12.17.2014

Malaise Managed

We are very, very lucky people. When my windshield started leaking and my car interior flooded, the shop that had replaced the windshield fixed the leak for free. We have had stormy storms for about a week now, so this was excellent news. As was the ability of the iPad geniuses to fix Leo's bricked iPad yesterday. As was the AT&T insurance policy folks' ability to replace Iz's bricked iPhone yesterday. As was the tire shop's ability to repair rather than replace the flat tire that nearly stranded me in San Francisco an hour before I'd needed to pick up Mali and her friends from school yesterday. As was my sweet, sweet husband's ability to change that flat to a spare in the dark & pouring rain. Overall, it does lend a pecked-to-death-by-ducks feeling to the day-to-day, but every single one of those incidents was fixable because we are lucky people.

The non-insurance-policy-fixable stuff, the non-bloggable stuff, has been a bit more interesting and intense -- but even so, we are a tight crew with many, many parachutes at our disposal. We are lucky.

And when things get particularly malaise-inducing, I have my son to remind me about how to bust a grump slump. Specifically, seek out:

1) Beautiful coastal hikes with coin-operated telescopes
[Image: Leo from behind, wearing a red tee, looking through
a blue telescope at distant rock formations and ocean waves]

2) Otherwise unapproachable rock formations, seen through said telescope:
[Image: Diagonally striated rocks with ocean
waves in front, surrounded by a black then
a white circular field.]
3) Whooping it up on a nearly empty trail on a glorious day with abandon and no worries*, as everyone has stayed away either due to holiday shopping or rain worries:
  
[Video: Leo happily whooping as he hops towards the camera.]

4) A good long challenging hike in even though the trail is completely paved. (Wondering what our wheelchair-using friends think of the 9% grade section -- it's about 1/4 mile long):
[Image: yellow sign with black type reading
"9% GRADE," in front of rocky slope, beside
concrete road barrier & asphalt road.]
5) A half-mile-long fence for clacking a stick along its entire length:
[Image: Leo wearing red tee & shorts, holding
a beige stick against a black metal fence
with slim vertical posts every few inches.]
6) The same fence, but use your hand instead of the stick. Even better sensory fun:

[Video: Leo running his knuckles over slim, closely-spaced black metal fence posts
while walking along the fence, wearing shorts and shirt in his beloved bright red.]

Exercise and/or fresh air usually have a beneficial effect on my mood. But I don't always have the gumption to get the hell outside or on the trail, so am grateful to Leo for hauling my butt to where it needed to be this past weekend.


*If you or your child cannot resist hopping over short fences, Devil's Slide trail is not the place for you, given the steep cliffs dropping directly onto craggy rocks and ocean waves directly adjacent to several stretches of the walking areas.

12.02.2014

It's Giving Tuesday: Give a Shot@Life Today

Today is Giving Tuesday, an initiative to remind people that the holiday season is about giving, not just shopping.

Ideally, Giving Tuesday is about supporting non-profit organizations. Organizations like Shot@Life, the UN Foundation's global vaccines initiative. An organization that, as a vocal vaccine advocate, I support wholeheartedly.

I want to ask you to support Shot@Life today, too.

Giving Tuesday is a great day for you to support Shot@Life, because you won't be alone. MAM USA, maker of unique baby products, is celebrating Giving Tuesday by pledging $25,000 to Shot@Life -- and then Bill & Melinda Gates Foundation have pledged to match it -- for a total of $50,000. Which is definitely a great start.

But if you participate, every dollar you donate today will be matched by the Bill & Melinda Gates Foundation -- up to $200,000. Up until 11:59 PM PT.

Even better -- during the "doorbuster" (5am-9am PT), every dollar you donate will be matched 2:1. That means if you donate one dollar during that time, it magically becomes three.


If you want more convincing about vaccines themselves: Bill and Melinda Gates believe that vaccines are one of the best investments you can make to improve global health. I agree, which is why I've both written for the Gates Foundation about the importance of vaccines, and work with Shot@Life to help get life-saving vaccines to those who need them.

So please: spread the word, donate -- I've set up a personal Team Immunity Shot@Life Fundraising Page -- and thank you for making today all about Giving.

11.17.2014

Fourteen in '14


Leo was born in 2000, so his birthday age will always match the year. Convenient, that, for those of us who take a few moments to remember our own age. Doesn't make it any less shocking that our boy is fourteen.

