Monthly Archives: August 2014

Behavior Modification: Mom vs. Charlie

Star Date: 8/27/14

Captain’s Log:

4:40 pm Discussed with our Behaviorist, Lacey, the need for Charlie to eat dinner at dinner time, instead of running away and refusing to eat, only to sneak around looking for junk food at bedtime.

4:45 At Lacey’s suggestion, made one familiar food that Charlie likes (pancakes) and two foods he won’t eat (bacon and peaches), with a plan to require that Charlie taste one of the new foods. “We will work up to taking a bite,” she said. “For now, he just needs to lick it.”

5:00 Informed Charlie that dinner was ready. Pressed Henry into modeling appropriate dinner behavior. Ditto with Truman. Silently cursed Dutch for being on call and having to work late. Told Charlie he could choose between trying a peach slice or bacon. Screaming ensued.

5:02 Charlie cried.

5:06 Charlie hid under the table.

5:10 Reminded Charlie that if he tried either a peach or bacon, he could play Xbox after dinner.

5:12 Charlie ran away.

5:13 Retrieved Charlie and carried him back to the table.

5:15 Offered the peach and bacon.

5:16 Explained that he didn’t have to try either food, but if he didn’t, there would be no Xbox the rest of the night.

5:17 More screaming.

5:20 Charlie threw the peach across the room and crumbled the bacon on the floor beneath his chair.

5:21 Carried Charlie, thrashing, to time out in the bathroom.

5:22 Physically prevented Charlie from leaving the bathroom.

5:25 Charlie wet his pants , soaking the bathroom floor.

5:26 Required Charlie to dry the floor and mop it.

5:30 Required Charlie to carry the wet towels to the laundry room.

5:35 Required Charlie to change into pajamas.

5:36 Noticed Jack, naked in the backyard. Called him inside and ordered him upstairs for a post-backyard Code Brown bath, stat.

5:38 Wondered if the two boys on the spectrum had a staff meeting and decided to both be pills at precisely the same time.

5:40 Escorted Charlie back to the table.

5:45 Charlie finished his pancakes and said, “I’m done.”

5:46 Reminded Charlie that if he wanted to play Xbox, he must try a new food.

5:48 Compelled Charlie to pick up the peach slice from the family room rug and the bacon shards under the table.

5:50 More screaming.

5:55 Produced a fresh peach slice and half strip of bacon. Charlie rejected the bacon and pointed to the peach.

5:58 Held the peach slice on a fork near Charlie’s face.

5:59 Charlie licked the peach.

6:00 Cheering.

6:01 Hugs.

6:02 Permission to play Xbox granted.

6:03 Charlie fled downstairs.

6:05 Texted Lacey this “Me: 1, Charlie: 0. He licked a peach. I win.”

6:10 Wanted to run up a big flight of stairs and do the Rocky punch thing.

6:12 Cleaned up the backyard Code Brown. Dried Jack and helped him into jammies. Told Jack we poop in the POTTY, a rhetorical, if impassioned statement.

6:15 Sat down, sweaty, rumpled, flushed.

6:16 Cried. Shut out hopeless thoughts of doing this night after night into infinity.

6:20 Admitted deep weariness. Because all that and he licked a peach.

Bravery is a Womanly Virtue

I dreamed this week that I was giving birth. This was shocking to me as I didn’t know I was pregnant. Surprise! I was in a hospital operating room, but no one was attending me. I was alternately pacing the floor and lying curled up on a table in the center of the room. Occasionally someone would step in and talk distractedly to me before leaving again. They were peripheral, though. The focus of the dream was 100% on my clenched abdomen. I was in so much pain, that I gave very little thought to anything around me. I did it by myself.

I had a baby. And woke up.

And then last week, I dreamed that we were at the zoo, my mom and a couple of my sisters and some of our children. We were sitting in a courtyard eating when someone started firing an assault rifle at people. I heard the rat-tat-tat of the shots, but didn’t actually see the shooter. I jumped up and picked up the round metal pedestal table where we sat. I ordered everyone to get behind the table with me, where I held it like a parasol over my shoulder. We hustled toward the exit, tightly packed together with the table behind us.

I wonder if these dreams are my subconscious wielding a highlighter; is this the way I inwardly view myself? In both dreams, I was under a great deal of pressure and I reacted swiftly and purposefully. Disturbing as these dreams were to me, I woke feeling capable and, strangely, feminine.

