2.09.2017

How We Are Avoiding Despair Right Now

Like me, you may be bone-chilled about our new American reality: living under an openly plundercratic, authoritarian regime. So, here's a bit of cheer from the good folks at Vox:
"Trump is getting things done, but all presidents do that. Look at what he’s not getting done. A Republican-controlled Congress bowed to public outrage over an attempt to water down an ethics office. Trump dramatically downscaled his own executive order barring entry to the United States from seven Muslim-majority countries. He’s having unprecedented difficulty getting his Cabinet nominees confirmed even though the Senate’s rules have changed to make confirmations easier than ever. Conservatives in Congress have put their big plans to privatize Medicare and public lands on hold. And the drive to repeal the Affordable Care Act is running into very big trouble."
But the assault on everything good -- and the imperfect safety nets so many Americans rely on -- continues, especially now that IDEA-illiterate, public school enemy Betsy DeVos has been confirmed as Secretary of Education, and homophobic old school racist Jefferson Beauregard Sessions has been sworn in as Attorney General -- despite GOP-suppressed open condemnation from civil rights icon Coretta Scott King, as invoked by Sen. Elizabeth Warren.

(For those who, like me, have trouble staying abreast of the daily fuckery on their own, I recommend the roundups at WhatTheFuckJustHappenedToday.com, and also following Bigotry Watch. And remembering to question and confirm everything, and not assume that things shared by people you usually agree with are valid.)

As for the individual responsible for these ills: it may be tempting to dismiss Trump as someone who, as Ron Rosenbaum writes, does "not seem bent on anything but hideous, hurtful simplemindedness — a childishly vindictive buffoon trailing racist followers whose existence he had mainstreamed," but we also have to absorb historical parallels, and be clear-eyed about the dangers of brushing off, or solely belittling, our current president. As Rosenbaum also notes,
Hitler used the tactics of bluff masterfully, at times giving the impression of being a feckless Chaplinesque clown, at other times a sleeping serpent, at others yet a trustworthy statesman. The Weimar establishment didn’t know what to do, so they pretended this was normal. They “normalized” him."
Do not ever normalize or get complacent about our malignant Asshole-in-Chief, do not forgive his team's complicity even if they occasionally rein him in, do not stop resisting.

But, to follow up on the post title: how is our family avoiding despair right now? Besides agitating, signal boosting, and donating to front-line rights defenders? Cooking and kittens, mostly. Going places. Keeping busy and doing things. Reading detective novels about entitled assholes getting caught and punished, because for some reason my usual dystopian-themed futurist and science fiction choices have lost their allure.

Examples: Mali, Godfather Michael, and I went to see Singin' in the Rain on the big screen. Which delighted us all. And because of which I was able to observe that even Gene Kelly's forearms are fine. *Fans self*

[image: Mali in front of her Singin' in the Rain poster,
which used to live on my UCLA dorm room wall.]
Seymour taught Mali how to make a fire, which she enjoyed. I enjoyed that we were actually using our fireplace, which we hadn't yet, despite living in this house for 9 1/2 years. Related: my kids are too young to get Beavis and Butthead references.

[image: Mali in front of a roaring fireplace fire.]


Leo asked very politely to go to the Monterey Bay Aquarium, so we did that too. It was soothing for us all. I remain grateful to the places that always make our dude happy happy happy.

[image: Leo smiling inside the Monterey
Bay Aquarium wave tunnel.]
We have also been frequenting Fort Funston, because we don't have dogs but Mali wants a dog and we're not getting a dog, and all the dogs in the city of San Francisco frolic off-leash there. Plus it's a easy, pretty walk with hang-gliders flying overhead and views of Pacifica and Ocean Beach, and stone curbs for Leo to happily balance-beam stroll upon.

[image: Long shot of Mali and our friend
Amanda strolling on a Fort Funston path.]
We have also been hanging out at Nine Lives, a local no-kill cat shelter that you should definitely visit and patronize, or at least follow on Instagram if you need a (virtual) kitty fix.

[image: Me and my rack, sitting on a concrete
floor, petting lap- and adjacent kitties.]


We were mostly going to Nine Lives to commune with kitties because our one-cat household was insufficient for our kitty-snuggling needs, and our vet told us we had to wait three months after Twisty died for our house to be FIP-safe -- but then their vet told us that they were fine with us taking kitties home whenever we wanted as long as we got rid of our current litter boxes. I believe this is called "enabling."

We immediately adopted two kittens, which Mali named Pippin (so she can call her "fool of a Took" when she's rotten) and Viago (because he is a Maine coon and will have a big ruff). Pippin is as friendly and guileless as her namesake, but Viago is actually more like Petyr -- sweet, but shy with the occasional warning hiss.

[image: Mali snuggles with Pippin, a black-and-white kitten,
while Viago, a Maine Coon big kitten, abides.]
We had to wait a few days between filling out the adoption paperwork and taking the kitties home, so we kept busy with Leo-preferred outings like Transportation Days, riding CalTrain to San Francisco, then taking buses to Hayes Valley (our urban lodestone, mostly due to Isotope Comics Lounge and Leo's love of the pretzels at Fatted Calf). We also met up with Godfather Michael for avgolemono, bubbly, and french fries.

