Monthly Archives: September 2015

Classrooms

I teach my English 2010 writing classes in a labyrinthine building with exposed concrete walls throughout. It has a circa 1979 vibe—dark, narrow hallways; windowless classrooms; industrial labs devoted to woodworking et al; and, unexpectedly, the dance and theatre departments.

It’s creepy AND flamboyant.

I arrive on campus before dawn twice weekly and make my way through the university building that could easily be featured in a horror film.

I love it.

It’s weird and outdated, and I secretly find that funny and cool. I feel an affinity for the GT’s overly utilitarian spaces and the predictable metallic smell of concrete wafting through it’s confined corridors.

I guess I kind of like that it’s ugly and old and strange, a patchy bunch of garages and man caves welded together. And then there’s me, showing up to talk shop with my students (shop, in this case, meaning “writing!”)

It’s decidedly right-brained. I’m decidedly not a dude. It’s not the 1970’s and I am not handy with the power tools.

 

Word Life

Jack colored the carpet on the stairs with dark slashes of black crayon. He shoved eight slices of bread into the crevices of the couch. He knocked over a soda on the rug. He voided on his bedroom floor. He left eighteen candy wrappers underfoot. He head-butted me with brute force when I didn’t instantly retrieve candy for him because I was doing the dishes.

Then he went into the garage and began rearranging the snowblower, lawnmower, bikes, wagon, buckets, filing cabinet, tools, nerf guns, and scooters.

It’s the weekend.

Autocorrect just turned the last sentence into “Pits the weekend,” hahahahahaha.

Whatever. I shouldn’t be complaining because I got to go to a writing retreat Friday night in the canyon with the lovelies in my writing group. We talked until 2:00 am and slept until 10:00. We ate Indian takeout and croissant breakfast sandwiches. We read each other’s essays. Crying happened, but so did laughing.

Anyway, I’m about to get really real here. Super real. Whatever, here goes:

Sometimes I feel trapped in my life. Raising people with disabilities is claustrophobic.

This doesn’t mean that I’m ungrateful or that I want to reject everything. It simply means that the nature of disabilities is to box one in with high, thick walls and suck out all the air.

There is just one tiny window that lets in a slice of light. I open it every day for air and for words.

Words are oxygen.

Writing, reading, thinking, and teaching about words is a deep, cold breath.

Clean and bracing.

  

Not THAT kind of a blog

I sat in a tiny waiting room the other night with three moms as we waited for our children to finish social skills class. 

One of the unexpected perks of special-needs parenting is meeting women who are sassy, hilarious, tough, genuine, and stripped of pretension by the crucible of raising our unusual children.

There is an instant rapport in many cases amid fellow foot soldier moms who are holding fort in the trenches, as one does when autism happens. 

As I introduced myself to two of the newer moms, my friend Jess told them, “She has a blog.”

“It’s not THAT kind of blog,” I quickly added. I always feel that when the subject of blogs comes up, I must qualify that mine is not a lifestyle blog steeped in FANCY.

“It’s a blog about special-needs parenting,” I said. “Not the sort of blog where I do things like post photos of my insanely gorgeous laundry room.”

At which point, Jess leaned over and trilled in a sing-song voice, “I keep pods in a jar!!!” 

And we all died laughing.

The Good Weekend

Alright, I feel that my last post demands some penance. It was irritating and depressive. I need to not post on the eve of a weekend, when historically the crap gets real.

Sometimes you (meaning me) attempt humor and it’s just sad and also not funny.

Anyway, the weekend is done and we made it through. I came through with some new ideas about how to survive weekends. Ideas like:

  1. stop freaking out about future weekends and just focus on the weekend in front of you. One at a time. And,
  2. weekends don’t have to be gloriously hedonistic to be great. Simple pleasures and little improvements can be a balm. If you let them.

And so, what I want to say is this: This evening I made a frittata that we ate in the backyard while Henry did tricks on the trampoline, Jack curled up beside me on the grass, and Charlie and Truman took turns “being alone” in the fort of the play structure. Jeff set a timer on his phone because each wanted the fort to himself, and we are all about parity and turn-taking and respecting people’s need for three minutes of solitude on the platform above the slide.

I feel pleased and grateful that Jack was mostly happy today, that we could be outside together (or alone in the fort, as it were, for three-minute increments), and that I could be still and unhurried and easily there with my family.

I went to my niece’s baptism this weekend, and to the temple, and on a date with Husband. I ate a fine pastrami sandwich. I helped Henry reorganize his room. I read books. I sat on the grass with my people.

The weekend ended beautifully.

Because I let it.

  

The Post Where I Give Self-Help Advice LOL

There is this thing I do that I really need to stop doing. Because it is so very stupid.

Whenever a weekend or a holiday approaches, I start to daydream about how I would spend the weekend or holiday if the constraints of autism and cognitive delay weren’t the determining factors of How We Do Things Around Here.

If there is a more counterproductive activity, I haven’t yet discovered it. 

I’ll dream about sleeping in. Reading. Working out. Taking spontaneous vacations. Taking any vacations. Eating at places that do not serve nuggets and fries. Hiking more. Visiting museums. 