I’ve been thinking about what it means to be a woman, maybe because I live in this house with a strikingly male majority. I am the sole bastion of womanhood in a family of guys.

It seems I have some feminist angst because I freaked out when the summer blockbuster movie season descended, featuring superheroes and also more superheroes. Good luck finding a good date movie in the summer that didn’t involve highly sculpted men knocking down buildings as they fought the aliens/decepticons/bad guys. I was irate one Saturday while looking for a movie that didn’t involve tough guys fighting evil tough guys. Dutch took the brunt of it.

“I don’t want to see a movie where well-muscled men save the world! It’s like the film industry thinks the only thing that’s sexy is superheroes battling other-worldly villains, while Gwyneth sits around in her sports bra, waiting to be saved,” I ranted to my husband while shoving dirty dishes into the dishwasher.

“You know what nobody thinks is sexy?” I practically shouted at him. “My life!”

That escalated quickly. He gave me a neutral look and kept quiet.

Raising children, disabled and typical, isn’t as fast-paced as an action flick. But that doesn’t mean it’s boring. Yes, there are fewer exploding cars, which is okay with me.

But aren’t stories about family relationships compelling to most people, as we all have a family of some sort? And can’t we release a few more movies with strong female leads, and let them wear their clothes while they rescue themselves? Actually, there are some movies where this happens. Merida, Anna & Elsa, Katniss, and Tris do not sit around waiting for people to come to their rescue. But I was mid-rant and on a roll.

If you ask me who the real superheroes are (which nobody did, but whatever), it isn’t pretend comic book people with physical powers.

It’s parents.

It’s women who aren’t being rescued but who are saving themselves and the people around them.

It’s anyone living with a challenge bigger than they are.

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It’s the Most Wonderful Time of the Year

Structure has returned to my life, which means that I am blissfully suspended in a state of satisfaction. I’m like the mosquito happily sinking in the tree sap which is carmelizing into amber. Me and the school year are reunited and it feels so good. I don’t care if I’m stuck in the sap. If this is wrong, I don’t want to be right.

Everyone started school this week. The seventh grader has realized that he will survive middle school. Jack and Charlie by a stroke of grace attend different schools which are connected by a breezeway. Since they go to essentially the same location, they get to ride the same special needs bus, making my life a complete dreamboat! They are out the door at the same time and return at once together at four o’clock. God loves me. All is well.

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In the seven hours between the bus stopping at our door, Truman and I are taking walks again. I’ve returned to cooking. We eat real food. There is time to clean up the after effects of the Code Brown. I can schedule doctor appointments and chat with therapists on the phone without a screaming chorus of banshees following me around.

I’m still reading about those blasted time-traveling Frasers in Scotland and the pre-Revolutionary War colonies. The books are long and they have their claws in me. I’m okay with that.

The school year’s return makes my efforts more purposeful. Summer’s survival mode fades into organization. It’s possible to do more than survive when things like this happen. It’s possible to thrive.

Not for the Faint-Hearted

I’m reading a book series where the characters sometimes swoon, generally from the loss of blood due to an 18th century battle injury via musket ball or broadsword. It’s very swashbuckling.

Do people faint in real life, or only in books?

My sister Kate passed out in front of an elevator after giving blood once. She woke up sitting on the ground, staring at some people who were staring back at her. Hey staring people, why don’t you stop being awkward and help the doe-eyed redhead off the floor, mkay? Just an idea.

The only time I’ve ever fainted was in the temple. The cause was too much kneeling. I started feeling waves of death-nausea crash over me as I frantically wondered when the officiator was going to wrap it up. Turns out, I compelled a speedy wrapping-up by blacking out.

Dutch caught me, because he is nothing if not an ubër gentleman who is genetically programmed to rescue ye olde swooning wife. I awoke to men peering over me with a glorious, yet tasteful crystal chandelier winking behind their heads.

Have you ever lain on the floor in the temple? Because it’s weird. You’re not supposed to be lying on the velvety white carpet staring at the chandelier while men in white delicately attend to you. I glanced over at the settee where my friend Shilo was looking at me with a concerned smile and felt like the biggest idiot ever.

About that time, a temple-ready paramedic of sorts came whooshing into the room in an all-white ensemble, down to his white tennies. He was out of breath from running up several flights of stairs from the bowels of the temple where he apparently paces, nobly waiting for the call to help fainting women.

