Following Elias

Ah... Alaska

Pictures from our trip to Seward, two weeks ago, the last nice weekend of the summer.

Every Day

“I don’t want to go to school,” Elias says every morning as he sits at the kitchen table eating half a sesame bagel with tons of butter.

And yet he walks out the back door to climb in the Chariot without complaint.

He opens the big glass door to Airport Heights Elementary all by himself and doesn’t hesitate as he walks in to say good morning to the office staff.

“I want to go home,” he says as he walks towards the Camp Fire classroom.

“At the end of the day we’ll go home,” I say. “We all have jobs to do.”

And we do.

Though how that looks is about to change.

Friday was Nick’s last day at Cook Inlet Tribal Council, the educational non-profit where he’s worked for the past seven and a half years. When Olive’s daycare officially closes on September 29th, instead of transitioning to a new facility or home, she’ll spend her days with her Daddy.

After circling this decision for weeks, Nick and I opted to cut expenses and gain family time.  To breathe a little easier in the mornings without trying to rush us all out the door to our various places of work.

So next time Elias stands in the hallway before school starts and says, “I want to go home,” I can’t respond with, “But nobody’s there.” Instead I’ll channel my inner cheerleader-- the one who almost auditioned for the cheer squad in eighth grade but opted to try out for the boys’ soccer team instead—and remind Elias of all the things he loves about school.

“But then you’d miss seeing your teacher and all your kids (he calls his classmates and fellow Camp Fire students “my kids”)… you’d miss recess and math and play time…”

Once the day begins he usually doesn’t want to leave. It’s the transitions that irk him, as most of us stumble over change.

He still sometimes resists his pull-outs, especially gym due to the noise level and chaos of two classes combined, preferring to remain in his comfortable classroom, but his resistance fades with the passing weeks.

The first few weeks the combination of his canes clicking along the laminate floor and his limited vision allowed me to easily hide from him. Once I ducked into the girls bathroom, as two third graders giggled, and waited until another teacher gave me the all-clear sign. But this past week when I ran into him he just smiled and said, “Hi Mom, what are you doing out of your office?” And then continued on his way.

At recess kids still ask me: What’s wrong with him? Did he break his leg? Why does he need those? But they seem to move on easily once I supply them with an answer they can hold.

They help him walk. His legs aren’t broken they just aren’t as strong as yours. He was just injured when he was a baby because he was so tiny when he was born that his body wasn’t quite ready to be here and so now he needs a little extra help to do some of the things that you can do.

“Is he better?” a girl asked me the other day when he ditched his canes to climb on the play equipment.

Ger still holds his canes, defending them from the other children’s curious hands, and Elias continues to do his own thing on the playground. Climbing up the stairs and going down the curly slide again and again. Kids whip past him playing chase, leaping onto the monkey bars, barreling down the slide.

“Other kids have a great time on the monkey bars,” Elias said to me the other night as he sat on my lap in the recliner. “Other kids can jump and swing but I can’t.” He said this while looking towards me, turning his head from side to side, his eyes never landing on mine.

Here we go….

“It’s just easier for them to control their bodies then it is for you to control yours. But they had to learn too.”

“When can I do it?”

“We’ll have to practice and learn.”

“When can we?”

Every day, Babe, every day.

I'm still here

I promise.

Its just been one of those weeks where the content of this blog has decided to hijack the author.

Mama, mama, Mommy, Mom!

Oh, and Ms. Christy, Ms. Christy, Ms. Christy, as the kids call me at school.

Full-time work as an elementary school counselor and two children, one who still doesn't sleep, makes for a frustrated Mama who desperately needs to carve out time to capture her words.

But tonight the couch calls.

It will get easier.

I will find the time.

Mama, mama, mommy,  mom!

Ugh, its ironic that I crave time away from my children so I can write about them.

Time: one of the strange contradictions of a special needs Mama's blog.

And of the sleep-deprived mother of a healthy nine-month baby who still wakes up every three hours or less at night to interrupt any coherent thoughts I might muster.

Oy, miss you all.

Night night.

9 Months Tomorrow

Happy Friday!!!!

When Friendship Trumps the Power of Guns

Even though I had to remind Ger that Elias's canes weren't to be used as guns, not once but three times during our short recess, I let him keep holding Elias's blue forearm crutches.

