How to Keep a Sad, Unsettled Kid Relatively Content

This remains the best playground for Leo right now. It's somewhat hidden, you either have to hike fifteen minutes to get to it, or pay a fairly steep entry fee to gain parking lot access via a winding back road. And Leo gets to be sentinel (preferred), pacing a path while observing the action around and below and only participating if he wants to (though damn does he also love those slides -- they are metal, and if you kick them on the way down it makes the loudest, most reverberating BONKS).

We hiked, of course. All of us. Because the playground is near the top of a beautiful, oaken, mushroom-dotted hill covered  with the sort of clearly delineated not-too-steep paths Leo prefers because he knows exactly where to go, and can run back and forward and up and down and vent some of that boundless energy. The girls enjoyed the hike too, once they were there (they sometimes need coaxing to pry their eyes and fingers off the iPad Minis their generous grandparents gave them for Xmas, but they are like I used to be at their age re: Catholic mass -- I didn't want to go, but I liked it once I arrived). (Yes that woman in the leather jacket and jeans is Iz.)

It's good to get out, and spy fungus like these Big Gyms. They make us all happy. And we can use some happy these days -- Leo continues to have a hard time, and we continue to wonder and worry and experiment. And mostly, to fail at finding ways to help him be settled and content --  except when we hike, and go to this playground. He was happy the entire time. Winter, go away! You suck! Leo needs long sunny days and lots of outdoor time and exercise.

One of the more frustrating aspects of seeing Leo in such a state is popping up for some air and news and being confronted with articles like Amy Lutz's attack of the Neurodiversity movement in Slate.com (which I critiqued at TPGA). Because the thing is, things have been shitty here lately. They've been really hard. But they've been hardest of all for Leo. So -- for me -- that means I need to work harder to find answers and support for Leo. Our family's rough patch does NOT give me ammunition with which to "attack disabled people for the crime of appearing less disabled than [my] own child," as Lutz did. As I wrote in one of the comments, "While I do have compassion for [Lutz's] situation as a parent since it is quite close to my own, I am outraged that she used the power of a Slate.com pulpit to spread her own fear and resentment about autistic people, rather than to issue a call for better services for her son. Publicly scapegoating a minority group in the name of fear is never, ever justified. I won't stand for it." But I could use a candy cap soda from The Ice Cream Bar. (That's a candy cap, above.)

Lutz's article reminds me of the time the parents at Leo's co-op preschool nearly rioted at a nutritionist who came in and declared that, if your child needed protein and fat and refused to eat anything containing either unless it was a GoGurt bar, then eating refined sugar was an acceptable trade-off. (Maybe they would have preferred for their kid to eat a sugar-free delicious milk cap, pictured?)

There are so many autism parents who already believe neurodiversity activists are some sort of Spectrum Supremacists/Separatists who want nothing to do with the high-support kids like Lutz's and mine. When in fact Neurodiversity advocates like the folks at ASAN identify strongly with the Disability movement as well as the autistic community. And essentially want what parents want for their kids -- better education, supports, rights, practices. I hope Lutz sees this eventually.

I'm off now, to see Leo's primary neurologist, with a second neurologist appointment next week. Here's my list of questions. I hope the doctor is able to give direction, if not answers:

-Is there a causative link between his anaphylactic shock and the seizure?
-What kind of sleep monitoring does she recommend (we are currently trading off nights sleeping with him).
-Can we resume his usual seasonal allergy med. It's the last thing he took before his seizure, so we're leery.
-He started Seroquel last week (replacement for Risperdol), and so far we're not impressed. It seems to come with bad headaches that then spawn unprecedented aggression. Tylenol helps a bit, but this doesn't seem like an acceptable side effect.
-Are the headaches, though, exacerbated by his stopping his seasonal allergy med?
-Seroquel also seems to give him bloodshot eyes (not as red as that russula above, but still).
-He also has an eye twitch. Could it be from the after-effects of sleep deprivation (as that's what happens to me)?
-What are Leo's actual travel restrictions?
-Can he have nitrous oxide at the dentist's office (a side effect can be ... seizures).

I am crossing my fingers, always. I would make a joke about the violent barfing-then-hallucinating properties of the mushroom to the left, but I don't have the energy (stay away from them, kids). They're pretty, though.

Hopefully Leo will be feeling better and up for another hike this weekend. And we'll have better ideas for making his life easier.

