Autiscally-oriented is our son
The doctor had many nice things to say about our son. He was a pleasure to work with. He was cooperative and patient. He had a sense of humor. He worked hard and without complaint. For seven hours, she observed him perform tasks, take tests, and stare at screens. She interviewed him. He assessed himself with a number two pencil, blacking out little ovals that best fit the answer to questions like, “I am a leader” or “I hurt animals.”
Never. Rarely. Sometimes. Frequently.
The doctor added information gleaned from two of his teachers and from us. A diagnosis, reached.
Our son has autism. Or, should I write our son is autistic? Is it more correct to state something like our son has an autism spectrum disorder? That seems long and oddly prissy.
I don’t know. I’m new to this. So is he.
He’s not new to feeling what he feels, or seeing the world in the way he sees it. That’s been going on since his little days, apparently. He’s high-functioning, very bright, and has no trouble with thinking skills. I type that, but I read somewhere autistic people don’t like labels like “high-functioning” so I’m not sure how to describe him a manner that is deemed correct. He does well until other people show up and then (insert needle-scratching off record sound).
The social piece isn’t there. He doesn’t understand facial expressions, tone of voice, body language, or intentions. On the bell-curve of social intelligence, he was on the left edge of the bottom of where the bell begins. We knew he had trouble making friends. We didn’t know how poorly he understands anyone—-including us. His intelligence compensated for a lot and he learned to cultivate an attitude of not seeming to care if he had friends or not.
The guilt.
Oh my God.
The guilt is unreal.
It took suicidal ideation and inpatient hospitalization to get us here. Two psychiatrists said, “He’s quirky. Ever thought of having him tested?”
We had him tested.
Now we know.
Most importantly, he knows.
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Our son is autistic.
Our son has autism.
Our son has an autism spectrum disorder.
Autism has our son.
Autistically-oriented, our son is.
He’s au-tastic?
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He’s seventeen years old. That’s late for a diagnosis, which also leads to an odd loneliness. Because he’s nearly an adult, I don’t have the right to make big announcements at Facebook or tell friendly acquaintances over coffee. He doesn’t want anyone other than his doctors and therapist to know. He says he isn’t ashamed or embarrassed, but that it’s private and I respect that.
I also think it’s smart to stay quiet about it because of future education and employment opportunities. It could affect future relationships, too. If we sling together “Autism” and his name, discrimination is more likely.
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My dad once told me when he was a kid, he was obsessed with vacuum cleaners. He would go to appliance stores and visit the vacuums. He learned as much as he could about them. My dad created a scrapbook of vacuum pictures he cut out of catalogs and the newspaper. When he told me this story, I was delighted by the vision of my little dad, with his thick glasses and deep dimples, falling asleep at night dreaming of canisters and hoses.
My dad was an alcoholic. He had been sober for twenty years when he died last summer. Now, in light of my son’s diagnosis, I wonder what he was pressing down and pushing away with alcohol. My son’s diagnosis makes me feel more tender toward my dad.
I forgave him in my heart a long time ago. I forgave him verbally before he died. There are no regrets.
I see my dad in a new light nine months after his death. I think of stories he told, quirks he had. He talked to himself a lot—even sober. He was hilariously funny—even sober. He was a creature of habit. He hated crowds, long lines, loud noises. He didn’t have close friends, but he was tremendously close to his family.
I wonder.
It’s ridiculous speculation born from a desire to have answers and draw connections. I tunnel through memories. I fill in blanks and push pins into moments. I’m suddenly a forensic psychologist, historian, time traveler. I wrap a red string around one pin, stretch it to another, and then to another. A picture emerges of two men. We are beyond the reach of proof or science, settled squarely in the lap of speculation, but here I go.
My son would have not only loved his grandpa’s vacuum cleaner scrapbook, he would have understood and contributed clippings.
Ready, Set, Go ~ A One Word Reflection
In 2014, my word of the year was REST. Interestingly, one must take action to rest, work to rest, and resolve to rest.
In 2015, my word of the year was OBEY. To embrace that word, I had to obey the prod in my heart to delve into obey.
January 2016 is half-over and I’m finally ready to write about READY. Will future years bring a word to me that won’t lend itself to being a pretzel, twisting back on itself in some form? Maybe in 2017 my word will be CHEESE or SNUGGLE?
