Following Elias

Parts and Pieces

I don't know what to write tonight.

I'm thinking about Elias's future. Where will he be at 22, when he ages out of the support systems available for children with special needs?

If he doesn't shapeshift into a tiger, what will he be when he grows up?

I watched two movies this week on PBS: Lives Worth Living, about the the Disability Rights Movement, and Autism: Coming of Age. My mind expanded more than a few degrees in the watching. And yet I sit here unable to write about what I saw. Still processing it all.

Elias will be tested in the next two weeks for Autism. 

And I do think he's somewhere on that spectrum.

And a part of me wants to throw down this kitchen table I sit at, crash it to the ground along with this computer and all the words I could ever write on Autism and Cerebral Palsy, and visual impairment, and a baby born and resuscitated before 25 weeks.  I want to kick over the chairs and stomp on the wooden legs until they no longer stand. Till they fall to pieces too.

And yet another part of me sees Autism as a blessing for my miracle boy. For the baby who squeezed my finger when we first met so I wouldn't let go. Who shows me, daily, what strenth is and how to love beyond words, above ordinary and expected and normal and healthy and OK.

A blessing? you say.

Yes.

Elias is second grade boy who is legally blind, wears diapers, and  walks with canes. He sits in an adaptive chair in his classroom of 25 "more typical" kids with an Aide by his side and will say out-loud, "I have a poop." And yet he has shown no emotional angst about how he is perceived by others. Or even how he compares physically, socially, or intellectually to kids his age.  If this is the gift of Autism, I may not need to destroy our kitchen table, the place where I write, and where our family gathers to share a meal at night. I may still want to sit here awhile and sort it all out.

I don't know where Elias will be at 22.  But his place at the table, in our kitchen, in our home, I owe to the protesters of the Disability Rights Movement, who literally crawled up the Capital Steps to demand access to public services and inclusion in a society that had previously put children like Elias in an institution to just sit.

To sit.

Elias will not just sit for a living, this I know. And the rest, well, it will come.

 

When I Grow Up I Want to be a Tiger

Elias brought this paper home from school. He filled in the first three blanks himself and dictated the rest of his answers to Ms. Julia, his fabulous Teacher's Assistant.

"Where will you live as a tiger?" Nick asked.  "Because there aren't any tigers in Anchorage."

"Except for the zoo," I added. "Do you want to live in the zoo?"

"No," Elias smiled.

"Where do you want to live as a tiger?"

Elias turned his head towards the window and back towards us at the table. "Seattle."

"But if you are a tiger how will we talk to you?" I asked.

 With hardly a pause he answered: "On the computer."

Ahhh, of course.

And why not a tiger?

When I shake my Magic 8 Ball to peer into Elias's future, I only receive cryptic answers:  "Ask Again Later" or "Better Not Tell You Now".

I can't yet picture Elias as an adult. My mind holds no images.

It's hard enough to belive that he's already a quarter of the way through second grade.

So a tiger, well, maybe...

"Who says parenthood isn't a full contact sport?"

Nick smiles at me and I laugh despite the icepack on my face.

"Do you mind getting me a beer?" I ask my husband. "Or a shot of whiskey?" I sit in the glider rocker in the corner of Olive's room, as far away from our kids as I could get without walking out of the house.

A moment earlier:

Elias, Olive and I play the "jumping game" in the living room. The kids take turns climbing onto the ottoman and jumping across my lap onto the couch.

Elias leaps when I'm looking the other way, watching Olive climb down. His bony little elbow clocks me right in the nose.

I broke my nose a few years back when I took a man's shot in the face during a soccer game. A nose never really heals.

I throw Elias off me and practically howl. I cover my face and bolt, sobbing, to the other side of the house, where Nick finds me.

"Do you want both?" Nick asks from the doorway.

"Yeah, I was just gonna say, actually I want both."

Something about your own child smacking you in the face feels raw.

A much more emotional pain than getting hit with a soccer ball. Accident or not, it's your baby hurting you, this child you have turned your life over to since his birth, often meeting his needs before your own, giving, caring, loving, and WHAM.