This year, we focused on doing exactly what Leo wanted, especially on his actual birthday since it fell on a Sunday.

He woke up happy, and immediately got happier upon being told "happy birthday!"

[Image: Leo smiling, slightly blurry photo
Head and shoulders only, orange t-shirt,
white background featuring hanging plant]
For his breakfast, he got those forbidden f***ing donuts

For lunch, he had Indian buffet. With lassi, naan, and saag!

[Image: Leo sipping orange mango lassi
through a red straw.]
 Then he came home and got a Singing Talking Olaf as a birthday present. He was entranced.
[Image: Leo in profile, holding and looking intently at a
stuffed Olaf the Snowman from the movie Frozen.]
For dinner, he had pizza. Which he asks for daily. And is a special treat.

After dinner, we went to Rockin' jump with a few friends. Not a party, just a casual thing. No pie or pizza. The focus was the jumping. And whooooo, was there jumping!

[Image: Leo mid-air, jumping from one gray
trampoline to another, amidst a teal field.]
 Some hoops were shot, at Rockin' Jump. This is not something Leo had found easy to do in the past, but his adaptive PE class includes basketball and football practice. I observed significant Nothing but Net.
[Image: Leo throwing a yellow
basketball into a hoop, with his dad cheering
next to him. Seen from a distance.]
After Rockin' jump, we came home and Leo had a scoop of vanilla ice cream with a candle in it, and we sang his favorite song: Happy Birthday. He was so excited that he led the song himself, the moment I lit his candle.

[Image: Leo blowing out a long white candle,
with his sisters watching in the background.]
 Then we came home and Leo wanted to relax. So he sat on the couch and listened to the first Violent Femmes album. As many a fourteen-year-old boy has done before him. And that was the end of his first of three birthday celebration days.
[Image: Leo lying down on our brown couch,
with his green iPad held up to his face.]
The next day, Leo's class had a birthday party for him. They made him a very cool card.
[Image: Multicolored letters on a white background reading
Happy Birthday Leo, next to a cartoon cupcake and
yellow and blue balloons.]
And we had very healthy cupcake-like muffins. There are a few GFCF kids in the class, so I brought wheat- & dairy free chocolate cupcakes for them. Except all the kids liked the GFCF treats better than the all-natural cinnamon crumbly cakes, and polished them off.

Then we sang Happy Birthday for the second day in a row, and Leo beamed.

[Image: Leo seated at a low table, in front of a
white plate with a brown cupcake, with
a long white burning candle in it.]
The very next day, we drove down to Disneyland, where Leo was given a Happy Birthday Leo badge, and we sang him Happy Birthday one last time. He was considerably more pleased than he looks in this photo, not just because of the forbidden chocolate cupcake, but because he was at Disneyland after asking to go there nearly every day for 20 months straight. (You can read about our very successful trip and my overcoming anxiety re: the new Disability Access System pass, at TPGA.)

[Image: Leo seated at a table, looking down at a
chocolate cupcake topped by a lit candle.]
So that is what Leo's fourteenth birthday looked like. He had a great time. We had a great time. And now we all need to rest for a while! Yay fourteen.

11.10.2014

In Search of Superego Style Food

Fettuccine with smoked salmon & vodka cream sauce. Looks like slop, tastes like heaven.
Fettucine with smoked salmon & vodka cream sauce.
[Image: a pile of flat noodles topped by chunky red
sauce, in a beige bowl with black curlicue accents]
I am not a great cook. But I am really good at making food that I really like to eat. As you might suspect, this can be a problem. I need to make food that I don't like to eat so much.


Take this pasta. It looks like slop, yes? It's actually heavenly. It happened because of an ingredients fiasco: I brought home a package of Coscto chanterelles -- so thrilled was I to see them after two years of drought, two years sans those tasty fungi at either our local bulk goods warehouse or in Seymour's secret foraging spots -- but discovered upon starting to cook my favorite brandy cream chanterelle sauce pasta that the mushrooms were not usable. Thankfully we had smoked salmon and of course we had vodka (see again: Costco), so I tried smoked salmon vodka cream sauce pasta instead.

It was to die for. Seymour, who has been working looooong hours on his team's fabulous big questions science video project, nearly fainted with happiness upon coming home from a too-busy-for-lunch workday and finding that dinner was creamy stinky fish noodles (the man is half Portuguese, so stinky fish = always a win).

