The party: part 1

So. 

The party: part 1.

Because my Boy at a Birthday party, at someone else's house, with 30 people, for 1.5 hours, deserves two posts.

Okay maybe more than that, but I have two started. 

Focus.

So we went to a party. 

And while the party was about a beautiful, feisty, blonde little princess, in my blog everything always ends up being about my Boy.

So... Him.

It wasn't the first party he's gone to, but as my Boy gets older these things get harder in a lot of ways.

In some ways they get easier.

Easier... He is less likely to take off down the street at APH (autism per hour, which is more voodoo than speed).

And fewer meltdowns.

And less violent meltdowns.

And... well... hmm.

Harder...Everything else pretty much.

His understanding of himself and the world is improving. Incrementally. Teensy increments. Which is just enough that now he is starting to understand that he doesn't understand. But not enough that he doesn't understand WHY he doesn't understand. And he doesn't understand why others don't understand.

Which is confusing. Right?

 

Everything is soooooo confusing for him. 

And he tries really, really hard.

He tries so hard that it hurts my heart. (If my heart is that big lump in my throat and that tingling burn behind my eyes.)

But no matter how hard he tries he sees things differently than everyone else does. Hears differently. Processes differently. Understands differently.

He is an alien, dropped involuntarily down into a foreign land, surrounded by people who don't speak his language and whose customs and rules and expectations and manners are all strange and confusing to him. 

So that's the vague forest view of where we are.

Tree #1: My Boy isn't unaware of peers. He wants to play with them. 

 Tree #2: He has no idea how.

   Tree #3: And he doesn't understand them. What they want. How they think. How they play. What they are saying.

     Tree #4: No social story can prepare for every possibility.

So.

He approached two boys at the party (which is huge, HUGE, HUUUUUGE. Can you hear the heavenly host of therapist angels singing?) who were playing with a giant red ball.

And in his robotic, memorized way in his awkward, adorable, lilting voice he asked "May I play with you boys?"

And one of them nodded. 

As they both stared.

Because what kindergardeners understand and see and process is enough to register that ''something'' is up but not enough to know or understand what that ''something'' is.

The younger one, who seemed about a year younger than my Boy (so maybe 4?) shrugged and started off on the rules of the red ball game.

Something along the lines of ''you throw the ball at the other kid and if they catch it they're 'it' and if the ball hits them but they don't catch it they're out."

And looking up and down and around in circles my Boy seemed to process "ball" "kid" and "catch."

And he stood between them, arms up, giggling in pure joy that he was playing with them while the ball went up and around and over and back and forth. And he continued to stand there, giggling. Arms up.

As the boys shouted directions at him, trying to help him follow the rules.

And so I bent down and tried to help break down the rules of the game to my Boy. Rules which, if we were home and quiet and he was ready to listen, were not beyond his ability to comprehend. Close, but not completely. But rules which, at the loud, festive party in a strange home surrounded by kids, were completely beyond him. 

Completely.

And then, without any animosity in his voice, Older Boy said, "That Boy doesn't understand what I'm saying."

And the Younger Boy said, "This Boy doesn't know how to play ball."

And my Boy, realizing he was somehow falling out of their graces and not understanding why or how to correct it, began banging his head with his left hand and pointing at them with his right shouting "Geegeegoogoo diaper baby poopoo."

And then he laughed his uncontrollable laugh. Which is not a joyful laugh. It is the laugh of stress and frustration that is an all-too-familiar precursor to a physical assault.

And I had to corral him into the birthday girl's nursery.

Which was the fairest redirection I could come up with. And still totally, completely unfair.

And he ran in circles.

And I tried distracting him with toys.

And he ran in circles.

And I tried to rock him.

And he ran in circles.

Until he sat on the floor, took a few deep breaths at my direction (which was a huge improvement; he was LISTENING to me), and then he started bawling.

"I want to playyyyyyy!!!"

He wailed. 

And he cried.

And he ran in circles.

And I knew if the conditions were different: if it were a playdate and the house was quiet and I could explain the rules and talk to the other boys and manage things, I might be able to salvage this.