Second Opinion

We can get used to just about anything, we humans (except possibly teenage behavior, which, thankfully, is a phase). So when I took Leo in to his wonderful pediatrician this morning to follow up on next steps for his seizure and anaphylactic shock episode, I was expecting allergist and neurologist referrals and another EpiPen prescription, possibly a conversation about seasonal allergies and whether or not his recent hoarseness is due to those, the after-effects of emergency intubation, or his voice changing -- not a conversation about how Leo's behavior has gotten out of control.

Because I've gotten used to how different Leo has been since his seizure. And maybe just how gradually different he's been since stopping Risperdal three months ago. He's become more bumptiously active, not necessarily in a bad way though he did accidentally run into his grandmother during Christmas -- something she's always been worried about, and even though she said she was OK she was also shaken. He has been having a harder and harder time getting through our usual outings and excursions without getting upset -- about not getting a treat at the grocery store (never a guarantee), or not getting take-home pizza at Costco (also never a guarantee). His teacher has let me know that the last two weeks have been ones of unprecedented classroom activity and sensory-seeking, so much so that they now have a stand-based punching bag in the corner of the class for him to unleash all his excess energy. And he's been having a devil of a time falling asleep at night, though in the morning he does not want to get up when the alarm rings, which is also different as he's usually our alarm.

I can absorb this all now, in hindsight. But I couldn't recognize that yes, his behaviors were not within standard operating parameters, not until midway through this morning's appointment when he had a stimming cavalcade -- of hitting me. And then he hit his doctor. It wasn't even truly aggressive, more puckish than anything else, because he was not angry and kept smiling the whole time. But it hurt, and he didn't seem to be able to stop, and since I cry if people look at me funny you can imagine the sobbing wreck I shortly became.

Though his pediatrician took her hit in stride (she often spends her vacations doing humanitarian medical work in areas of conflict), she also let me know she was seriously worried about Leo, and would be putting in a call in to his behavioral pediatrician -- the doctor who prescribed Leo's Risperdal. Who called me less than 15 minutes after I arrived home. And let me know that it's probably time to revisit meds ... if not Risperdal, then the Seroquel we'd been intending to transition him to anyway three months ago. I just need to call the neurologist Leo's pediatrician did in fact refer me to, and ask her if Seroquel would interfere with any of the tests she'd want to run on our boy.

I don't have a problem trying a new med for Leo. I really don't. Um. But I have to admit that in my heart of hearts I was so very much hoping Leo had outgrown the need for behavioral meds. Because I don't like meds. I don't like to take them, I don't like my kids to have to take them.

And that is selfish, because my son is teetering on the edge of a behavioral precipice right now, and if he falls over that edge -- if his behaviors spiral so badly that he can't focus, can't go to school, can't leave the house, or we can't have friends visit -- all because I don't like meds -- then that makes his life suck and makes me a bad parent.

----

In other current news, I'm pissed about Amy Lutz's one-sided neurodiversity hit piece on Slate, and think you should read Emily Willingham's Forbes article Can People Really Grow Out Of Autism?, as it includes perspectives from autistic people. Under typical circumstances I would shred the former and write my own piece on the latter, but critiquing via a spattering of social media and typing the post above is all I got for today. I'm going to go pet my cat, pretend I can't see the mess that is my house, and then pick up my kids.

We Don't Stay Home: Playgrounding

Here is what we're doing right now: Lots of playgrounds. Too bad there aren't any good ones in our area [snort, see below, I've been advised not to reveal too much about names or locations as we like our playgrounds not-too-full].

Leo is still finding his feet, temperamentally, after the hospital or maybe after the winter break. One more week of being back-to-routine (yay routine!) and we'll see how he's doing. But no more seizures as of this writing, so that's good.

Mostly-photo posts are about our speed just now.

New Year's Day 2013 & Full-Family Foraging

Today was a particularly bright, gorgeous New Year's Day, so we spent it in San Francisco's McLaren park. Seymour & his team filmed a 2011 Fungus Fair documentary there, so he wanted to revisit  mycologically active sites. We found several different favorite species, and enjoyed tromping around -- it's a great park for casual hiking. (If you visit the park, know that it's a haven for happy dogs and their humans, and not all will be on leash.)

Happy 2013, all y'all.

 

Our new family portrait?

Panther Amanita just past the egg stage, or so we think.

Running down the hill to let us know she'd found candy caps behind Jerry Garcia Auditorium.

Getting those candy caps!

