Monthly Archives: December 2014

Find Happy Things. Clutch Them.

I watched It’s a Wonderful Life late last night, by myself. Dutch brought me a couple of See’s chocolates, which I ate on the couch, wrapped in the thick afghan my mother-in-law crocheted for me. It hit the reset button on my Christmas spirit.

I’ve been lowly as we cope with Jack’s unpredictable aggression, no school, and cold snowy weather. But George Bailey pulled me out of my blue state.

My mom loves a movie or a book with a good message. It’s a Wonderful Life is full of them:

Good friends are priceless.

There are more important things in life than fancy houses, cars, and clothes.

Real riches are the loved ones around us.

Selflessness trumps selfishness.

One person can have a tremendous, positive impact on countless lives.

A simple life is still a good life.

In sum, it’s a Shirley-approved movie.

Then I watched Napoleon Dynamite with Henry and Dutch. Loud laughter ensued, making spirits bright.

This was good, as the next day involved a major public meltdown in a crowded place and a subsequent shriveling of my will to finish out Christmas Break.

One has to pluck the happy moments and clutch them, like George Bailey holding Mary and his children as they sing “Auld Lang Syne.” Forget the past. Find the good happening right now and grab onto it.

Also, I hung up my grandma’s quilts.

Victory.

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Let’s Quote Robert Frost

I had two separate conversations at church today where, after responding honestly to the question of how my family is doing, I realized my neighbors got more than they bargained for.

The answer was raw.

I don’t like lying, though. Fred and Kristen listened to me without judgment or pity, which means a lot.

Jack has cabin fever because it’s cold and snowy out and he doesn’t like wearing shoes and coats, or getting the hems of his pants wet. We haven’t taken him in the car since the two disastrous car trips last week, unless both of us go so I can drive and Dutch can sit in the back and be the bouncer.

He broke the tracks of the new train Friday, so Dutch got out the old electric train board. Jack broke that Saturday. We are running out of things for Jacky to love to death.

I don’t mean to sound all Ebenezer Scrooge-y when I say that Christmas break is for families with typical children, families who travel, families who can take all their kids places without fearing for their lives in the car.

I do have the spirit of Christmas in my heart. I do try to keep it all year through. It’s just that for the special-needs parent and her SN kid(s), Christmas Break is so lame.

After handling two separate kid meltdowns of the massive variety yesterday, I told Dutch I am sick of disabilities. The novelty has worn off.

The snow is fresh and white on the mountains. I keep looking at the vista and inhaling, exhaling.

“The woods are lovely, dark and deep,
But I have miles to go before I sleep
And miles to go before I sleep.”

Just Weird. Not Bad

So Christmas was weird again this year. Jack was so volatile and unpredictable, we had to change our plans.

I lowered my expectations. It helped.

I expected an entire Christmas day inside while it snowed outside, without any structure or routine, without respite, with high levels of excitement, with sensory overload, with many many tired people (including Dutch and me) to be long and frightening.

It was long, but it was okay. When you expect the worst, any small good thing that happens is a spark of light. It’s unexpected and it glows.

The sparks for me:

*Charlie asking when the song “Police La-Di-La” (sic) was going to come on the radio.

*The guys opening their presents. It was 100% joyful, especially Jack with his vibrating foot massage bath.

*Watching the three littlest boys watch a train go around and around it’s track. Boys + Trains = Magic (duh)

*Making bacon, eggs, and hash browns. A little crispy.

*Snow falling off and on all Christmas Day.

*Having nowhere to be.

*That 20 minute nap I took in front of the fire when Jack was cooling off in time out.

*Texts, phone calls, and face timing with family far away.

Weird isn’t always bad.

Blue Christmas

Last December, Jack picked up two large cups of hot chocolate from the cup holders in the front of the van and threw them across the car. For the past year, I’ve been cleaning hot chocolate from every surface and crevice. Even when I’ve been over an area multiple times, it seems that new bits are coated in dried cocoa all the time.

I’ve thought several times that there has to be a metaphor in this—the cocoa that won’t go away. No matter my efforts, it subtly reappears. Or rather, it never really goes away.