If I’m going to study, meditate upon, and delve into what READY means I need to be ready to do it, no? God knows I need these little head-starts. My whole life has been leading to becoming ready if I’m a woman of faith who loves Jesus. From my earliest earnest renditions of “Jesus Loves Me” squeaked in Sunday school classes to nights I’ve tossed anguished with sorrow; from my declaration of faith and baptism to the rebellions of the worldly young adult and back again—it is all a grand swirl of a story aimed squarely at READY.
The first thought I had after shaking hands with READY was the parable of the virgins and their oil lamps.
“1 God’s kingdom is like ten young virgins who took oil lamps and went out to greet the bridegroom. 2 Five were silly and five were smart. 3 The silly virgins took lamps, but no extra oil. 4 The smart virgins took jars of oil to feed their lamps. 5 The bridegroom didn’t show up when they expected him, and they all fell asleep. 6 In the middle of the night someone yelled out, ‘He’s here! The bridegroom is here! Go out and greet him!’ 7 The ten virgins got up and got their lamps ready. 8 The silly virgins said to the smart ones, ‘Our lamps are going out; lend us some of your oil.’ 9 They answered ‘There might not be enough to go around; go buy your own.’ 10 They did, but while they were out buying oil, the bridegroom arrived. When everyone who was there to greet him had gone into the wedding feat, the door was locked. 11 Much later, the other virgins, the silly ones, showed up and knocked on the door saying, ‘Master, we’re here. Let us in.’ 12 He answered, ‘Do I know you? I don’t think I know you.’ 13 So stay alert. You have no idea when he might arrive.” Matthew 25: 1-13, The Message
Clearly, READY has an eternal trajectory, but I’ve known and believed this for years. What else can I study and learn about being ready in my daily life? Readiness is wisdom and eventually most people learn to plan ahead and prepare. I do that, I noted to myself.
Enter the staidly solid Oswald Chambers and “My Utmost for His Highest.” I used the handy-dandy index and sought devotions where he discussed readiness as a matter of the heart. To be ready is to become childlike again. Who has met a kid not ready for an adventure, who isn’t quick to explore, play, and fancy herself a pioneer? No, she might not be ready for school or ready to do the dishes, but she is inherently eager to soak in new information. Chambers writes, echoing Matthew 25:
“Jesus rarely comes where we expect Him; He appears where we least expect HIm, and always in the most illogical connections. The only way a worker can keep true to God is by being ready for the Lord’s surprise visits. It is not service that matters, but intense spiritual reality, expecting Jesus Christ at every turn. This will give our life the attitude of child-wonder which He wants it to have. If we are going to be ready for Jesus Christ, we have to stop being religious (that is, using religion as a higher kind of culture) and be spiritually real.” Oswald Chambers, My Utmost for His Highest, March 29
READY is a constant state of expectation, packed bag in reach, anticipating action. Even when action isn’t on the horizon, being ready—in itself—is action.
Now the question becomes READY to do what?
Serve ~ “Keep your shirts on; keep the lights on! Be like house servants waiting for their master to come back from his honeymoon, awake and ready to open the door when he arrives and knocks.” Luke 12:35-36, The Message
Testify ~ “Through thick and thin, keep your hearts at attention, in adoration before Christ, your master. Be ready to speak up and be ready to tell anyone who asks why you’re living the way you are, and always with utmost courtesy.” 1 Peter 3:15, The Message
Go Deeper ~ “So clean house! Make a clean sweep of malice and pretense, envy and hurtful talk. You’ve had a taste of God. Now, like infants at the breast, drink deep of God’s pure kindness. Then, you’ll grow up mature and whole in God.” 1 Peter 2:2-3, The Message
That time their shirts wore me
The day my son was hospitalized for suicidal ideation, he was wearing a graphic t-shirt. It features a pixelated video game character he loves, frozen in a jaunty pose. The shirt went with him from one hospital to another, along with his pants and socks. When he came home, I threw the shirt into the washer, then dryer. I folded it and returned it to him.
He wears it often so I wash it often. During the weeks following his hospitalization, I’d see him wearing it or in a rumpled pile. It rudely reminded me of that horrible day and night. There’s a huge disconnect between the innocence and energy of the t-shirt and how he was feeling. Outward appearances are dangerously deceptive. The mustachioed hero on his chest is perpetually posed leaping into action. Meanwhile, behind 100% cotton, beat a heart that wished to cease.