I really liked our dinner, too. Which was, as mentioned before, a problem (had two servings, needed one). I really need to start cooking more bland food. Food that serves our nutritional needs and makes us want to eat it, but that doesn't make my Id tell my Superego she's a whiny little bitch who can kiss her ass. Suggestions?

11.05.2014

Mourning and Advocating for Autistic Murder Victim London McCabe

You have probably heard that London McCabe, a six-year-old autistic boy, has been murdered by his mother. I want you to stop and remember that sweet boy, think about his utter terror as he was killed by the person he should have been able to trust the most in this world. I want you to mourn his loss. London deserved a long and happy life, and that was stolen from him.

And then I want you to get busy about what YOU can do to spread the word that disability does not justify abuse and murder. I want you to take The Autistic Self-Advocacy Network's statement on the Murder of London McCabe absolutely seriously, and share it as much as you can:
"Children and adults with disabilities murdered by their caregivers have a right to equal protection under the law; our murder deserve equal condemnation. Failing to do so not only insults the memory of the victims, but puts others in the future at risk."
I also want you to think about the actions you can take to help prevent more such tragedies. London's mother feared autism, and said it was a "thief" that stole her son from her. She also made threats about harming herself and her son, threats that were not taken seriously enough by the people in her life. She also obviously wrongly convinced herself that her son would be better off dead than in an option like an emergency placement.

These are all things that contributed to London's death, and they are all things we can work towards changing. Here's how:

1) Spread the word about better understanding our kids, and understanding autistic people in general. Too many parents, like Gigi Jordan and Jillian McCabe, considered autism something that had "stolen" their child. Parents specifically should be trying to understand their autistic kids better, especially when it comes to communication. As neurospsychologist Dr. Jonine Biesman said in her recent TPGA interview:
"...instead of compliance, why don’t we think about how we can work cooperatively, together, and absolutely listen to not only your child’s cues, and what your child is saying. It’s really important, because sometimes your child is not only giving very strong messages, but is trying very hard to tell their parents what’s going to work for them and what’s not going to work for them -- and ignoring those cues can have some very dire consequences."
2) Take parents' statements about harming or even being hostile towards their child seriously. When I interviewed ASAN's Samantha Crane about her work the Issy Stapleton case, she had specific thoughts on signs of potential violence:
"[Issy's mother] had been making statements about her frustration and clearly terrible relationship with her daughter, for a long time. We don’t take the position that there wasn’t anything that couldn’t have been done. But the intervention that needed to be done was someone noticing that this person was expressing persistent hostility towards her daughter, and noting that maybe that might be a dangerous situation, and intervening."
3) Speak out about non-murder options. As I wrote at BlogHer, we need to spread the word that an emergency placement, or an out-of-home placement, is a always a more forgivable choice than murder:
"...we need to work past fear and misinformation, and get educated about what our support options are, both during emergencies, and in general. Misinformation can lead to tragedies, as when parents absorb media-propelled myths that it more understandable for a mother to try to kill her child than to call Child Protective Services (CPS) on herself if she's thinking about harming that child."
And finally, keep pushing back against that pernicious, dangerous myth that parents won't kill their kids if they get enough services. That's not true. Issy Stapleton's mother had more services for her child than just about any person in the state of Michigan, and it didn't stop her from trying to murder her daughter. I'll leave you with another Samantha Crane quote:
"It is never acceptable to hold a child’s life hostage in the demand for more services. There are many things that we as a society can do to prevent these kinds of acts of violence. But those things need to be focused on preventing abuse, communicating that every person’s life is valuable, and detecting the warning signs of possible violence ahead of time, and really providing targeted anti-violence services rather than simply giving the parents more support in whatever therapy they want for their child and hoping that that will somehow improve the parent-child relationship. If the parent is so antagonistic toward their child that they’re contemplating violence, then something needs to change and it’s not the child — it’s the parent."