This week I figured it out. Some things happened:

1. Jack became extraordinarily hyper. He literally runs around the house all the time. When he isn’t running, he is eating. He seems to be on speed.

2. Jack attacked me while I was driving, with Charlie and Truman in the car. It’s a horrific story, which withers my soul a little, every time I think about it. It involved Charlie screaming that we should call the police, which I totally would have if I hadn’t been shielding myself and my two littlest boys from the biting, clawing, and kicking. At one point, I thought if I could only free my left hand for a minute or two, I could open my door and shout for help. But there were about ten minutes of nothing but trying to survive. I realized that though he is just ten, I can barely subdue Jack physically.

The other low point came in the midst of the busiest intersection in our area, when Jack kicked the gearshift into reverse. I hit the brakes and imagined a car slamming into us from any direction. It was the first time as Jack’s mom that I have feared for my life.

3. Two days and an altered dose of meds later, Jack attacked his respite sitter as she drove him home from an outing. He grabbed at the steering wheel, jerking the car to the right where it slammed up and over a curb, puncturing the tire.

The car following her pulled off at the same time and some perfectly altruistic man got out and changed the flat tire for her, on Christmas Eve day. Apparently, he has a special needs brother. I’m convinced that people who have lived the trauma are ultra aware of other people in difficult, disability-driven situations

Nevertheless, this is all a nightmare.

The aggressive, destructive behaviors are the hot cocoa.

They have splattered over our lives, and dripped into every facet of family interaction. No matter the effort we put into cleaning, managing, modifying—they never go away. Sometimes we think we’ve got it all, but it’s an illusion. There is always more in the cracks and the corners.

The cocoa never leaves. I cannot banish it.

This Christmas, I yearn for wisdom and more strength.

Like the cocoa, I need a renewing supply.

Tidings of Comfort

My son, Jack, is ten and has Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome. He also has autism. Jack is a special soul, a gift to our family. Raising him is also the greatest challenge I have ever faced.

I have three other boys, too. And eighteen months ago, we learned that my third son Charlie, who was then five, is also on the autism spectrum and has profound anxiety. I had already done a fair amount of wrestling with The Lord in Jack’s early years, and felt that I had come to terms with Jack’s disabilities. But when Charlie was diagnosed, it came at me like a hook shot and knocked me flat. Because now there were two.

In the weeks following Charlie’s diagnosis, I wondered why God seemed to want more from me than I was able to give.

Suddenly half my children had special needs. No one around me knew what that felt like. But Jesus did.

I felt like I was in a pit, but I knew the Savior had descended below my pit and was now with me at the bottom. I didn’t feel alone.

God had also sent me this legion of angels in the form of my husband, my other sons, and dozens of dear friends. Frankly, when it comes to selfless people in my life who lift me up, my cup runneth way over. The day after the diagnosis, Chris brought me flowers and a key lime tart. Brittany brought me a raspberry chipotle chicken salad and gave me permission to cry, to which I responded “too late!” Terra texted me from Hawaii and told me she believed in me. Lacey brought me chocolate and helped me apply for an autism waiver program to help Charlie get therapy. I was serving in Laurels with Marla and Cynthia, who listened to me talk about my struggles with compassion. So did Fred and Shirley. They’re always checking in on us.

That difficult summer, I had a dream early one morning. I dreamed I was at a musical recital when one of my neighbors leaned over and whispered to me, “You don’t have to worry about the challenges you face raising your children. You’re doing a good job.” I instantly woke up and knew that it wasn’t my neighbor speaking in my dream. It was my Heavenly Father. I felt completely light—as if I were filled with light. He hadn’t left me alone.

How is this a Christmas story? Because God sent us a Savior, who was born in a stable and became our redeemer.

For me, comfort is knowing that we were before we came to earth.

Comfort is knowing that after this life, because of the Savior, we will live unencumbered by the limitations of mortality.

Comfort is knowing that no matter how hard things may be, He descended below them all. He knows how we feel and how to help us.

Christmas is comfort because when Jesus came to earth, hope came too.

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Lemons :: Lemonade

Jack shredded the seats of our dining chairs. It happened the way people fall asleep or in love, you know—slowly, and then all at once.