And I knew that in a house filled with (mostly) strangers, with a party ongoing and everyone talking and kids playing with each other and, and, and... that wasn't possible. And there was no way to salvage this.

But I still tried.

We talked (again) about not using ''diaper'' and ''poo" and "baby" when speaking to other people.

Which didn't work because those are automatic and I know he is scripting and those are the words he has right now when he's overwhelmed or embarrassed and none of the other words I tried to give him worked.

"Friends" and "play'' and ''ball'' and, and, and, and... were just more noise.

And if he hadn't found one of those fabulous door stoppers that make the springing ''goinnnnnng'' sound, I would have lost him.

I know there are a million other ways I could have handled this. And I know my bag of tricks is smaller than it ought to be.

But I did my best.

And he did my best.

And we ended up in the nursery flicking the door stop.

And that, my friends, is part 1. 

That is 15 minutes (that took 2 days to write) out of our hour and a half at the party. 

A party that was, in meltdown terms: enormously successful.

Heck, a party that in terms of a moderately-severe autistic five year old attending a party at all, was a brilliant success. And I know that.

But in terms of enjoying a party: it was terribly, terribly sad.

Especially as I sit and listen to the new scripting that has replaced "Geegeegoogoo diaper baby poopoo."

The new script that I now have on a dozen videos, all very Rain Man in the 'over and over and over' manner that tells me just how much he understands. And how much he wants to understand. And how much he doesn't understand at all.

"That boy doesn't know what I'm saying. This boy, this boy, this boy, this boy."

Over and over. And over.

And every time he says it I see this... my Boy laying on the floor, flicking a doorstop. Wanting to be a part of a world he isn't ready for.

A world he is physically only a few feet and one closed door away from. 

And yet in every other way, still very, very, very far away.

And I cry.

Not because we have it worse than everyone else, which we totally don't.

But because he still has it hard. Really, really hard.

And I wish he didn't.

Fears and Hope

My greatest fear isn't autism.

My greatest fear isn't DD classes.

Or wandering.
Or language disorders.
Or night terrors or meltdowns.

Or the restructuring of my dreams for our future.

My greatest fear is that I am entirely capable of helping him become one of the most amazing people I've ever known. But that I will fail him because I didn't know how to do better than I'm doing.

That there was a better therapy, a better supplement, a better lifestyle. A better way.

My greatest fear is that all the understanding, patience, love and brilliance that he needs is all within me, and I don't know how to tap into it.

My greatest fear is that I'm capable of being enough. I just don't know HOW to be.

My hope is that by filling up our days with the kind of pleasant mediocreness I pretend would exist if he were NT, I am finding our way to that brilliance he needs.

So.

We shop in our pjs.
Because he has a hard time with clothes.

We share ice cream.
Because he hasn't figured out how to lick the backside of his cone.

I let him carry baby toys around the store.

I repeat with him, line by line, his favorite movies.

I hold him in the tub when he's scared of the water eating him.

We yell. We giggle. We tickle.

We cry.


And I spend my days with him chasing hope.

And outrunning fear.

May I be ever swift.

<3 Spectrum Mom

Pic of my Boy. In his pjs. Hunting zombies. From the trunk of Grandma's car.

Which everyone knows is the best vantage point for hunting zombies.

 

v40.31 ; Wandering under the diagnosis of Autism Spectrum Disorders

Wandering. It's kind of a calming word by itself. "To wander.'' To aimlessly stroll without care or concern. Weightless. Worry free.

ICD-9 codes change things. They can, by their neatly organized placement in the DSM, suddenly change the very meaning of words.

Because the ICD-9 for ''wandering'' (v40.31 secondary diagnosis to Autism Spectrum Disorders 299.00) is not worry free. It is not weightless. In fact, of all the numbers tagged onto my son's electronic existence, this is the one I hate. If he wandered I would still hate it, I'm sure. But I hate it most because he doesn't ''wander''. He bolts. Technically ''bolting'' or the ''atypical fight or flight response of a child on the Autism Spectrum''. It is the scariest, maybe the only truly scary thing about our journey through diagnosisland. These diagnoses, the words, their meanings are all arbitrary. They don't mean to anyone else quite what they mean to me. Most of them are just labels. Scotch sticky labels on a box or binder where I keep his what-have-yous for our seasonal updates.

