So when Elias was a baby, I survived under the fairytale of "catching up by the time he was two."
When two came and went, and I knew he would always be visually impaired and may also have CP, I created an image of him compensating so well that he blended with the other kids.
"Oh yeah Elias, he's the kid who runs a little funny but he can still play..."
"Oh wow, I didn't know he had CP!?"
And then he started talking. And using language differently. I first wondered, at age 3, if he was somewhere on the Autism Spectrum; but due to all the complications as a result of his premature birth, the specialists were hesitant to put another label on a boy already swaddled with so many medical terms.
And yet this is now the area--social communication--in which I find him falling farther and farther behind. This is what makes him stand out on the playground. Sure the kids notice his blue canes or black pole first. They stare at the blond kid who doesn't make eye contact with them. But then he doesn't say, "Hi." Or acknowledge their presence. Or he gets way too close to their face and asks, "What's your house number?" Or he repeats their exclamations with an enthusaistic chorus even though he missed the context for their speech.
And it is this. Not his impaired balance or mobility. Not the fact that his vision will never let him drive. But this misfiring of communication that swallows me whole sometimes.
I see the way children who have known him are starting to pull away. To look at him with wrinkled noses and rolled eyes. The way he stands alone at recess, or follows me around the house and yard now that it summer, unable to create his own form of play.
"What is Olive doing?" he asks constantly as she pretends to feed her bears or put her dolls down for a nap.
"She's playing."
She's pretending. She's using her imagination. Elias watches and imitates her actions without the story to sustain the play.
As I write, Elias and Olive sit in the living-room watching Sesame Street. Before Olive, he never would have watched a program on TV. He's learning to process what he sees. What meaning does his mind make of Elmo and Big Bird? I think he's drawn to the letters and numbers whereas Olive responds to the characters. My eight-year-old boy who loves maps and elevators, but rarely say sorry or thank you without prompting. He sits in a diaper, unembarrassed, undaunted, as Olive rushes past him to "pee in the potty."
I know my children will learn from each other.
But what...?
Posted at 10:13 AM | Permalink | Comments (4) | TrackBack (0)
Technorati Tags: autism, autism_spectrum_disorder, cerebral_palsy, CP, visual_impairment
And light.
And I haven't been on the computer for days.
Soil fills my fingernails. My hands feel like sandpaper. There's dirt on my pants. And I've been wearing the same Taft sweatshirt for the past three days.
Summer vacation.
Gotta love it.
The only gliche is, this sweet child...
...rarely looks like this...
...until its way too late.
Sigh...
Good night.
Posted at 10:20 PM | Permalink | Comments (6) | TrackBack (0)
Friday night and I'm home alone.
I have an orientation class this weekend for a summer program that sends urban educators to rural villages for Alaska Native culture camps-- so Nick took the kids to Palmer to spend the night with his parents.
I hope to find out tomorrow where and when I'm going. And for how long. Its possible that I could be out of cell contact with my family for up to two weeks.
That's a long time to be away, let alone unable to talk about the details of our days. I currently walk home for lunch every day to see Nick, and Olive, if she's not napping. And I still sometimes check-in with Nick part-way through the morning.
Nick is my sounding board and stabilizer. I'm lonely tonight without him. A week or more will be long. And yet I am so honored to be accepted into the Educator Cross-Cultural Immersion Program. To visit rural Alaska and life beyond roads.
Tonight in class we had to do a quick-write about our own culture. Here is what I wrote:
"I am the daughter of Oliver Everett and Susan Heath. Born in Waterbury CT and raised within the campus of a college preparatory boarding school. A faculty child known as a fac-brat. As children we ate our meals in the dining hall alongside students who flew to our home from places all over the world to receive a top-notch education. I knew the cooks and the cleaning ladies and the grounds crew and played Kick the Can with the Headmaster's daughter.
My mother was also born in CT and my father in NY and our ancestors can be traced back to the pilgrims. We came from England and France and Scotland and Cuba and according to my Great Uncle the Blackfoot Tribe. My grandmother would say its not true, "We didn't have any Indian blood." But that comes from the times that raised her. The culture of debutant balls and cocktail hour and segregated train rides to NYC.