10.27.2014

Milestone Land

We never leave the land of milestones. That's probably a good thing.
  • First kid to get their driver's permit, and take a driving lesson (Iz)
  • First time one of our cats gets attacked by a bobcat (our TacoCat, she's going to be OK)
  • First time we leave Iz and Mali home together (So I could go to the emergency vet, see above)
  • First time Leelo has a full dental cleaning without anesthesia (thanks to years of hard work on his and his dentist's part)
  • First time our dude learns to run the bleachers (video at bottom)
  • First time Mali gets a yellow belt in Karate
  • First time Leo and his stylist insist on me sitting down rather than hovering while our guy got his lid did
  • First time Leo and I have bit parts in a documentary you can buy (Citizen Autistic)
  • First time Seymour produces a series for PBS Digital (Pygmy Seahorses pilot is great, watch it!)
  • First time I turn 45. That was fun.
And so much more. As usual we have been awash in events and house guests and crises and wonderfulness. I'll list a selection of such things, as a stab at the record this blog is supposed to be.

(Speaking of house guests: If you're one of ours, remember to lock your door. Especially if you and Leo get along. Because he might come looking for you -- might jump into your bed to snuggle with you -- at 3 in the morning.)

Seymour's new series for PBS Digital Studios and our local PBS/NPR affiliate is called Deep Look. The first episode is about this: "Tiny and delicate, pygmy seahorses survive by attaching to vibrant corals where they become nearly invisible to both predators and researchers. Now, biologists at the California Academy of Sciences have successfully bred them in captivity for the first time."

I asked Seymour if regular folks like me could go see the pygmy seahorses at CalAcademy, and he said nope. Which is a fairly standard question-answer sequence between me and the person who constantly text-teases me about the amazing behind-the-scenes things he witnesses at various science-oriented facilities and that I will only get to see by watching his orgs' videos.

Iz getting her permit picture taken
[Image description: teen girl with beige skin and long
curly light brown hair, wearing a blue long-sleeved jacket,
looking away from the camera & partially obscured
by the maroon wall behind her.]
Yes, Iz has her learner's permit. Her driving lessons commenced today. When did high schools stop making driver's ed mandatory, and stop taking their students to big parking lots full of golf carts?

She will be grateful to drive, as she had been in limbo as an Uber user. Though I'm grateful for the ability, when I'm stuck and she's stuck, to tell her "please Uber home." Whew. Of course another solution would have been to live in a home where she could walk places. So think twice about moving with kids-who-would-eventually-be-teenagers to a remote house on a hill. Especially since the very first thing she had to do, as a n00b driver, was drive down the rather terrifying road from our home to the bottom of the hill. If you've been to my house, you get the eep.


She has gotten to that place in teenagerhood where occasional revists to little kids things are amusing rather than mortally embarrassing. Like sitting in a cart at Costco and having her mom push her around. Always happy to oblige silliness, me. She is struggling a bit with competing access needs re: her brother, though. He can be loud, she is loudness-averse. It's not pretty when they set each other off. We're working on helping them co-exist.

Leo Getting a Non-Mom-Hovering Haircut
[Image description: long shot of a cream-colored hair salon
two teen boys with beige skin and dark hair in profile
seated and wearing purple drapes, right hand boy
getting hair cut by a man with light brown skin & a black goatee]
Leo continues to be our out-and-about dude. Though I wonder sometimes at people who openly stare at him or back away from him in public. Do they think he doesn't notice? Do they think I don't notice? Thankfully there are still plenty of cool not-our-friends-yet people in the world, like the teenagers who recently sat down next to Leo at communal Sbux table and asked him about his iPad and were content with his non-verbal responses.

He continues to kick butt. There's that successful dentist visit. Also the first time he was willing to look in the ophthalmologist's eye-measuring devices (no glaucoma!), and get a haircut without me being right there next to him. And his running -- he is doing well, and staying healthy (which is a relief). And sometimes we find him playing DJ in his room, rocking out to CDs of his favorite tunes, with headphones on, dancing. As teenage dudes so often do when they think no one's watching.



Mali is still our source of continuous amusement. Her OWL sex ed class plus an Oatmeal book of mine she found & read has her asking some fairly interesting questions, like "what does motherf***er mean?" Thankfully her love of Greek myths means we could talk about it matter-of-factly using Oedipus; I told her it describes someone who is committing horrible acts, and may not even know it.