It’s pretty easy to sink down into a mire when I start thinking this way. Sometimes I can pull myself out of it. I do not have a foolproof tutorial for How to Stop the Mire-Sinking, but I have a few ideas:

1. Turn Off the Brain. When I conscientiously shut down my brain for a little while, I’m way less angsty. It’s hard to think sad, wistful thoughts if you’re really not thinking at all. A good way to do this is to…

2. Sleep. Naps fix things. Maybe the brain needs to stop spinning in circles in order to heal itself. I’m pretty sure our brains are begging us to lose consciousness more often for this purpose.

3. Then get up and do something. Engaging in some sort of useful activity rewards me with some tangible success, like pruned dogwoods or vacuumed rugs.

4. Back away slowly from social media, where everyone else’s glorious life will make you want to dry heave. Concomitant with laying off the Facebook etc., is telling yourself that no life actually is perfect. It’s only curated to appear so. 

5. Stick with people who don’t spend their days attempting to seem perfect. Because boring. Life is too vivid and rich for boring.

6. Read or watch something funny. Big laughter is restorative and makes the shizziness slough off. It might come back, but you can always laugh again earnestly to send it away.

7. Eat tacos. Or pizza. But only really good pizza.

  
P.S. Shop for groceries with a jolly three-year-old. It’s life-affirming.

Morning

I walked to my car after teaching my classes this morning through dappled sunlight and shade, and I thought:

A) Going to work is SO MUCH EASIER than raising children at home. The end.

B) Teaching part time is fun.

C) I can’t tell if I am a good teacher yet. I’m still finding my rhythm.

D) Attending meetings about sixth-grade special-needs kids (i.e. mine) who attack bus drivers and aides, teachers, and other students at school is pure delight. Actually, it’s the opposite of that.

E) I’m starting to feel done in by the mental and behavioral issues everywhere. 

F) I’m back on my book addiction, scraping through life, one literary hit at a time.

G) I love Beethoven, who often accompanies me to campus at 6:00 am.

H) One of the best parts of driving in the morning dark is seeing this tableau: mountains backlit with deep blue, a sliver of a crescent moon and a bright star up above.

Welcome to Mortality

You know how people always say that they wish children came with a handbook, like a big How to Successfully Raise Your Particular Child, in Precise Terms kind of a book? 

Maybe everyone doesn’t say it, but I have been known to say it. Because it would be REALLY NICE  to simply follow an owner’s manual at times, instead of blindly trying and failing in various parenting techniques.

Anyway, it would be so great. And that’s for a typical kid.

Jack is not a typical kid. 

I really, really need his instruction manual. 

Just for a reference, at the bare minimum. I would consult it about “Where to find the right services” when the current services start falling through. I’d read up on “The meds that will consistently work the best for Jack, including doses,” and I would memorize the section on “How to discipline Jack when he really needs disciplining, without setting him off on a rampage of violence and destruction.”

There is no manual, though. 

And the person who suggests to me that we do have a parenting manual, called The Scriptures, can back away slowly before I throw an iPad at their head.

We are in a pretty good place with Jack and Charlie at this moment. Don’t tell the universe that, because it might decide to throw a hot slippery mess at us if it thinks we are basically doing okay. But even in this pretty good place, it’s still ugly and floppy and endless.

Weekends continue to be long and difficult. Our house continues to sustain constant damage from the wrecking crew. Neither Dutch nor I is getting enough sleep or exercise. Driving in cars with our boys remains a precarious, yet necessary, endeavor.

I will occasionally drop into the trough of a wave on this ocean, and feel pretty angry about all of it. I’m not there now, though. 

My current ailment is more like a low-grade fever with intermittent aches and chills. I’m basically functioning, but I’m weary and run down. (Side note: I sort of hate writing about this stuff because I fear it comes across as me being a) whiney or b) in the business of soliciting sympathy.) (Other side note: I don’t want sympathy, but I do like to occasionally whine.)

Anyway, the crux of this post is that there are no easy answers. 

There is no Jack Almanac or Reader’s Digest Version of How to Raise a Person with Serious Intellectual Disabilities. There is prayer, yes. I KNOW. 

There is the psychiatrist and behaviorist and pediatrician and ENT and pediatric gastroenterologist. And they help. They do. There are books and resources, but they tend to paint with a broad brush and not always apply to the big issues that are ruling our lives. 

It’s all a crap shoot, because you can’t really change a person just because you want them to change. Some things won’t ever change, at least not until the next life.

Anyone who tells you otherwise is trying to sell you something. “The Princess Bride” knows, guys.

So I’ll end with my current favorite phrase, the one I find myself tacking onto the ends of lots of things, like essays and conversations because it applies so very, very aptly so much of the time:

Welcome to mortality.

[drops mic]

Tiny Letters: September 1

Dear 5:15 AM,

Who knew that I could like you?

See you every T/Th,

Me

 

 

Dear English 2010 classes I teach,

You’re darling. And smart. And really young.

I like you guys,

Me

 

 

Dear Jack,

Too much poo tonight. Waaaay too much poo.

No more,

Me

 

 

Dear book club,

Thank you for the billions of good book suggestions. I will never be able to read them all, but I want to try.

Cheers,

Me

 

 

Dear Lesson Prep and grading,

You hitting me with a mighty mallet isn’t going to do me in, even though it feels like it. I will win.

Calm down and back off,

Me

 

 

 

Dear September,

I’m glad you’re here.

Cheers,

Me