I was assured that too much kneeling has resulted in many a fainting person. Okay, terrific. No wonder this guy is always on standby.

I was asked repeatedly if I was pregnant. Nope. Just nope. This was when Charlie was a toddler and long before Truman was even a twinkle in my eye. Did I sense disappointment that it wasn’t an early pregnancy-induced swoon? Sorry to disappoint everybody, guys. My uterus was vacant.

I was offered orange juice and assisted to the couch. When I still couldn’t feel my feet or hands twenty minutes later, the EMT in the gleaming white kicks produced a wheelchair and wheeled me into an elevator. We exited in the basement where we passed a pallet of toilet paper roughly the size of our first home, a bungalow in Sugarhouse.

A kindly sister manning the first-aid room went to retrieve my things from the locker room and left me staring at the two cots which were covered in hand-crocheted white blankets upon which rested official signs reading, “Cots are sterile. Please do not sit or lie on them.” I assumed they were referring to weary temple workers in search of a nap and not me, but I felt like I should avoid them anyway, leaving them sterile for a real emergency. You know, like somebody in diabetic shock or an actual pregnant woman going into labor.

Dutch pulled the car to a loading dock where I was bundled into our car like laundry.

And that’s my story of passing out at the temple.

If I were writing my life as a novel, though, that’s not where I would put the swooning. There are two real-life moments in my life when I should have passed out, wanted to pass out and lose consciousness for even a minute. But I didn’t.

If I were writing my life as fiction, the two fainting scenes would be:

1. When the pediatrician stood at the far end of my hospital room an hour or so after I delivered Truman prematurely and told me my baby couldn’t breathe and was being transported to a bigger NICU who could properly care for him. Everything went dim and the room spun around slowly and crookedly, yet I remained sitting, eyes blinking, in my hospital bed where I would remain for several days, across town from my baby.

2. When I sat in the university’s behavioral health clinic two years after Truman’s fancy ride to the Big NICU and heard that a second child of mine had a bevy of disabilities. Half of my children suddenly had special needs. The floor opened up like a sprung trapdoor, and I was falling through the dark.

But I did not swoon.

I asked reasonable-sounding questions. I appeared fine. No one offered me orange juice or a wheelchair ride to my car. No one caught me that time.

Dutch did, however, talk me down off the precipice as I drove home after that appointment. He was solid and accepting of it, just minutes after the diagnosis. “We already knew this,” he said gently on the phone. “Now it’s just official. We are getting Charlie the help he needs.”

My neighbor Brittany brought me a raspberry chipotle chicken salad.

My neighbor Chris brought me a key-lime tart.

My friend Terra texted me from her island in the Pacific, and said all the right things.

I guess I sort of did swoon, and people did catch me.

Common Things

“The art of being happy lies in the power of extracting happiness from common things.”

So said Henry Ward Beecher in 19th-century New England.

My children have schooled me in embracing common things.

Like yesterday. I was thoroughly pleased when Dutch retrieved my iPhone charging cable that Jack had crammed through the vent louvres, directly into the furnace. Dutch extracted the cable so I could again charge my frigging phone, and I extracted joy from this.

I like that preacher Beecher didn’t say “find” happiness, but rather “extract” it. As with pliers and a firm grip.

There are other common things that make me happy. Behold:

*Latching the doors in the evening at bedtime. We are shut up tight and I no longer must chase my errant kinder around the neighborhood while retrieving all the gardening tools, rakes, and snow shovels from the island in the cul-de-sac.

*Reading books about people time-traveling to 18th century Scotland. So it’s not Shakespeare, I know. Let’s pause while I slow clap for any geniuses who want to point that out to me. A little literary escapism trumps mental breakdown. Deal with it.

*When my clean bathroom smells like oranges and lemons for an hour or two between kid-bathing and the Code Brown. It’s fleeting, but so nice.

*Dried mango strips. Yes!

*Purging closets; dropping off bags of donations at DI. I extract obscene amounts of pleasure from the getting rid of the stuff. Have you ever wondered if maybe heaven is heaven because there we are unencumbered by things? Clearly, I have.

*Overcast summer days. And school’s imminent approach.

Kids = Hilarious

Eldest son spoke in church today, making me feel quite old. I’m not sure how my little firstborn babe is now big enough to give talks to the congregation at church. He did a good job, speaking about being kind to people, which makes my heart sing as he chose the topic. Bless you, darling Eldest Son.

