Light This Way: Musings on Autism 'Awareness'

It's April - the annual 30 days where we commemorate, celebrate, showcase, discuss, debate and generally spread "awareness" for things like Jazz (appreciation); Poetry; Confederate History (observed only in the Southern United States, according to the source - um, duh...and um, really?); Mathematics (curiously dubbed Awareness not Appreciation); and the obligatory list of disorders/differences/diseases and such, including Diabetes, Parkinson, Asperger's* and Autism.

Get "lit" for autism: A collaborative piece
by the bloggers of My Whac-A-Mole-Life; Pancakes Gone Awry
Yeah. Good Times.; Disability and Representation;
and, of course Edvard Munch.

On top of that, Autism gets its very own worldwide DAY: April 2nd. But surely you know that because anyone with a pen, keyboard, quill or cave wall has told us that already. And in the volatile blogosphere, boy did they! Take your pick. You've got your serious, snarky or poignant. Perhaps you prefer your awareness flavored indignant, sanctimonious, or rose-colored? There are posts ranging from curmudgeonly to cheerleader-y...and many combinations thereof. Are you pro-blue? Are you pointedly not? There's a blog post for you.

So where am I planting my flag today? The honest truth is, I don't know what to think.

We diagnosed my little girl very early, due to her pushy, uber-"aware" mom (ahem). Autism Speaks has a large presence in these parts, and it was the go-to resource. Their messages, videos ("No, I can't go for a bagel"**), and community spoke to me.

Then I became immersed in behavioral and educational endeavors. I read Jenny McCarthy's books. I fell in love with Holly Robinson Peete. My autism identity crises progressed to Floortime vs. ABA; sensory fulfillment vs. academic goals; the pros and cons of eating bark.

The One With The Bad Metaphor (In Which I Compare Special Needs Parenting to Candy Crush)

Forrest Gump famously compared life to a box of chocolates. Well, less famously and with a much longer, convoluted explanation, I'm telling you that special needs parenting is like a game of Candy Crush.

Candy Crush Saga, for the uninitiated, is your basic "match three" game available on Facebook, the web, iDevices, Droids and probably outer space. It has a few twists, however, that have managed to capture the zeitgeist of low-tech gamers and harbored addiction in many circles (See Top 10 Signs You and Your Friends are Addicted to Candy Crush).

As I wait the requisite 30 minutes for a new "life," I pontificate on how the developers over at King.com captured special needs parenting in these colorful, little candy wrappers.

So you get these five lives and you are trying to complete levels with specific challenges and limited moves available. When you run out of moves before achieving your goal, you lose a life. You can wait for a new one; buy one (no way); or ask your friends to help.

It's damn hard doing this alone. While it can be hard to ask for help sometimes - you don't want to impose; they won't understand; you just asked yesterday - this stuff is nearly impossible without a village (see Meditation for an Autism Mom). The best of friends know you are struggling. They send "life" before you have to ask. Maybe it's in the form of a funny text, or a quick call, or a night out...but it's extremely re-energizing, especially if you've been having a particularly tough, level 65 kind of week.

Some people (I've noticed it's mostly men, incidentally) refuse to connect their game to Facebook. Are they ashamed? Do they prefer keeping things private? Perhaps they don't want to deal with any questions or public scrutiny. Regardless, they will not be able to ask anyone for help and they will, perhaps even unknowingly, face increased frustration as they run out of life (or end up spending lots of in-app purchase money). 

Either way, Candy Crush Saga requires lots of attention. Our other games miss us. Scramble With Friends actually resigned a few games on our account, abandoned.  "What happened to you," our friends ask? Well, I miss my old self too, but let's face it, the Candy owns me now. It's not better. It's not necessarily worse. It's just different.

It might be more demanding than some games (although have you ever had to take care of a digital fish tank it or pet shop? Just sayin'), but did you know that every seventh person in Hong Kong plays Candy Crush? Google it. If it's that prevalent, perhaps we should spend more energy on tolerance and inclusion, rather than trying to fight it.

