Two autistic children have died in the last week. They’ve gotten away from the safety of their homes and families, and they’ve drowned. I don’t think a single autism parent can hear or read those stories, and the hundreds like them, and not feel a spasm in their heart and gut.
I haven’t written in a while; my voice is occupied in daily life, and I don’t feel the need – the great weight – to write like I used to. But the voice came alive tonight. The autism community has come together to mourn these sweet babies, and to protect their families.
Judgement is easy, when you don’t understand.
O used to have an elopement problem. If you don’t speak autism, he didn’t randomly propose to people; “elopement” in the autism world means he tends to wander off, quickly and quietly. He was far less verbal (ok, mostly non-verbal), and we lived on an acre of land in Michigan. A pond backed up against the (non-fenced) yard of our rent house, separated only by a slim dirty road.
Did I mention he was obsessed with water?
Did I mention that he rarely slept?
Did I mention that he could get out of any door in the house?
Did I mention that he didn’t (and still doesn’t) have any sense of danger or fear?
Did I mention that he wouldn’t respond to his name?
After both losing him (once at the park, and once in the yard, where both times in 45 seconds he was gone, and we were panicked and sobbing until we found him), S and I did some research and found sleeping tents for autistic children. My husband, the problem-solver, built our own tent that we secured from the outside. In the dark, we timed getting O out. We timed carrying the tent down the stairs with him in it.
We did all we knew to do to keep him safe.
Imagine how it felt to hear the whispers of others (and some of their loud posts) via social media, criticizing the choice we made to keep O safe. If you can’t imagine it, let me explain it for you: it was hell. Most people were supportive, but the ones who commented on our choices – the ones who had no idea – I can still see and hear their words. I actually cried about it just recently, the hurt welling up again from a place where I’d thought I’d put it to die.
Now, since we discovered melatonin, O sleeps; ergo, we sleep. But we still have extra locks on the doors, ones he cannot reach. Steve explained to our sitter’s friend the other night that the safety lock (like you’d see in a hotel) wasn’t to keep people out; it was to keep O in. We marvel over the boy who sleeps in his Lightning McQueen bed, all night long.
The boy who would still wander off in a second.
The boy who we would die to protect.
The boy who, just the other day, we considered buying a tracking device for. Yeah, you read that right; a tracking device.
It’s easy to judge when you don’t know. And these parents, whose precious babies are now gone? They need our love. They need our support and understanding. And while I agree with my friend Jess who spoke today of the need to find a balance between dignity and safety, I’m not sure where that balance is. Did we possibly rob our (then three-year-old) son of some dignity? Yeah, maybe. But he was three; I doubt he’ll have to see a therapist for that. Probably for other stuff, but not for the tent with all his toys, where we sang songs and said prayers.
But he’s still alive to cuddle tonight, because we made choices that are easy to judge.
And we cannot – WE CANNOT – judge the parents of those sweet angels who have gone ahead.
Because it could be my sunshiny boy.
And I’m not willing to go there.
On Friday, as news of the Connecticut school shootings unfurled, I walked back to a room full of seventh graders. Fresh-faced rabble-rousers, ready to watch the film version of the novel we’d just finished reading.
They saw my face. And one asked, “Mrs. K, are you ok?”
How do you respond to that? I told them honestly that I wasn’t.
I sat and watched them as they watched the movie. Their rapt expressions, their carefully (or less carefully) coiffed hairdos and meticulously chosen shoes. Their binders with artwork, and notes about Justin Bieber, and heads full of Christmas presents and tweenage gossip. Hearts full of love and promise.
And I felt it settle upon my shoulders, this invisible burden. The mantle that is the crushing weight of my responsibility.
These children are my children. My own children were miles away in a day care center and a school. Their teachers, I knew, were feeling the same yoke lowering onto their necks. The one that we willingly take upon ourselves. I teach them from books, and I try and teach them to be good people. I laugh with them, and sometimes I cry with them. Sometimes, I shake my head because of them, and sometimes they make me so frustrated that I want to crawl into bed and hide for a day.