CalTrain is the very best thing ever.[image: Leo on our local commuter train.]
Leo is also spending time on the elliptical machine my cousin handed down to us. As is Seymour. Mali and I, we remain skeptical of this "exercise" thing if it doesn't involve hiking (or karate, or LARP, in her case).

If you can't find Leo, he's probably working out, dude.[image: Leo on an elliptical exercise in a cluttered garage.]

Even though I often applaud Starbucks politically -- it took spine to commit to hiring 10,000 refugees over the next five years as raised middle finger to 45's travel ban -- and am also grateful for my brief baristahood during a time of employment need, they piss me off when they calculatedly land amidst established local businesses. Our downtown recently got the fanciest Sbux in California (or so one employee told me), within a block of three thriving independent coffeehouses/patisseries -- and has visibly sucked the life out of them. Now when Leo asks to go get a straw when we're downtown, we do just that, then I get coffee at a adjacent establishment, like our beloved locally-owned Pamplemousse patisserie et café.

No one who has ever eaten a Pamplemousse
croissant could eat the sub-par Sbux one.
[image: Leo wearing a Totoro/Gizmo t-shirt,
in a cafe, holding a croissant-containing bag.]
However, the days of those green straws may be coming to an end, as we fear they are causing him jaw pain. We'll find out next week, when we talk to yet another specialist. Who, by the way, is amazing: When I made his appointment, she told me to let her know if Leo was not in the mood for an exam, and we could bring him in another time, no problem. And she takes our insurance. Whaaaa?

And then we got to bring the kittens home! For now they are staying in Mali's room, as our bratty calico Sunnie is a suck up to humans but hates all other animals. A few attempts at introducing them have not gone well. For now, Pippin is exploring and knocking things off Mali's desk and shelves.

Pippin the Explorer
[image: fluffy black and white kitten standing
on an open book on a cluttered desk.]
Viago likes to feel secure, and is mostly staying in his pop-up cube. But he also doesn't take kindly to petting stoppage, and will do paw-over-hand guidance back to his scritchingest places. He is also just the most gorgeous and softest and prettiest. And he likes treats, and I am not above bribery when it comes to cats.

How dare you stop petting me, Hyu-mahn!
[image: tabby cat pawing at a human hand.]
Pippin has also already contributed to science, and aided Seymour in capturing purring and grooming noises for an upcoming video on the wonders of cat tongues.

Helpful kitten chewing audio cords.
[image: black-and-white kitten lying next to
a handsome bearded white man who is
sitting and operating audio recording gear.]

More evidence of unease: Iz texted me to let me know she's worried about Seymour's job. Which is understandable, given the administration's quixotic assault on publicly-funded arts and media (the federal government only funds a small part of the Corporation For Public Broadcasting's budget, so taking CPB down is not really within 45's purview). However, smaller stations rely more disproportionately on those federal funds, so please do support your local PBS and NPR affiliate if you can. Also, as this delightful video Seymour passed on yesterday shows, 45's fixation on these programs is absurd from a financial point of view, as, proportionately, they are a tiny fraction of the federal budget. (Some may also wonder if these programs are less costly than maintaining our FLOTUS-in-absentia's New York residence.)

[video description: The Nerdwriter uses drunken food impulse purchases like
crackers, scallions, and cheese to illustrated how inexpensive federally-funded
arts and media programs are, per U.S. taxpayer. Auto captions available.]

We have also been -- praise the rains -- successfully foraging for mushrooms again. (Seymour would kill me if I left any geographic clues.) This past weekend we snagged five-plus pounds of gorgeous chanterelles, which Ep tells me are currently selling for $36 per pound(!), while while we streamed Iz's intentionally angsty college DJ session. Ah, modern life.

Mali the Chanterelle Queen
[image: Mali standing on a rock in a field,
proudly wielding a chanterelle mushroom.]

I even spotted some of the chanterelles! And I am not an observant person. Seymour dug them up for me because, ew dirt, when I'm not actually gardening.

She has caught a very big mushoom
[image: Me holding a huge chanterelle.]

Seymour also says not to accost random friendly Swedish hikers about how awesome their cabinet members are for ovary-trolling Trump, or to offer mushrooms to strangers even if they wax nostalgic about how mushroom foraging is a beloved past time in their homeland, and one that they'd never seen American families engaged in before. OK. One of these days I will learn social niceties.

Then we took the gorgeous chanterelles home and cooked them. Look how incredibly fresh they are inside, almost like a jicama in texture and firmness.

Less than an hour from field to kitchen.
[image: large halved chanterelle mushroom,
upside down on a white cutting board.]
Here are the foods we made with all of those mushrooms: Lamb chops with chanterelle-cabernet sauce (below), chanterelle-Oaxaca omelets, scary-to-attempt Escoffier cream of chanterelle soup (which I did not fail at!), chanterelle risotto, and last night Mali and Seymour finished off the batch by making compound chanterelle butter. Also, cooking keeps me busy and the whole family can do it together and gives us something ELSE to talk about besides fighting the recently inaugurated forces of evil.



Sadly, lamb is baaaaad for my cholesterol.[image: lamb chops with mushroom-wine sauce.]