I hold my old Paddington Bear to my chest, and think about all the ways children hurt their parents over the years, by accident or not...

And I know this is only the beginning.

Some day Olive will march into this very room and yell, "I hate you! I wish you weren't my mother!" as she slams the door.  Elias will hit me in the head with his cane. On purpose.

Who knows the heartache that lies ahead. How many times will I want to throw my children off me, cover my face, and cry as I turn away?

Who knows.

This I know: It's worth it.

Earlier today, I bruised my knee playing soccer. Justin and I turned at the same time and our legs collided. We both kept playing. I considered quitting, not because my knee hurt but because one of my teammates kept yelling at the rest of us, throwing his hands in the air, rolling his eyes, I didn't need to be berated on a Sunday afternoon. By a teammate. In a pick-up game.

But I kept playing.

Because I love contact sports.

And I love my children, icepacks and all.

Passing the pen

Sick.

My first cold of the school year. A person can never have too many hugs-- but when you work at an elementary school, your bound to catch a virus or two.

So instead of writing tonight, as I planned, I want to share a link with you. If you haven't already read this story-- "Notes from a Dragon Mom"-- please do.

Warning: you may need tissue.

My hope is all of us will pause our future projections, for a moment, to love what is before us.

Right here.

Now.

A Free Day

Happy Saturday!

Dim

We lost our hockey game tonight 6-0.

We were losing 2-0 with 7 minutes left in the third period. Two of the next four goals they scored with less than two minutes left on the clock and I was on the ice for both goals.

I got a puck in my ankle, a helmet in my side, a stick in my back and I missed two open nets.

Not my night.

Not my week.

I learned that a few second grade boys have caught onto Elias's knack for repeating what other people say, and they have been whispering  to him to say things during class.

So far its fairly innocent: "Say Yo," "Say goo goo pants," "Say doo doo,"...

But my heart breaks anyways.

I can see Elias, smiling, saying the words out loud, with gusto, thinking its funny.

Not understanding that he is not in on the joke.

And I think of all our dinner conversations where we play with the sound of words and how I laugh along with him when he makes up silly sounds...

How is he to know that this is different?

How do I explain to him that kids don't always have his best interest in mind?

I sat two of the boys down in my office and had a talk with them as both their School Counselor and as Elias's Mom.

"Elias's brain works differently than yours or mine," I said. "And that is why he often repeats what other people say. It is also why he walks with the canes, why he wears pull-ups..."

"I didn't know that," One of the boys said, glancing at the other, and I could have put a muffle on my mouth.

Really? Did I just give this kid more ammo?

This morning when I walked into Elias's room he sat up in his bed and said, "I don't want to go to school."

"What would you do if you stayed home?"

He turned his head to the side and back towards me. "Work in the garage with Daddy."

Right now, that doesn't sound so bad.

Yet I know tomorrow morning I'll be the school cheerleader again, reminding him how much fun it is to do math and science and reading and writing and to play with all the other kids.

I'll ignore the crack in my heart and send my blue-eyed boy into the trenches, armed only with his forearm crutches and an army of supportors across the globe.

Yeah and um, he's legally blind.

"I Found the Brown Jug!" Elias sits at the kitchen table exploring Google Maps on his Ipad.

Sure enough, he left our house on Doris Street, turned up either 32nd or 34th, right on Lois, left on Woodward, and located the liquor store from our old neighborhood that we haven't lived in for almost two years.

Yeah, and um, he's legally blind.

Crazy, indeed.

All of it.

Make a Wish and Sometimes it Comes True

There's a bouncy house in the back yard.

"Can I go in it?" Elias asks the young man wearing a yellow shirt that says This Guy on his chest.

"Um," he hesitates as he takes in the blond boy with blue canes,  "I think so. You can try."

Elias doesn't move.

"He says you can try it." says the Mom I haven't met yet who walks down the back stairs to greet us.

I finish locking my bike and walk towards them. "Oh, he can do it. He can leave his canes and climb in."