But beyond that, I have an essential responsibility to keep them alive. I would stand in front of someone – anyone – that tried to harm these children. Because that is what we do. We take these children into our hearts and our classrooms with a solemn promise to do right by them. And if someone tries to go against that?
They’ll have to get by me first.
And I’m pretty formidable, if I do say so myself.
This is our first task – caring for our children. It’s our first job. If we don’t get that right, we don’t get anything right. That’s how, as a society, we will be judged. – President Barack Obama
This morning, the kids were abuzz with news of the shooting. I held up my hand, and said that I would say the following, and that we would then say no more.
I will do whatever is in my power to keep you safe. You are safe with me. Every teacher in this school, and every principal, every aide and every other adult – we will protect you. You don’t need to be afraid. I will protect each and every one of you – even when you drive me crazy. Because that’s my job.
And I watched them relax. And even though there are things to fear, and there are very real monsters out there – my room was mine again. It didn’t belong to fear – it belonged to learning, and the promise of midterms and Christmas and laughter and telling that one kid one more time to please for the love of Walt Disney stop talking.
I wear the mantle willingly. I never thought about it before I became a teacher, really, but now I am a teacher. And a parent. And I will do whatever it takes to keep them safe.
Because that is the crushing weight of responsibility.
we interrupt the usual posts to bring you…one on food.
I recently posted on a friend’s Facebook page that I had a craving for something called Frog Eye Salad.
I know. It sounds disgusting, doesn’t it?
When I was a teaching assistant in college, the secretary for the department I worked for made this salad. And somehow, a little container always showed up for me! I didn’t know how I was so lucky – I knew that I wasn’t her favorite, by far – but somehow, that container of deliciousness kept me sustained through the holiday season, far from home.
I’m pretty sure it’s a Utah thing, as I’d never heard of it before, and I’ve not encountered it since outside of Mormon functions. That said, I think there will be some frog eye salad in my future.
I searched for a recipe online and found one, courtesy of a blog called The Saturday Evening Pot. So, here you go:
Frog Eye Salad
- 1 cup sugar
- 2 tablespoons flour
- 1 teaspoon salt
- 1 3/4 cups pineapple juice (use from juice reserved from pineapples)
- 2 eggs, beaten
- 1 16-ounce package acini de pepe
- 2 11-ounce cans mandarin oranges, drained
- 1 20-ounce can crushed pineapple, drain and reserve juice
- 2 20-ounce cans pineapple chunks, drain and reserve juice
- 1 9-ounce carton whipped cream
- marshmallows, coconut – optional (we did not use)
- Combine sugar and flour and gradually stir in pineapple juice and eggs.
- Cook over moderate heat, stirring until thickened.
- Add lemon juice and cool mixture to room temperature.
- Cook acini de pepe according to package instructions. Drain, rinse, and cool to room temperature.
- Add egg mixture, mix lightly, and store in air tight container in refrigerator.
- Add remaining ingredients prior to serving. May be kept several days in refrigerator ahead of time.
I’ve been quiet lately. Life is good, and sometimes, the voice is silent because it doesn’t need to speak – and because the speaker may be too busy to draw breath!
O’s favorite song is “Life Could Be a Dream (Sh-Boom)” from the Cars soundtrack. When we get into the car, both kids ask for “Cars Music,” but O’s sweet little voice can be heard singing along as best as he can.
Sometimes, he even gets all the words out correctly.
As I drove today, I listened to the words and realized they were a perfect metaphor for my life with my family:
Life could be a dream.
If only all my precious plans would come true;
If you would let me spend my whole life loving you
Life could be a dream, sweetheart.
