1.31.2016

All Done January

Not a great month. Happy to see it go away, and no encores, please. Though cool things got done this month; you can look at my Stuff I Did for Jan 2016 if you want to know what they were.

My mom stayed with us for much of January, which was a blessing and a delight, and for which I was grateful. So was Seymour, since the two of them like to have conversations all day long, while I am more sparing with my chosen social interactions.

[image: Black-and-white kitten sleeping on a red blanket]
Definitely a month in which I am grateful for cats. Especially the new kitty, Twist. I LOVE HIM SO MUCH. He is a bonafide puppy-kitty: he fetches and everything. Sleeps on my chest, or head. Yowls if I dare to be on the other side of a closed door. Purrs like a lawn mower. Happy to be held like a sack, upside down, whatever. The other cats are dealing with the interloper, grudgingly. No matter how stressful things are, snuggling with a cat always makes me happy. HE IS WONDERFUL. He is sitting on my shoulder and purring right now.

Iz is still pondering college(s), Leo is getting many compliments on the latest additions to his cheeky t-shirts, and Mali has a new shorter 'do that makes her look like a perky bespectacled plasma ball and apparently compels everyone to touch her curls. That's pretty much all I have to report.

On to February. Please.



12.31.2015

Adios, 2015

Learning Speed Scrabble: Part of Mali's Grifter Training
[image: Three white people playing Scrabble
on a bright red table.]


Good bye, 2015! We are spending our evening playing Speed Scrabble. Or, some of us are. Others of us don't do board games and are writing (possibly while watching favorite movies with fellow Scrabble non-enthusiasts) in anticipation of counting down the clock with some fine, fine drinks later. Others just may be working on college applications.

But before the drinks start flowing, I have some final personal and general wishes for 2015:

1) That those of us who have been involved in advocacy and activism for a while never forget that people (disabled and non-disabled) who come from outside the autism and disability acceptance and rights models often need time to absorb what is and isn't ableist and hurtful. I've said this many times: but I don't know where I'd be without so many patient but firm role models and friends. I started out from an f'd up place, I'd like to think I do better now, and I know I'm not alone in either space. We need to be careful about who we call out, and allow people who make mistakes the opportunity to learn from them.

2) That we can successfully support Leo in his AAC endeavors. He finally has a full set up. Finally. It's all on us now, in terms of success outside school (he has fantastic support at school).

3) That Iz is happy with her college options, that I don't freak out when she leaves, and that her transition to independence is less hairy than mine was (I had some magnificent implosions in college, which is a subject for another post). She's been accepted to a couple of good places already, which comforts her greatly.

4) That Mali continues to enjoy life as a happy cello-playing, karate-loving nerdling. That the nerdling pod she joined in her new middle school continues to be a source of humor, solidarity, strength, and confidence -- the kind of group middle school misfit literary characters tend to long for.

5) That everyone subscribes to Seymour's unbelievably cool Deep Look video series on YouTube. It's a collaboration between KQED Science and PBS Digital Studios, about "exploring big scientific mysteries by going incredibly small."

6) That at least some of you consider becoming Shot@Life Champions, and joining me at the Champion Summit in Washington DC at the end of March -- "gaining the skills needed to effectively advocate for the protection of children worldwide by providing life-saving vaccines where they are most needed." And meeting extremely cool people, and getting to lobby on Capitol Hill!

There's a lot more, but that's a start. Happy 2016, everyone -- and here's hoping your own wishes bear fruit.  

11.30.2015

And Boy, Are Our Arms Tired

[Image: White teenage boy and mother, both wearing
bathing suits, with the ocean and rocks of
Cabo San Lucas in the background.]

We just got back from a week in Cabo San Lucas, a Thanksgiving week spent with most of both sides of our family, and one in which we successfully dodged all massive feast preparation responsibilities yet still managed to have our pants feel quite a bit tighter upon returning home. Success!

This was our family's second time in Cabo, and it was, for the most part, a happy repeat of our glorious first visit. Leo swam, and then swam some more. He and his sisters got to hang out with grandparents, uncles, and cousins. Mali even parasailed, and Iz, she of the newly minted driving license, went ATVing with her dad.

Mali also turned eleven on not-Thanksgiving day (as we were in Mexico), and got to celebrate with fourteen family members plus talented local musicians singing her Feliz CumpleaƱos. (She'll have a proper LARP birthday party in a couple of weeks.)