He worked on them for years every time he sat down for a plate of frozen Dino nuggets or a bowl of Cap’n Crunch. Eventually they started to look haggard. Holes appeared in the woven rush seats. You could see right through to the floor. And then last week, sitting on a wobbly chair meant one risked falling through and getting one’s bum stuck, like something from a Laurel and Hardy sketch.

You see, the chairs died because I got them fifteen years ago before I had children. Those were the days when the only thing I cared about in a chair purchase was if the country French look worked with my Grandma Lila’s Art Deco china cupboard.

I chose poorly. They simply weren’t the sturdiest. I recently saw my old chairs on a Humans of New York post about matching up people who have nowhere to go for Christmas dinner with people in the city with room to spare. I couldn’t see the seats in the photo, but I assume they are pristine, because my children aren’t in that NYC apartment picking at them.

This just in: things can really last quite awhile when you don’t intentionally try to destroy them. Amazing.

We got new chairs. Since having children with autism, the criteria have changed. Now we just need durable and cleanable. Also cheery.

We found yellow metal chairs at IKEA which fit the bill. They’re perfect, actually—lightweight, happy, and they can be taken outside and hosed off. Best, there is really nothing on them that a sensory seeker can pick at.

It’s a win-win because when we got them put together (by which I mean, when Dutch assembled them for the better part of an evening, and I simply stuck floor protecting felt circles on the tips of the legs) I noticed that aside from the chairs, everything in my kitchen/family room was a shade of tan, brown, cream, or beige.

It was like that moment in The Giver when the people suddenly have access to memories and emotions, and their world transforms from black and white into an explosion of color.

I’m surrounded by neutrality. It’s safe and boring.

I want color! I seek vitality! I need an infusion of life!

I’m not sure when I turned into some robot who buys everything in the same shade so it will go together, but I am determined that that drone woman must be stopped.

Eclectic, darlings, not matchy-matchy. That’s what’s happening now. My kids’ destructive tendencies are lemons that I’m juicing for lemonade. The colorless palate can take a hike.

I’m scheming to hang my grandma’s bright vintage quilts on the walls, but I need ideas for keeping people from using them as napkins and Kleenex. Send me your suggestions.

Charlie Says

We call him Charlie. And Chachi. And Chully.

He’s the third boy, and he makes life much more interesting. Sweeter, too.

Here are a few Charlie-isms, recently noted.

*A few weeks ago, in the ER, as the respiratory therapists treated his croup. It was said in a squeaky little voice: “Don’t wrap me up like a bandage.”

*Today, sitting on the couch before school with a truly worried look: “I really hope I’m on the nice list.”

*The last time we went to the cabin: “Mom, where’s Olive?” (Olive was my parents’ German shorthair pointer who passed away this fall). “She went to live in Heaven,” I reminded him. “Oh, she died in the war,” Charlie surmised.

*At Temple Square as we gazed at the Christmas lights and the nativity, “Dad, why does Jesus live in outer space?”

*Loudly yesterday, as the mailman handed me a package on the porch, “Why does he have that big beard? What does it help him do?”

“It helps him look like a lumbersexual hipster,” I should’ve responded, but I was hurrying to shut the door while shushing him.

Not sure what I would do without my Charlie.

Be the Change

I read a quote this week that said (and I summarize) that if you want to improve your marriage, think about what it would be like to be married to you. Find those things about yourself that you wouldn’t like living with and change them.

So I puzzled it out as I took care of four children with the stomach flu, two of whom don’t understand the toilet/vomit connection. There was ample opportunity for puzzling while doing laundry, passing out popsicles, and bathing people.

My conclusion was visceral and immediate: I would totally hate being married to me. I felt a creeping sense of horror when I looked at my foibles from an outside perspective. I would drive myself straight up crazy.

I’m not vilifying myself, honestly. I know I’m not all bad. But when I stepped outside my biased interior view of myself, the unpleasant realities of my personality stood out harshly.

I’m impatient.

I fly off the handle way too much.

I think angry, unkind thoughts.

I whine.

I’m highly emotional.

I’m super judgmental about Pinterest because I hate it.

I complain too much.

When I’m stressed, I get bossy.

