The party: part 1

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.
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. But incrementally. 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.
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.
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.
Pic of my Boy. At the party. In the nursery. Flicking the doorstop.

One comment

  1. I think only those of us who live with autism every day only could understand the pain for ourselves, for our children. I have a 20 something year old and while he wants to be a part of things, it’s very hard due to his routines and people do try to be nice but it is just a hard life. Prayers to you and I understand the pain of not being able to go to a simple birthday party without a meltdown. God bless you on your journey. I have to believe that God understands and counts my tears.


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