Why?

Well...

Because when I first discovered him with them and asked, "What are you doing with those?"

Ger replied, "I'm holding them for my friend."

So yeah, I let a little mock shooting slide.  He called my boy his friend.

"I'm holding them for my friend."

Oh, I could eat his words I love them so.

And no sweetie, they aren't guns, but yes, you can hold them for Elias.

Any time.

Look Away

"Look at me when I'm talking to you!"

"Did you see the way he looked at you, oohhh girl, I think he likes you."

"What's that look for?"

"Our eyes met..."

"I gave her the stink eye."

"Every teacher should have a look..."

To gaze, to gawk, to wink, to stare,

To see.

Thinking about eye contact tonight.

About Olive and Elias.

Olive observes me through the kitchen window, locks her eyes on mine, and smiles with her whole squeezable face. She watches me wherever I go. Olive beckons with her eyes, like magnets, creating a connection from across the room.

Not Elias.

Elias looks at the floor when we talk about how we love each other all the way to Cape Cod and back. Glimpses of eye contact, like the flap of an eagle's wing, pass between us.

We talk without looking at each other.

Try it.

Every time you communicate with your eyes, imagine not be able to connect with people in this way.

That's Elias. But he tries.

He understands the importance of eye contact, even though his brain struggles to communicate with the muscles that control his pupils.

The windows to his soul.

 

Oh but he has windows:

Pause

This morning I lay in bed with Elias on one side of me, Olive the other.

Nick gently shook my leg, "Time to get up."

I forced my tired eyes open and disentangled my arms from my children. Standing in the shower I wondered if I'll ever feel rested again.

Veggie sausage would be nice, I thought.

When I dressed and walked into the kitchen, Nick said, "There's veggie sausage cooked and half a sesame bagel when you're ready."

I kissed him on the cheek. "You read my mind. Thank you."

As I walked back into our makeshift bedroom, I heard Olive making her I-want-to-nurse noises as she tried to suckle her big brother's shoulder.

"You want to put your arm around me," Elias said with his eyes still closed, thinking his sister was his Mama.

I stood amidst the heat of my family smiling: They're gonna be OK, we're all gonna be OK...

Happy Friday!

Rage

That's the only word I can think of to describe Elias's outbursts the last two nights.

Even with our increased silly-time and onslaught of hell yeahs instead of dump-loads of not nows, the boy breaks down. For one, we cant say yes to everything, like running into the road in front of a car still deserves a firm NO.

Never going to bed is not an option either.

We can play more but there are still limits and rules and times when even Mommies need a break.

Yes, even Mommies.

The chosen one.

Tonight's meltdown started because he wanted me to put him to bed instead of Daddy.

Ever since his sister arrived he's been my little shadow with tentacles of need, pulling me towards him, full of fury and desire. And then there's Olive with her midnight cries. Her three a.m. fussy hour. Her refusal to sleep for more than a few hours at a time. And Elias who no longer falls asleep on his own but needs one of us to snuggle with him until his eyes close. I want Mommy to snuggle with me!

And well, it makes a girl tired.

Seeing Elias with is mean face on, crying and  practically growling as he reaches for someone to grab, well, it makes me fall apart a little at the seams.

What are we doing wrong?  Is it a phase? Are these the typical three-year-old tantrums we never saw or something deeper?

Oh the questions....

This summer my friend, who also has a boy almost Elias's age with special needs, came to visit and we sat in the living room talking as our kids didn't play.

'I've been meaning to ask you," she said as she gave her son a toy to chew, "How are you doing now that Elias is getting older?"

I thought about her son who doesn't have the cognition to recognize his name, or walk, despite his solid frame and Elias who has enough mobility and communication to explore his world but not enough to fit into it with ease...

But I couldn't really answer her question because Elias leaned against my knee and though he may not act as though he's paying attention, he hears and understands more than people realize. And then struggles to express what he thinks or feels.

(A recipe for rage maybe?)

What I would say to her now, is on rage-tinted days like these, it seems harder and scarier, almost, than those early days when we ran on cocktails of adrenaline and hope. When despite all the missed milestones we still had cute little kids.

A world of Good

At recess on Friday, I spied Elias starting to climb up a metal ladder to the slide platform. I walked over to spot him and a boy from his class looked at me and said, "He's got it."

