Monthly Archives: February 2016

Map Fad

You know those Facebook-profile analyzing things that spread like infectious diseases? You click on some button that takes you to some site, giving them permission to comb through your profile (and keep combing through it into perpetuity). In return they spit out a greatest hits video or an image of Your Most Liked Photo Ever, or The Map of Words You Use Most, or Which Side of Your Brain is Dominant.

I know you know what I’m talking about, because EVERYONE IN THE WORLD POSTS THEM.

Well I did the word map back when it was thee Facebook trend, because a) I love words, and b) I’m ultimately a sheep, following the herd of sheep narcissists. Also I’m a narcissist.

You recall what the word maps looked like? Take a gander:

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The most-used words are the biggest.

What would my big words be? I’m a binge reader and an unabashed writer, which means I’m fond of words. I clutched an inward, fervent hope that the biggest word wouldn’t be autism or poo or maybe some kind of curse word.

It wasn’t. My biggest word was I’m.

Yes, that’s right. Robots don’t sort out the boring words or pronouns to find the most interesting words.

My most-used word is a contraction of I and am. Narcissistic.

I was so annoyed by my word map that I didn’t share it. I just left it there, cold, self-centered, and kind of off-putting—all by itself and basically annoying.

What did I hope it would say? Glamorous! Creative! Hilarious! Unique! Brilliant!

Algorithms don’t insert words that aren’t already there into your word map. Did I secretly want my map to reveal something about me that I’d never typed into a status update?

My FB posts are usually blog links, with the occasional photo and rambling caption about Life at My House: A Dissertation on Disabilities. It’s clear that when I write things on the Facebook, they are about this reality and they originate from my perspective, hence the “I’m.” Maybe I’m justifying this. Of course I’m justifying this.

Nobody goes around posting about themselves using words like Glorious! Amazing! Stunning! and so forth. I mean seriously though.

In other news, autism was one of the larger words on my map.

So there is truth in social media.

A Brief, Ugly Memoir

The past few days have felt like this:

Here it is, people—a brief, ugly memoir of our week.

Jack got his new Man Therapist, who took him on walks, bowling, swimming, and to the museum. We felt smug and happy that we were helping Jack be active, healthy, and engaged. Yay us!

Then the weekend arrived and Jack refused to stand or walk. For three days, he has scooted or crawled everywhere, including into the ER and school.

We thought he had a broken bone maybe. Turns out he is just stiff and sore from working muscles that haven’t been worked in a long time because of behavior issues.

It’s so dumb. We get a thousand X-rays because Jack won’t walk. Jack won’t walk only because we tried to improve his mood and health with physical activity.

I’m feeling damned no matter what we try as Jack’s parents.

Jack is 145 lbs of purely dead weight. He’s impossible to move and he doesn’t want to ride in a wheelchair.

He is already an enigma wrapped in a riddle, swathed in basketball shorts. Helping an injured/hurting Jack is like driving a car that has careened off a cliff. I’m at the wheel, but gravity is driving.

Smile while you plummet downward (I think wryly, to myself). Let’s hear it for adventures.

Jack’s Bouncer

Jack has a new ABA therapist, who happens to be a dude. We have wanted a man to work with Jack for some time now, someone who is big and able to deflect hitting and biting. We’ve also needed someone strong enough to restrain Jack if he decides to go ballistic in the car. 

We finally found Jack his own bouncer.

The new guy means that Jack can go places now, because there is someone better equipped than me to handle any potential freak-out moments. Irony is the fact that Jack never seems to try any monkey business in the car now. He seems to just know that he won’t win if there are any battles.

It’s freeing. It’s also busier. We are keeping Jack happy and we are doing it by working in tandem to keep Jack constantly moving and constantly busy.

Jack and I both fall into our respective beds exhausted after four hours of therapy every afternoon.

I feel like this sounds like I am complaining. Really, I’m grateful. Also tired.