The sweets get ugly sometimes, I know. Players tend to curse, gasp, misbehave and might even throw an iPad across the room. OF COURSE we know that's not appropriate behavior, but sometimes our frustrations get the better of us. Perhaps even more so when our candy has left us sleep-deprived, gluten-dependent and speechless.

On the game's level map, we see all our friends' avatars way, way, ahead of us. We notice this when we're stuck on a particularly irritating level. We wonder, how did they get so far? Was it easier for them? Did the Candy Crush gods give them more color bombs? We must catch up!

We must remember to control that jealousy and resentment. We can't ever know what's going on behind closed doors. Maybe it's because they are up all night with a reckless, child insomniac. Maybe they spent lots of money and are now bankrupt. Maybe they've been playing for a very long time. Our level can be just as fulfilling, even if it's not exactly what you expected. Holland has windmills...and tulips!

As you do master a level, the euphoria can be short-lived because there's always another level ahead! New, unexpected challenges come out of nowhere. Exploding chocolate? Barriers? I thought I had this all figured out!

Sad Heart. Send Lives!

Well, just like those futile times when you only have a few moves left and you know you're not going to make it, you still have to slide those candies around and ride it out. You'll get re-energized and try again. Maybe in 30 minutes. Maybe tomorrow. 

Don't fight it. Yes, there are plenty of people out there who have never discovered Candy Crush (gasp). Or they haven't been lured into its frustratingly satisfying lair. Maybe they're content with their non-dependent lives, and they tell us in superior tones, "I'll just stick with Bejeweled, thank you very much."

True, our Candy Crush existence might be grueling at times, but I like to think we're better for it. We have demonstrated strategy, perseverance, tolerance and good humor.

We appreciate the sweet stuff so much more when it's that harder to attain. We celebrate every small success - the jelly is gone! - and know that they truly can never, ever understand unless they're right there in the candy trenches with us.
Nom nom nom! 

***So, how many of you think I need a Candyvention right around now?

Wordless (As Possible) Wednesday (Or Thereabouts): Personalized Whac-A-Mole Game

Uh, guys? I'm rarely "Wordless" and it's the opposite of Wednesday. (I think it's Saturday - so we can pretend this is really early or really late. I think we all know the obvious answer.)

So this, THIS new product from Hammacher Schlemmer*:

And it gets better! Here's the description:

The Personalized Whac-A-Mole Game
This is the Whac-A-Mole game that can be personalized to replace the standard mole heads with molded caricatures using pictures of members of your family, past managers, boyfriends/girlfriends, or any desired combination of personalities. The game operates exactly like the ones found in amusement parks and carnivals--five mole heads pop up randomly while you attempt to bash each with a mallet for points--but this one comes in a walnut veneer cabinet (with hardwood inlays) that automatically opens and closes at the touch of a button from the included remote. When closed, the game assumes the form of a bookshelf, but when commanded to open, both halves swing open to reveal the game, complete with full-color artwork. A storage shelf for your preferred beverages sits above the game, so libation is always at an arm's reach.

I mean...Wow! Awesome, right? Just one itty bitty concern: It's $35,000! So yeah, if you're into this sort of thing, you might stick with the poor-man's version and just paste little color printouts of your nemeses on the critters in the Toys R Us version...maybe with a Pabst stored in a nearby milk carton for the full effect.

Or how about my "free" version: play it virtual reality style. Every Single Day. In Real Life. So where's my $35,000? 

* I am receiving no compensation, freebies, trades, publicity or even a note of thanks from this company in return for this post. Natch. (If you ask me, that's just wrong.)

Obsession Safety Checklist

When I say my child is obsessed with doctors, dentists and medical procedures, you probably think I'm overstating it. Perhaps you were the mom glaring at me in Target when I screamed at my daughter: "No, I will not take you to the doctor today!" If so, I refer you to this post: All Kids Do That: Obsessions from the fabulous "All Kids Do That" series over at Yeah. Good Times. (Update: the Expo obsession finally did run its course. However, healthcare appears to be a keeper.)

Got it? Now, obsessions tend to overtake every activity. Somehow, everything comes back to the obsession one way or another. (Isn't that kind of what makes it an obsession?)

