April = Autism Awareness Month

The other day Tito said, “If I were to make a bumper sticker it would say, ‘Asperger’s means developmental delays not developmental impossibilities.”

Right on. Just because it may be slow doesn’t mean it’s a no go.

 

I begin

I begin.

I invent.

I research.

I dive.

I believe.

I trust.

I crack myself up.

I stumble.

I bounce back.

I educate.

I falter.

I misstep.

I slam into the wall.

I fall down.

I get back up.

I invite.

I model.

I run out of steam.

I yell.

I apologize.

I see.

I can’t see.

I get it.

I haven’t a clue.

I envy.

I regret.

I wake up.

I embrace.

I laugh out loud.

I remember, over and over, it’s not about perfect parenting. It’s not about perfect anything. It’s about honest living. And revealing my authentic self, not pretending to be someone I’m not. Making peace with the mess.

 

all my eggs in one basket

all my eggs in one basket

my sister and i had a ball dyeing eggs yesterday. my neighbor’s daughter was over for a short while and we were encouraging her to throw caution to the wind. this is a mistake-free zone! we were practically shouting, anything goes! mistakes are where all the discoveries are made! you can’t make a bad egg! you can’t!

tito hasn’t yet been bitten by the egg dyeing bug but he sauntered by, interested in what we were doing, selected a clean, white egg and stuck it in the flame (we have candles burning to use the hot wax for a kind of batik effect). a flash of black smoke bloomed on its surface and he immediately let it drop, for fear it would be hot. it wasn’t.  once it made that undeniable cracking sound, it was sent to on to the egg salad circuit and he wandered off, continuing his candy-eating circuit and left a wake of inspiration as we all added the element of smoke and flame to our egg experiments.

i love making the eggs. there’s no pressure. really, anything goes. my sister kendra makes an amazing looking egg. oh! i love that! i say. what did you do? i want to try that! there’s no competition. just play. discovery. it’s so freeing.

i hope i can convey this feeling to tito. he’s not an art-making guy. but he’s creative. he may never want to decorate an egg but he’ll want to make something one day. i hope i can find a way for him to connect to this feeling. and when he does, i will celebrate whatever he makes.

that’s my job as his parent. it’s not about is it good. it’s not about being honest or realistic or about evaluating it according to some standard because what standard can you use? really? that has any meaning, that would bestow any value?

just love what you kid makes. whatever it is. love it. the celebration and joy will come through and water the seeds in their soul.

 

emotional regulation; part 1

a bit of color from our california trip

there’s a certain kind of learning that most of us get instantly through built-in aversion therapy. i put my hand in the fire and it burns. i’m not likely to stick my hand in the fire again. fire. hot. ouch. got it. but if this was the only way we learned things, we’d all be a friggin’ mess. can you imagine the stress?

i’ve been thinking a lot about emotional regulation and how critical it is in learning. in living. i don’t think anywhere near enough attention is being given to it in therapeutic, educational, and scientific settings when it comes to autism and aspergers. i think the emotional regulation piece is huge.

my thoughts are streaming through my head in one ginormous run-on sentence, like that shadow hand in the picture of tito below. i’d better spend more time sorting and organizing before i say more but first, any thoughts from whomever might be reading this? hmm?

consider this: aspergers can be thought of as an information processing disorder. it can also be thought of as a communications disorder.

we all need to process information, from both our external and internal environment, take it in, organize it, make meaning from it, and then integrate it with existing information, before we can begin to make decisions about how to respond.

frankly, i think our (and by our i mean everyone, ie, human beings) biggest challenge in life is maintaining emotional regulation in the face of agitation in the interior and/or exterior environment, in other words, when we’re struggling with what’s happening outside and/or inside of us.

when everything is going fine, i’m golden. when things are tough, i am able to hang in there, but you know? it really depends on a lot of factors. if i’m not feeling right inside, even the smallest bumps can challenge my ability to stay calm and respond to the situation in a constructive, clear way.

and i’m a highly therapized-and-workshopped, socially-driven, extroverted, neurotypical grown up.

blink of an eye

Isn’t this the craziest picture? It was taken with my phone in HDR mode which means it automatically takes a double exposure every time I snap. Tito’s movement created this shadow hand that is oddly pink and ginormous.

Things happen in the blink of an eye.

The green branches

If you have a challenging kid, you tend to push people’s buttons, including your own. People pay a lot of lip service to individuality, but in practice, it seems it’s too much trouble to accommodate differences, especially if it means doing it differently. It’s fine if your kid has this need as long as one can address it by doing exactly what one already knows how to do, what one thinks is best because it works most of the time, or used to work all of the time until your kid came along.