The shirt is still in his t-shirt rotation. I wonder if he thinks about that day when he pulls it over his head. Does he recall what he wore to save his life?
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A couple of months after my dad died, my mom gave a bag of his shirts to pass to my husband and sons. I sorted through the button-down flannels and sports team t-shirts recalling photos and events when he wore them. I kept shirts that I personally liked or felt a connection too. The rest of the shirts were donated.
I washed the shirts after inhaling each. They still smelled like my dad. Washing them would wash away the scent of my mom’s laundry detergent and the scent of their house. I was resetting them, I thought. Neutralizing. Dried and folded, they were passed to my husband. I’m not sure what I was expecting, but the first time I saw my husband wearing one of my dad’s shirts, it was difficult. He is wearing that only because he can’t.
My dad was taller than my husband, so the shirts drape differently. My dad had a bit of a belly before he was obviously unwell. My husband doesn’t. The shirts fit him, though. It’s like a Brotherhood of Inherited Shirts. They morph to fit and strive to remind. Although they no longer smell like my dad, the colors and plaid prints were his, first. Someday, they’ll fade and thin until no longer wearable. Grief does that, too. The intensity fades, the weight thins, and it will be used for other purposes.
The softened shirt might end up being used to cover a preschooler who wants to finger paint. The more streaks and splashes of color smeared, the more fun was had.
Weathered grief ends up being used to help someone in the throes of a fresh agony. It remembers, it covers, it doesn’t mind the wild zig-zags of another’s pain. God knows I left my own smeared handprints on others.
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One recent morning, my son and husband stood by the front door saying goodbye for the day. My husband drops off our son at school on the way to work. I could see my son’s video game t-shirt through his open jacket. My husband was wearing one of my dad’s button down wool shirts.
The pang never showed. I noted the moment because, hey, there they were in those shirts that tease those feelings up and out. I waited for the punch. I waited for the visions of smooth seas and old photographs, conjuring up a time when life seemed more simple and doing laundry wasn’t an obstacle course of pits to swing over.
Instead, I saw just them: Two men I love, going out into a still-dark day. That moment was all we had. Rather than feeling ambushed, I felt rescue. I felt reality.
That shirt is my husband’s. It is solely his.
That shirt is my son’s. It is still his.
‘Obey’ was 2015’s word of the year, and boy are my arms tired
Hello, late December. Christmas is over, the new year is still unborn, so I’m the dry turkey in the middle.
About a month ago, I tweeted “2015 has been one giant shit show punctuated by occasional mercy flushes.” I stand by that assessment, although December has been kind, sparkly, solemn. There have been difficult moments, like the meltdown over snow on my dad’s grave but I felt carried. I felt gifted. I felt peace. My son, who struggles with depression and spent a chunk of November hospitalized, sat next to the tree opening presents with delight. It was beautiful.
Pessimist me, with plunger in hand and a familiar tummy rumble, says I’m a fool for relaxing. Surely the next calamitous deluge of stank is just around the corner. I’m a little twitchy and shellshocked. If I could ball up the year into a tidy bundle, I’d drop kick it at the stroke of midnight and boot it to Pluto’s icy heart while flipping it off and singing that “hey hey hey goodbye” song.
Naturally, I’m spending these days reflecting on 2015 and how my Christian-lady mandated Word of the Year or #OneWord fit in with the calm and calamitous moments. The word I chose—or that chose me—was OBEY.
I wasn’t excited for OBEY. But, everywhere I turned in December, there it was staring at me from the Bible, from books I read, from sources beyond myself. After prayer and writing, it was declared. OBEY.
I’ve never prayed more than I did in 2015. I thought I prayed a lot before, but no. 2015 was a constant prayer in many ways. I literally got on my knees on several occasions. I talked to Jesus as I drove places and tried to sleep. I ranted at him in the shower, in hospitals (so very many hospitals this year), in churches, and in a large amount of gardens. I also shut up and listened to him in those places, too. Prayer is a conversation. It’s obedience. It’s how I received solace, wisdom, and marching orders.
You can’t have OBEY without pray and you can’t pray unless you own that it’s an act of obedience.
One year ago, I asked this question: Where am I being taken in 2015 where OBEY is front and center?