So that's what we're doing. What are you doing? I'd like to know.

1.20.2017

Yes, He Did. Now What Can We Do?

Of all the things that kept me crying during today's transition from functioning government to proto-dystopia—gut-wrenching fear for my children's future, executive branch corruption and incompetence, Betsy DeVos's staggering ignorance about special education and grizzly bears, ACA repeal—this is what made me cry the hardest:


[image: Tweet from @ObamaWhiteHouse: an image of the Obama family holding hands with Representative John Lewis and other civil rights activists, as the front line of a marching/rolling crowd. Followed by the text "Yes we can. Yes we did. Thank you for being a part of the past eight years.]

My heart cannot grapple with the Obamas being gone. My brain cannot process the extent of the toady- and corruption-scented void the Electoral College dragged into their place.

Confronting this new reality is horrible in an even-kittens-can't-fix-it kind of way (though my current status of living in a one cat household when I'm used to taking my solace under a pile of kitties? That is not helping).

If you find yourself lapsing into despondence like me, please remember what I keep telling myself: there ARE things we can do. Here are a few:
  • Protest, of course -- whether in person, or virtually. While fully embracing our rights to do so
  • Support organizations that will keep our Con-Artist-in-Chief as accountable as anyone that slippery can be, like the Electronic Frontier Foundation (They have a 100-Day Plan, too. Check it out).
  • Added 1/21: Stay on top of the damage being done, like the LGBT Rights section being removed from the Department of Labor site, all references to climate change having disappeared from the official White House website, etc. (I recommend following Kerima Çevik's list on this matter.)
  • Continue to call (if you can) your Senators and Representatives. Calling is gold. Gold, I tell you. Keep your public servants accountable. 
  • Rally for top-notch Democratic leadership, so we can dig ourselves out of this manure pile strategically, and effectively.
I have Opinions on that last one. Specifically, I am putting my marker on Tom Perez for leader of the DNC. As I wrote earlier this week at The Establishment:
"We need a leader like Perez, a former civil rights lawyer, if we are to protect the rights and well-being of people with disabilities and push back productively against Trump’s discriminatory beliefs, staff, and supporters. We need a Chairman with Perez’s history as a supporter and enforcer of disability rights. We need his proven ability to engage with his opposition constructively, rather than through ridicule or open combat. And we need to understand that Trump’s brazen cronyism and political strip-mining can be most effectively countered by someone with Perez’s personal understanding of the damage an authoritarian leader can unleash on a country. (Perez’s maternal grandfather, formerly the Dominican Republic’s ambassador to the U.S., was declared persona non grata by dictator Rafael Trujillo.)"
I am also trying to learn from Seymour, who is tied into news sources and philosophies that fill him with reassurance during trying times. He has been patting my shoulder, a lot. Bless him (sincerely).

This reality—of living under hateful, bigoted, ignorant leadership—is an awful one. But we will overcome. If there's anything to be learned from the decades of blood, sweat, and tears civil rights progress that preceded this backslide, it's that we cannot ever stop fighting for our rights.

1.13.2017

Looming ACA Repeal: Why It Matters to Us, and How You Can Help

Leo: sleeping during a sleep study
[image: close up of a sleeping white
teen boy's hand resting on his chest,
with a glowing red oxygen sensor
on his index finger tip.]
Leo got up at 2 AM this morning, and never went back to sleep. Why? We don't know. Though he wakes up early a lot, he is also generally cheerful (and ready to party). Except for sleep deprivation on his parents' part, this is just the way things are in our house: Leo doesn't wake early on purpose, and he needs our support whenever he's on the move. (We are lucky: I work from home and can pick up nap slack if need be, and on weekends his dad and I tag-team.)

But we still want to know what is disrupting Leo's sleep -- even though we already know sleep disturbances are common for autistic people -- and if it is related to the daytime unhappiness he's been experiencing for almost a year. So we took him in for a sleep study last month, the last in a series of appointments with at least seven specialty doctors and four different scanning/monitoring procedures.

It's been a month since he did that sleep study at a local research hospital, and, according to his referring doctor (who referred him in August, mind you) the results won't be in for another week or so. I'm frustrated, because it's been months and we still don't have answers, but this is also just the way it is. Apparently the sleep study results reading backlog is huge.

Just the way it is -- and we have good insurance. And live in a major metro area with world-class medical options and facilities. And are part of a fantastic, responsive medical group. We are 1) lucky, 2) lucky, and 3) lucky. For now.

