Imagining

Max has finally begun imagining. For those of you with neuro-typical kids you get used to the animal or car sounds, the silly times they wear socks for gloves or parade around in mommy’s high heels. How they pretend to eat things they know aren’t real food or substitute plain square blocks for houses or trees. Most of the time you probably don’t even realize they are doing it, playing quietly with their stuffed toys or dolls while you read the paper or get caught up with a friend over the phone. You probably tell them to stop pretending at the dinner table or to put away that bed sheet because it is NOT a cape and just came out of the wash. So many of these little things go unnoticed or dismissed because they are normal.

But when it’s not there, when you try so hard only to have your child throw that stuffed doll back in your face or listen until you can hear the crickets outside waiting for the blessed sound of a rumbling truck to hum from your child’s lips, that’s when you start to worry.

At Max’s evaluation the doctor tried over and over for him accept, if not participate, in pretending a baby doll had a birthday party. She made a quite realistic cake out of playdough topped with a candle and sang to the baby, trying over and over again to get him to do that little simple thing we all take for granted every day,pretend.

But he wouldn’t or couldn’t and cried and screamed when he was presented with it. And I cried that this seemingly simple, normal thing was missing from my son. That was only in mid-November.

Six months later, Max has started to pretend. He started feeding his stuffed penguin, Ping, half a wooden peanut butter sandwich and even making eating noises. I jumped on the new skill and picked him up a play kitchen on clearance over the weekend along with a couple sets of wooden play food. Max loves it. He keeps coming back to it over and over.

 

It’s quite a miraculous thing, this pretending business. He’s opening up, growing, and I am so proud to see him making these steps that are gigantic for him. Having a child with Autism gives you the gift to appreciate these small advances that so many take for granted.

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He made her cry

The little girl’s cries were nearly as loud as Max’s screams. She hid her face in her mother’s leg, sobbing. Her four year old words stung my heart even though she didn’t mean them to. “The little boy is yelling at me. Why is he yelling at me?” I tried to quiet Max but he needed to tell me something.

Except the only way he can is by making loud noises at the top of his lungs. Sometimes he points but today, the bright lights and colors of the mall were just too much for him. “He’s not misbehaving.” I wanted to say “This is just the way he talks.” But where Max’s words come out overloud, mine were caught in the silence of my throat.

I had only wanted to take him out to holiday shop. My oldest daughter, Olivia at my side doing her best to figure out what it was he wanted. She gets him. She doesn’t look at the boy, straining in his stroller to get to whatever it is he needs or wants and think he’s being mean to her. It’s just the way he is and she accepts it.

Sometimes we forget that loud voice that doesn’t form true words can be so very jarring. To be honest, it wasn’t much louder than the ambiance of the Mall; the overhead music paired with the children’s TV show playing in the store, the sounds of screaming children just outside at the inside playground, the people loudly divulging their personal business on cell phones and the store attendants yelling back and forth through the store as they discussed the newest display in which we were fully submerged, knee high in sprawling boxes.

It was chaos plain and simple and Max had had enough.

I tried to hurry and pick out my purchases still listening to the mother console her child while I felt her eyes across the rack shooting daggers at me. “It’s not his fault.” I wanted to say and defensively add, “She’s not even near him.” but I’m new to this diagnosis and for the past three years I’ve sheepishly gone about my business, ushering Max out of stores as quickly as possible, dropping armloads of purchases down on random counters just to relieve myself of the snooty stares from other patrons. I haven’t found my voice yet when I’m out and getting glares of disapproval from people that think my son is just being bad.

I want to shout at them “It’s the florescent lights! It’s the freakish Santa display! It’s the fifty thousand twinkling lights that line every aisle, the loud sounds from motion activated toys, the six dozen TV’s that stretch the entire height of the wall, the whatever overstimulating thing competing with every other overstimulating thing.” But I can’t. I don’t.

I just quietly do my best to placate my son and move away as quickly as possible. Do my best to ignore the haughty looks.

Before I didn’t understand. I thought Max was “a handful” I waited for the day he’d “grow out of it” when I could go to the store and have him be okay in a shopping cart, to ask me for something instead of scream. To walk beside me, hand in hand without being gripped by white terror that he’ll bolt. We stayed at home away from the stares, the rude glares from mother bears who’s child cries because Max is over loud. Away from the danger and over stimulation.

Other than therapy and the grocery store where he allowed himself to be buckled into the rocketship shopping cart, he was effectively house bound. I’m trying to change that.

I shut my eyes, tears pricking behind the lids as I made my way to the counter. Max yelling, reaching to touch the sparkling red and gold Christmas tree just above his head. The arched brow of the checkout girl at a particularly loud and long outburst nearly sent the barely withheld drops over the edge. I’m not comfortable yet saying Max is Autistic in public. I’m not comfortable explaining away his behavior as a disability. I don’t think strangers get the right to invade my privacy because their public phone call is being disturbed by a child trying to cope with excess. I look at my oldest daughter as she tries and fails to talk to her brother. He never looks at her, never responds to her soothing voice as she coos to him, doesn’t turn when she asks for a hug or tries to show him a toy.

She never flinches when he screams long and loud right near her ear showing more patience than 99% of the adults we meet. I hug her as we leave, her present tucked in the bottom of the bag, the one she didn’t notice me buy because she was being a good big sister. I wish there was more I could give her, some way to show how much I appreciate her selflessness.

The mother and the little girl pass us on our way out “Why is he yelling at me?” She wimpers again.

Olivia turns, looks her straight in the eye and says “He’s not yelling at you, that’s just the way he talks.”

The tears return for a different reason. I hold her hand as we leave and think it might not be so hard to find my voice after all.

When a Door is not a Door

After raising four kids and homeschooling for five years, you’d thinkĀ  would have some parenting tricks up my sleeve. Which I do. I’m quite proud of all the trial and error I’ve gone through to get the tool box filled up.

And then came Max.

Though for the past few years I’ve disparaged that the things that worked with all the other kids, just don’t work with him. I’m slowly starting to realize why. And I’m slowly starting to figure out what works for my guy.

Today while talking with some Autism service people it really clicked into place to me just how unique Max is. We were discussing our boys and how they were so alike in that they could say just about every single letter of the alphabet, recognized numbers, spelled out words yet they didn’t talk. The ability is there but not the understanding.

For example, Max can spell D-O-O-R. He knows the shapes for each letter, the sounds, and says them in order yet “Door” has no meaning. He can’t equate those letters to mean the thing. “door” is not a door. I realized today that that is the opposite of how my other children learned. For them they understood the concept of “door” before they understood the letter combination that created it. For Max he understands the letter before the concepts.

I’m working on going around the house labeling things with the label maker. Trying to help him make that connection that the symbols he loves mean something.

This one little realization feels like such a big WIN to me. I “get” this part of my kid right now. Having a child that is closed off, reserved, silent is hard. I feel like a little door just opened into his world, I can barely contain the excitement as I peek inside.