Her sex-ed immersion plus her myth-loving ways also result in conversations like this:
Mali: "Is sex the only way to reproduce?"
Me: "No, asexual reproduction is a thing, one kind is called parthenogenesis."
Mali: "That makes sense. The Parthenon is the temple of Athena, and she was the result of asexual reproduction."
Me: "..."
Her general info-sponge tendencies also lead to conversations like this:
Mali: "What is a sex tape?"
Me: [describes in general terms]
Mali: "So it's not bad by itself, it depends on how people use it? Kind of like GMOs?"
Me: "..."
And yes, she has her karate yellow belt. It's the first step in belt-acquiring, and she's ever so proud. My oldest brother, who refers to her as Moriarty, asked if I thought that her having those skills was really the best idea? I asked him how he thought I felt, as the person he frequently hung upside down by the ankles and/or randomly threw in the pool, about him becoming an Army Ranger and learning to dispatch people with his bare hands. He said it was a point well-taken. But I'm enjoying they way Mali now narrates shows like Xena and Agents of Shield, and identifies moves like "Spinning back kick" etc.

I'm also enjoying this very last month of having a single-digit kid in our lives. She still calls me Mommy and holds my hand in public. Cherishing that for as long as it lasts. Cherishing them all.

----

Speaking of cherishing, I never did say what happened with my birth son, sorry. That's because his story is not mine to tell. But, as far as things on my side go, I am content.

9.28.2014

Follow Up: Radiolab's Underwhelming "Juicervose" Autism Coverage

Mali, shortly after getting into a verbal
sparring match with Demetri Martin
At a 2011 Radiolab show in Berkeley.
[Image description: girl with beige skin and
brown fuzzy hair pulled back, wearing
wire-framed glasses, smiling,
wearing a multicolored long sweater,
in front of a blue screen with white
words inside a black box reading:
"IN THE DARK
with Thao Nguyen
and Demetri Martin
PIL
OBO
LUS
RADIOLAB"]

One week later, I am still so sad that Radiolab bungled their Juicervose autism episode. I've been wanting and waiting for them to do a truly autism-focused episode for just about ever. I even wrote about what I'd like to see in a Radiolab autism episode, in 2011. But, aside from the stories from Owen Suskind and his family, most of the reporting was the same superficial, negativity-based autism coverage the media almost always provides. Almost always. I expect better from Radiolab, and I said so, at Thinking Person's Guide to Autism:
You need to know that such tiresomely biased storytelling robs autistic people like Issy Stapleton not only of their victim status but of of their humanity. It turns autistic people — already the target of sloppy media prejudice — into villains. It perpetuates the dangerous and dangerously contagious notion that it is “understandable” for parents to murder their autistic children, if those children cause too much caregiver stress. You told your fiercely loyal and trusting audience, directly, that 'unsuccessful' autistic peoples’ lives are of lesser value.
People pushed back. The Radiolab staff pushed back, seemingly in surprise. When Emily Willingham tweeted about the TPGA critique, Jad Abumrad asked her, "Did you actually listen to the piece?" which was ... an equally surprising response. Though after a few more exchanges with Emily and various TPGA folk, Mr. Abumrad did say that he heard us and was listening, sincerely.

Other responses included assertions that the Juicervose episode could have been worse. I'm pulling Emily's response to that comment out, as it's a dead-on critique of the episode's overall flaws:
"It could have been a whole lot worse" is a pretty low bar to set for a show that bills itself as being "about curiosity" and presents itself as a place "Where sound illuminates ideas, and the boundaries blur between science, philosophy, and human experience." The richness of the autistic experience, for better and for worse, is not encompassed in Temple Grandin, is not conveyed by trite repetition of the same harmful memes of "lost, locked away children" whose aggression brings nothing but pain and hopelessness, and is not well served by turning to the usual suspects (eg, Simon Baron Cohen) as sources. That's a surface treatment sourced from the world's most cursory google search, coming from a quarter whose audience typically expects a little more than that. A lot more than that. And who should have given better to that audience. This isn't Donald Trump mouthing off on Twitter. It's NSF-funded Radiolab, hosted by a MacArthur fellow, for God's sake. 
Imagine this were a show about the experience of being a woman, communicating as a woman, making yourself understood as a woman. Imagine that they open by describing women as "passive" and "emotional." They present a couple of women who seem to transcend this 'problem' of being a woman but suggest that for the rest of women, the outlook is not so rosy. They talk with a researcher who's got a pet idea about what makes a woman a woman. They give us Betty Crocker and a 1950s gynecologist when they could have given us your mother, grandmother, sister, aunt, wife -- a rich tapestry of the experience of womanhood that defies stereotypes, not in unique or unusual ways but in ways that surprise the audience with their generality, that open the minds of the audience to new ways of thinking about women and about how women themselves think. But no. We get tired memes about women, a tired narrative about sporadic transcendence of getting past all that woman-ness, and they serve up a faux-gritty reality of what it allegedly *really* means to be a woman for most women and that reality is all negative and harsh and, sniff, someone hand me a tissue 
That's not journalism. That's not being honest with your subject. That's not being "real" or tackling grey areas. That's being shallow and lazy and letting your own blinders about your subject block your view--and thus block critical perspectives that could have enriched your narrative--and your audience. 
Responding to allegations that we only want reporting on "happy" autism stories, which, erm, no, we are pragmatists and supporters of autistic people's inviolable humanity, Autistic writer Chavisory also commented:
There's a difference between "reporting on darker sides of a story," and "reporting" a story in such a way as to reinforce thinking about a subject that devalues the lives of the people being reported on, and makes the story of autism really the story of how the people around us are disappointed in our existence. 
And frankly, that's an old, boring story. 
It is past time that the story of autism was not defined by how worthless we [autistic people] are to other people.  
Keep listening, Radiolab. Curiosity is only how you find your stories. Listening is what makes your stories different, and makes them matter.