People get nervous about giving a challenging kid power, ‘too much power’, because, they say, the kid needs to know that they aren’t running the show, that the grown up is in charge. I see their point. Yes. Kids don’t know as much as grownups. They can’t run the show.

But kids need to feel safe and feeling safe comes from not holding what is not theirs to hold, not being burdened with things that are not their job, like taking care of their parent’s feelings by trying to do or be or feel x, y, or z so their parents don’t feel too worried, scared, exposed, vulnerable. Or inadequate.

It can be excruciating to feel ineffectual with your own kid. To have the public (even in the small public world of your family; even in the smaller public world of your own self) see when you don’t know what to do, when what is happening is not what you want to happen and you can’t seem to make it stop. Underneath the irritation, the worry, the exasperation, the rage, is fear. Fear fear fear. And we don’t want to touch that fear, feel that fear. It makes us feel too vulnerable, to say–to even feel it ourselves–I’m lost. I’m floundering. I’m not coming up with the goods and you are all seeing it and I feel exposed. And scared.

What if one’s criteria for showing the kid ‘who’s boss’ was not about who is mightier, but about who is able to be a guide, to say, here’s how we can navigate this knot, this difficulty, even this disaster, this is how we move through it, together. Let me show you, lead you, guide and direct you, so you can learn what you don’t yet know, so you have the tools yourself. So we, the parents, don’t need to be telling you, No you don’t feel that think that want that need that fear that no no you don’t you don’t. We can say, Oh, tell me about that, tell me more, and help them bring it into focus, name it, and then help them begin to see what your concerns are, and then you can brainstorm solutions together. Or maybe that’s more than anyone can handle in a really explosive moment. Maybe it’s just about slowing the flood, de-escalating. How’s that for a motto: De-escalate and Don’t Humiliate.

The question is, what do you risk by not teaching that might is right, but not clamping down to protect your position and drive home the point that the adult has the final say?

Not much, is what I say. The risk of causing harm is pretty low. Non existent.

And what can you gain by helping a kid grown their brain? By providing an opportunity to calm down and slow the flood of nuero-chemicals to the primitive center of the brain so they can turn from flight/flight to the monumentally important task of understanding what they’re feeling, put it into words, and create memories of working through difficulties successfully, in partnership (dare I say, collaboratively?) rather than learning that you get through difficulty by giving in, by saying ‘uncle’. You win/I lose is a painful lesson is black and white thinking, a lesson we end up teaching the very kids we wish were more flexible.

How can they learn flexibility through our rigidity?

I fall prey to it when I am stressed, when I’m worried I’m going to lose power, which is always, when I look back on it, when I already feel I’ve lost it, when I misunderstand where my power comes from, my stability, my strength.

People may think it sounds unrealistic, weak, or naïve, but it’s the green branches that are the most supple; it’s the green branches that bend and bend and bend.

color

 

i love how much color there is here. i need to go home and re-paint all the rooms in our house and then take a few buckets into town and paint all the buildings.

 

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I’m sitting in the living room of a house that sits on a cliff overlooking the Pacific Ocean. I see a pier in the distance, an old pier, not attached to any moorings or structures, no boats in sight, just surfers already on their boards dotting the open water like seals, bobbing, lulled by the waves, rocked by the mother sea. I see one of them catch a wave that doesn’t look very big from where I sit but that takes them to shore, a conveyer belt, one hundred, two hundred feet, until they slow, stop, and sink.

I watched it get light this morning–didn’t watch the sun rise because we’re pointing west, west, the watery horizon stretching out for 180 degrees in front of me. This is sunset country, sunset heaven.

I love this open ocean. I love the lighting–even the grey here has more color in it, more blue. The water, ripples of pale purple and green.  There are two people standing on the cliff outside right now, in shorts and sweatshirts even though it’s bracingly cold, the sun barely up, the wind and surf together, thunderously loud. That’s San Diego, for you. I’ve seen guys in swim trunks and tans no matter the temperature, standing barefoot in the alleyways with their dude mates and skateboards or surf boards or just a wide set of pearly white toothy boards and a mat of stringy bleached hair.

The culture here feels different. Is it real or is it romance and fantasy?

I think it’s real. The gateway to big land is all around me, to landscapes that put a girl’s place in the world in perspective.

