Fancy!

I have a new fancypants website, thanks to Dutch "The Brain" Husband! We (by which I mean he) are still working out a few bugs, but here it is. tooursurvival.com

True & Absurd

I'm in the middle of a very smart crime novel which contains this line:

"Most things are both true and absurd." (Norwegian by Night, Derek B. Miller)

Do you agree? Discuss.

I think that most of life feels very solidly real, even when one wishes it weren't quite so solid. And I agree that it can be truly ridiculous at times.

This book makes me want to live in Norway. But only in the summer months, just like Roald Dahl in his childhood. And without the crime drama. Just the fjords in summertime.

On an unrelated note, last week I participated in a writing exercise of choosing five words that describe me. It was completely painful. Try it, see how it stings. I could only think of my flaws, my ugliest qualities. My list looked like a summary of my worst traits. So shameful.

As I've mulled my list of self-descriptors, I've decided that I need more than five. I am angry, emotional, short-tempered, irritated, irrational, and impatient. I'm also creative, honest, snarky, compassionate, forgiving, and drawn to funny, strange things.

I like the way keeping a blog allows me to be hyper aware of little moments: happy, funny, lovely, and bittersweet.

What NOT to Say to Special-Needs Parents

In the spirit of full disclosure, this post gets a little angry. It's pretty heavy on the snark too. 

You have either decided to stop reading now, or you are curiously waiting for the rant to begin.

Don't say I didn't warn you.

I often leave conversations with other special-needs parents with a bunch of new stories about weird/unfortunate/insensitive things that people have said to us. And continue to say to us. 

And while I totally know the feeling of sticking one's foot in one's mouth and saying something really dumb that just comes out wrong, I couldn't resist making this list. It might sound angry, but it's origin lies mostly in weariness.

Okay, here it is:



Things NOT to say to parents of a special-needs child



There must be a lesson you need to learn in all this.

My jaw actually fell open when a fellow mom told me she hears this all the time. She and I agreed that the people offering this gem probably need to learn a lesson themselves. This statement is arrogant and super lame.



I would never be able to handle it.

Frankly, we never thought we could handle it either. Nor did we want to. But when things happen to your child, you don't honestly have any other choice. We're not superheroes. We are normal people struggling with big challenges. Also, you're making my challenge about you. Stop it.



I would never want to raise a special-needs kid.

Someone said this to me a few years back and I blinked my eyes in stunned silence before opting to back away slowly from the conversation before my head started spinning around in circles. What do you even say in response to this? I honestly don't have a clue. Thankfully, I've only encountered this one just once.



Do you ever wish your child didn't have special needs?

This is like asking a puppy if it wished it were a turtle instead. It's a totally pointless exercise in futility. We have children. They have disabilities. The question assumes we would rather live in a dream-like state of wistfulness than face reality.



I heard about a study that shows ___________ (insert chemical of choice--pitocin, B12, Tylenol---whatever) causes autism.

Mothers who took especial care of their pregnant selves for nine hard months and who now spend their entire lives in the service of their children with disabling conditions do not wish to be told they and they alone are solely to blame for their child's issues. Let's all make a pact to stop blaming the people whose very lives are dedicated to caring for special children for unwittingly causing (in some people's opinion) the conditions that God sent these valiant children to earth with.



Do you think your younger child will have special needs that crop up?

I have been asked this question a truckload of times, and yet it still baffles me. It assumes that my family has imperfect genes or really back luck or something---that we're destined to birth disabled people, while the people asking the question apparently have nothing to worry about in their gene pool. So what if my youngest were to develop a disabling condition? Why do people think it's okay to ask me this? Also, FYI, parents like me are already completely aware that disabilities aren't just vague possibilities that happen to other families. We know it could happen again. We don't even need anyone to point this out to us.





Sometimes we all need to slap a filter on the thoughts leaving our mouths more than 
on our Instagram pics. I'm guilty of this too sometimes. The truth is that I really do appreciate when people engage me in conversation about my life and my kids' issues. 

Let's talk. And let's do it with sensitivity, and a genuine desire to understand. 

"It Folds Up Into a Spear"

Jack's bedroom has become a wasteland. It's the tundra of our home, at the top of the house, with nothing there except a mattress. And the Jack Cam taking it all in.

There is no bed in his room because Jack has taken to using his bed frame as a battering ram. When he gets mad, he slams it into the walls. So currently, he simply has a mattress on the floor.

I suggested to Dutch that we get a Hollywood frame for the mattress and forget about fancy headboards and such.

Me: "Let's keep it simple and just get a Hollywood frame."

Dutch: "When you take the mattress off a Hollywood frame, it folds up into a spear. Jack will put it through the window."

Me: "Let's just leave the mattress on the floor."

And so, Jack's mattress remains on the floor, except when he decides to stand it up against the wall for kicks when he is having a time out in his room.

His bed frame sits in the upstairs hallway, leaning up against the linen closets whose doors Jack broke, and whose contents are now exposed to the world.

It's a wee bit of ghetto in the tundra.

Dinner Time Without Footmen

A Rare Jewel: Eating Together

The past two Sunday evenings, we have seen the miracle of the entire family sitting at the table to eat dinner together. It's something that practically never happens here, not because we don't believe in family meals together or because we don't eat home-cooked food. We are believers in dinner-table culture. We do cook at home.

The rare tableau of my family sitting down to eat together has more to do with everybody's food aversions and their dislike of being in close proximity to their brothers. Two of my children might enjoy family dinners better if our dining room looked like a diner, with everybody sitting at his own booth, eating his own plate of French fries.

But we have just one table, and for Sunday dinner we'd rather eat beef roast and mashed potatoes.