But bolting means something more. It isn't just a sticky label. It is frightening. Terrifying. It makes me feel helpless.

I've never lost him before, but it's always been coming. He's never been in (or near) harms way, but it's always been just around the corner; waiting for me to look the other way, to bat an eye, to miss a step.

v40.31 is a little dagger just waiting to cut.

He's almost five years old. Most five year olds play t-ball or ride their dogs around the back yard or put firecrackers inside of frogs to see what happens (yes). Mine goes to therapy. Occupational Therapy. Physical Therapy. Speech Therapy. Behavioral Therapy. Animal Therapy. Water Therapy. And every one of those scheduled, planned events comes with a qualifer; he bolts. He panics when he leaves the car. When one therapist tries to walk him to the next one's office. When a child he doesn't know is playing in the waiting room. When Momma leaves the room. Or the car.

He bolts.

There is something in the anticipation of  the transition that his little mind, bent on the all-consuming comfort of routine and predictability, cannot tolerate. And he bolts. Like a teenager being chased by a knife-wielding maniac, he just...takes off.

I used to put him in overalls. They were like built in handles for grabbing the bolter. But dad-blast-it he outgrew Thomas. So now we have graduated to a monkey; I used to say I would never put my child on a leash like a dog and now by-gawd give me the freaking leash.

Mr. Monkey working hard.

Today he didn't have Mr. Monkey on. He was in the car. In his car seat. He was fully harnessed. A/C running, door cracked while I made my heck-of-a-sale from one of those swap sites on Facebook. (Have you tried that? I can sell anything on those sites. I've seen people sell used shampoo bottles. It's like garage sale heaven.) So this transaction takes MAYBE ten seconds. I stand up out of the car, hand my gently used item to would-be buyer, take money and BAM.

It's like someone hit me with a baseball bat.

I see, out of the corner of my eye, Boy running by me full blast. Right through the gas pumps (I was parked up by the door so by the time I realize this is MY child, he's a solid 30 feet away and running hard) headed for the grassy knoll beyond. Grassy knoll; otherwise known as a median. Like.... the BORDER OF THE HOLY FREAKING HIGHWAY.

Some blonde angel in scrubs and diamonds jumped out of her Mercedes and grabbed him as I was running, gasping and screaming bloody hell at my 4 year old to come back. Which was hilariously silly because he doesn't respond to yelling or his name being called so I was really screaming just so people would stare at me like the moronic, helpless mother I obviously am.

I'm still see spots in front of my eyes.

Thank G-d in heaven she was blonde. And pretty. Boy loves a pretty girl. So when she grabbed him he looked at her with a smile, fully under the impression he had nowhere else to be. She followed us back to my car and from the expression on her face and the scrubs she wore I expected something worse than what I got. What I got was an absolute gift. She stood there while I potato-sacked my kid into the car (giggling and squealing because who doesn't like to be tossed into the car like a sack of potatoes by a Momma who's hyperventilating). She stood behind my car. Looking at it. And I watched her. And then her eyes came up and met mine and she said "We got him. He's ok." And she walked away.

See the thing is, when she braked her expensive car and flung her body out into the traffic of that gas station, she didn't know. She couldn't. When she caught him and looked at him she couldn't tell. There isn't a chromosomal-related physical characteristic to tell her why she was there, stopping a child from being shredded by oncoming vehicles.

All she had to help her process, all she saw that made any sense in the world, was my ''I could care less what you think about bumper stickers, my son is autistic and he bolts so I am going to plaster my car with warnings in case, G-d forbid, anything ever happens. So someone will know. So whoever sees this car will understand, for just a brief moment in just a tiny way, that the child inside is precious, but the child inside needs extra understanding." And she saw them. And she read them. She read them. And she understood. She understood that v40.31 sucks. And whatever else is going on inside that car, v40.31 is the worst.

"He's Ok."

And then she got into her car.

And she helped v40.31 suck a little bit less.