Tuesday, January 31, 2012
I remember walking down the echoing staircases with Liz, the second most popular girl in our class. Her sister had Down syndrome. The teacher, who I later learned was named Marty, opened the door and gave us the kindest smile. Her hair was smooth and flipped up at the ends.
I remember children in wheelchairs and a water table. I didn't know then that my brother, in dire need of numerous therapies and a real plan (he wouldn't have an actual IEP for 5 more years), was allowed to play at the water table or in the sink for most of the day. I didn't see ineptitude or lack of knowledge at the time. I just felt happy to help. I wasn't ashamed. No one asked why were spending time with "those kids." It was just something Liz and I and some of the others did. I felt proud.
I don't know what changed. So many things changed, with time. I remember the day a few years later when I learned Marty, the teacher with the winning smile and a quiet love for everyone, had taken her own life. She had realized too late that she still wanted to live and called for help that was fruitless, in the end. My heart split in two. We moved away and I realized there were many people out there who were cruel, towards people with special needs and really anyone who dared to not fit exactly into the mold. The mold was always changing, anyway. And I kept trying to fit into it, to blend in and disappear and run from what I was, what my family was.
In high school, the special ed rooms were downstairs. I went to a huge high school. There must have been nearly 2,000 kids, and there were three levels, each with its own color scheme. The math and science rooms and blue halls on the third floor...green and yellow of the english/history/language arts rooms on the second floor...the the orange halls on the first. The shop rooms. Band. Gym. And those "special" classes that were right across from my locker.
I would see them, those kids growing into adults, shuffling in uneven lines, being led by tired teachers. Some of them seemed amazingly happy. Some hung their heads. Many appeared unaware. I would stand there, I with the brother with severe autism living at a residential school 90 miles away, I the Christian girl who knew the teachings of Jesus inside and out, and I would feel that awful feeling. You know the one? The one where you look away? You don't smile and look at certain people in the eye, acknowledging they are actual people. You kind of look through them but pretend you aren't. You don't really fool yourself, though.
I remember flipping through the pages of one of the school yearbooks and seeing pictures of the seniors. They'd published their addresses right below their pictures. And there, at the end of the color pictures, was a page of black and white head shots. The leftover pics, those kids that had been squeezed in at the last minute. Almost all of them seemed to be those with disabilities. And there were the addresses, printed beneath them.
How sad, I remember thinking. Who is ever going to want to contact them?
The first time we walked into the special ed room at Ethan's school, I was blinking back tears. They were talking too fast. We had just had the PPT where five "experts" had told me my son wasn't ready to be mainstreamed in a pre-K classroom. I wanted to run from this place with its cubbies and kids flapping their hands and muttering unintelligible things. I wanted to run from the fact that my child was one of those children.
But then something happened. Slowly. I spent a lot of time after school on the playground with Ethan. If we stayed long enough, the kids in the special ed class would come out. I came to learn the names that went with the kid who liked to blow spit bubbles...the one who would flap his hands and run with joy when he got outside...the one with dimples who called the teacher "daddy" and had the most beautiful golden curls.
I needed to see them as my child. I needed to see them as children, not as having deficits. The way I did back in fifth grade, splashing in the water with my brother. Laughing with that teacher with the kind eyes.
The kids in the special rooms have helped open my eyes, whether I like it or not, to those rooms in my own heart. We all have them: the dark and ugly places filled with the thoughts we don't like to admit to anyone that we think.
But we can renovate. We can clean out the muck. We can learn to think and see with different eyes, to love with the unabashed innocence of a child. I'm still so desperately in need of learning. But I thank Ethan that he's helped me to just a little bit more.
Friday, January 27, 2012
Today we returned to a different yet similar playgroup and a different school, the one Ethan will attend next year. We got started and I had trouble keeping my mouth from dropping to the floor. Ethan's response to playgroups in the last 15 months has markedly changed. He walked right in and asked, "Can I play?" Scooted right up to the circle. Answered when someone asked him his name and age. Sang along and did the hand movements. Completed the craft on his own and even shakily wrote his name on the back. I was simultaneously shocked and grateful.
Early this morning I'd peeked in on him because for several moments it had grown very, very quiet in his room. I found Ethan standing at the window, watching the cars go by. "There's a light on Mr. John's light!" he said, gazing next door. "Look!" It took me a moment, but I realized what he meant. Every time a car went by, the reflection of the headlights made a sudden brief flash on the glass of one of the outside lights on our neighbors' house.
"Here comes two cars!" Ethan announced, his eyes gleaming with anticipation. He giggled as the two flashes reflected again. "There it goes!" Looking at me, his face was lit up as if he'd just been promised a candy bar.
I thought of Ethan as a baby, smiling, saying not so much "mama" as "ite!" (light) and "fan!" These things brought him joy. This is the way his brain is wired. I am happy to share it with him.