I'm a New England girl whose father chose not to follow his father's footsteps to Wall Street and instead became a teacher. Originally called to the profession as a way to get ot of Vietnam he stayed for 31 years, taught history and coached lacrosse and ice hockey and spent his summers playing with his kids on the beaches of Cape Cod. I am a younger sister to an older brother, Andrew, and spent much of my life trying to prove that I can do it too or I'm not like you, both chasing his shadow and forging my own trail.
We are active people, competitive but community-oriented. My childhood home was always filled with neighbors and kids, all educators and faculty children like me, or students who claimed my parents as surrogates, confiding in them in ways that I could not. Not until later, when I had time away, in college and beyond and finally saw how lucky I was to be raised by Jol and Sue. A couple even more passionately committed to each other now in their late 60's as they were on their wedding day at 20 and 22. My parents always put their relationship first, pulled their oxygen masks down before reaching for ours, and by doing so modeled a loving relationship that has shaped me more than they know..."
And now I don't only miss Nick but I miss my Mom and Dad, my brother, and all my old friends from back East.
Happy Friday Everyone.
Posted at 11:32 PM | Permalink | Comments (7) | TrackBack (0)
Olive squats next to me and digs her hands in the dirt.
She stands naked in the kitchen,
swings at a block with a hockey stick.
She demands, "No! red bike!"
And pulls the too-big two-wheeler out of the garage.
I follow her with her trike.
"No! Red bike!"
She hikes her leg over the seat as I strap on her helmet.
With my arms spread, in an attempt to surround her, I watch
as she learns to peddle.
My baby.
Biking down the road.
Its possible.
And probable.
Our children will leave.
They will push and pull,
till they reach that bend.
Posted at 09:46 PM | Permalink | Comments (5) | TrackBack (0)
Posted at 05:03 PM | Permalink | Comments (4) | TrackBack (0)
An Anchorage Mom ran over her one-year-old child when she backed out of her driveway yesterday. Paramedics couldn't save the little girl.
Who will save the mother?
A younger me might have judged this woman: "How could she not see her own child?" "Who lets a one-year-old run free in the driveway?" "Was the mother driving too fast?" "Was she on something?"
Now I just want to hug this woman and let her howl. I can only imagine the depth of her grief.
Her desire to redo a moment.
It could have just as easily been me in that driver's seat, reversing the car, assuming my baby girl remained inside the house with my family.
I can also put myself in that small home and not see the toddler follow her older siblings out the door.
Gone.
Just like that.
Last week, as our family hung out in the back yard, Olive escaped through the gate and was two houses down at our friends' door before we noticed she was no longer by our side. Nick and I got caught up in a conversation for a minute.
Just a minute.
When Elias was about four, he and I walked to a school playground early on a Saturday morning. It was spring in Alaska, so we wore coats and hats, but enjoyed the sunshine and almost fifty degree weather. A toddler in a t-shirt and diaper, no pants or shoes, played by himself on the equipment. I didn't see a parent or guardian anywhere in sight. The boy gravitated towards us and smiled. I smiled back. And though he seemed to understand some of my questions-- "Where do you live?" "Where's your Mom or Dad?"--I couldn't understand his answers.
After an hour, I didn't want to leave the boy, but I needed to go home. He followed us down the sidewalk. Luckily, I ran into a neighbor with a cell phone and we called the police. A squad car met us at the corner and just as I was telling the officer where I found the boy, a woman came running down the street.
She had been sleeping and woke to found his bed empty, the door open.
I'd like to say that I empathised with the mother; but because Elias was such a different kid, I didnt really get it. I judged her as a parent. Negligent, I thought.
Not now.
Where does this need to judge come from? Why do we claim to know more than the woman in the news?
Even before I became a parent, I was convinced I could do so much better than the generations before me. I held myself high above the Moms and Dads who publicly "failed". Stoned for their mistakes. The letter F tattooed to their foreheads. Isolated. Abandoned. Reviled.