"Where can I leave them? Can I leave them here?" Elias stands at the border of the driveway and back yard, staring towards the giant blown up cube with a whale on top, listening to the shrieks of the kids who jump inside.

"No, not here. See that blue tarp in front of it. Sit there and take your shoes off."

As he walks over, I remember he's wearing his new orthotics, which we call his power boots, and with them on, he can't take off his own shoes. So I follow and help.

Follow and help.

Follow and help.

That's what we do as parents with young kids.

That's what we may always do as parents of children with special needs.

(Daunting. Just the thought of it.)

The kids jump in the air and land on their butts and jump back up again.

Elias crawls up the ramp, crawls into the middle of all those limber limbs and smiles as he moves with their motions.

A minute, maybe two, pass before he slides back down the ramp. "Mom, mom, mom..."

"Yeah Babe?"

"There's too much bouncing in there."

"Yeah? Well you can come out." I still hold our birthday gift--a gift-card to the City Diner to get a milkshake, Elias's idea-- in Elias's little red backpack, which also contains a Fred Meyer bag with a snack bag full of wipes. And a diaper. Just in case.

"Hup, he's going back in," says the boy monitoring the bouncy house.

And we repeat this dance. Elias crawling into the mayhem, riding the other kids' waves and then sliding back out calling my name.

Mom, mom, mom, Mama...

I also have a girl attached to my hip saying, "Ms. Christy maybe you can come to my house and you can come to my brother's birthday party you are invited you know. I'm not sure if we are going to go swimming or to Chuck E Cheese, what do you think?"

"Ms. Christy!" a 5th grade boy, friends of the older brother calls, and I turn just in time to trap the soccer ball he kicks in my direction.

All the other adults are inside but here I am, Ms. Christy and Mama, following and helping.

But listening and playing too.

We are at Elias' first birthday party. First, I say, because we are not friends with this family. Serenity is in Elias's second grade classroom and she invited him. I don't know if she invited the whole class, I assume she did-- but I could be wrong, because he is one of only three to make it.

Elias talked about it all week. Counted down the days till Thursday. "I'm going to Serenity's party!"

"Serenity invited me to her house!"

"I'm going to Serenity's party!"

"Mr. Fred!" he called today toward the Noon Duty who covers his classroom during lunch. "I'm going to Serenity's birthday party!"

I glanced at Serenity, who shrugged and smiled into her milk. "He's a little excited." I said.

And truthfully, I wasn't.

I mean, I was excited that he was invited but nervous for all that could go wrong. Social situations and special needs children do not always mix. Anxiety arrives with every opportunity. At least for me, as I project and worry and hope that we won't regret saying yes. I wish for the ease of inclusion: Just another kid celebrating life.

Before we left for the party Nick and I prepped Elias "When its time to go what are you going to say?"

"Ok," Elias answered, familiar with this script rehearsal.

"Ok."

"And if a younger kid takes your toy what are you going to do?" Nick asked.

Elias looked down.

"You say that's ok, you can play with it."

"But what if there aren't any younger kids?" Elias asked.

You are going to share and you are going to listen Nick and I said in all kinds of ways as if our words could control unknown circumstances. 

But despite my worry, there was no way I wasn't going to go. Not with how excited Elias was to be invited.

"I'm going to Serenity's party!"

"Serenity invited me to her birthday party!!!"

Happy Birthday to you...

Serenity blows out her 8 candles and the kids crowd around the table waiting for cake. Elias and I share a seat. The same second grade girl who invited me to her house, who follows me around at recess every day and even calls herself my shadow, comes over to lean against me. "Do you want to share this seat with Elias?" I ask.

"Sure," Ellie says.

"Yay! Ellie and I are sitting together!" Elias beams.  "I love this."

I love this.

And they eat cake together, Elias and Ellie, both getting blue frosting on their face, neither one noticing or caring enough to wipe it off.

As the party winds down I tell Elias, "Its almost time to go."

"Ok," he says.

O.K.