I drive, knowing that life is good. And busy. And peaceful, recent small issues notwithstanding (that shall not be discussed at present). We’ve just left McDonald’s and Target. O is snorting at a box of Angry Birds toys in the backseat; Mimi has chosen a pumpkin knife and fork set as her “prize.” It’s gently raining, and there’s not a thing to do on my radar.
Life could definitely be a dream.
The music begins to swell toward the song’s climax, and I hear O chime in loudly, “Ohhhhh….”
Life could be a dream
If I could take you up in paradise up above;
If you would tell me I’m the only one that you love
Life could be a dream, sweetheart.
And my heart is full. I have two beautiful children, both of whom amaze me every day – my son with his growth and his heart, and my daughter with her strength of will and her kindness. He teaches her, and she teaches him, and they both teach me and S every day. I have a wonderful job with kind, generous, helpful coworkers. I have awesome friends, a snug house, and a generous God who reminds me everyday of His love for me.
Life could be a dream? Life is a dream, more like.
The names I go by? Mommy. Mama. Mom (pretty new, courtesy of my son).
Oh, and Molly. Yep, you read that right. The other day (a terrible one for O), he refused to call me any of the above terms of endearment. I was, instead, Molly. And he screamed it all morning long.
MOLLY!!! DO YOU NO UNDERSTAND?! MOLLY!! IT DOESN’T LOOK GOOD!! MOLLY!! BIG TROUBLE!! MOLLY!!! DO YOU WANT A WALMART? EH EH EH??
(I have Thomas the Train, Spongebob, and Cars to thank for most of these lines. “Do you want” is O’s phrasing for what HE wants. I did NOT want a Walmart at that point, or a Target, or anywhere involving other humans.)
Oh, Mommy Love.
My husband used to be the preferred parent, and it broke my heart. But I’ve been the primary caregiver for the better part of the last three years. As any parent knows, parenting is a 24/7 job, and I’m no different. Nearly every night, at least one child – and usually, both – land in my bed. If you’re counting, that’s two tall adults and two small children in a king sized bed.
Three of the four? Yeah, they are all on one half of the bed. And two of the three have to be touching the third. AT ALL TIMES.
Last night (this morning, actually), I couldn’t take it anymore. I’d had a headache for three days from sleeping in what could only be termed a “toothpick position,” except for one arm around the boy who craved contact and the other trying to support my head. I got milk for the smaller child (who was running a temperature) and told the Mister that I was going to the guest bedroom.
Less than an hour later, I hear a door open and a crying MB. “Mama?? Maaammaaaaaa?!”
I had three choices: hide under the bed (painful, as it’s an IKEA bed, and quite low to the ground), play dead (possibly troubling to a sick two year old), or surrender. I thought about these choices for a good 90 seconds. I was exhausted and in pain.
I opened my mouth and, in a stage whisper, gave myself up. And she came running. She climbed into bed, her little body warmer than it should be, and curled up next to me.
Mommy. I miss you.
The same words I say to both children every time I pick them up from school, or Primary, or come home from an outing.
I missed you soooo much, baby.
An hour later, the other child came into the room on the tips of his toes, as is common.
Do you want a snuggle?
Sure, why not?
This morning, my husband rolled over in bed as I went to grab something from the master bathroom.
Are you tired?
Exhausted, thank you.
Those kids sure do love you. They looked at me like I was nobody last night. They only wanted you.
As I write this, I have a small toddler clinging to my legs, screaming. It’s good to be Queen.
I am an ESL certified teacher. What this means is that I am certified by the State in data-proven methods to instruct students who are learning English as a second language.
What I learn, on a regular basis, is that I know very little. And to be an effective facilitator of learning, I must be willing to be taught as well.
Ollie couldn’t sleep tonight. I came home from the store to a cacophony of sounds and scripts spewing forth.
Mama, are you feewing oh-be-kay?
Yes, Ollie, are you feeling okay? (Or, as I like to think of it, “And also with you.”)
I good. Fank you fo’ asking.
It became apparent that a change of environment was the best solution. We first left the house itself, stepping into the humid night air.