Even though we brought food with us and shopped for groceries, it wasn't always easy to manage Leo's doctor-prescribed low sugar/fat diet, or exercise as much as he should. He got a lot of pizza and fries. But, hey, vacation, and worth him being happy most of the time. We can help him  pick up slack now that we're back in drizzly cold reality.

The only part of our trip that really sucked for Leo was traveling back home. Tickets for Cabo during the high season might as well be studded with rubies, which means direct flights were unrealistic for us. And even if you buy your tickets six months ahead of time, which we did, there's no guarantee of being able to seat a party of five in the most Leo-friendly way. He was a good sport, though. Despite the baby with the constant, grinding-gears crying on the first flight. (Not the baby's fault, as I reminded Mali.)

By the time we were hustled off that plane and into crowded, noisy, standing-room-only buses to LAX Immigration and Customs Leo'd had all he could take. Iz took one look at the crowds and lines and asked if we could please please please get Leo accommodations, so ... I asked. And the Customs folks immediately (immediately!) assigned us personal escorts who walked us to the front of all three check points. I typically loathe everything about LAX, but their Customs folks? They are my new favorite people. Thank you, LAX customs people.

[image: selfie of a red-haired white woman
lying in bed with a black-and-white kitten
snuggled next to her head.]
And now we are home. With our new kitten Twist from Wonder Cat Rescue and KitTea Cafe who missed us SO MUCH. He was lovingly tended in our absence by our friend Ep who texted us videos of him purring in her lap and meowing plaintively. We were up for half of our first night home, being purringly smothered by kitten fur and flatulence.

Being home means being back to the usual. Which means confronting realities both big and small. Like the escalating 'tudes of these three tweens and teens who share (and methodically destroy) our home.

I am sad about not having little kids any more. Little kids are fun. Big kids are fun, too. Teenagers are more like cats, in their unpredictable willingness to be fun, or do as asked. If you ever have anyone tell you that autistic people don't learn from their environment, send them to me so they can explain why my younger teen, Leo, has taken to dodging any chore requests with "I need to use the bathroom!" followed by an extended disappearance -- exactly as his sisters do. I'll wait.

11.11.2015

Happy 15th to Our Resident Dude

Low fat low sugar cupcakes --
that Leo graciously ate anyhow
[image: yellow cupcakes with piped
chocolate frosting.]
Leo's 15th birthday was two days ago. There was much cupcaking, over three birthday events over two days -- which meant three iterations of being sung Happy Birthday, which Leo looooved.

He also enjoyed the cupcakes I made for him even though they were from a low sugar, low fat recipe. I ate one, and it wasn't ... awful. One of Leo's friends needed the "tangy" chocolate frosting scraped from his tongue, so intense was his NOOOO reaction. But Leo, selective though he is, tends to accommodate items in the 'sweets' category. Possibly because, as a friend of ours who is on a diet similar to Leo's said: after a few months of doing without, anything even remotely sweet and luscious tastes like fudge.

Here are the three birthday celebrations held in honor of our very loved and extremely pleased teen dude:


At the traditional local bouncy house party palace:
[image: white teen boy with curly
brown hair, sitting in a colorful
room and blowing out a candle
on a cupcake.]

In his classroom at school:
[image: white teen boy with curly brown hair, sitting at a table
and smiling a the camera, next to a be-candled cupcake.]

And at home with his loving family of smartasses:
[image: white teen boy with curly brown hair,
about to blow out a cupcake birthday candle,
while a white bespectacled tween girl
does "rabbit ears" fingers behind his head,
& a white teen girl hugs a black-and-white cat.]
----

Our family had so much fun celebrating Leo's birthday with him, his classmates, and his friends -- it's never a bad thing to be around contagious joy. But Leo's actual birthday also had bittersweet overtones for me, as I spent much of the day moderating TPGA FB comments about the murder of autistic teen Dustin Hicks, at the hands of his mother. And it looks as though, like my former self, his mother was a biomedical/pseudoscience cure-seeker, as Matt Carey writes at Left Brain/Right Brain.

Dustin and Leo are not that far apart in age. If I'd still been emotionally invested in the misinformation-based belief that autism is an injury and that Leo could be cured if only I found the right potion, how different would all our lives be right now? Would I feel like a failure as a parent? Would Leo's birthdays be thinly disguised pity parties? Would any parties actually be about and for him?