"You're right," I said, "The mom in me still wants to keep him safe but he can do it."

The 1st grade boy, named Cic,  pointed to the other playground. "He can climb the monkey bars over there too!"

A little later Cic asked Elias if he wanted to do the slide again. Elias leaned against his Aide and turned his head to the side without answering.

This wise little boy looked at me, smiled, and said, "He's thinking."

Elias didn't choose to keep playing with Cic, he wanted to go to the "little playground" instead; but overhearing the invitation did me a world of good.

And we all need a world of good.

Elias still stops at the door to Airport Heights on most mornings and says, "I don't want to go to school."

Some days it takes multiple staff members to entice and distract him down the hallway to his classroom.

When I drop him off at Camp Fire for one of my morning meetings, he cries and tries to push his way past Ms. Myrna, who embraces him just how he is, and provides the perfect mixture of kindness and firmness to keep him safe from himself and the other children. With years of experience with special needs kids I couldn't ask for anyone better to greet him during his morning melt-downs.

On Thursday morning, I walked down the hall after a positive discipline meeting and heard Elias around the corner saying, "I want to see My Mommy!" I quickly ducked into the girl's bathroom and hid to the curious smiles of a couple of fourth grade girls.

This past Friday, he walked into school and up the steps to Camp Fire without a word of resistance.

And yesterday, Saturday, Elias made it through the whole day without a tear. He even played well with Olive:

I can't say that he is doing anything radically different, but rather that Nick and I are. After a particularly horrific night on Thursday, we decided that we were instigating Elias's anxiety due to our own overly high stress levels that started rising this past fall with our unexpected home sale, which led into the birth of his sister, a move across town this winter, months of colic through spring, and the rainiest summer in Anchorage's history with too many days of putting off play till later.

"Not now Elias, later..."

"We'll play in a little bit."

"We'll go for a walk later..."

A later that never seemed to come.

On Thursday night, after Elias finally fell asleep, Nick and I made a commitment to play more and worry less. Friday morning we greeted the day with silly enthusiasm which has carried us into Sunday.

"Let's be silly on the bed!" Elias says often.

Instead of: Not right now I need to finish the dishes. Or: Why don't you be silly in your room. I've vowed to say yes even if its a five-minute silly break between chores. Instead of pushing him away with a mountain of no's, I'm trying to toss him a warm pile of hell yeah's.

He hears stop, careful, gentle, uh-uh, and not now way too often, especially in relation to all his interactions with Olive as he hasn't yet figured out how to interact with her safely.

The boy deserves a few more Sure, OK, and Right On's.

Yes, Elias, yes! I'll play with you!

Not later but NOW!

Maybe saying yes will do us all a world of good.

The Things Elias Says

(Right now I could disown my son but instead of venting I'm going to focus on the positive because well, it's almost Friday.)

(And really I'd never disown him, but I can no longer judge parents who do.)

(We all have breaking points.)

In the buffet line at Glenna's wedding:

"What's you favorite fruit?" the woman behind us asks Elias.

"Cheese."

In bed last night as we snuggled:

Elias touches the top of my head, "Are you wearing your Mommy hat now?"

"Yes, I'm wearing my Mommy hat."

Earlier in the day I sat on a chair in front of his first grade class reading Todd Parr's book It's Okay to Be Different.

Elias sat in front of all the other kids and stroked my sandled foot as I read. He couldn't sit and snuggle with me. All the kids can't fit in my lap! I'd said the night before. I'm wearing my Ms. Christy hat when I visit your class.

His eyes roam my face and he touches his own soft hair, "I'm wearing my Elias hat too."

At home in the kitchen:

"I made you a gourmet cheese sandwich," Nick says handing him cheddar and mayo on whole wheat bread.

"You make the best gourmet cheese sandwiches Dad!"

The next day Nick hands him the same sandwich. Elias touches it and peers down close, "Is there gourmet in this?"

Standing before his class to present his picture of his selection for class pet:

Elias proudly pushes himself up from the floor, wobbles to the front, leans against his teacher, all smiles, holding a piece of paper with four purple dots. He pauses...

...grins, and says: "I got nothing."

And the class laughs with him.

Happy Friday Eve and Day !!!!!