Following Elias

Birthday Girl, Cape Cod, and the Return of the Light

Olive turned six on December 18th and after cake and presents we packed up for the airport where we took a red-eye flight to Boston. Olive wore her new Santa dress, a gift from Elias, on the plane, much to the delight of our fellow travelers.

(Sorry, can't rotate pictures on this computer)

We are now on Cape Cod, with my Mom and Dad, who the kids prefer over Nick and me, which is a gift within itself.

In this picture Elias walks ahead of the rest of us with his beloved Papa:

We ate fresh oysters the night we arrived and the following day one of my oldest friends Cat came to visit.

This afternoon, Nick and I ran together on the beach and through the woods, instead of taking turns as we do at home,  and as I write this short post neither child has called out for MOM.

Happy Solstice All!

Fun with Asessments

It's that time of year, when we get called to fill in a thousand bubbles to dissect our son into labels that work for the school district and the state but never actually capture Elias.

Nick and I sit at the kitchen table answering multiple choice questions with answers such as, never, sometimes, often, always, or not true at all, just a little true, somewhat true, or always true, and I find myself wanting to scream: "It all depends!"

Depends on the day, on the situation, on our response, on whether he ate two smoked salmon tacos for breakfast or if his sister is in the house.

My son is not a box.

So I just couldn't refrain from writing my own response to a couple of the questions:

An angel, really!? This is a question on a standardized assessment?

Since when do children sprout wings?

And by the way, this would worry me more than his struggle to complete hard tasks.

And yes, that is a canning jar of red wine in my hand:

How else would I get through all these tests?

Tag: You're It

I found out the game of "Tell-Elias-to-Chase-Kids" happened again.

So I spoke to Elias about it while I gave him a bath:

"Hey Bud, did you play tag again at recess today?"

"Yeah." He looks at the water.

"Do you know that in tag one person is 'It' until they tag someone else in the game and then that person is It."

"But I was it the whole time!?" He puts his hands out by his side the way he does when situations and words don't match up.

"Well, thats not fair."

"I know." He looks beyond me, as if picturing the trees and the kids and running with his canes barely touching the snow and ice.

I mention a student's name and ask: "Was he telling you who to chase?"

"Yeah." Elias looks back down at his legs in the water.

"Well, Elias, in tag whoever's 'It' decides which player to chase.  No one can tell you what to do."

"Oh."

"And he was telling you to chase kids who weren't even playing." I put my hand on his chin and try to get my son to look at me. "Elias, If you come running after kids they may feel confused or upset, which could make you upset. It doesn't sound very fair. Or fun."

"No. Its not."

"Then you could tell them its not fair."

"I did. And they didn't listen." He says this in a tone that tells me he didn't actually say it.

"You can walk away. Stop playing."

"I did!" By his tone this is true. " But they followed after me."

At this point in our conversation, I want to sew a bubble around Elias and ban children from his sphere. I want those kids to know I see their shallow hearts, simmering reflections of a society that mocks our weakest ones. I want to cry. I want to run.

"Elias if they do that again you find me next time. And if I'm not out there, walk to the nearest adult."

"Ok." Elias says. Our eyes never see each other.

I wash my eleven-year-old son's hair, a task he still can't do alone.  When the water's almost drained, I hold out my hand to help him out of the tub. I dry off his curved back, broad shoulders, skinny legs, and for a second I see what the kids see.

"Mom, I'll go to a different school next year."

"You will. How do you feel about that?"

He holds onto the sink for balance and says, "I'll miss my friends."

"Yeah."

The thing he doesn't have: Friends. He tends to refer to all kids as his friends, even the ones who invited him to play "tag."

"But they're both 6th graders, too."

Both?

"Who are you thinking about?"

And right when I think he doesn't get it, that he's clueless about the social interactions of all the preteens around him, he names the two kids in his class who genuinely connect with him the most, kind quirky kids who appreciate Elias's humor and seem to accept his challenges. 

The closest he has to friends.

And I realize that underneath his short answers, brew layers upon layers of feelings and thoughts that may not appear in our conversation but stem from the content of our words. From his experiences. Theres a whole world there that I will never know.

