Friday, April 10, 2015

Teenager

That's right. It's the big 1-3. Joey is an official teenager today. 


That's my little man. 

His Royal Majesty, King Joey. 

Grandma even allowed balloons in her house for the occasion. 

Incliding one that swam about the living room. 

Yep. 

Dinner at our favorite Japanese steakhouse! Joey loves the "magic show."

Brothers, adventuring together.


Saturday, April 04, 2015

So Literal.

Overheard at Grandma's:

Grandma: Joey, want to come help me get ready to dye eggs?
Joey (concerned): You're going to kill eggs???


Sometimes we need those reminders that Joey's use and understanding of language is unique.

Or at least shared by Amelia Bedelia.


Thursday, April 02, 2015

Welcome to April

I know, I haven't been here in a while.

We've been on a roller-coaster ride. Some was expected. Some wasn't. Puberty is upon us. No one seems to know what to do to help him through it. Spring is here. The usual strategies are apparently out the window.

And oh, look, Autism Awareness Month. Yay.

Hey, we are aware. So, so aware. Today Joey made sure his new school was really, really aware.

How do you discipline a child for whom the usual methods have absolutely no effect- or worse, make it worse, and even reinforce the behavior? What do you do when the mental health support you finally managed to get suddenly stops, because the therapist moved away and no one else handles the special needs of your kid?

I need my kid sleep at night. I need my kid to quit cussing people out just because he is upset or scared or anxious. I need school to stop having breaks and let my kid have a couple of normal, routine weeks. Seriously.

I know he is better where he is than at the regular school, and is moving along academically again. But these are the kinds of days that I just want to cry. How is he going to manage to get through adult life if he can't even handle an environment that was especially designed for him, full of specialists on his needs?

What are we supposed to do?

Friday, January 02, 2015

Shades of Grey

"You're driving too fast, Mom. The speed limit is 45. You are going 52. Speed limits are made to keep us safe."

Joey has hit the age when he realizes that driving is cool. It lets you go places. It puts you in control. The driver's seat has always been a fascination, but now it is generalizing to the idea of growing up and gaining freedoms.

We are driving to the dump. My mom doesn't have trash collection, so Joey is with me to do a Trash Run, where he can help me with the bags (tossing them into the big compaction hopper is awesome heavy work) and watch the trash be compacted away. It's also a Ride Alone With Mom, which is a treat; he gets to sit up front with me and ride.

"I'll never drive," he says suddenly. His voice loses the mechanical quality at its edges for a moment, a pause in the general driving script to make an observation. But I know this new tone, too; and I suddenly feel that turn in my stomach that always accompanies it.

"Of course you will, Buddy," I assure him. It is the expected response, and I want him to feel the familiarity, the cheerfulness, the casual air of my response.

"No," the grief in the word could be a whole conversation, but he goes on. "My age limit is twelve and under. I will never be a teenager. I don't have a birthday."

It's a tone that makes you want to leap out of your soul and hold him, until all that pain he is expressing goes away. I have never figured out why he is sad, or why it comes out when it does.

Instead of holding to the tack and spiraling into the abyss the conversation teeters upon, I decide on something else.

"There are three basics of driving," I put in my lecture-voice, "The two pedals- this is the gas, this is the brake; and the steering wheel." He stops, his head tips to one side, he looks at my feet.

"The gas pedal makes it go faster. The brake pedal makes it stop," he chants.

"One thing to remember about a car- it is made to move. So you don't even need to press the gas pedal to make it go- you just turn it on, and it will move forward. You press the gas pedal to go faster. To go slower..."

"You hit the brake. Not too hard!"

"Not necessarily," I grin, throwing in a little wrench to get him thinking. "All you have to do is stop pressing the gas pedal. See?" I take my foot off the gas, and we slow down. "You use the brake when you have to stop faster than just letting up on the gas lets you."

"I'll use both my feet to drive," he announces, still look at my feet.

"No, actually, you just use one foot," I observe, stepping on the gas for a moment to keep us moving. "When I want to stop, I just move my foot from the gas to the brake," I clarify, and demonstrate.

For a moment, he is fascinated. Then I blow his mind by showing him that after a turn, you just let the steering wheel go, you don't turn it back. He stares at my hands a moment, frowns, the script returning.

"The speed limit is 45. You are going too fast."

"Well, that's one thing you will have to learn about driving," I sigh. "Sometimes the rules bend. I know how to drive this road. If you are out on the Interstate, the speed limit is 65. But if everyone around you is going 70, you don't want to be a traffic hazard- you need to go 70, too."

This totally Does Not Compute.

"But the speed limit is the rule," he spits out in dismay, a phrase I have never heard him use before. In the face of the idea of rules that bend, but not break, I glimpse the black-and-white thinking that dominates Joey's world, in a way and with an intensity I have never really seen before. Perhaps as he gets older, he is expected to understand more about shades of grey, and so it is now more obvious.

He returns to the more comforting gas=go, brake=stop. Then he returns to never getting any older. No birthday. Twelve is his age limit. Its a conversation that I find terrifying, simply from the frankness with which he presents the idea of not ever being a teenager. That he will never learn to drive. That he will never have a birthday.

My stomach lurches. My eyes burn. I show him turning the wheel again. He is distracted again. Now he chats merrily about owning a truck when he grows up, so he can "haul my things easier."

And I search for my heart in the fog of grey.

Thursday, January 01, 2015

HAPPY NEW YEAR!!!!


Sending you all hugs and great thoughts, and hopes for a fabulous year ahead!

Wednesday, December 10, 2014

Soundified

When Joey was little, he came up with phrases that made him feel happy. Very often, by the time he started repeating them, the words were lost in a pool of sound, but they made him feel better, even cracked him up. It has been a while since we have heard one of these happy scripts, where he would repeat it just for the feel of the words in his mouth, and giggle hysterically.

Today, we have two.

"Steal Olaf's nose and feed it to Sven!" he chimed at me this morning. This was a vast improvement from yesterday, when he woke up grumpy and let me have it double-barreled from the get-go. The hysterics followed. I can still hear the fuzzy edges of the words, a sort of stuffy sound that I now recognize as the apraxia- but also a cue that the meaning of the words don't matter. It's the sound, the cadence of the words, the sharp rhythm that entertains him. The words no longer go to mush; this is a Frozen reference. Where the exact phrase came from, I don't know; always before, these phrases are ones he had heard, and became enchanted with the sounds. Certainly, it is a script, but the source this exact line is lost to me. Part of me hopes he has made it up himself, heard it in his head.

Scripting has become a problem most of the time- both of word and action. Stealing items as a "joke." Repeating "grounded" over and over- referring to punishments. Negativity, self-denigration, and depression have been a running theme. Profane language has become commonplace, and trying to correct it, vain. When I hear about police using force against people simply because the people used bad language towards them, my stomach does somersaults of fear. He bolted form the house twice this past week- what if a police officer had found him in that state?

I welcome the return of soundification. To celebrate, I turned on Frozen for him this afternoon. Then I gleefully listed to him soundify and giggle for an hour.

Music. Sweet music.

Saturday, November 15, 2014

A Study in Boy Face

What difference does it make to have support, appropriate teaching, appropriate education settings and levels? What difference does individualization and understanding make? 

It makes for these.