But what if the GOP's ongoing attempt to repeal the Affordable Care Act succeeds? Will that affect us? Even if it doesn't, we know -- for a fact -- that a repeal would affect many, many people with disabilities, and/or their families, not to mention far too many other Americans. According to Families USA, the Congressional attempt at ACA repeal is:
"...the biggest threat to the health care law that we’ve ever experienced. And the stakes could not be higher. All the gains we’ve made in expanding health coverage to a greater share of people and strengthening the health care system in America are at risk."
What exactly is at stake for Leo and other members of the disability community? According to NPR,
"[Before the ACA] insurers would cover rehabilitation to help people regain functions they had lost, such as walking again after a stroke, but not care needed to either gain functions patients never had, such as speech therapy for a child who never learned how to talk, or to maintain a patient's current level of function. The Affordable Care Act requires plans to offer coverage for such treatments, dubbed habilitative care, as part of the essential health benefits in plans sold to individuals and small groups."
So, losing the ACA will, for many, be catastrophic. But what can you do? If you need specific guidance or reassurance about how you can make a real difference, Kit Mead put together #SaveTheACA - Affordable Care Act Resources and Actions, which is a great resource list, with sections for:
  • Direct action, calling, and sharing stories
  • Tips for calling and contacting
  • Background information 
And Naomi Kritzer wrote straightforward guidelines on strategic approaches to contacting your Congressional representatives, whether they are supporting policies you agree with or not, and without throwing other groups under the bus.

And if you don't have ties to the autism and disability community -- and aren't incredibly wealthy -- you should still be worried because The ACA repeal may affect you too:
Republicans’ planned bill to repeal the Affordable Care Act (ACA), which is expected to be similar to the repeal bill that President Obama vetoed in January 2016, would provide an immediate windfall tax cut to the highest-income Americans while raising taxes significantly on about 7 million low- and moderate-income families.
This is such a distressing time. (Protip: if the current state of politics is as dismaying for you as it is for me and you haven't watched the series Black Mirror yet? Now is a really bad time to start.) It is easy to feel like nothing matters and you can't make a difference -- but you can, and the best way to do it is to take action by contacting your senators and representatives. Even if you think it doesn't matter, it really, really does.

Please use the guides above to help you take whatever steps you can to #ProtectOurCare. And thank you. Especially if you'd rather be like Leo, especially if you'd rather Just Keep Swimming.

Leo blissfully hanging in a relative's pool on NYE. 
[image: white teen boy from behind, in a lighted-up pool,
at night, with city lights in the background.

12.27.2016

Reminder: Vaccines have nothing to do with autism. Not a single f***ng thing.

A friend recently asked me to join a discussion on autism and vaccines, in which an acquaintance was parroting, much like our ignorant PEOTUS, the misinformation that vaccines are linked to autism -- and also that anyone who says otherwise has been bought by Big Pharma. Here is my response:

Perhaps a personal story might help.

My high-support autistic son is now a teenager. I initially bought into the message that vaccines caused autism, because in the early 2000s it was not easy for laypeople to get past the media hype on the topic, and find reliable mainstream information.

Leo, a preschool-age white boy, next to an outdoor picnic table set
Post-MIND Institute Session
[image: Leo, a preschool-age white boy,
next to an outdoor picnic table set.]
I enrolled my son in a study on autism and regression at the UC Davis MIND Institute, which was founded by parents who sought cures and believed in a vaccine link. The researchers' conclusion, after reviewing my son's infant, toddler, and preschool-age videos, was that he did not regress or react to vaccines, but rather that he followed a typical autistic path of gaining skills and abilities unevenly, and in some cases more slowly than his peers.

In the meantime, researchers have reviewed data involving millions -- literally -- of kids, and found no link between vaccines and autism. Because there is no link in research, only in anecdotes and testimonials that have never once stood up to scrutiny. Not once.

And even the MIND Institute has shifted its focus to understanding and support, and away from its cure-oriented roots, because the founders' theories turned out to be scientifically implausible.

I've since spend much of my time working with autism scientists and researchers as the senior editor of Thinking Person's Guide to Autism, in order to disseminate the most useful autism information possible. I attend International Meeting for Autism Research (IMFAR) every year, and can happily report that, after years of autism-vaccine papers waning in number, the 2016 conference featured only a single poster on how lingering hoax-based vaccine-autism fears affect the immunization status of autistic kids' younger siblings.

So, no. Vaccines have nothing to do with autism. Not a single fucking thing.

P.S. My son is now fully vaccinated.

12.09.2016

Bye, Twisty

Twist went to the big cat tree in the sky today. The veterinary staff were all kind and thoughtful, and they even let us hang out in their new spa-like goodbye room for as long as we needed to. I cried a lot. I may still be crying right now.

The vet confirmed that Twist was probably in a lot of pain even though he perodically rallied, and that it was better to not let him suffer, especially given cats' ability to mask discomfort.

We will read Cynthia Rylant's Cat Heaven tonight and for as long as we need to. We will remember that Twist was a good cat, a pretty cat, who deserved a much longer life -- but that he was adored during his short visit with us. (He really was The Best Cat.)

We will remember the good times. And I will try not to be too sad about the lack of a warm purring kitty snuggled against my back as I fall sleep.


[video description: black and white kitten trying to play with a straw held in a sleeping white teen boy's mouth.]

11.11.2016

Post-Birthday Reality

[image: selfie of a me, a smiling white woman and
my happy teen son Leo, with sunlight streaming
from behind. I am wearing a black t-shirt that
reads "WTF?" In white block letters.]
Leo's 16th birthday made November 9th bearable. He was so excited. There were birthday pancakes for breakfast. There were cake and kazoos and singing happy birthday at school. There was enough joy to distract from the horror of the 2016 U.S. presidential election results.