Siblings. I love seeing them be nice to each other.

The view to Oakland from the top of the park. *waves at friends*

Yellow staining milk caps are pretty.

Happy Endings

Leo's photo of his hospital room (note Sully & Mike).

Leo is back home and happy after an anaphylactic reaction & seizure sent him to the hospital for a bit. We still don't know why it happened, but we now have an EpiPen in case he has another allergic attack.

And we don't know what this means for the long term. Folks on Thinking Person's Guide to Autism's Facebook page weighed in with 40+ perspectives on autism and seizures, as did several friends with ... expertise in the area, for which I am thankful. Short term, Leo may not travel outside of immediate assistance bounds (no long plane flights, no remote Sonoma mushroom foraging raids). I'll need to find out if his school bus driver is trained to administer the EpiPen. Seymour and I are taking turns sleeping with Leo, who is so delighted at having a slumber party that he'd rather snuggle than dream.

I do know that we are so, so, so lucky. I hope I don't need to enumerate why. It's not the way I would have chosen to close out 2012 -- and we could all use more sleep -- but I will be entering the new year in a state of profound gratitude for our family, friends, and healthy kids.

Best wishes for your own 2013.

Listen to Leo!

My mother, bless her tolerance for chaos, went home today after spending a week with us while Iz soccer tournamented, Mali was a hip hop Snow White dwarf in her school play, and we accompanied Leo and his class to a local Winter Wonderland festival. I don't know if Seymour and I would have survived the week without a third parent. We certainly wouldn't have had any clean dishes. My gratitude, it is boundless. Without boundaries. You ever want to see me do backflips, come over and help out in our kitchen.

My mom was also helpful with the never-ending food prepping -- Iz is vegetarian and Leo and Mali have divergent takes on super-pickiness, so unless we're having cheese pizza there are always at least two tracks for every meal. And lately those tracks were accelerated, given all the activities (Mali had play practice every single night until 9:30, then three performances; Iz has soccer practice 3x/week plus tournamenting; Leo had several sessions with Therapist V). So sometimes we got a bit rushed and inattentive. Which Leo doesn't put up with, if it imperils his meal. Doesn't put up with, at all.

Example: Last night we went to my cousin's house for dinner. Which was to be ribs. Which Leo will eat when hell freezes over. So before we left, my mom  offered to make Leo a PB&J sandwich to take with us. But Leo wouldn't let her get on with it -- he kept running back into the kitchen, getting in between her and the counter and telling her "Peanut Butter!" and we kept shooing him out, asking him to let us finish the sandwich so we could get out the door. Except after the third or so pass -- during which time no sandwich got made -- I realized that my mom had accidentally taken out the almond butter instead of the peanut butter -- and Leo does not eat crappy-tasting almond butter unless he absolutely has to.

It's not Leo who was operating at a communication disadvantage last night.

We apologized to Leo and went on our way, and had a lovely evening. But it was a good reminder for both me and my mom to really listen to Leo when he's trying to communicate, even when we're in a hurry. Because he's usually the one who's right.

Soul-Endangering Nutella Cupcakelets

Mali's week of 8th birthday festivities came to a close today, with two parties: one in her class, the other her "real" birthday party at a jumpy house palace. For the latter, she chose a Costco cake (score! from a labor perspective); for the former, she requested Nutella cupcakes. Um. OK. Commence Internet research.

The mini-cupcakes I ended up making (and which had folks on their knees) drew on three components:

1. An appreciation for the nom nom ease of yellow cake mix. 
2. A realization that full-size Nutella cupcakes would be sugar WMDs. They'd take the tops off Mali's classmates' heads.
3. A preference for speedy buttercream frosting as opposed to finickier double-boiler options

You want to make them too? Well then:

Get some yellow cake mix. (Oh, come on. Yellow cake mix rocks.) Mix it up. Make mini-cupcakes with it. I recommend a barely-oiled silicone mold or cupcakelet papers.

When your bitty cupcakes are cooked and cooled, cut a divot from each top:

Fill each divot with Nutella
(Quarter is for size context,
divot cribbed from Baked-In.com)

Top with Kitchen Treaty's shockingly straightforward Fluffy Nutella Buttercream frosting.

Hold cupcakes in front of you while proferring, or put on a table and stand back. You don't want to get trampled. These bites are amazing.

Irony: Mali didn't like them. But she likes nothing except quesadillas, fresh blueberries, and Nutella from the source, so.

