the nature of the Sun-Times' support for Autism One on PLoS: The Panic Virus:

On Sunday, the Chicago Sun-Times published a fawning, credulous Q&A with Jenny McCarthy, who has been more responsible than anyone in the country for advancing the spurious idea that there’s a connection between vaccines and autism.

The comments got heated, as one might expect when expletive-armed pseudoscience true believers rage against evidence-wielding science supporters. Surprisingly, those commenters even included Ms. McCarthy. And Eileen Hall, author of a petition asking the Sun-Times to "Provide space for parents who support autism acceptance to respond" (ideally, the title should have said people, not parents).

The result is that Mr. Mnookin has temporarily disallowed further entries -- which is understandable, and he posted his rationale at the end of his original post.  But what was unfortunate is that this happened before many folks and allies from the self-advocacy and neurodiversity community were able to join the discussion -- myself included. Here is what I would have written:

Thank you Seth, and Eileen. But we are arguing with self-appointed cult leaders. We're not going to get through to them -- Jenny McCarthy's entire industry and her followers' entire belief systems would collapse if they stopped telling the world that their children are broken, or that autism is an epidemic & disease. We can only work towards real change by positive role modeling, by including autistic people in autism conversations, and by trying to reach people before they fall for such dangerous misinformation.

One thing you can do to work towards real change? Buy a copy of Thinking Person's Guide to Autism, and share it with someone who needs it. Ask your library to stock a copy. Give a copy to your pediatrician, or your district's superintendent or special ed director. Use our mission statement to explain why. And remember that, as a Thinking Person, you are never alone when it comes to countering dangerous autism misinformation.

Expectations Adjustment: Professional Hair Styling for 8th Grade Graduation

Iz, as you may be shocked to learn if you've been reading this blog since I was dithering over whether to put her in kindergarten or first grade, will be going to high school in the fall. HIGH SCHOOL. Which means avalanches of shock and denial on my part. What the hell, people? She is almost as tall as me, definitely more athletic and academic than I ever was, and -- based on superficial factors -- certainly more likely to leave a trail of broken hearts in her wake. If she wasn't so damn cheeky I'd be mired in appreciative rather than irritated disbelief at the marvelous being Seymour and I spawned.

But before she hits the big grades, she'll be graduating from eighth grade. Next month. There will be a ceremony. Which is apparently a much bigger deal than it was when I hurriedly tossed on my lone Jessica McClintock frock and sat blinking in the Anaheim sun, alternately taking Disc camera photos of my friends, and family -- including my brother Chet, who had just finished his first year at the USMA, looked very handsome in his uniform, and made all the girls squee. It was fun, but it was not a source of stress.

Things are different for Iz's peers, apparently. As Iz informed me yesterday, "all the girls" now get their hair professionally did for 8th grade grad. To which my reply was a parent-censored version of WTF. Really? Professional styling for thirteen year olds?

I don't have a problem with girls of any age occasionally getting their hair or nails done at a salon, as a treat. I do have a problem with kids expecting those services as their right, especially with entitled attitudes that include declaring, as Iz did, that it shouldn't be a big deal because it's "only 35 dollars." As if she had 35 dollars lying around. And not as if she asked what she could do to earn said $35 (though she did, later, after the top of my head blew off and she realized she needed to rethink her strategy). As if we hadn't had a conversation just the month before -- after one of her cousins offhandedly described a non-essential cost as being "only $50" and I almost fell over -- about the difference between understanding a good deal, and not understanding the value of goods and services or of currency itself.

It's not as though she doesn't know how to do her own hair -- she spends hours each day straightening and molding and manipulating her tresses, with mostly impressive results. And it's not as though she doesn't have a mother and friends and auntie-friends like Jennyalice and grandmothers who have Hair Skillz at her disposal. But for some reason, she seems to think her hair won't be "right" unless it's done the way her friends are getting it done.

I suppose I'm mostly dismayed with what I see as a continuous cultural shift away from self-reliance and towards dependence on professional services when it comes to self-care. But maybe this is just the way her generation will be? Maybe it's a California thing? Maybe a cultural thing?

She'll look great either way. But does a 13 year old girl really need professional hair styling? My gut tells me no. But I'm not living her life, I'm revisiting mine -- as someone who loved figuring out how to create Audrey Hepburn updos, What's New Pussycat straight red sheets, and Veronica Lake peekaboos all on my own. Am I expecting too much? Is this just what kids do these days?

Food Tolerance Win: Saag Paneer!

With Leo, sometimes routine trumps all. I'm guessing that's why, after almost two years of me dipping naan in saag and handing it to him, he took over the damn saag-dipping himself.

And now our boy eats spinach voluntarily, just as he does his daily dose of cod liver oil. And his diet is a rounder arena than it once was. Now we just need to help our boy with some of his own roundness. He's got that pre-adolescent lingering chub thing going on. Cute, but just on the cusp of unhealthy, according to his pediatrician, with whom he had his annual exam two weeks ago.

I prescribe: More hiking! Hiking season resumed just two weeks ago:

We've had weird wet spring after a rather arid winter. It's been heaven for Seymour the mushroom forager -- his secret porcini & chanterelle spots are still productive -- but local trails are only now non-mucky. Apparently local drivers' skills are changeable as well, as this is what the entire side of our parked-on-the-street car looked like when we emerged from the oaken hillside:

I'm driving a rental while my car's entire driver's side exterior gets replaced. Mali was less concerned about our car itself than transferring her library copy of Harry Potter and the Half-Blood Prince to the new car's CD player. Leo doesn't seem to mind driving in a different car. And I'm intrigued by this thing called "XM Radio" which lets one have single-theme channels like "Crappiest 80s Tunes." I can now blast fetid Rick Astley or painfully monotonous Nu Shooz at Iz if she and her friends try to use their iPods to flood the car interior with shallow shiny One Direction tunes.

Off to the annual school district fundraiser. I am tired. Hope you are well.