[image: Leo about to blow out the candle on
a gold sheetcake birthday cake
in a darkened room.]
Mostly we were distracted with cake! There were supposed to be cupcakes, but I was shopping as the election results started to descend into the Abyss, and so was too addled to remember to buy the cupcake papers on the list I was holding in my hand. So, sheet cake. Leo certainly didn't mind. I even made one of the cakes metallic gold, as you can kind of see in the photo.

[image: Leo on a trampoline, with his arms
upraised, looking happy and ferocious.]
Underneath the happiness (so much happiness! trampolines!), << this is how I felt all day. When I wasn't imploding. Because that's what I do, I implode. I'm an imploder.

Our birthday boy, meanwhile, was so gloriously tired by the glorious birthday he'd been talking about for months that he had no interest in opening presents when he got home. Which you have to respect. Go Leo. Love you, Dude. Glad you had the day you wanted, and thank you for giving us a reason to celebrate.

So let's get back to the election itself. I have to be honest with you: on the night itself, I had a rum-and-coke at around 10:30 PM, because once things became truly grim, my only wish was to go to sleep. I had not truly believed this reality could happen, even though I was trying to be cautious and circumspect, and had been reminding people that Nate Silver's model got Brexit wrong.

The day of the campaign, during my I-need-to-stay-healthy-for-my-family hike, my path was blocked by a huge gopher snake. It was at least four feet long, and was completely stretched across the path. I am not scared of snakes, so I gently touched its tail with my foot in the hopes it would slither away and I wouldn't have to jump over it. But no, it refused to moved, and just looked at me, flickering its tongue, telling me to fuck off, it didn't care, it was probably digesting its lunch in the sun, and I could move on, or not. I got chills down my back as I stoped over it, wondering if it was a callous obstructionist omen. Now I think maybe it was. And the panic over this new reality keeps startling me awake at night.

Iz has been pissed but calmly determined in the election aftermath, but I had to talk down Mali. She asked me who I was worried about, and I said, "you." I had to remind her what Pence's hateful stances mean for her, and what his running mate's hateful stances will likely mean for her brother. And then, after she opined about possible solutions, telling her that no, we do not and cannot advocate assassination. We do not solve problems with violence. We have to respect the will of the people even if the President-elect didn't actually capture the popular vote. (At the same time, Iz was pelting us from college with Electoral College grievances.)

I worry how our youngest will react to any enabled hate at her middle school. Last week she was lucky not to receive harsher consequences for her physical, erm, chastisement of a boy who called a friend of hers a slur. I worry that she will unleash martial arts-trained fury at this kind of emboldenment:
[video: various people and images recounting discrimination-based post-election hate crimes.]

I told her it's absolutely necessary to stand up. I said that if she sees anyone intimidating anyone else for  being a girl, LGBT, an immigrant, undocumented, disabled, then she has to say something. She cannot let it slide. (She took a beat, then replied, "That's my whole school.") I said that she has to  speak up, and tell the hater, "no." And then see if she can get the victim away, to a safe place. I said we cannot ever let hate slide.

What can you do? Donate to orgs that stand up for people the President-elect will target. Work with ASAN to support and buttress Medicaid. Get educated, do not get complacent, boost the signals that need boosting. Take care of people who need help taking care of themselves. And don't be lulled into complacency or collaboration, because as a German friend of mine noted, thinking that the stressors and roadblocks of governing would temper the Nazi Party was what actually enable the Nazis to gain total power. And it happened very quickly.

[image: black-and-white cat seen from the
side, snuggling in my lap.]
I'd be interested to hear what actions you've been taking. I've been agitating on social media to the best of my abilities. I've also been spending lot of time cuddling with Twist, our one-year-old puppy-cat. It's almost amusing that, one month ago when we got his FIP diagnosis, I thought  having a terminally ill cat was the end of the world. (Though Twist was only given one to three months, he has perked up considerably and even gained back some weight; guess he's too young to have used up many of his lives).

Me, I'm leaving for Mexico for the weekend. Not as a reaction, but because this trip was planned for months, by a kind friend, who knows we've had a stress-bomb year. We'll be in the very chill Valle de Guadalupe, where many folks live trans-border lifestyles. Really wondering how much more difficult that's going to be, now. Will see what people have to say, and report back.

Take care of yourselves.

*This post was mostly written on my phone, and as Blogger.com, openly warns not to do that, I hope the formatting is not too wonky. But I'm not bringing my damn laptop on vacation.

11.07.2016

Change: Dislike

Leo will be sixteen in two days -- or on, as I like to say, the day after The Apocalypse. He was also born two days after the 2000 election, while the Dubya/Gore contest was still ... contested. I remember the anxiety of not knowing who the President would be -- it's a miracle my milk came in -- so it's a damn good thing I'm not giving birth this week. (Wait -- maybe election anxiety causes autism? I'll have to tell Emily about that one.)

Meanwhile, I'm crossing all my fingers and toes, and voting as hard as I can for Hillary Clinton. Who actually cares about autistic people in the present and the future, as evidenced by her actually having an autism plan. As opposed to her opponent, who is the embodied eructation of willful ignorance, arrogance, and cluelessness. And who I hope loses, humiliatingly, even though he doesn't seem to be able to grasp when he's being humiliated. Because I want us to be able to get back to talking about creating a better world, instead of worrying about reality show bullies wielding real-world nuclear codes.