Please share and enjoy and consider yourself warned.

Suddenly She's Eight Years Old

This girl is eight years old today. This fiery sparkly spunky visitor from the planet Extroversia, who keeps both herself and those of us in the audience so very entertained.

Though she'd want you to know that she's not actually eight until 11:54 tonight. But it's her birthday regardless. And that means dinner at the Lobster Shack (because they make the best grilled cheese sandwiches, obvs), and a bouncy house party later this week, and that's all very exciting.

What amazes me, though, is how very little she requires to fuel her marvelous version of reality. When asked what she wanted for her birthday, she thought for a while and said, "Another episode of the Power Puff Girls?" because they're not on Netflix. And when a girl has access to the local public library and Netflix and one's house is full of cardboard boxes and tape and Sharpies and colored pencils and pens -- really, what else is needed, or desired?

Here are some of her created objects from just the past two days at home:

Go-Kart. Note booster seat-enabled caboose.

Go-Kart front bumper. (Who taught her to write
"Bow-chicka-wow-wow"? NOT ME.)

Unicorn sailing ship with a very long name
incorporating "Dawn Treader."

I do realize she might not always be this embodiment of carefree awesomeness and explosive creativity -- puberty does strange things to a person -- which is one more reason to celebrate who she is right now. And to keep my fingers crossed. And to relish her very self this very moment, as in this video about her "magic waterfall":

Sometimes I think she deserves a mother more like her -- someone whose imagination is equally wild and on fire -- but then, perhaps I'd contaminate her. Mostly I try not to overthink it, just relax and enjoy and appreciate and be grateful for having her in our lives.

Rock This Way

Leo went off Risperdal last month. We were going to transition him from Risperdal to Seroquel because the Risperdal was affecting his cholesterol levels, but during the meds-free part of his transition he did so well that we just ... kept him off. And are continuing to do so, with his doctor's full support. Most of the details are in the BlogHer column I wrote last week. In general, he's doing well. Some hiccups with having a hard time getting to sleep (Risperdal is soporific stuff) but they're minor and entirely reasonable for anyone who essentially just went off sleeping pills, and his sleep is not otherwise disrupted. Which is healthy for a growing kid.

I'm observing him extra-closely just now because we're a data-focused family. It's important to know how his post-Risperdal behaviors compare to those from past years, especially as the Halloween-birthday-Thanksgiving-Christmas season is challenging for him regardless, what with schedule disruptions, sweets, visitors, travel. If he's having a really hard time -- an uncharacteristically hard time, rather than reacting to seasonal circumstances -- we want to know.

So I'm noticing. I'm noticing remarkable things, like how he uses his iPad to manipulate music. He has always enjoyed using his tablets' icons (so friendly to visual types) to hit favorite beats and moments in music and videos. But if I wasn't noticing, or if like his more sensitive sister I found it difficult to tolerate the ensuing seeming cacophony, I might get irritated. And I might have missed the resulting patterns he's creating -- essentially his own, custom music compositions.

He strings together and then loops the introductions to songs like Everybody Wants to Rule the World and Right As Rain, alternating precisely, stopping before the vocals in each. Because those vocals don't match. But you know what does match? The two songs' propelling beats. They're mirrors, they make a pair. If he knew how to splice them into a mashup, I'm betting he'd do it. I'm guessing he might, eventually.

Until then, keep noticing, everyone.

Happy 12th Birthday Leo!

This boy, who was given a diagnosis of Extreme Cuteness about the time this photo was taken...

...is now this boy. This handsome 12-years-old-as-of-today boy.

We are going to spend his birthday -- and much of the weekend -- doing exactly what he wants to do. Eating cupcakes in his class. Going to his favorite Indian restaurant for dinner. Going to see "a movie!" if we can squeak it in -- possibly Wreck it Ralph, as certain folks appreciate its neurodiversity message. Staging a Quirky Kids takeover of a local jumpy house palace to celebrate the Leelo-ness of Leo. With pizza. And his requested "chocolate cake!"