Or would I still be part of those toxic communities that consider publicly complaining about and degrading autistic children "honesty" instead of degradation? If I got openly and deeply depressed about Leo not being "cured," would those community members commiserate with me, or dismiss my depression signs as "what autism mamas are like," instead of helping me find real, and realistic, resources to help us both? Would I internalize stories of parents who considered murder their only option when they failed to "fix" their kids, watch the misguided and horrifying public outpourings of support for those parents' "burdens," and be influenced by them?

I hope not. I hope I'd be as disgusted by people who talk about what a "loving mom" Dustin's murderer was as I am today, and as upset when people insist that these crimes happen because of lack of services, rather than because our society devalues the lives of people like Leo.

---

But back to our dude. Yesterday I took him sock shopping, because we wanted to keep that party atmosphere going. He chose a ten pack of these Florida grandpa black ankle socks. I asked several times if that was really what he wanted, and he never wavered.

A male family friend who embodies hip young male coolness assured us that black socks really are where it's at these days, and that no one wears white socks. His sister Iz insists the problem is not the socks, it's the Crocs.

Whatever. Leo gets to wear what he wants. Though I might just walk a few paces behind him, in public.

[image: close up of the feet and ankles of a white dude
wearing black ankle socks with olive green Crocs.]

10.18.2015

Pumpkin Patches and Mezcal

Autism acceptance doesn't magically turn Leo's or my life into sugar-topped cakewalks, just so you know. (Allow me a smidge of irritation over how often Pollyanna charges gets leveled at us.)

I accept that many things are hard for Leo because he's autistic, that I can't understand why they're hard if I approach those roadblocks like a non-autistic person would, but that if I try to see and understand matters from his perspective -- his unique autistic perspective -- things get easier for both of us.

But I can't make everything in his life about being autistic either, because that means I end up underestimating him in other ways, specifically regarding how much he is maturing. Oftentimes, I'm the one who's lagging behind, in terms of adjusting to the sometimes decreasing amounts of backup Leo needs to navigate this world.

An example: last week, after several days of promising Leo I'd take him to a jumpy house pumpkin patch, I finally managed to get him and Mali to the closest one. And after all that build up, after all the yays and the "we're here!," and the walking between and pointing at the inflatable slide and the jumpy house, and declaring how proud I was that he didn't grab any candy from the bins scattered all around the check-in area...

...the woman manning the gate told Leo he couldn't go in, because he was too big, and because there were lots of little kids. She wasn't nice about it, either.

Reader, I almost died. How could Leo not have a meltdown (not a tantrum, a meltdown), given how excited he was, and how long he'd been waiting to go, yet things didn't go as planned?

I was paralyzed. I hadn't considered the possibility that Leo would be barred from a pumpkin patch -- it's never happened before -- and I had no back up plan to help Leo deal with such a huge disappointment.

Image: A snifter of mezcal, and some orange slices.
After a few sputtering beats, I paraphrased what the Grinchy gatekeeper said -- told Leo I was sorry, but that apparently the pumpkin patch was for little kids right now and he he had grown so much since last Halloween that now he was too big, and I hadn't known he could be too big. That I knew he really wanted to go, but maybe he could settle for ... (crap) a trip to the forbidden halls of Dairy Queen instead?

And you know what? Leo didn't protest or complain once. He agreed to go to Dairy Queen for a small plain vanilla cone that he's really, really not supposed to have but, you know, desperate times; he ate the cone with delight, and we went home and passed an uneventful evening.

(His mother, on the other hand, took several hours to recover from the what-could-have-happened adrenaline rush of having her happy, expectant son being denied admission to a favorite place, eventually resorting to a double shot of reposado mezcal with orange slices, once the kids were to bed. Is it Leo or is it his mother who had the better set of coping skills, do you think?)

I was still determined to get Leo to a &!!%*! pumpkin patch. And a few days later, I was not only successful but found a patch ten times better than that silly run-of-the-mill place that wouldn't let him in. This place had inflatable human-size hamster balls that float on water! Leo was ecstatic, and I was amped up on joy for my dude (and his little sister, and her friend).

Boy (and Girls) in the Bubble(s)
[image: white teen boy kneeling inside a transparent inflatable bubble, in
large inflatable wading pool. Two other bubbles with kids inside are behind him.]
All Hail the Floating Bubble!
[image: white teen boy lying inside an inflatable bubble,
arms raised, in a large inflatable wading pool.]
No mezcal needed, that second time. It was the best time ever, for all of us. But I might need another snort right now, after reliving that first nixing. (Bitch.)