Leo and Victor when Leo was teeny.
[image: young white boy with short brown hair
hugging a young Latino man with shaved black hair.]
Regardless, change is hard. Really hard. We are going through an extra-strong dose of hard right now: Leo's beloved bro/physical trainer/respite aide Victor, who has been with Leo since he was little, has moved on to a different position that works better for his family. Which is totally understandable. But really hard. He and Leo were and are best buds.

Leo and Victor Yesterday.
[image: white teen boy with short curly brown hair
hugging a Latino man with shaved black hair.]
Which doesn't always happen. Leo has had a lot of people work with him who just didn't get him, and he sensed that and pushed back at them, and they left. It happens a lot, and not just to our family. Finding people who intuitively get individuals, and also understand working with autistic people, that's a specific subset.

It will be OK. Leo will be OK. Change happens, and he doesn't like it and and neither do we, but we were lucky that Leo got to have Victor in his life as long as he did. Leo and Victor have always had a strong sense of bro-hood, which was delightful to observe and always made me feel so happy for my dude and grateful to Victor. Still, much sadness.

Hector, Leo, and Victor
[image: Teen white soccer player with short brown hair
between two smiling Latino men wearing sunglasses.]
And, since Victor is the coolest and nicest person imaginable, he already brought in and trained a replacement for himself: Hector. Victor has assured us that Hector is his double in nearly all ways -- professional background, competence, chill. Leo has already started clicking with Hector during soccer, so hopefully their transition together will be an smooth one.

Fingers and green straws crossed. Also, no more change any time soon please.

10.28.2016

Small steps towards autism acceptance.

Yesterday Leo and I were in our favorite local Latino grocery store, which also happens to be the closest place in town that stocks his beloved Rosa (no really) brand whole wheat tortillas.

During the checkout, Leo was being his usual exuberant self. The Latina cashier greeted him pleasantly, with a genuine smile, and asked his name. He whispered it. Then giggled. She seemed to want to know more about him.

I switched to my crappy Spanish* because I never know how these conversations are going to go, and I don't want Leo to hear people say that they're sorry he exists, and said -- also pleasantly -- "Yes, he's autistic."

Her face fell. But before she could say she was sorry, I shook my head to indicate that she didn't need to feel bad for him, and said with a a smile, "It's not a problem. And with family, everything is possible."

She smiled back, and said "And with God, too." I smiled and nodded, because we all draw on whatever resources power us best.

So that was nice. Not because I think I converted her to any way of thinking, but because she was receptive to hearing about autism acceptance. That doesn't always happen, not with strangers.

----

*Mali will no longer let me speak Spanish when she's around, because she says my accent sucks. She is not moved by my argument that my accent would suck less, if she'd help me practice.

9.29.2016

You CAN Choose Where You Want To Live, If You Have Autism

Little House on the Lane
Photo © Serena Snowfield/Flickr. Creative Commons License
[Image: enhanced photo of a cozy cottage behind a flowery garden.]
The San Francisco Autism Society recently published a rather alarmist article on autism and housing issues written by their president, Jill Escher, titled "You Can Choose Where You Want to Live... Unless You Have Autism." Here's a characteristic excerpt:
"Almost every autism family I know is panicked about their children's futures. If we parents were immortal, it would be one thing. But we are not. We will inevitably decline into decrepitude and disease, and then die. Our children, who are often extremely intellectually disabled and in need of continuous care, will outgrow our capacity to care for them, and then outlive us by many decades.

"It's a terrifying prospect, but when it comes to autism-appropriate residential options, the landscape is not only bleak, it's about to grow bleaker. Adult autism cases are surging — California's, for example, will quadruple to about 100,000 within 20 years (and that includes just the more severe cases) — but former stalwarts of the developmental disability care system, including group homes and care facilities, are all too often closing or slowly being de-funded. For many autistic and developmentally disabled adults deemed "at risk of institutionalization" due to the severity of their limitations, this leaves only one viable alternative: private residences.

"But now even private residences are under fierce attack. Using convoluted and unlawful methods, the Centers for Medicare and Medicaid Services (CMS) is seeking to deter the development of private disability-friendly residential projects across the country by threatening to label them as "noncompliant" with vague Medicaid rules. Rules, I might add, that CMS lacked the authority to enact in the first place."
Unfortunately, this post is misleading on several points, including waiting lists, policy, and legal jurisdiction. I am worried that, because it presents opinions like "private residences are under attack" as fact, and uses outright fudging like "unlawful methods," it may influence families with limited resources to make housing plans or choices that are not in their family members' best interests.

Here is an attempt to clarify some of the post's factual errors, and and hopefully diffuse some of the panic that readers may be experiencing.

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Parents like me and Ms. Escher have every right to be concerned about the trickiness of ensuring our autistic kids with the highest support needs get the living arrangements they deserve as adults, whether we parents are able to be in their kids’ lives or not.

The official housing policy guidelines can be overwhelming and dense, and many of us need guidance to understand them. But we owe it to our kids to know what their rights really are — because I worry that people read posts like this and become terrified and lose hope, without exploring or understanding the actual options available.