And as a side note: you might want to let colleagues like Andrew at NY Public Radio know that it's a bit disingenuous to leave comments such as "Please take this post down as you are hurting the cause of good journalism by demanding only activist-oriented reporting" without mentioning that they are commenting from a NY Public Radio IP address.

9.13.2014

Amplify This: "Don't Murder Your Autistic Kids"

When we hear that a mother has tried to murder her own child, most people howl in agreement that the mother deserves to be prosecuted to the fullest extent of the law. Most would be angry if that mother successfully plea bargained her attempted murder charge down to child abuse. Most people would not "understand" mothers abusing or murdering their kids.

Autistic, Not Less Valuable
[image description: Leo in foreground,
Golden Gate Bridge & camera-wielding
tourists in background]
Most people would feel that way, unless they learn that the child in question is autistic or otherwise disabled. And then, horrifyingly, people excuse the parent's murder attempt, and start blaming the victim: the child.

This is happening again -- right now -- because of Kelli Stapleton's recent plea bargain for poisoning her autistic teen daughter Issy. News articles and blog posts are using images of Kelli hugging the daughter she tried to kill. Stories are insisting on sympathizing with Kelli, talking about how hard Kelli's life must have been, ignoring her ex-husband's Matt's testimony that Kelly bought an electric shocking collar meant for dogs to use on Issy, "'spiced up data' making physical incidents with Issy look worse than they were, and 'stated that children with autism have to be taken care of, such as taking the child to the train tracks or off a cliff and suggesting a parent should kill his or her child.'" And few accounts portray Issy as a victim -- or even as human -- at all.

I'm begging you to help change those conversations. As I wrote at BlogHer, I want us to be more careful and compassionate when we discuss cases like Issy's. I want people to think about how they got into a headspace where they think it's not just acceptable but defensible to empathize with a self-admitted child poisoner:
"If you identify with a murderer rather than a murder victim or if you become upset when people criticize parents who hurt or kill their disabled kids, then maybe it's time to think about how you found yourself in that dangerous mind space and start making changes to help you, your child, and your family."
And I want us to put victims like Issy first. I want parents to understand that while of course they need and deserve help if their children require intense support, they need to get that help from people who believe in and respect their kids, not from people who do see their children's lives as less worthy than non-disabled children's lives.

Above all, and right now, reporters and writers need to stop sympathizing with murderers like Kelli Stapleton. Parents need to stop saying that they understand why Kelli chose to poison her daughter, because unless they've actually attempted to murder their own child, then, no, they don't.  They also need to stop declaring that a "lack of services" explains these murders, because that's not a universal factor in these crimes. And most parents who lack services do not murder their kids (nor do most parents who struggle with mental illness, which is usually the next justification for unjustifiable acts by parents against their disabed children). As parent Matt Carey writes:
We need better supports. But we can not condone the murder of one of our own [...]. If we as parents can do this, out of some ‘mercy’ argument we are a very small step away from state sponsored murder.
And the media, especially mass-market media like People Magazine (on sale now, but I'm not about to link) and Dr. Phil (interview with Kelli set to run in two days), need to stop sensationalizing stories like Kelli's at the expense of -- and without bothering to consider the personhood of -- autistic people like Issy and my son Leo, and FFS need to stop writing headlines like "County Jail Better Than the Prison of Autism."