And I will continue to marvel at how the sweet, cute boy above -- a boy who will not put up with a "boy" label much longer -- continues to defy the klaxons of doom that so many experts set off around him when the first photo was taken, who continues to grow and mature and gain skills and ... need us less. (*sniff*)

At 5:30 this morning, I heard his bathroom door slam and walked over to see light streaming out from under it. Leo was standing nearby in his bedroom, looking groggy. I stomped over to knock on the bathroom door and grouch at Iz for waking her brother up -- except lo, there was no one in the bathroom, because the light-turner-onner and door-slammer was Leo, who had needed to pee and just wanted to go back to bed, Mom. Leo, who didn't see why door slamming and leaving lights on were such a big deal. Who thinks I should know by now what 12 year old boys do as they wander around their natural environments. Who was giving me an sincere, bleary-eyed WTF look. Who did indeed go back to bed until it was time for his birthday blueberry pancakes.

Happy birthday, sweet boy.

(I can still write "boy," damn it.)

Rights and Compassion: Why I'm Voting for Obama

The baby boy in this picture will be 12 years old in four days.

Leo was born just a few days after Election Day of 2000. I had fully expected the election itself would be over and done with by the time our boy arrived (it wasn't), and had never thought that a slippery buffoon like George W. Bush could become president (e.g., he lost the popular vote). That election, and Dubya's country club-style presidency, popped the earnest bubble of beliefs in which I was living, made me realize I was taking the pervasiveness of democratic and liberal ideals for granted.

Still eager and dewy-eyed, I became convinced that all I had to do to convince someone they had placed their faith in the wrong candidate or cause was show them the facts, show them evidence. Because who wouldn't put their faith in what I considered demonstrable truth?

Twelve years later, I no longer believe in evidence as a trump card. Facts don't convince true believers, they make them retrench. Examples:

• The vaccines-cause-autism parent crusaders continue to deploy utterly tone-deaf misinformation copy-paste campaigns throughout the comments section of any mainstream article mentioning autism, unable to comprehend that, in perpetuating our culture's fear-and-pity attitude towards autism, they are undermining their own children's chances for future success.
• A woman I respect deeply told me with the full force of her conviction after we were dragged into the second war in Iraq that she believed Saddam Hussein's Weapons of Mass Destruction justified the war and were just waiting to be found (they weren't). She currently refuses to acknowledge the harm that will come to the LGBT community if Romney wins. And she's a smart, compassionate woman.

What can we do? I've been writing a lot about acceptance lately, and I guess another form of acceptance is understanding that some people cannot process what they don't want to hear. Acknowledging that true believers want things simplified and palatable -- they do not want to wrap their heads around complexity, even if they think they do, like billionaire Leon Cooperman -- who took two painstaking weeks to write a screed about Obama's "divisive language" that then turned viral, yet who considers our President's background as a community activist, law professor, successful author, & senator as "never having worked a day in his life." Yet I also know repeated exposure can bore through rock, and so ideally through rock-hard beliefs. I have to believe that people want to think, they just aren't always encouraged to do so.

For a while, I thought avoiding direct engagement or not citing names while persistently speaking out was the best way to get messages out. That if one must confront reductionist true believers, then a calm and professional attitude would enhance the very rightness of the right messages. Staying on message, unflappably, would eventually get through to ... if not the zealots, possibly those in the zealots' thrall. But, as we saw in the first Obama-Romney debate, behaving like an adult when the opposition goes on a By Any Means Necessary rampage makes one look flat, uninvested, and lacking in conviction.

So what is the right approach? I'm circling back towards speaking the truth and calling out falsehoods while avoiding outright smackdowns, the model Obama deployed in the second and third debates. I'm still working on it, because I'm an easily-riled hot head (e.g., anti-vaccination paragraph above). I can't stand by and watch people like Mitt "Tax Returns" Romney lie and evade and spin, and not call them on it. But I can avoid sinking to their level, can avoid treating people as unthinking, gullible sheep.

Twelve years later, we're all lining up to the polls again. Or trying to. And hoping that our votes will actually be counted. And I'm no longer that innocent expectant mother of 2000, who believed democracy and integrity would prevail because duh. I'm terrified that four years of Republican obstructionism will come to fruition at the polls tomorrow.

My vote is my way of speaking out in defense of what is ethical and what is just, a near-sacred duty as it means speaking for my children, who cannot yet participate. I do not know what their future holds, but if they are disabled, LGBT, unemployed, impoverished, or unexpectedly pregnant -- disadvantaged in any way -- I want them to live in a country that treats them with respect, dignity, and understanding. As fellow citizens. As the citizens their immigrant grandparents were able to become, via a process that brought every non-Native American to this country, FFS. And I want that respect and dignity and understanding -- what's right, not what's soothing to believe or easy to hear -- to prevail in our country, now.

That is why I'm voting for Obama.