Please know: there are no waiting lists in California for adults who qualify under the state’s guidelines — autistic people who need significant support in at least three areas of their lives. In other states, there are enrollment caps for people with medicaid waivers, but The Department of Justice recently issued a Statement of Interest that this may violate the Americans with Disabilities Act (ADA), so hopefully this will be addressed in other states soon.

So it’s not because the tools to create great options for adults aren’t there. And of course, it is hard work to research, learn, investigate, plan, and ensure our kids are set up with the lives they both want and deserve. The existing policies (Lanterman etc.) that allow for supported decision making and limit institutional settings mean that we have to spend time exploring and evaluating, and in some cases creating, the right environments with our children.

It’s also important that parents understand the services available for adult children to continue living at home. IHSS and other services are set up so that adult children who need full-time support can live at home, should families choose that option -- a valid and desired option for many.

The regulations Ms. Escher is concerned about are not meant to abolish group homes: people who rely on public support can still opt for the arrangement that suits them best. Rather, those regulations are to ensure that group homes aren't essentially institutional in nature – to ensure residents have private rather than shared rooms, for example. (This is important for autistic people who are particularly exuberant and/or have sensory sensitivities that make sharing a bedroom a challenge). There are far too many examples of why institutional-like settings put our beloved family members at risk of neglect and abuse.

Housing options for individuals with complex needs in this state (California) are not dwindling. And while we still need to work on getting cost-of-living increases built in, funding has increased enough to take the edge off in many cases: regional centers were recently the beneficiaries of a bill that is increasing funding to all service providers and facilities. New homes are being built. You can see for yourselves the most recent spate of awards -- in the Golden Gate Regional Center region alone, where my son and I live. Also, there is currently $15 million to help regional center service providers and vendors comply with the newest HBCS regulations.

Also, CMS's jurisdiction over the types of setting where HCBS are used is legitimate as outlined in the statute, and does in fact follow the administrative procedural act – they are not required to go through a separate notice and process comment about enforcing this rule in specific situation. Again, the idea is to ensure that HCBS funds are not used in settings that have "institutional" aspects, in keeping with the new regulations. More details: https://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/home-and-community-based-services/downloads/home-and-community-based-setting-requirements.pdf



I realize that Ms. Escher and the people who work with her on housing issues want our children have the best housing options possible when they become adults. But we owe it to those loved ones to make sure we use accurate information during the long and crucial process of securing homes that allow our adults-to-be to not merely live, but thrive.

More California State policy info:
Necessary General Housing Reads:

9.27.2016

Autism and Health Care: Excerpts From My Patients 2.0 Presentation


Video description: Red-headed white woman (me) giving a presentation on
autism and health care at a professional conference.
Periscope video is low resolution and sideways, apologies.

I was honored to be invited to give a presentation on Autism and Health Care at the Patients 2.0 conference this past weekend, as part of the Health 2.0 2016 Conference in Santa Clara. The hosts took a partial Periscope video recording of my presentation, so here 'tis. Please share if you find any part of it helpful.

Transcript

Slide One reads:
Autism and Medical Care: Best Practices
Shannon Des Roches Rosa
Thinking Person’s Guide to Autism
@shannonrosa
www.ThinkingAutismGuide.com
[Periscope video and audio begin after the introduction, in which I talked about being the parent of a high-support autistic teenager, and the fact that the Thinking Person’s Guide to Autism community includes autistic people as well as parents and professionals, and that we are very informed by autistic perspectives]

[Talk begin mid-sentence]

“…that people can’t access the kind of care that they deserve, and that they need, because of lack of understanding of what it means to be an autistic person in a healthcare environment. So even though I’ll be talking about the autistic experience in general, a lot of these things are relevant to health care.”

----

Slide Two reads:
Autistic People: Wired Differently

•What is Neurodiversity?
•Autism as Disability
•Autistic Heterogeneity
•Functioning Labels: Not helpful!
“The most important thing to know about autistic people like my son is that they are wired differently. That is what Neurodiversity means. If you’ve seen Steve Silberman’s book NeuroTribes, if you've read that, it’s basically the history of how autistic people have always been here, and it’s just that we are now able to recognize who they are, the diversity of ways in which autism presents in individuals, and that autism is not a necessarily a disease ... I mean it's NOT a disease.

“That is what neurodiversity means. If you talk to some one like Steve Silberman, he likes to say that it means “not all great minds think alike.”

“And so if autism is not a disease, what is it? Well, it’s a disability. And when you have a disability, what you need to function in the world are accommodations. And unfortunately, because autism is often perceived as a disease, or considered something willful on the part of the autistic person themselves, these accommodations are too infrequently given.

“I know this because with my son personally, I have had a lot of difficult experiences with health case, and I know I'm not alone. I'm not sure how much you already know about autism -- but even though there are various schools of thought about autism as “biological disorder” being caused by "leaky gut" issues or all other kinds of pseudoscience, what is actually true about autism is that autistic people, like anyone else with a condition or a disorder, can have a lot of co-occurring health conditions -- those can accompany autism, but they don’t cause autism. Because autism is neurology, autism is the way your brain is wired.