If you want to take action, please share my BlogHer article on changing the conversation about murders of children with disabilities. That piece is more compassion- and solutions- oriented than my sorrowful raging among friends, here on my online porch. Link here:
http://www.blogher.com/changing-conversations-when-parents-murder-disabled-children
You can also RT my tweet to People Magazine and Dr. Phil:
 Why @peoplemag's & @DrPhil's sympathetic coverage of Kelli Stapleton is so dangerous: http://www.blogher.com/changing-conversations-when-parents-murder-disabled-children … #JusticeForIssy #autism
Direct link to the Tweet here:
https://twitter.com/shannonrosa/status/510795561255964672
And if you find yourself in a community that empathizes with or defends Kelli Stapleton, you need to get the fuck out of there, and do it yesterday. You need to find people who will support you through hell and high water, but you endanger yourself and your child if you are emotionally dependent on people who refuse to distinguish between the pre-crime mindset of "I don't know how I'm going to get through this, help me not be a danger to my child" and the post-crime mindset of "I understand why Kelli tried to kill Issy."

----

Updated to add: Many people in the autistic and parents of autistic kids communities have asked people to focus even further on Issy as the victim and crux of this story, by not mentioning Kelli entirely in their writings and social media shares. I'd already written these two pieces, but you can be damn sure I'll be following suit from now on, using the hashtag #JusticeForIssy. As Matt Carey writes today at Left Brain/Right Brain:
One can just bet that many comments will take the form, “no one should kill her child…..but…..”
There is no “but” in this. No one should commit murder. No parent should kill her child. Full stop. Period. “But” does not apply
Variants of this are “don’t judge her” and “until you walk in her shoes.”
“Judge” means to form an opinion
For those who write that: the mother tried to kill her daughter. I will form an opinion about this–this is wrong. I don’t have to “walk in her shoes” to say that. Why won’t you form an opinion? Why does her daughter’s disability have anything to do with forming this opinion?
Just in case you are wondering: I did purposely write this without mentioning the mother’s name. The mother is not the story. When autistics have been murdered in the past there have been news stories that never mention the name of the victim.
I recommend sharing Matt's post as well: http://leftbrainrightbrain.co.uk/2014/09/13/when-a-child-is-killed-by-a-parent-the-word-but-does-not-apply/

And I have to once again thank the autistic author of the blog Real Social Skills for helping me write the more thoughtful BlogHer essay, in asking people to think about their attitudes rather than just telling them their attitudes are wrong. 

9.04.2014

So What if God Is Change; Change Is Hard.

Anything different is bad. That is Leo's mantra. It's also mine. And we have had a lot of change lately. None of it is truly awful, but some of it sucks, and some of it is just different, and all of it means adjusting. Those of us who are happiest wallowing in our ruts simply prefer not to emerge unless we have to, like contented little piggies in nice squishy mud.

Lots of "have to" just now. Which means I've got a lot of "Oh, bother," after my role model Winnie the Pooh. Much of that "have to" is not really bloggable, but here's what is (what I can recall right now, anyhow).

Mali has started 5th grade. It's her last year as an elementary student. It's our last year ever having an elementary student. WHAAT? This baby? Noooo.

[Image description: selfie of beige-skinned baby wearing
lavender jammies resting her fist against her face,
sitting on lap of beige-skinned woman with
dark hair and a black long-sleeved tee,
also resting her fist against her face.]
 She also looked on in despair as four of her best nerdling friends (nerdling being currently defined as: Minecrafting, My Little Pony-loving, Adventure Time-watching, science-embracing) moved away over the summer. She is learning to live with missing her friends, but as she's a contemplative sort beneath the Pinky Pie enthusiasm and bravado, the heartache is always there. For now. And she always has plenty of friends. For now. I worry about nerd-shunning this year, though as she mostly hangs out with boys, and with girls who are children of engineers, she should be OK until she gets to the local middle school next year and finds herself among an even wider selection of nerds.

Three of my Personal Pillar friends also changed access this summer. Two went to-time office jobs, one to (eep) Southern California. So that is different, especially for the two who were right-here local and with whom I had weekly routines. They're all on social media, of course. And email. And all the circumstances that led to their changes are really great, and I am happy for them. Just a bit lonelier because I tend to glom onto people like a strangler fig. Which, come to think of it. Hmm. Anyhow.