I only wonder what will happen, the more time he spends with people who don't understand his quirks, who don't know that his mind works a little differently.
This is the double-edged sword of progress, I think, of being mainstreamed and spending time with people who don't immediately know his diagnosis. Not that I mean to decry progress. I'm overwhelming grateful for the strides he's made. Joyful beyond words. The one part though that threatens to split me in two is that that the more aware and connected to the rest of the world kids with autism become, likewise the more aware they may become of their differences...that people don't "get" them or are even mocking them...that they are misunderstood.
I stood there in Ethan's room this morning and thought of Ethan trying to tell another child about the reflections of light. I saw this imagined child confused and then condescending. I heard the insults, the taunting that may certainly drift Ethan's way. And I wondered how it was possible for my heart to feel broken about something that had yet to happen?
I feel us inching toward reality sometimes. Anna has been somewhat sheltered, in a small Christian school and small group of friends who are mostly kind and safe. Bullying has thankfully never touched my girl. And Ethan is still with me half a day...and then spends afternoons with an absolutely wonderful teaching staff and small group of little ones. But the day will come. The day will come.
I don't have the answers. I know I can't allow the future to cloud the present. Today all I can do is remind myself of something Beth Moore once said. She was questioning why some people are able to go through something completely horrific, like a cancer surgery, completely at peace, yet years later wonder why they are wracked with fear and have no peace, fearing the cancer will return.
"God gives you the grace when you need it, in that moment," she said. "He doesn't give it in advance for something that might happen." He doesn't rain it down just to quell all of our questioning, our pondering, our what ifs?.
That's what I can remind myself to do. Count my blessings with each stride. Live with feet firmly planted in Now, glancing only just far enough ahead to be able to make out the next step.
Monday, January 23, 2012
Dory: He says it’s time to let go! Everything’s gonna be all right!
Marlin: How do you know!? How do you know something bad isn’t gonna happen?
Dory: I don’t!
- Finding Nemo
This weekend I had an opportunity to fly far, far away to a place I'd never been with people I'd never met. I'd been planning to attend this small conference with Beth Moore -- who has been a crucial spiritual influence in my life for a long time -- and women from all over the country for well over a year.
First I had to get there.
Here's the thing: I can be an airhead. I can be, well, blonde (I am blonde, after all!). And I have a tendency to let other people do things for me and to avoid tasks that are difficult or confusing. In the past, every time I've flown it's been with someone else, and I've let them figure out everything. Not only that, but I used to have a pretty major fear of flying; the type of fear in which I somehow believed that by keeping my eyes opened and fists gripping the armrest the entire flight, I was somehow preventing the plane from crashing.
The first step changed everything. I parked my car, found a shuttle and went through security without setting off any alarms. "Good job," the guard at the other end said to me for no discernible reason, except that God was giving me a wink.
I can do this, I thought, strengthened. It was a theme that echoed again and again over the next 48 hours. We sat on the tarmac and I watched them de-ice the wings. In the past I would have taken that as an opportunity to review every plane crash that had occurred during winter weather. I used to file these things away, you see. I'd read articles and watch the gory details on news stories and stock it all away as more proof that this world is really scary and bad things happen and how can God really be good?
In the air the sun was rising as we left home sprinkled with snow and soared over Long Island, with New York City glittering in the distance. We traced the coast south. I watched the trails of ships in the water and then the snow-like landscape of puffy clouds as we climbed beyond them. In Florida, I saw palm trees and green and then we were off again towards Texas.
I remembered the way my hands used to tense at any jolt, any bumpy bit of turbulence. I could feel the old habits try to come back, but subside. What had changed? What had changed in me?
I thought about my friend's old boyfriend back when we were in high school, the guy who was really into cross country running. One time we had gone out running with him and he had offered a critique. "Don't clench your fists when you run," he told us. "You'll stop the blood flowing. Keep your hands open."
Of course. I knew. I had lived a lot of my life with fists clenched, trying desperately to grasp hold of control, to hold on desperately to my will, my opinions about who God should or shouldn't be and what He should or shouldn't do. Hands held in the closed posture can never receive anything.
Not even grace. Or freedom from fear.
"Perfect love casts out fear." The verse made so much more sense to me now. If we believe that God is good and loving, and loves us, how can we fear what will happen to us? If we believe all things work together for good, how can we live in fear and torment about a plane crashing? A business failing? A bad report from the doctor?
I kept staring at my open hands, letting go.
And then we landed and I found a rental car and drove on strange highways and got a little lost and checked in at my hotel and talked to more strangers and found the massive church and met lots of ladies and realized all along, I had had it in me.