And yet parenthood is a tragic accident waiting to happen. We all forget to look at times. We close our eyes. Glance the other way.
I remember Eric Clapton's open window and how no amount of money and fame could protect his two-year-old from finding it. It doesnt matter if you live in a trailer or a mansion, life is dangerous on the edges. And everywhere in between.
Sometimes I think we judge others as a way to pretend we are safe. If I can find fault with you than this couldn't happen to me. Its our mirage of control. Our smokescreen of protection.
As if...
Posted at 05:25 PM | Permalink | Comments (17) | TrackBack (0)
Elias came crashing into our room early this morning. He stumbled around the bed to my side and crawled in next to his Mama. Within seconds his body grew heavy as his head snuggled against my chest. I put my arms around him and held my eight-year-old boy to my heart.
Rewind twelve hours.
Elias grunts like a rhino and swings his arm at my face. He lowers his head and charges as he cries.
"Elias, I see a boy trying to hit his Mom. Do you want to hurt me?"
He lifts his tear-streaked face towards mine. "No."
"Are you frustrated?"
"Yeah, I want that white chair!" He refers to a small plastic Adirondack chair that Nick bought for Olive, too small for Elias, but novel and desired by the boy who just wants what he wants, regardless of diplomacy or reason; willing to engage any and all tactics-- chasing, pushing, hitting, face-squeezing, head-butting-- to claim his prize.
In these moments if I try to rationalize, he'll contradict anything I say.
"It hurts me when you hit me."
"No! No it doesn't hurt."
"Elias you are too big for that chair."
"No, I'm not too big."
"Maybe you could try asking her for a turn if you want to try it out, instead of chasing her."
"I'm chasing her!"
We use to be able to distract Elias easier from these war paths. Redirect him to more peaceful pursuits. But lately he seems to grow more fixated, as he simultaneously grows bigger and stronger.
This worries me. Worries me like cancer cells, nuclear proliferation, and rising oceans. What does the future hold?
When he is 15 will I still find solace in early morning snuggles? Will he ever understand the affects of his actions on others? Will his world expand from "me" "mine" to "ours".
Later in the evening, after Olive let him sit in the white chair, where he stayed for less than a minute before choosing to carry it around in mock ownership as she moved on to more creative pursuits, Elias and I sat on the couch, shoulders touching. I felt his forehead for signs of a fever. "Did something happen at school today?" I asked, probing for a cause to explain his ornery behavior. Could it be the long days of keeping up with his able-body peers? Is the kid in his class who always yells and cries taking his emotional angst out on my son? (He can be mean to Elias, some girls told me once. He's mean to everyone, his teacher responded.) Did something happen that he doesn't have the words to explain?
Or is this just Elias?
As I write, he's still asleep in my bed. A picture of innocence. Lush lashes protecting eyes, glacier-blue. His father's and grandmother's. High cheek-bones and red lips shaped like mine. A genetic mix of Jordans and Everetts from the Mayflower and beyond.
The sun has finally summitted the mountains and will soon grace his precious face, stirring him from dreams only he knows.
Posted at 07:24 AM | Permalink | Comments (8) | TrackBack (0)
We switched Olive from a crib to a toddler bed this week and she seems to be enjoying her new-found freedom at the expense of our kid-less down time.
The first night she arrived in our room wearing her cousin Tess's hand-me-down tutu.
On Wednesday night she escaped fifteen times. Twice into her brother's room, tiptoeing with a pair of sneakers in her hand. She found me in the kitchen another time and smiled up at me with two pacifiers in her mouth. On the tenth attempt she put her plastic riding horse Rody in her bed, as if she was trying to fake me out: See Mom, I'm sleeping, really, I swear.
Tonight Nick put a gate across the door and when I just checked on her after hearing what sounded like pacifiers skidding across the wood floor, she stood behind the plastic gate, fully naked. "Oh no," she said, "Offif stuck!" Olive stuck.
Exactly.
Happy Friday!
Posted at 09:49 PM | Permalink | Comments (5) | TrackBack (0)