I like that.

keep going

i guess i’m not that bright because i keep learning the same lesson over and over and over. what’s happening in the moment is just what’s happening in the moment. and if i can stay in the moment, not fretfully stare at the past and peer into the future, i’m much better off.

frankly, everyone is.

we eventually left the hotel room and made it to the pool. splashing around gave Tito enough energy to try a walk. 

going for a walk led us to the bellmont park by the pier which led us to the wide open beach which led us to what looked like a giant human hamster wheel off in the distance, rolling on top of the waves.

inside were a couple of dudes from the Wow Bubbles company, testing a new product and before you know it, Tito was climbing in. because you know what? there is such a thing as a free ride.

IMG_2110

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keep going. do one thing and then the next. you never know when your wow moment is coming.

 

This is more like it…or is it?

Now, this is more like it. Color! Yellow, green, red and blue painted buildings, ocean gleaming in the background, blossoms in the foreground and everywhere animal leg tree-trunks with tufts of palm leaves erupting from the tippy top like fancy feather headdresses.

I see where Dr. Seuss got his inspiration. Our hotel room looks out to the bay, the shoreline dotted with Truffula Trees.

Our trip across the country went well once we got past the rough patch at security, having to empty all our water bottles including the two that Tito has with him at all times. There’s the one that he drinks from continually, filling and refilling at a rate that is directly proportional to the intensity of his anxiety. And one that must be full at all times but can never be used, i.e., is there in the event of an emergency. (What sort of emergency, I don’t really know. A desert crossing?)

The difficult part began once all the water was gone. The line, you see. Slow going, that line. We waited for our turn to deposit our shoes, coats, bags, bottles, etc.,  into plastic bins and push them through the machine’s maw but the line simply wasn’t moving quickly enough. Tito’s discomfort escalated until it was clear he could not contain himself. “I’m sorry,” I said, as I balanced our buckets and past the many many sock-footed people. “My son is going to have an anxiety attack–we need to go ahead of you.” Thank you, Mom, Tito stammered, greatly relieved.

On the other side, we grabbed his bottles and dashed to the nearby bar. I stationed myself with an eye to him on my right and an eye to Dave on my left making slow progress from way back in line on the other side of the magic metal detector gateway. The friendly bartender, having no one to tend at 9 am on a Tuesday morning, filled the bottles as instructed, 7/8ths of the way up the neck (because you can still fit the top in without spilling a drop, you see, if the mouthpiece is open).

Tito did well on the plane. Why? Because he had a screen in hand or a screen inches from his nose (on the back of the seat in front) for hours on end. Despite the winter storm that blew in the night before we left, our flight wasn’t canceled though it sat on the tarmac for well over an hour as we waited our turn at the wing de-icing station. Fine with me! Bring on the de-icing chemicals so our flaps can pivot whichever way is required to turn the plane upside down when the engines blow and we have to decelerate in order to flip again and glide, á la Flight.

“How was that, buddy?” Dave asked Tito as he pried the iPod from his clammy fingers when we landed in San Diego 8 hours after boarding the plane. “Dreamy,” Tito replied, glassy-eyed.

Yesterday was our first full day here. We went to the zoo, typically not a big thrill for the boy. (But what really is? Going to a museum? Not really. Exploring? No! Shopping? Torturous.  Renting bicycles? Exhausting. Hiking in a beautiful park? For how long? and what if it’s hot? Going for a drive along the coast? But…what if we run out of water?)

As I said, not typically a thrill but yesterday, a sheer delight for all three of us. The animals complied. The hippopotami, frankly, acted a scene straight out of a Disney film, leaping and twirling and spinning and dancing an underwater ballet that was both beautiful and comical as every once in a while, one would drop a series of poop depth-charges, further murkying the already opaque waters, and initiating a fresh flurry of activity from their little poop-eating-fish tankmates.

We’re in the hotel room now. Dave’s drawing. I’m typing this. Tito is working on a D&D character sheet, intermittently erupting in mini-shrieks and swears.

What the F? Ahhh! Ooooh! EEEEK! Asshole! Oh! I wasn’t supposed to say asshole! Shit!

It sounds like either he’s now got Tourette’s, or he’s trying to get a rise out of us but I don’t think it’s either one of those. It’s more like a car that got the wrong gas, one that can’t help but punctuate a smooth drive with bucks and backfiring, sputters, and sudden stalls.

It’s only 1 pm. I’m not sure how I’m meant to translate that metaphor into some strategy that would allow us to possibly do something other than simply look through the sliding glass doors at the bay and surrounding Truffula Trees… Certainly, I’m not going to chop them down and make Thneeds, because as we all know by now, Thneeds are not what everyone needs.