I’m so happy that Jack’s world has expanded again beyond school and the confines of our house, especially throughout the long winter. I’m grateful he can explore and experience things. I’m grateful to not be afraid of attacks on myself or anyone else when I drive my children places. I’m happy that Jack is happy.

Having this help is a gift.

It takes some getting used to though, having a really big non-relative man hanging out with us for four hours a day. 

It’s a funny thing to always have people here. Sitters, therapists, a support coordinator, a behaviorist. I know that it takes a village to raise a child.

Sometimes it feels like the whole village is at my house.

Forgetfulness

Last month I forgot to go to Jack’s IEP meeting at the school. IEP’s happen once a year and are a pretty big deal. Missing them when you are THE MOM and there are roughly 10 school teachers and support staff there waiting for you is a bad idea. This is Exhibit A.

Exhibit B is Charlie’s parent teacher conference that I forgot to attend the other day. I actually remembered it, but Dutch was working late and I had no respite sitter for Jack. But then I forgot to call the school and let the teacher know I wouldn’t be there. Slow claps for me.

Exhibit C is the School Community Council meeting I spaced, until the school secretary called me while I was grocery shopping and asked if I was coming. Bravo me!

Exhibit D is yesterday. Truman had a GI appointment that we’ve had scheduled for weeks. I reminded myself about it several times. It was in my phone, on my calendar. I told people we were going to this appointment. But yesterday morning, I didn’t remember it until a couple of hours after the fact, which is why my brain seems to have gone walkabout.

What the H, brain?

It’s like there is too much information crammed into my life to process. I can’t fit anything more in my head, so obviously things are now quietly slipping away.

Also, I’ve gone from only being able to read Game of Thrones to not being able to read anything. I can’t focus on ANYTHING.

Pretty sure I need one of the following:

  1. A vacation
  2. An assistant
  3. A daily delivery of some homemade brothy soup with crusty bread on the side. And a salad with pears and grapes and goat cheese that I didn’t have to make. I’m not sure how this would help my organization, but I would just really like it.
  4. Also, Zupas needs to get a drive-through window. This is neither here nor there either, but maybe if I put it out there enough, the universe will make it happen.

 

Disaster Preparedness

When I left home and started my own household almost two decades ago, I noticed that I began to do this thing where I would think about a possible tragic scenario and then think about how I would handle it if it actually happened.

Yes, I have anxiety.

Someone I knew lost her husband, or baby, or mother? An acquaintance was diagnosed with cancer or diabetes or depression? I would project myself into their position and picture my response to the situation they were facing.

“If that happened to me, this is what I would do,” I would deliberate to myself. I planned out big life changes—moves, downsizing, therapy, even more education. I considered the loss and sadness I would feel, and I pictured myself acknowledging these things and allowing myself time to dwell in grief before moving forward with the Big Life Changes.

There are several reasons why this process was so, so dumb.

One reason? It’s one thing to sit in a safe, neutral position, away from the vortex of a life in upheaval, and think clearheadedly about how to proceed. It’s quite another thing to be whipped around in the hurricane.

In my young musings about hardship, I forgot to account for survival.

My process of planning a life after tragedy was inadequate because it preemptively bypassed the swimming-amid-huge-waves-of-chaos phase. It skipped over barely surviving and moved directly to thriving!

I didn’t know. I just didn’t know.

I didn’t know that when hard things hit and difficulty becomes the new normal, there is a lot of just hanging on. Also, there is much more trial and error (and failure) than simply checking off the boxes of moving forward.

Thinking about how one will handle a difficult situation without ever having before experienced it doesn’t equal being ready for it. It might be an interesting exercise, but it cannot prepare you for when the bottom actually drops out.

In all my contingency planning for various disasters, I thought that thinking and organizing could help me with whatever came my way. But there are some levels of preparedness that don’t exist.

You can’t be ready for some things.

After Jack was born, our life was scrambled by developmental delay, autism, and M-CMTC syndrome. I found that complete preparation for raising a disabled person is an illusion. How can one be ready for one’s life to figuratively burn to the ground and then start over differently, with global limitations?