I guess I shouldn't have been that surprised when Beth Moore spoke about just that theme. About us knowing what to do but sometimes not doing it, and then losing ground in our walk with God. About the fact that most of us don't have a knowledge problem, but an obedience problem.
And some of us have a belief problem: that God is who He says He is...that God really loves...and that can cloud everything you know up in your head.
The worship leader, Travis Cottrell, got up on the stage Saturday morning and said, "I feel God wants to impart courage to many of you this weekend." Then he joked, "You don't want me to do my Cowardly Lion impression, do you?" And he did it, spot on, straight from The Wizard of Oz.
There it was again, that truth, just like in the story of Dorothy and her friends. They'd had the ability inside of them all along. They'd had the heart...the brain...the courage. They just had to believe and walk the thing out. Just like each and every one of us. Sometimes the walking (or flying) is the hardest part. But it's the only way to actually get anywhere.
Tuesday, January 17, 2012
Wednesday, January 11, 2012
"I come to groups like this for inspiration," she told us. When the beaurocracies weigh her down, when schools just don't get it, when advice falls on deaf ears, when she wonders if it's worth it, she likes to go and listen to the parents' voices. They remind her why she does what she does. They spur her on to keep fighting, keep doing everything she knows to do.
I mentioned something during the meeting about Ethan and the Windsor school system, and afterward we started chatting and this woman said, "I thought I recognized you. You have...Ethan, right?"
I stared at her blankly. I honestly didn't remember ever meeting this woman.
"We met a few times," she replied, not unkindly. I felt horrible. Usually I'm better at remembering people. My mind was drawing such a blank I honestly was wondering if she was mixing up Ethan with another kid. Yet she had named him when I hadn't said his name specifically during the meeting.
"I worked with Windsor to develop some programs back in January and February last year," she said. "I'll always remember Ethan." She smiled. "I still have a heart he gave me on Valentine's Day. I can still see him walking up to me and tugging on my sweater. Then he said my name in almost a whisper and handed the heart to me. It was so, so sweet."
I told her how Ethan was doing now. She was amazed. He's calling out to his teachers down the hall to say hi? Following around other kids and imitating them; playing chase on the playground? Yelling for people to 'Watch me!' She was incredulous. I marveled at how well they'd done with getting him just what he needed at school.
"You know, I work with nearly 50 school systems," she told me. "And the program they have going there is one of the best."
I drove home a little incredulous myself. She had come to hear us. She had come to listen. The world needs more educators like that. And to hear that by the grace of God we had ended up in the town with a public school system that no one's talking about (it's certainly not one of the best, by far, statewide), yet has a wonderful program that is just what Ethan needs, flooded me with gratitude.
Then it hit me like a thunderclap. Of course. I knew who she was. I was mortified. She was the person who filled in last year when the main special ed teacher was out on a six-week medical leave, just a month after Ethan had started school. How could I have not remembered?
And yet, while I may not have remembered her, she remembered Ethan. She carried a picture of him in her mind that warmed her heart. I loved that thought. And that made me wonder: how often to we make an impact in the smallest way, not knowing we even made a difference?
We can't discount the smile we might give, the gesture to help, the compliment we may extend just when someone needs it. We may never know the imprints we make -- like this woman showing up at a meeting to be encouraged and in the process, encouraging me...and the ripples spread, like pebbles droped in a pond.
Saturday, January 7, 2012
- The Long Winter, Laura Ingalls Wilder
Every year around January the sports guy on the talk radio show we listen to in the mornings starts throwing around a certain phrase. "Thirty-three days until pitchers and catchers," he'll say...Twenty-nine days...Twelve...meaning, the days until pitchers and catchers report to spring training. The Red Sox. A glimpse of summer, a briefly wakened memory of the crack of the bat and roar of the crowd. What he's really saying is, No matter what it looks like right now, spring is around the corner.
"Did you hear him?!" Dan called from upstairs the other morning. And I said I had. Only, I, a big baseball fan and lover of all things spring and summer, didn't have that same excitement I often do; that anticipation. A moment later I realized why: it's hard to pine for spring when we really haven't had a winter.
More than a foot of snow before Halloween. Then not an inch since. Most people I know are doing a happy dance. Sleds sit untouched. Tuned-up snow blowers gather dust in garages. After last year's deluge, of snowstorm after snowstorm and roofs leaking and collapsing, all is quiet.
Quiet is good, say the snow-haters. And I see that, when I think of standing on a ladder trying not to, well, die as I attempt to break an ice dam off our roof that was spreading a wet stain on our bathroom ceiling. Don't get me wrong -- I love the gift of a spring-like day in early January.
But this whole thing got me thinking.