So, therapeutic and behavioral interventions aside, here's a look at some safety steps one should take to protect a child, a family, and a budget from little obsessive junkies seeking a fix. For discussion purposes, we observe my 8-year-old daughter's inexplicable and precocious interest in all things medical....with an even sharper focus on dentistry.

Steve Martin as Dr. Orin Scrivello - Watch this clip!

• Lock phone. She will navigate to my contacts and call the dentist's office. She can't talk, so not much will happen, but it just doesn't seem like a good idea.
• Block YouTube. She probably can't spell monkey, but she correctly keys in phlebotomy (could you?). And you don't even want to know about the "related" videos that are recommended when one searches for "tooth surgery." Redirect to cutesy tooth fairy cartoons, perhaps? Don't insult her.
• Set iPad restrictions. Wow, there are lots of  bad apps out there. And they can be expensive.  She says, "Free Free" and hands me the iPad to type in my pass code for the purchase. Not so fast, little girl, but nice try. Critically important: Don't forget to turn off in-app purchases lest you inadvertently are the proud new owner of a pair of extra cartoon pliers to yank out cartoon dog teeth. (Pulling teeth out is a specialty of hers when playing Virtual Dentist.)
• Purge photo stream. The multitudes of doctor/dental practice logos she enjoys looking at on the Internet are harmless, but...graphic, diagnostic stills of various stages of dental disease? A kid would be better off watching The Walking Dead.
• Purchase more toner. Those logos I mentioned above? She loves those. Also fun: printing and copying. She likes to print the logos "big" and make 10 copies. (Why 10? Why not.) That's a lot of toner right there, my friend, but NOBODY wants to run out of toner. If you run out of toner, you can expect a tantrum from any number of family members. Including yourself.
• Lament the under-representation of age-appropriate books exploring what happens DURING medical procedures. We've stumped many a librarian...even those within the actual children's hospital.
• Trust your instincts. So, after weeks of her whining, complaining and tugging at her teeth, you cave and schedule an emergency appointment. How bad would you feel if she really was in pain? I mean, she is largely nonverbal, and she's been unrelentingly typing, approximating and signing "dentist," "pull teeth," and "hurt." Perhaps a visit to the dentist will quell the obsession beast, at the very least. You think to yourself, I doubt there's anything wrong, but what if...? Sucker! (While there, confirm that the tooth she keeps wiggling is indeed a baby tooth and not a permanent one.)
• Hide keys: Alas, no dentist appointment today...but why should that stop us from trying to go anyway?
• Scout out new locations and routes in advance: if there is a dentist's office nearby, proceed with caution. You know what looks awesome?     

THIS PLACE:

BUT IF THIS PLACE:

 is next door, you will spend your entire allotted hour trying to reason about why jumping is preferable to drilling. Well, to be clear, YOU'RE trying to reason; she's screaming.

• Avoid anyone with bandages, scabs, bruises, etc. She is overly curious and not afraid to explore hands-on.
• Master the art of waving. My best parenting moment? "No, sweetie, we can't go inside the children's hospital today, but we can wave at it." Since then, all trips out of the house involve passing and waving at some sort of medical establishment. I can't even explain this properly as it's so very weird. Just trust me when I tell you that as a meltdown avoidance technique, it's negotiation gold.
• Supervise On-Demand picks. Like many kids, she knows her way around a remote control. She searches for "teeth." Sure there's a tolerable episode of Bubble Guppies called A Tooth on the Looth! and you might even shamelessly pay the $1.99 to purchase it for 24 minutes(!) of peace. But that's not quite what she had in mind. Unfortunately for her, I conclude that watching Corbin Bernsen's fine work The Dentist could scar ME for life.

I know what you want to say, because I hear it all the time: "So maybe she'll be a doctor." I cringe... because we both know that, sadly, she won't. Still, if she somehow does become a healthcare professional (never say never), I imagine her mentor would be Dr. Orin Scrivello, So, thanks for your encouragement. I might even arrange for you to be her first patient. Good luck.