“And that plays into the concept of autistic heterogeneity, and you’ve probably heard the phrase 'if you’ve met one autistic person, you’ve met one autistic person.' And what that does mean is that while there are a number of common autistic traits, that doesn’t mean all autistic people are going to have them. So you have have somebody who is intellectually gifted but non-speaking, and you can have someone who is developmentally [I meant intellectually] disabled but fully conversational. It really depends on the person.

“That’s why things like functioning labels like “low functioning” autistic person or “high functioning” autistic person are not really helpful. In a health care scenario, if someone is considered “high functioning” then people assume, “oh, what’s their problem? Why can’t they deal with this? Because you’re so high functioning, you can have a conversation, obviously you should have no other problems.” That means their disability is actually ignored.

“Then when you say that somebody is “low functioning,” somebody like my son, well, watch out — because if you think that he doesn’t know what’s going on, then he’s basically going to take you for a ride. He’s completely aware of everything that’s going on around him, even thought he’s technically considered non-speaking and he’s technically considered intellectually disabled. He understands everything that’s going on around him, and God forbid you leave a piece of pizza or mention something that’s going to happen later that you don’t want him to know about — that’s on you.

“So, functioning labels are not helpful.”

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Slide Three reads:
Consider The Autistic Experience

•Sensory Processing
•Auditory Processing
•Eye Contact
•Echolalia
•Dyspraxia
•Motor Processing
•Meltdowns vs. Tantrums
•“Behaviors”
“So, functioning in general, being in the world in general, but also in a health care scenario, we really have to consider the autistic experience. There are a number of traits that are not necessarily common to every autistic person, but are very common for autistic people in general.

“Those are things like sensory processing. What that means is that we have the five senses: hearing, seeing, touch, all of those things are either under responsive or over responsive. So it can be absolutely excruciating for an autistic person to be in a room that has this kind of echoing sound that we have right here — so they might need to have noise-canceling headphones to be able to function. They might be able to see the fluctuation in a fluorescent light in a way that somebody who’s not autistic would not even notice, and it might make it completely impossible for them to function in something like a medical waiting room, or in a medical office. So if you’re trying to have an exam with someone who comes in for some other medical condition, and they can’t even handle being there, then the option is to provide different kinds of lighting, things like that.

“Auditory processing is another issue; a lot of autistic people have processing delays. This is why a lot of autistic people rely on closed captioning when they watch videos, or when they watch movies, because that allows them to process everything visually, as opposed to processing them visually and auditorily at the same time. And this is another reason why a lot of autistic people prefer to communicate visually, prefer to communicate via text; or it’s nice for kids if you have things like visual schedules to help them understand what you are saying.

“Another thing is eye contact. People are always talking about how “we need to teach autistic kids to make eye contact.” Well, that’s not helpful. A lot of autistic people, because of these processing difficulties, can either give you eye contact or they can pay attention — and you need to choose which one you want. Because it’s not necessary to make eye contact even though it is socially desirable; and for a lot of people it’s not necessary to do for someone to know what’s going on.

“Echolalia is another thing, that means scripting, so a lot of time people may talk to you using pre-prepared phrases like movie quotes, or quotes from books — and anyone who’s every had the movie Caddyshack quoted at them knows non-autistic people do this, too. But a lot of time with autistic people this can be a form of functional communication, so they don’t have to think about stringing all the words together — they can just grab their set phrases, use them, they work, everyone’s happy.

“Another item that’s really important is dyspraxia and apraxia, or motor processing. A lot of times when autistic kids and people don’t speak, that doesn’t necessarily mean they don’t understand. What it can mean is there’s an apraxia, a motor control issue that prevents them from being able to speak. And so in those situations you need to make sure they have correct communication supports, so that they understand what's going on, and they can communicate what’s going on with them correctly.

“This is also why things like Applied Behavioral Analysis can be problematic, because -- and I don't know if you already know what that is -- if you have an actual motor control issue, then you’re not going to be able to respond to commands like “touch nose.” You can hear the person say “touch nose, but you can’t do it. And so that's related to motor processing."

[video ends, but I continued to discuss the topics on the slides not featured in the recording]

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Slide Four reads:
Autism, Aggression and Self-Injury: Approaches
[Note: This section drew heavily on Dr. Clarissa Kripke's talk Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices]

•Primary Approaches
  °[Ensure an] Autism-Friendly Environment
  °Physical Exam [Medical reasons for "behaviors" are too often overlooked]
  °Exercise [So helpful for some]
  °Communication Support [mandatory for anyone with a communication disability, whether communication needs are intermittent or ongoing]

•Secondary Approaches
  °Medication [fighting stigma, consider autistic tendency towards paradoxical reactions]
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Slide Five Reads:
References

•Dr. Clarissa Kripke: Director, UCSF Office of Developmental Primary Care: odpc.ucsf.edu
•Autism, Aggression, and Self-Injury: Medical Approaches and Best Support Practices: www.thinkingautismguide.com/2016/08/when-autistic-children-are-aggressive.html
•AASPIRE toolkit: www.AutismAndHealth.org
•Dr. Steven Kapp: Respecting Neurodiversity in Therapy: bit.ly/2cTexhB

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