Last year I read an incredible book by Donald Miller. In it he proposes an idea that sprang up when he worked with several screenwriters on making a book about his life into a movie. It needs to be more interesting, have more drama, the writers kept telling him. Basically, they needed to "spruce things up." Miller wondered what would happen if he, if all of us, lived our lives more like the movies and less like real life. We crave drama and excitement. We want our heroes to face challenges and overcome them. Something is built into us that wants to see a grand story.
"Nobody cries at the end of a movie about a guy who wants a Volvo," Miller writes.
Could we live lives that were more the way we'd want to see them played out on the screen? Miller challenges. Lives where we face our giants, take risks, say what we've bottled up inside, do the thing we're most afraid of, do the thing we've always wanted to do?
When we look at life that way, I think the obstacles we face seem less daunting and more, perhaps, like bridges to something completely amazing.
Last winter during the endless snow I began reading Anna one of the Little House books, The Long Winter. We huddled together and read while sleet rattled the windows. We lived their story as we were in a small way re-living their story. We celebrated with them as they shook their fists at the storm in defiance, and when the warm Chinook wind finally blew, bringing spring. We were pioneers. We were going to beat the endless winter, like the Ingalls family. Our spirits warmed as we read.
And after our exceedingly long winter of snow and frigid temperatures, how we rejoiced at that first warm spring day. I often think: Spring cannot be this glorious in San Diego. What makes spring flood ones heart with joy and hope is really in part due to what it follows. What makes all of New England smile wider and breathe deeper and savor the smell of earth and sight of green is, of course, the absence of them all...the dark...the waiting.
This is what I remember, when all seems well. A simple, quiet life is a good thing. A calm winter and quiet skies should be relished.
But also -- we were meant to fight battles and cross valleys and stumble for water in the desert. We were meant to journey and endure and persevere for the pure delight and joy and glory that will come from overcoming.
May we live our lives' story well.
Friday, January 6, 2012
The "I forgive you" is more complicated. I've been doing that after he says he's sorry, because I want him to hear the words. He needs to know the slate gets wiped totally clean.
I think of the words and how foreign they must be to little ears. Forgive. What does that mean, anyway? Ethan hears it as a phrase that he knows he's suppose to insert somewhere. Several times recently, after he's done something to upset me, and we have our little talk and I lean close to start to give him a hug, he'll whisper "I forgive you," in a comforting way, and begin to pat my back before I can do the same to him.
Actually, I'm the one who is forgiving you, I sometimes say pointlessly, as if that's making much sense. And it sounds so...harsh, really. So usually I just hug him and repeat the words he's already said to me.
This morning we got in the car and before Ethan could finish buckling his seat belt I did it for him. He loves buckling his own seat belt. It's an independence thing. But I knew he had a bulky sweatshirt on under the coat and the straps were pulled so tight, it'd be hard for him to do on his own.
"I was supposed to do that!" he wailed, disappointed.
"I know Ethan, but I was just trying to help," I told him. "Sorry."
There was a pause, and then quietly, "I forgive you," he said to me.
Way to go, kiddo! I thought at first. You finally got the context right.
Then I looked back at him. "Ethan?"
"Thank you for forgiving me," I said. And as we drove to school all I could think was that he may not understand the mechanics and the conventions of the concept, but still, still: what would it be like if I was so eager to extend my hand and say the words; to forgive? What if I was excitedly awaiting the opportunity...looking for the right moment..to release, rather than hold someone in my debt?
Tuesday, January 3, 2012
I began reading a profound book the other day. This was perfect reading for the end of one year and the dawn of a fresh one (One Thousand Gifts: A Dare to Life Fully Right Where You Are). The author writes about thanksgiving being central to our faith, about gratitude in all things being the secret to true joy. She spent a year writing down every little thing she noticed about everyday life that was beautiful. She ponders the nature of God, of grace, of suffering. Good, heady stuff. I read and drank it all in. I went on Facebook and scrolled down through everyone's resolve for the coming year. I will eat better...save more money...forgive...even spend less time on Facebook.
Oh the irony, that this book about a woman who finally stopped doing and just received God's grace would instead threaten to set me on a treadmill of trying to, well, be as close to perfect as possible.
What hit me was this, as I decided to go to bed and start over: we must give ourselves permission to fail, and then we must start over. This is of course why so many New Year's resolutions are never kept. It's not the giving up, the "falling off the wagon." It's that we then decide not to try again.
At school, the flakes were still falling. I pictured Anna and her class running to the windows to watch (Anna confirmed this is indeed exactly what happened). "It's snowing!!" a kindergarten boy shouted with glee. I watched the way the wind whipped the flakes like river currents on the sidewalk. They danced with us to the school's front door.
I can live on a busy street near the city and still see the beauty. I can fail but not give up. I can be me...not the farmer's wife...not my friends. And love me in all my imperfection, while still accepting the grace to be just a little better. This is my New Year's resolution.