Elias walks to his room, unsteady after a long day, but one foot in front of another, without the support of my hand or his canes. He gets into his pajamas, all on his own, and meets me at the purple couch for his two nightly chapters of Magic Tree House.

He sits beside me and wraps his right arm through mine, as he does every night, but I seek his touch more than normal this evening and rest my head against his.

"I love you Bud."

"I love you too, Mom," he says, softly, like a butterfly.

Mama Bear at Recess

I missed two days of recess, home sick with the cruds.

Honestly, I've been sick for almost a month now, as stress is keeping my immune system from recovering.

I remember reading that special needs parents have stress levels similar to combat vets. I don't know if this is true, but I do know that between my job as an elementary school counselor and my never-ending job as a Mom to two children, one of whom experiences multiple disabilities, I am pretty damn gripped this time of year.

So anyway, back to recess. On a typical day, Elias finds me on the soccer field at recess. And though he can’t keep up with the other kids, they graciously let him bring an extra ball onto the field and shoot at one of the goalies during our game, planting his canes beside the ball and awkwardly swinging his right leg.

At times, this set up gets messy, like when kids kick his ball out of the way or when he stands in front of the goalie during a corner kick or when the game ball hits him in the back of the head, but overall we've worked out a system where he feels included and the kids accept his presence on the field. The boys who play goalie often let his shots go in while feigning an attempt to block them and they will protect him and his ball when other players get confused. "Hey thats Elias's ball you just kicked off the field!"

Its hard at times being Mom and Counselor and Coach. The kids get frustrated with me when I miss a handball because I'm talking to Elias. He is not always safe with his body and canes when the crowd of kids chasing the ball get too close. I often worry he will hurt kids or get hurt himself.

But I've had some save-for-dark-day moments on the soccer field too. When both teams pause, slowing their aggressive fervor for a moment, to give Elias time to kick. When one of my players goes out of his way to check on my boy. They accept him and protect him and encourage him and for that I could take them all home and call them mine.

"What did you do at recess today?" I asked on Thursday, the day I spent home in bed with a migraine.

"It was different not having you there."

"I know. So what did you do?”

He told me a particular student asked him to play tag and when he said her name my hackles raised. She's an instigator. One who likes to set him off and then laugh from a distance.

He doesn't understand.

But I do.

So on Friday when he followed a couple of students to the tree area to play tag again, I left the soccer field to investigate. The boy who invited him over, another one I don’t trust, would whisper something to Elias and then he would run towards a girl who didn’t seem to be in the game and she would run away mock screaming and laughing. Elias would chase her for a bit and then the boy would tell him to chase someone else.

Run from the retard.

Some of the kids involved were kind hearted children who seem to generally enjoy Elias. Others not so much. I let it play out for a bit because my boy seemed happy but the pit in my stomach grew.

The Wednesday before Thanksgiving we had indoor recess and the principal got called to Elias’s classroom because he was hitting, grabbing, and choking kids in a full-on bull-in-a-china-shop melt down. I don’t know exactly what went down that day but I know it started with Elias chasing the two children who initiated this game of “tag.”

One of the nicer girls caught me watching and she kept nervously looking back at me. I tend to wear my emotions as outer gear and I might have had a dagger or two in these eyes of mine.

Elias ran around trying to tag children who all remained easily out of reach. The boy tells him to chase another girl not in the game. And she too screamed and sprinted away.

Flee from the freak.

I made my presence more known and now a number of the children stop and look at me. I’m not my normal smiling Ms. Christy.

“We’re playing tag,” the boy tells me.

“Don’t you usually change who’s it in tag?”

A sweet girl who wears a headscarf and knows a thing or two about discrimination says: “Yeah, its not fair to make him run so much. His legs are going to get tired.  I’ll be it.”

“I’m not playing anymore.” the male initiator announced, a boy at least twice Elias’s size.

Not fun when its fair, huh?

The blades of the daggers in my eyes grow sharper. “Elias, come here, lets take a walk.” My boy happily follows me back over towards the soccer field and before I can even think about what I want to say, I get called to the main building to meet with an upset parent.

I take a breath, wipe my eyes, trade my Mom hat for my Counselor one, and walk inside, with uncertain words left unsaid.

 

A Little Low

So I'm giving the world flowers and crawling in bed.