I was taken to hospital rooms, a death bed, a mortuary, a cemetery. I drove children places they needed to be even when I didn’t want them to be there. I was taken to the end of my driveway where I pulled piles of medical bills out of the mailbox. On the walk back up to my beautiful, expensive front door I wondered how we will pay them.
I saw my first-born graduate from high school in a soaring ceremony after months of wondering if she would.
I saw my newly widowed mother smile and laugh and speak of the future with a plan, hope, and deep faith.
I spent Christmas morning with my son, who a month earlier wanted to die.
I hiked along the rocky shore of a mountain lake. I parted eye-high wildflowers to see a view from 10,000 feet. I was above soaring birds, for once. They sailed below. Had they been bigger and I smaller, I could have busted a Gandalf out and hopped on for a ride.
I get out of my bed each day with a prayer said, fresh. I made it a priority because I was told to. Obey.
Okay.
And when the new word of the year was revealed through prayer, reading, even funny moments, I said yes.
It’s READY. Literally, it’s “ready.”
Where will I be taken in 2016 where READY is front and center?
In the bleak
In the bleak midwinter, frosty wind made moan,
Earth stood hard as iron, water like a stone;
Snow had fallen, snow on snow, snow on snow,
In the bleak midwinter, long ago.
~ Christina Rossetti, “In the Bleak Midwinter”
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We were driving to church with my Spotify Christmas playlist guiding the way. A particular version of “Have Yourself a Merry Little Christmas*” came on. It’s one of the more melancholy Christmas songs, but I’ve always loved its ability to capture the longing for joyful togetherness in years when it simply isn’t there. Maybe next year, if allowed. These things are beyond our control.
Christmas is doubly difficult this year without my father. I’ve found myself sinking into a quieter, subdued holiday. That includes the music I listen to.
Church was a few blocks away when the song caught up with me. I began to ugly-sob, struck by a horrible thought. My dad’s gravesite would be covered with snow. The idea of snow piling and drifting up onto his headstone and wreath broke my heart anew. I know he isn’t there. He doesn’t feel the cold or the dark or the loneliness. It was completely irrational, which is one of grief’s disguises.
I wasn’t bothered by the idea of my dad’s cremated body filling an urn placed on top of my mom’s dining room buffet. When he was finally interred in a plot at a veteran’s cemetery, thoughts of sun and wind rushing over and around his resting place didn’t gut me. But snow and the winter solstice spinning our way are crushingly sad. Snow on snow, snow on snow, as if one burial wasn’t enough.
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In “It’s A Wonderful Life” George Bailey is gifted a vision of what life would be like had he never been born. Clarence the Angel takes him on a tour of rowdy, decrepit Pottersville. One of the last stops they make is at Harry Bailey’s headstone. The wind and snow relentlessly pound the child’s marker. George realizes the only reason that marker exists is because he didn’t. In Pottersville, there is a raging blizzard, as if the ugliness and injustice of such a place can fish brutal weather out of the air.
Back in idyllic Bedford Falls, there is no storm. There is no headstone, either.
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My husband parked in the church lot and turned off the engine. “Are you okay?”
I said “no”. Usually, I say “yeah” or “I will be.”
He probably thought he wasn’t hearing correctly, because he asked again. Still, no.
I tried to explain what set me off—the idea of snow piling on top of my dad’s grave and how it made me unbearably, irrationally sad. He said he was sorry. The kids started unbuckling, oblivious to what was going on up front. They opened the sliding door and climbed out into the cold. I sat for a few beats and joined them.
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First, his body was destroyed by cancer, then fire. Then, he was scooped into a plastic bag tied and tagged shut. That was settled in a deep brown wooden box. Finally, he was buried under the dirt of my hometown, topped by sod. I think I understand now. Snow is something else beyond my control. It’s another layer of separation between what was last Christmas and what is this Christmas.
…Through the years, we all will be together
If the Lord allows…
He didn’t.
It’s a snow on snow, snow on snow Christmas. It’s a muddle. It’s here.
Yet, I am comforted. My dad is missed, but he’s free.
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Our God, heaven cannot hold him, nor earth sustain;
Heaven and Earth shall flee away when He comes to reign.
In the bleak midwinter a stable place sufficed
The Lord God Almighty, Jesus Christ.
*listen to Andrew Belle’s “Have Yourself a Merry Little Christmas”