The Rest of It

It hasn't been all potatoes and gravy. Jack continues down his backwards behavior slide. Today he tried to throw the iPad off the deck; when Jeff stopped him, Jack attacked Charlie.

Jack is speaking more, which is marvelous and wonderful. He is also restless, aggressive, and destructive.

School days go well, at least most of the time. Jack has a teacher and two classroom aides, a bus driver and bus aide, an occupational therapy team, the speech and language pathologist, and an adaptive PE teacher all working together to help him make progress. Saturdays and Sundays and weekday evenings though, I am the team. Jeff and Henry help whenever they are around.

I wouldn't mind if I had a team of helpers waiting below stairs to pick up the slack when Jack needs more sensory input or more one-on-one time than I am able to give. If this were Downton Abbey, I would simply ring the bell and summon the staff.

It's not.

No Comment

Whenever I read the comments attached to one of my articles, I think to myself "Stop reading the comments attached to your article, dummy!"

Also, "You know this won't end well sister."

And I would be wise to listen to my inner warning bell. But I pretty much always read the comments anyway.

I read them because, like several of my children, I'm lacking in the impulse control department. 

I read them because sometimes there are comments from people with nutty families like mine, who write that my words resonate with their experience. How can I pass up hearing that?

I read them because I'm a curious little monkey.

Sometimes it's like watching a train wreck. But I can't look away. I already know that haters gonna hate and trolls live in the interwebs and there is so much meanness in the world, it's ridiculous.

Trolls and mean people aside, there is always that one comment that comes from left field and is practically nonsensical in it's cluelessness. Those are actually the ones I like to read aloud to the hubs.

We laugh. 

I wrote a silly little fluffy piece about how the last days of summer are like living in a fire swamp. It contained an abundance of Princess Bride allusions. Someone commented, asking if Utah has fire swamps in it's geography. ?????

The comments section got a little raucous following my article on baby name trends. Creative baby-namers got defensive and traditionalists went on the attack. It was a hot spanky mess.

The better comments are those left by people who follow the link from an article to my blog. They are real and thoughtful and decidedly anti-troll. They pop up in my email notifications like buttered popcorn in the red melamine bowl at my side while I watch Downton "Days of our Lives" Abbey with Dutch.

Please feel free to comment. Or to back away slowly from the comment section. It's your call.

Can We Stop With the "Amazing"?

How apt that on a day filled with sedation dentistry, a doozy of a code brown, a Charlie meltdown, and mom's precarious mental health, this article was published.

Extremes

Best quote I encountered this week: "Boredom is what happens to people who have no control over their minds."  (Liar & Spy by Rebecca Stead)


Most satisfying recent conversation: Explaining to our bishop about Jack's disastrous church behavior and having him just get it.


Tastiest part of Valentine's Day: Vast quantities of Reese's chocolate and peanut butter hearts, unequivocally.


Unintentionally funniest kid quote: Truman, looking at my shadow the lamp was casting on the ceiling, "It's a giant, Mommy."


Most extravagant feeling: Beginning a new book. In hard cover. Not on a tablet.


Best way to feel like you're trying on swimsuits in front of an audience: Participate in a memoir-writing workshop and read your crappy first-drafts aloud to a bunch of strangers.


Quickest way to feel like an aged mother in a time warp: Watch your sixth-grader participate in his first school dance, doing the foxtrot and the merengue while looking dapper in his suit.

What Motivates Us To Begin?

"Work finally begins when the fear of doing nothing exceeds the fear of doing it badly." Alain de Botton

I found this quote yesterday in an Atlantic article. Apparently Monsieur de Botton knows a thing or two about writing, procrastination, and the psychology of genius vs. work and failure as key components of creativity.

He nailed it.

The blank page or the blank screen glaring back at you can squash the creative process. At least it can if the creative process is about greatness and perfection. But AdB's quotable idea suggests that laying down some crappy text is part of the process.

It's a freeing concept.

I've been applying the same idea as I watch the Olympic competitions. Are the athletes born with a tremendous amount of athletic prowess? Or is more of their success attributable to practice, tenacity, and determination.

At what point does the mental component outweigh the natural grace and strength of an athlete? How much is talent, how much is sheer doggedness?

I suspect both are at play.

I think I prefer to focus on the hard work aspect of creativity. It seems more equal-opportunity. It feels more real-life applicable. It makes the creation of something seem more accessible.

It is essentially the point of a blog, right? Daily, imperfect blathering about whatever---it's the antithesis of polished perfection. Blog = writer's notebook or artist's sketchbook. Unless you're a big-time blogger with plenty of minions to make the daily "whatever" appear amazing.

I do think it's kind of funny (and maybe kind of sad) that all work is the result of fear. At least according to AdB. Fear, not passion or love. Maybe it's the fear of not saying whatever burns inside you to be said.

I suppose I'm down with that.

Jack Speaks

Last week Jack's daily note from Ms. Sue described the following situation from school during which Jack uttered a complete sentence:

During Smartboard time, Jack said, "Kayla?" (the name of one of the classroom aides)
Kayla said, "What?" 
Jack replied (clear as day), "I'll kick you."
Kayla asked, "Do you need a break?"
Jack responded by picking up his card that says "I need a break" and handing it to Kayla.
Jack and Kayla left the classroom for a short walk and Jack did not kick anyone.

Mind. Blown.

I am utterly blown away. That he spoke a three-word sentence. That he thought about a need and communicated it before throwing feet and books. That he refrained from tantrumming. That words trumped acting out. That he tried. That it worked.

I'm rosy and glowing with pride.

It's one of these victories that seems very small to those unfamiliar with Jack, and yet reveals a staggering degree of growth and progress of our nine-year-old redhead.

Jacky did it. He said those words he had in his head. He articulated so we could understand them. He spoke.