After Charlie was born, Jack rejected him, screaming and throwing things literally every time he and his baby brother were in the same room together. My body and mind were in a constant state of unsettledness. Survival mode. “You handle it so well,” people would tell me. They were being kind, but I was merely surviving.

After Truman was born, we were beyond the pale. We had had yet another child after Jack, which, to outsiders, possibly looked like potentially the most counter-intuitive thing we could ever do. But we did it—intuitively. We had to do it. Truman was the Manifest Destiny of our family’s expansion.

So what can a person learn from my unusual life? Is it a cautionary tale? An unintentional-yet-effective form of birth control? Are the things I write merely a perspective-enhancer for other people? Are we a three-ring circus? A traveling zoo train? A freak show?

Dutch and the boys and I have learned a few things.

Mainly that life prepares you during the challenge, not before.

  

  

Existentialism for a Friday Afternoon

It’s sunny today, though still smoggy.

When inversions trap dirty air low in the valleys, the entire area collectively suffers an emotional beating. The air is disgusting. It presses down on our moods. Mine is being pressed and tested, anyway.

Today I sat in a quiet place and thought about things.

I thought about how winter is charming for six days and then it’s just long and insufferable. I thought about how we all need to pray for a storm to banish the smog. February is turning into this month that I want to throw shade at because it doesn’t know how to behave or when to leave.

I thought about how for so many years it seemed I would have little kids and sapped energy forever. Now the kids are getting bigger. My energy is still pretty sapped, but the issues are changing. We are all growing. I occasionally am alone for a few hours and I feel a bittersweet pang that soon I won’t have a preschooler as my constant shadow. It’s freeing. It’s sad. There is a sense of evolution.

I thought about spring, about not wearing socks, about Jack walking outside with his big bare hobbit feet on the grass. Do the seasons change to keep us from losing our minds?

I thought about the earth, which is always spinning, and we can’t even feel it. We live on an enormous, rotating globe suspended in space by gravitational forces, you guys. Why aren’t we talking at this every day, always? It’s so phenomenal, so completely amazing. The universe is incomprehensibly huge. And we live in it, here on our blue and green and brown planet where we think about work and school and church and kids and Instagram and mental health and physical health and movies and stress and laundry.

I thought about how with the passage of a few years, generations switch places. I was just a newlywed college student, dreaming of graduation and babies. Now I teach newlywed college students who are dreaming of graduation and babies, from this settled, grown-up perch where I am surrounded by my hungry baby birds. Seriously though, keeping Henry and Jack fed is my new Sisyphean task. People joke about teen boys eating like crazy, and they are completely underestimating it. Teen boys eat like rivers carve canyons and run to the sea, which is to say, relentlessly, methodically, insatiably.

I thought about being at peace with messiness and weirdness. I thought about preferring it this way. Tidy and uniform must be dull. I think I prefer the vibrancy of wild, free-form growth. I have surprised myself by liking it.

  

What Kind of Mother are You?

My two youngest children went to the cabin with grandma and grandpa. This is a cause for celebration because I will have seven kid-free hours tomorrow. But more importantly, now we don’t have to prep Valentines.

I am aware that that last sentence essentially disqualifies me as a mother.

I don’t like the crafty part. I can’t make myself care about it. Looking at posts of other people’s children holding clever Valentine boxes wrapped in construction paper etc. reminds me that the business of decorating isn’t my bag.

And now I don’t have to think about anything related to any class parties, which feels like the best Valentine’s gift anyone has ever given me.

I do have three boxes of Fun-Dip Valentine packages that I will donate to charity.

Then I will celebrate this commercially-driven holiday with a big pink heart sugar cookie.

It’s enough.

Tiny Jaded Letters

Dear deer,

I am weirded out that 17 of you were eating the bushes and trees in my front yard and only my front yard. Why was my house the deer Mecca? Also, tonight marked the first time in my life that I have opened my front door and straight up hissed, sending 17 mule deer running.