Wook at stars! It’s so bee-yoo-tee-ful!
He says the last phrase the same every time something is pronounced beautiful, with the exact ups and downs in tone and pauses between syllables with which he takes great poetic license. But always the same choices. Because they aren’t choices at all for him. They are the script.
We sit down on the first step and look up, practicing our WH questions. Where is the cloud, what color is the cloud (blue – nice try), etc. We then agree that we should go for a ride.
As we pull into Chick-Fil-A, I silently thank whatever parents contributed to sweet young folks who don’t judge me when I order a cookie sundae with extra cookie (mine) and a small fry (Ollie’s). Who don’t bat an eyelash at the toddler in the back seat, wired beyond belief, singing “OW-SIDE VOY. BEE AN WOUD” (outside voice, big and loud) at the top of his small lungs.
Nothing to see here.
We drive, and I continue my conversation with Ollie, asking him this and that. The answers are, of course, of questionable validity.
But then, it hits me.
Are the fries good? I ask.
Yes, it is.
It dawns on me. O is an English Language Learner. At nearly five, he is learning the basics of a language that is not his chosen method of communication, but he realizes that words have power and purpose. So he agrees to play by the rules.
Ollie spent ESY this summer in an ESL Pre-K program, which may seem strange to some folks, but it was an amazing blessing for him. The intensive focus on language coupled with the volume of typical peer models was nothing short of miraculous for him. And since ESY ended, he’s become noticeably frazzled. But he continues to push forward with words. Real ones, and scripted ones, and both have their place for him. The real ones are steps into the darkness of communication that he isn’t yet comfortable with; they are brave, and we reward even failed attempts with praise. The scripts and repetitive sounds offer comfort when there isn’t structure; they are like a blanket of sound for times of stress.
Ollie is an English Language Learner. He belongs in an ESL program, because spoken word is not his primary language. And I’m not sure that English is, either. And that’s totally acceptable. Because I can be a learner of whatever language he speaks.
I can cross that bridge.
I can learn, too.
I’ve not always been afraid of flying.
A terrifying roller-coaster of a trip in college sent me into a tailspin (pun intended). And while I can now fly without medication (or without sobbing into my friends’ laps), it’s never easy. There are always the sweaty palms, the pounding heart, and the surrender of control as we pass the point of no return, and the wheels leave the pavement. At that point, I’m typically fine, as long as the air is clear.
But the clouds…
One cannot see in clouds in a plane, and if you’re already panicked, the feeling of blindness is extra-terrifying. I feel that I’m suffocating, that I’m on a collision course for who knows what. I can’t tell if we’re going up or down. Every second is a minute, and every minute stretches into an eternity of fear so tangible that I can taste it.
And then, we rise above the clouds. The sun is shining. The sky is a brilliant blue.
And those harbingers of doom below us? Nothing more now than fluffy white cotton.
And I finally exhale.
I haven’t written for months. MONTHS. Part of that had to do with a very difficult move and my husband starting a time-consuming job. We lived at my mother’s house for a week, then a hotel for nearly two, and finally moved into the house, where we ripped up floor and painted, and are still living out of boxes.
But just before we left, I felt that I’d risen above the clouds, in a manner of speaking. O has just passed the two year mark from diagnosis. I’d sat in my 5th IEP meeting in two years (and I’d have numbers 6 and 7 after the move!), and things had gone well. I saw my son as my son, not as what was on paper. I recognize his amazing and numerous strengths, as well as his deficits. We were in clear air.
We still are in clear air.
I recently told my nephew that writing foryourself was different than writing for a teacher or a boss. You found that stories to be told fought to get out, and you would write swiftly and without regard for form or fashion until every word was on the paper.
And then you’d need a cool beverage.
It’s not that there haven’t been stories to tell – they just haven’t fought to get out.
But don’t you worry.
Here I am.
Welcome back to The Writing Life.