Talks at our church always, always, end with the phrase, “in the name of Jesus Christ, amen.” They just do. Always. But that part slipped H’s mind. He finished his story about Great-Grandpa Wilcox and then just sort of trailed off. “That’s it,” he said, and sat down.

Boom.

*Drops mic*

After H spoke, a newly-minted missionary gave his farewell address. As he talked, three little ragamuffin boys from a different ward entered the chapel with the intent to cut across to the other side of the church. They looked around and saw all the people and started running to get to the north side of the chapel. One of the boys was wearing jeans and sporting a serious mullet. One led the way with great speed. The third and smallest, wearing a giant oversized t-shirt, tripped on his own feet two-thirds of the way across the room and ate it in front of the crowd assembled to hear the outgoing missionary.

Dutch and I laughed. Hard. Because we are the kind of people who laugh in church when other people trip and fall, I guess.

Mostly we laughed because our kids are the type who would sneak into a crowded, solemn assembly while wearing jeans and a big shirt and a mullet and turf it during the missionary’s farewell speech on charity.

Being the type of family that is often a spectacle, we are drawn to the funny parts.

And basically, that’s all I got.

*Drops mic*

It’s a Hard-Knock Life

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Yesterday Dutch fixed, for the second time in a week, the pantry door that was hanging sadly from a single hinge after one of Jack’s angry throwing-of-the-door moments. The hubs lamented that our house isn’t composed entirely of a) steel doors with b) lots of locks and c) cement floors, as well as d) no carpeting anywhere. Any. Where.

Someone needs to start building houses for autism families that are purely about function. Forget home decor. Anthropologie accents wouldn’t last five minutes in a house like mine. Furniture barely scrapes along to see another day. Same with appliances and sinks and toilets and bathtubs (anything involving a drain). You get what I’m saying.

We need built-in cameras like the Jack Cam so we can always be watching for Code Browns. We need sensory rooms as a standard feature for sensory integration purposes. Every autism family knows that sensory input is this Giant Thing That Rules Our Lives. May as well build a room with swings and slides and monkey bars and vibrating/heated cushions, and glowing lights and foam pads and a ball pit and trampolines and a disco ball of some sort. It would be the heart of the house, I promise.

Currently, my house feels a bit like an orphanage, and I mean that in the most generous way possible. A happy-ish orphanage like the one in Annie where those doggone lovable gals sing and dance while they scrub the floor and washboard the laundry and whine about Miss Hannigan (me, I suppose, in this scenario. Great).

It’s orphanage-y around here because everything is trashed. Shredded. Used and abused. It all takes a real beating from the guys. I feel like I blog about this way too much. Like seriously, way way too much. Maybe it’s boring to someone who lives in a generally poo-free house. I don’t know.

I do know that a newly-acquainted, fellow autism mom said to me this week (never before having visited this particular little dysfunctional blog) that she was sick of the Pinterest-generation blogs about perfect houses and fancy home cooking and adorable kid crafts and birthday parties. “I want to read a blog about cleaning poo smears off the walls,” she said, much to the hilarity of my entire support group.

Someone needs to become the autism home builder/retrofitter. With the right design, durable and functional could probably look amazing.

Less institutional, more intentional.

Accepting the Disability 2.0

Since I last posted, I have been thinking a great deal about acceptance. I’ve been wondering if I have fully accepted Charlie’s diagnoses in the year since it all hit the fan and everything became twice as hard.

It’s been such a struggle to cope with an entirely different set of behavior issues from Jack’s. My patience feels like it has been stretched so thin that it’s transparent.

I have asked myself if because it is still so hard, perhaps I haven’t finished accepting it. If I’ve fully accepted it, I’ve wondered, wouldn’t things just wash over me with a calm, bland understanding of “this is how it is now”? I don’t really know the answer, but I’m beginning to suspect that acceptance doesn’t mean it’s easier. It just means you’ve acknowledged it and recognize it for what it is.

Acceptance is facing it every day and not lying to yourself about it. It’s starkly understanding that it’s a real part of your child. It’s not constantly shaking your fist at God or the universe about it.

But I don’t believe that acceptance suddenly makes it easier. Accepting the disability means pulling up a chair at the table for all the issues that make life infinitely harder. It’s realizing that everything is different, more challenging.

It doesn’t mean I always have to like it.

It does mean I see reality and do not try to sugar coat it.