 

Dear February,

I was kind of hoping you would impersonate March this year.

 

Dear March,

Thinking of you. With longing. No pressure.

 

Dear students who keep missing class and then want me to fill you in on everything you have missed,

Stop it.

 

Dear soul-sucking inversion,

Nope.

 

Dear maple doughnut I ate for lunch,

Yes.

 

Dear Husband,

Going to the pharmacy together to pick up meds shouldn’t feel like a date. But tonight it did.

 

Dear Unbreakable Kimmy Schmidt,

I can’t stop singing your theme song in my mind.

 

Dear my bed,

I am deeply obsessed with you. Fluffy blankets are better than crack. I think. I’ve never done crack.

 

Dear new day,

Hello. Bless you.

 

   

Winter Weekends Are…

A) Spilled cereal on the floor and the counter. Jack eats every marshmallow from the Lucky Charms and tosses the rest around the kitchen. Dross!

B) Chocolate smeared on the couch.

C) Charlie asking me 1400 times if I think Darth Vader/Kylo Ren/storm troopers/Han Solo/Chewbacca/Yoda are cool, and if so, why.

D) Dutch and me hiding in the laundry room to drink our daily sodas, else they’re commandeered by Jack.

E) Me wondering if I complain too much on the blog.

F) Pen marks in long, slashing motions all over the couch.

G) Jack falling asleep on the couch and wetting himself and it.

H) Me wondering how to make the couch go away.

I) Splitting up to manage both church and the family Super Bowl viewing party. “Normalcy” at the cost of the normal family Sunday.

J) So much urine laundry. So. Much.

K) Me having great writing ideas while I’m cleaning up messes or handling children and their anxiety meltdowns.

L) Me forgetting all writing ideas when everyone is asleep and I’m ready to write.

M) Charlie wanting to know why Darth Vader has buttons on his chest and why BB8 has an antenna.

N) Henry wondering what there is to eat in the house #bottomlesspit #teen

O) Dutch fixing plumbing issues because the house turned fifteen years old and it appears all the plumbing had a staff meeting and decided to break.

P) Dutch and me taking Jack on rides for fries, simply so Jack can leave the house.

Q) Sweeping.

R) Mopping.

S) Boys playing video games.

T) Praying for energy.

U) Playing Be Still My Soul on the piano.

V) Thinking about naps.

W) Thinking about spring.

X) Thinking about vacations.

Y) Bathing boys.

Z) Appreciating the white horizon. Snowy mountains. Long shadows. Glinting sun.

 

Winston & Olive

The other day as I was unloading half of Costco from my car, a black dog rounded the corner of the garage as I walked outside, and we practically collided. We both jumped, I squealed, and we looked at each other rather sheepishly. He wasn’t even a big scary black dog. He was old and gentle.
He surprised me, that loping black lab, then we each went back to the business at hand. Mine, carrying piles of groceries inside to keep the teens’ hunger at bay for another day; his, sniffing around the neighborhood while looking happy.

Charlie is obsessed with my dad’s new brown and white German Shorthair pointer, probably because it’s the closest he gets to having his own dog. When he had a sleepover at Grandma Shirley’s house, Charlie wanted to play with Winston, sleep by Winston, and deconstruct why Winston drinks from the toilet, because that is hilarious when you’re seven and you’re Charlie.

Winston is a good boy, even though Jack doesn’t think so. Jack, who once really liked dogs, is bothered by Winston pushing his wet nose into his space. When I see Winston’s obliviousness to Jack’s dislike, I feel like I am looking at two puppies.

My parents slip sometimes and call Winston ‘Olive.’

It makes me happy. And sad.

Olive is petite and gregarious in my memory. She doesn’t give a fig about many things. She’s simply Olive, a little spotted white pointer with attitude and a deep-seated sweetness.

I’m not sure how this became a dog post, but I’m glad it did.