10.08.2015

Achievement Unlocked: We Have a Driver

[image: white teen girl with long curly dark
blonde hair holding up her new driver's license.]
This kid is now a licensed driver. In the scant few hours since getting her license, she has:

1) Driven to a friend's house in another city
2) Driven herself to and from soccer practice
3) Decided that she wanted a specific kind of snack from the grocery store, drove herself there, and paid for the snack with her own money (did I mention that she also has a job?)

All good things, all good things. All really weird things.  All big steps that will lead to bigger steps that will lead to her being gone in less than a year, if her plans come to fruition.

I haven't been great about recording milestones. These milestones need recording. *sob*

10.07.2015

Don't Blame Autistic People, or Mental Illness, For Mass Shootings

The Autistic Self-Advocacy Network (ASAN) felt compelled to issue a statement debunking media myths linking autism and mental illness with violence:
"Recent media reports have attempted to suggest a link between individuals on the autism spectrum and violent behavior. The Autistic Self Advocacy Network [ASAN] is concerned by the proliferation of misinformation which may contribute to increased stigma and discrimination against Autistic Americans. Autistic people are no more likely than any other group to commit acts of violence. People with disabilities of all kinds, including autism, are vastly more likely to be the victims of violent crime than the perpetrators. There is no link between autism and violent crime. Similarly, there is no link between psychiatric disability and violent crime."
You might assume the statement is a response to emerging reports about the Umpqua Community Colllege shooter being on the autism spectrum, but that statement was actually written almost 18 months ago in response to a different spate of violence and the resulting media missteps. ASAN's words were relevant then, and are unfortunately relevant now. Please share them widely.

Why does the media continue to perpetuate these myths about autistic people planning mass murders? As Emily Willingham pointed out the aftermath of the Sandy Hook tragedy, it's because of assumptions that autistic people lack empathy, because people mistakenly assume empathy is a monolithic state. But there is a distinct difference between cognitive empathy (recognizing physical and social emotional cues and acting on them, which can be difficult for autistic people) and emotional empathy (identifying with another person's recognized emotional state, which autistic people can do just fine). Because autistic people have their own ways of reacting to emotional situations, people who aren't autistic can mischaracterize their autistic peers as unfeeling -- when in fact it's usually the opposite that's true: autistic people are often overwhelmed by emotional empathy to the point of paralysis.

And it can't be repeated enough that autistic people, like those who are mentally ill, are far -- far -- more likely to be victims of violence than to commit violent acts. John Oliver addressed this issue in detail, in the context of media (and ignorant dillweeds like Trump and Carson) blaming mental illness for the UCC shooting. (Video without captions, apologies.)


Autistic or mentally ill individuals are also less likely to plan violent acts -- when they are violent or aggressive, it is usually a reaction to being provoked or having their environmental tolerance limits bridged, and is a panicked, fight-or-flight response. People running on pure instinct and adrenaline are hardly in planning mindsets.

Knowing that autism and mental illness aren't to blame for mass shooting tragedies, isn't going to prevent those tragedies, however. What can we do about having fewer future victims?

There's not a whole lot we can do under our current gun control laws, and as long as American policy makers refuse to acknowledge that countries with stronger gun contol regulations have dramatically few gun-related deaths. Currently, Americans can get a gun more easily than they can get an abortion or driver's license, so individuals who have been exposed, conditioned, or encouraged to consider mass violence are going to have the opportunity to act. Currently, not enough Americans or American media outlets give a shit about gun control laws to limit those opportunities. Currently, while the NRA is puppetmastering the GOP,  none of that is likely to change, and more shootings will happen. That's the pattern. That's our current reality.

But you can act. You can sign petitions for better gun control. Even better, you can write to -- or meet with -- your local congress member and tell them how you feel. You'd be amazed at how straightforward arranging such a meeting can be, and what your impact will be.

And in the meantime, please keep keep debunking those myths about autism, mental illness, and mass shootings.

9.26.2015

NeuroTribes: We Read It

[image: black and white photo of a white teen boy holding
the book NeuroTribes, in front of bookstore shelves.]
You probably know, if you know us, that a chapter in Steve Silberman's new book NeuroTribes: The Legacy of Autism and the Future of Neurodiversity is about Leo. The chapter is called "The Boy Who Loves Green Straws," and is excerpted here, at Science Friday(!!). 

NeuroTribes has been out for about a month, and triggered a laudatory avalanche the likes of which I've rarely seen. (Google "NeuroTribes"  if you don't believe me.)