I don’t even know how to make homemade rolls. Seriously, what kind of woman am I?

I told Dutch that I would hate me if I were married to me. He laughed and kissed me. When I asked him how he would handle being married to someone like him, he thought about it for a minute and said, “I’d be okay with it.”

“Of course you would,” I wailed. “You and your Dutch-y wife would just veg out together, totally kicked back all the time. It would be a marriage steeped in mellow.”

Not only am I highly upset envisioning being married to someone just like me, I also have developed insane loathing for Dutch’s imaginary spouse who is just like him.

I think I missed the point of the quote about improving marriages. The point isn’t self-loathing (or imaginary other-wife loathing), but to ponder how to change bad behaviors into better ones.

So I’m going to try doing this: take deep breaths, be grateful, stifle mean thoughts with generous ones.

And smile.

A Flashlight Set Upon a Hill Cannot be Hid

Every time the Trans Siberian Orchestra comes on the radio with that frenzied, pounding version of Carol of the Bells, I think of flashlights.

Like Ron Burgundy, around here flashlights are kind of a big deal. The boys on the spectrum can’t get enough of running around the house with them, shining them in people’s eyes. The three-year-old agrees, except when someone shines one in his eyes. Then it’s not cool.

The flashlight fetish is Dutch’s fault. He is addicted to purchasing and hoarding tiny, powerful lights.

What else do you expect from an electronics engineer? He can’t help himself. He’s hooked on the unmatched rush of being prepared in any situation that requires sudden illumination.

Also, he adores well-engineered things. We spent part of our honeymoon touring the Hoover Dam, paying extra for the deluxe Hard Hat Tour which let us see the massive generators at the bottom of the dam. “I have always wanted to see the generators,” he told me earnestly, even passionately. What could I say? His eyes were glistening. The only other time I had seen him look so wistfully blissed out was at our wedding ceremony.

It’s just in his nature. Dutch likes the gadgets.

So when Henry announced two years ago that he needed to bring a flashlight to use in the 5th Grade light show during the school’s holiday music program, I put Dutch on it. He retrieved several flashlights from his various hidey-holes around the house and let Henry choose one to take to school.

Easy. Done and done.

Except that Henry came home from school and announced that he needed a “less bright” flashlight. Apparently his light was brighter than his classmates’ by a lot. Like a lot a lot. His teacher had suggested that he find a less blinding light for the light show.

Dutch was highly offended by this. “We do not OWN weaker flashlights,” he said, annoyed. “It’s not my fault if all the other kids brought crappy lights.”

Engineers. They have standards, apparently.

Henry and I shrugged.

I arrived at the school for the music program that morning. The lights went out when the 5th grade took to the stage. Truman, barely one year old at the time, whimpered in the dark. He startled when the Trans Siberian Orchestra boomed from the sound system.

And then, magic!

Truman didn’t make a peep, he was utterly transfixed by the choreographed blinking lights. I, on the other hand, laughed until I snorted.

Why, you ask? Because Henry’s light was so frigging bright, it was ridiculous.

Want to know which one is my son? See the blinding, piercing beam that sweeps the room like a prison searchlight?

That’s him.

Nothing wrong with shining brightly, kid. Remember that.

Jacky and the Tree(s)

The Saga of the Christmas Tree continues, to no one’s surprise. Jack has tried twice to tip over the new, fresh-cut tree. He hasn’t been successful thanks to Dutch’s sweet engineering skills.

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This eye bolt anchored to a beam in the ceiling and some loops of wire have proven an effective antidote to the tree-tipping. There is still a fair bit of mopping up tree water and picking up the ornaments that fall softly like snowflakes during an assault. We have felt, paper, and wood ornaments now. Nothing breaks. Well, nothing breaks without considerable effort.

Last time Jack attacked the tree, I put him in time out and came back to assess the damage. “Issa disaster,” the three-year-old said. It really wasn’t though. Just a minor cleaning/redecorating half hour.

Tonight I found baby shooting hoops with one of the ornaments, a heavy green earthy-looking ball of faux herbs or grass. Whatever. Kids beat things up. Don’t get too attached.

Also, Jack found some rope in the garage and thoughtfully decorated this little tree. Festive!

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