Iz is in 11th grade. I can't even -- 15 and full of pepper and whip-smart is a whole lot of a whole lot, parenting-wise. It's all Fascinating but requires my investment in a new parenting toolkit so that together we don't both blow the roof off the house. I gather this is a not-uncommon scenario for parents and teens who cohabitate, and may explain boarding school culture. It's worth getting through the hiccups because she is such good company when we're not locking antlers. And then there's her new schedule -- which she lobbied for -- that gets her to school by 7:30 every morning. Which is movtating, so far. She's also activisting, due to irritation with her school's dress code and its promotion of "sexism and rape culture." Do sign her petition if you can.

Leo is happy to be back in school, in his new class with the younger teenagers. He had a summer that was both awesome (he did 10 days at camp and met Steve Young!) and hard (he didn't sleep that much, which made him restless during the day). But his health continues to improve, and we have become an all-whole-grain household to support him in those efforts. He had to give up his beloved, very processed veggie booty, but, like Mali, he's managing. The biggest concession (which he doesn't mind but I do) has been switching to Dannon Lite N Fit yogurt so he can get enough calcium and protein, without the sugar bombs of his preferred Wallaby. But the Dannon has artificial sweeteners, which I do not let my family (our stash of Diet Cokes is for guests, not for us). But his nutritionist said the trade-off was worth it. So there we go. He's got some of that teen O RLY going on too, like Iz.

[Image description: close up of
red rose petals on a
dark wood surface,
surrounded by candles in jars.]
Seymour and I celebrated some milestones last month. We've been in Deadwood City for 20 years. We also celebrated our 19th (!) wedding anniversary (smooch that handsome man) while we were in Oaxaca. That trip deserves another post. One highlight was arriving for our anniversary dinner at Casa Oaxaca and finding the table covered with candles and rose petals. I have seen such things in movies but never experienced it myself. It was enchanting. Seymour and I would like to go back to Oaxaca Now please. With kids or without. Even though visiting Oaxaca meant I can't donate blood for another year because the CDC says it's a malarial zone. Right. Like you can trust what they say these days. (Kidding! Referring to delusional anti-vaxxers being even more delusional than usual. Which makes me furious as they're once again endangering lives and hurting not just Leo but their own kids in the name of Fearing Autism.)

You can probably tell by the droning and the run-on sentences that I am tired. IT'S ALL TRUE. [edited to add: because those last three weeks of August were just me and my offspring, a few ER visits, a bit of projectile vomiting, some ear infections, 5,000 doctor visits because we're not supposed to schedule Leo's many many specialty visits during school time, and lots of swimming and hiking.]  But the kids are back in school now, so, let's see what happens.

8.01.2014

Blogust: When Your Comments Save Lives

August = Blogust. And Blogust is the wonderful time of year when the UN Foundation's Shot@Life taps members of the social media milieu and Blogosphere, to use our synergistic connectivity to save lives: "Every time you comment on or share the Blogust posts, Walgreens will help provide a life-saving vaccine for children around the world who need them most."

That means that every comment -- on this post, or on one of the Blogust14 posts that will be rolling out during this month of August -- is literally a chance to save a life, to get a vaccine to a child who otherwise would not get have that chance. It couldn't be easier, so please comment comment comment and spread the word.

Here's more of what Blogust is all about:


Image description: tiny beige-skinned girl,
age 3, holding an inflated purple latex
glove in front of her face.
Why do I care so much about getting vaccines to kids in countries where vaccine access is limited? Besides being a mom, besides having a heart, besides being grateful to be be part of a movement that makes taking action -- real action -- so damn easy?

Because I'm lucky. Because my third child, Mali, didn't get her first vaccinations until she was three because her brother, Leo, is autistic, and in 2003 no one could tell me why, and I fell for the vaccine-autism causation hoaxes of the era.

I know better now -- there is no link between vaccines and autism, and autism is nothing to fear -- and thankfully nothing happened to Mali -- she didn't die from pertussis as a baby, and she didn't die from measles encephalitis as a toddler. But she could have. And other kids, shamefully, still do. And you can help prevent more of those deaths simply by commenting on Blogust14 posts and social media.

So please, please participate. Every child belongs to all of us. Every child is valuable. Every child matters. Every child could be your child. Every child deserves, well, a Shot@Life.

More information:

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