I have many thoughts on the book. Mostly gratitude, for moving the public conversation about autism in the direction I'd like to see it go, and for calling out influential assholes who've harmed autistic people both in the present and in the past. Also for telling people to listen to and support autistic people, instead of every other shitty thing folks tend to do instead.

It's also odd, to see a snapshot of our family from several years ago. The snapshot is accurate, temporally, but it's also not where we are now. We learned so much to get to that place of acceptance, and we've kept learning -- mostly from autistic people -- especially about Leo's innate and irrevocable personhood. I'll try to write more about that.

In the meantime, I suggest reading what a few autistic people have to say about the book, in the form of praise (Patricia George-Zwicker), fair critique (Chavisory), and interviewing Mr. Silberman (Alex Plank).

As far as the Rosenberg reviews go, Iz & Seymour have read the book already. Seymour mostly shares my opinions, including about our personal odd time capsule vibe, and Iz thinks the book is good but makes her sound boring (I don't agree, but I'm not her). Leo, Mali, and I are listening to the audio version in the car. We've only just begun, so Leo hasn't had much of a reaction yet. Mali was thrilled to hear Silberman's expansive definition of neurodiversity, but also wants to know when she gets to hear the part that's about her.

As always, interested in your thoughts.

8.24.2015

Get This Book: Sunny Side Up

[image: Light blue book cover
with Sunny Side Up in white text
above an illustration of a blonde
little girl in a pink bathing suit
lying on a pool raft.]
The kids and I are long-time fans of Jennifer and Matt Holm's graphic novels Babymouse and Squish. So we are extra-excited about their new non-Babymouse, non-Squish graphic novel Sunny Side Up, about a ten-year-old girl, Sunny, whose planned idyllic friends-filled summer is upended when she suddenly and without explanation goes instead to stay with her grandfather in a Florida retirement community.

Sunny Side Up is full of the characteristic Holm humor -- with bonus alligators (it does take place in Florida). I actually read it when my kids and I were staying with their own grandparent -- my mother (though she lives in a condo, not a colony). I laughed quite a few times when I read it, as did Mali (who read it several times), and even my mom snorted at several passages, and wondered aloud how the author captured those humorous aspects of retirement culture so well.

But the book is more than humorous. Sunny's simmering bewilderment eventually reveals much more about the complexities and often undiscussed aspects of being a younger sibling to a teen. (To tell you more would be spoiling the ending.) But this is YA territory,  framed thoughtfully and gently for younger kids in similar situations, so they can hopefully better understand their own complex lives, and feel less alone.

But enough about my opinion -- I'm not the target audience. Here's  Mali's review of the book*.



TRANSCRIPTION

"So, this is Jennifer Holm’s new book, she’s in collaboration with her brother Matthew Holm like she always is for everything. Jennifer L. Holm writes the story and Matthew Holm does the art.

"So this story is about a girl who has been shipped off to Florida to spend time with her grandfather, but she doesn’t know why, and the whole story is about her understanding why she was shipped off to Florida instead of going to a beach house in the Bahamas with her best friend.

"Two things I like about this book is …[1)] it was written by Jennifer Holm. and she’s one of my favorite authors, and 2) is it might help people with something that’s at the end … I won’t spoil it …

"And so the reason I think people should read this book is because it’s a great story, and it will help people if they read it, and if they’re in an alien state or country and they need to try to fit in or something … they can learn to be themselves."

----

*Disclosure: Mali is bosom buddies with Jenni's eldest. The first version of this video review recommended that you get the book because her friend's mom wrote it. But we read, and I wrote glowing reviews, of Jenni's books before we even met her.

8.19.2015

This Girl Is a High School Senior

[image: white teen with long dark blonde hair
wearing a black dress and black backpack.
Photo used with express permission]
This girl is a high school senior. As of yesterday.

This girl is going to take her driver's license test tomorrow.

When I first started writing at this site, this girl was in preschool, and her teachers' biggest concern was that she liked to write sentences in maze format instead of linear format.

Currently, this girl is planning to ask her teachers for  recommendation letters for her college applications.

You'll be glad to know that some things have not changed. Here is what this girl had to say about our country's highest ranking GOP member in 2004:
[image: Child's writing, green ink on a white background
reading, "George Bush is, a big fat liar."]
She is more articulate and detailed about her political beliefs eleven years later, but that statement is still pretty much where she is today.

Regardless, this mom is in shock.

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