Monthly Archives: July 2014

It’s All My Problem, Peeps

Charlie slept for a total of three hours last night. From 1:00 AM until 8:00, he was slinking around, changing clothes, eating, waking up his brothers, and pretty much not sleeping. I kept waking up to find him gone again, locating him, and putting him back to bed where I could see him. It would get quiet and peaceful. I would doze off. He wouldn’t.

He put on three different sets of pj’s during the night. At one point, I woke to find him fully clothed and had this alarming sense that he would sneak outside to play and make mischief, despite it being 1:30 in the morning and dark out.

I get spitting, flaming, intensely mad at Charlie when this sort of behavior snaps us into it’s ugly jaws. As I lay awake at 2:30 AM thinking about why I am so jaggedly angry at a six-year-old who won’t (can’t?) sleep, I decided that I’m angry because I’m scared. I’m afraid of the fact that I can’t keep Charlie safe and contained, even in the middle of the night. I’m worried he will get out of the house and get hurt while I am sleeping.

I am mostly scared that I have so little influence over my son. He only sometimes obeys me. His impulse-control is deficient enough that he basically does whatever he wants, the only barrier being someone physically stopping him as he howls and kicks in protest.

I feel powerless. It is such crap.

You know the type of advice that psychologists and therapists give for interacting with people whose bad behavior is affecting those around them? It’s generally all about setting boundaries, setting limits, communicating clear expectations, and refusing to let the bad behavior be your problem. Well guess what? None of that shiz works when it’s your kid and he’s on the autism spectrum and he has major anxiety.

All of my child’s bad behavior is my problem. It’s totally my problem. I am the liaison between my son and the world, and I by default absorb the blows when Charlie and the world don’t mix. I am the contact person whenever someone has a problem with the way my kid is acting. I am the frustrated maestro at the center of this whacked out, discordant symphony.

It’s all my problem, peeps. All of it. No one can swoop in and fix it for me either, despite my inadequacy. We have an involved psychiatrist, pediatrician and team of behavior therapists, but no one can change Charlie.

Charlie’s baby blessing, back when he was a pudgy little infant in the spring of 2008, was all about listening. Dutch’s blessing for Charlie was beautiful, all of it centered around the theme of Charlie having the gift of listening—to his parents, his brothers, his grandparents, his teachers, the people of his mission. I keep wondering when this penchant for listening will begin. Or if he is listening now, where is it going?

It’s a riddle. And I’m tired and apparently not good at riddles.

Daily Snapshot

Things I did today:

1. Dropped off Jack at camp in my pajamas with third-day hair and mossy teeth.

2. Finished a vampire/witch book. It was meh. Are we done with vampire/witch books? I think yes,

3. Wrote half of an article that’s been percolating for weeks while popping dark chocolate blueberry Acai gems like it was my job.

4. Moved a bunch of laundry, which basically is my job.

5. Watched Truman stand on the shaded lawn and fill the turtle pool with the hose, which was pointed at a soccer ball floating on the water. It spun and spun seamlessly on the glistening surface.

6. Made PBJ’s, which are actually just PB’s at my house because a bunch of my peeps eschew jam.

7. Was secretly pleased when thinking about the leftover chicken, rice, and salad in the fridge. I actually cooked yesterday, huzzah. And made enough for another night or two, hurrah.

8. Picked up Jack from camp.

9. Picked up my car from the shop.

10. Wondered if the AC was having issues since I. Could. Not. Cool. Down. Realized it was like 108 degrees outside with melting asphalt and such. Also realized I could be experiencing early-onset hot flashes. Yay.

11. Dosed meds.

12. Took a cool bath with my two-year-old.

13. Retrieved the contents of our garage from the island in the cul-de-sac where Charlie relocated all of the camp chairs, sleeping bags, coolers, foam sleeping pads, and bikes.

14. Locked up the contents of our garage in the storage room because Charlie.

15. Had an intense urge to purge the entire garage.

16. Had an intense urge to send Charlie to summertime boarding school.

17. Had an intense urge to put on my Tevas and walk over the mountain across the street from my house and not come back for quite some time.

18. Looked up at the sky at twilight and felt the weariness ebb just the tiniest bit. The sky was pearly and a bunch of clouds shaped like pink lips hovered over my house in a midsummer kiss.

19. Blogged.

20. Ruminated while sitting in this chair.

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This Particular Life

I’m not sure what undid me.

Was it Charlie screaming and sobbing in the driveway about toy guns while I finally picked him up and plunked him thrashing in the car?

Was it visiting the same two pharmacies four times in two days to fill the one stupid new prescription for Charlie that no one seemed to be able to figure out?

Was it watching the psychiatrist furrow her brow in sympathy as I described Charlie’s willfulness, disinhibition, and general tendency to fall apart when things don’t go as planned?

It might have been holding my non-verbal and very scared ten-year-old down for two separate sets of X-rays on the arm that had a visible break.

It very well could’ve been restraining a screaming red-faced Jack as the orthopedist reset his angulated bone.

Maybe it was when Jack lunged at me and tried to bite me as we drove home from the doctor’s office when I wouldn’t help him take the splint and cast off his arm.

Or when he poured a can of a Coke Zero on my bag in the car.

I’m not really sure.

But sometime during the tense drive from the orthopedic clinic to our house, with my left hand gripping the wheel and my right hand pushing Jack away as he lunged at me in anger about the cast-covered splint stuck on his arm, I vividly remembered a line from The Fault in Our Stars.

In the movie version, Hazel sits on her back lawn talking to Augustus on the phone. She says, “I do not want this particular life.” She doesn’t want a different life so much as she wants the same relationships with Augustus and her parents, as well lungs that work. She wants a life free of cancer.

The thing about this particular life of mine is that it’s ruled by autism and cognitive delay and anxiety. And today I wanted it all to go to hell.

Then I remembered what my friend Kristi said at support group. She said when her little girl with Vici syndrome was tiny, she mourned all the things her baby couldn’t do and couldn’t be. She mourned that her family would never be normal.

She lost friends who couldn’t handle the complexity of her life and her daughter’s limitations. She cared for Lila constantly, even sleeping with her so she could hear the seizures and prevent aspiration. She lugged the suction machine everywhere they went. She lost herself in mothering her immobile little girl, and found something precious. Something better.

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Kristi’s little tulip girl passed away this spring. Now her family is “normal” and she wishes they weren’t. She wants her blond, blue-eyed four-year-old daughter back, filling their home with light and her tangible spirit.

She wept over her plate of enchiladas when she told us, “My family isn’t special anymore.”

We fervently disagreed. We assured her that she will always be Lila’s mother, and that she is irrevocably, dearly special. That she has been since before she herself was even born. Lila’s gift to her mother was refinement.

My burden is different. The effacing, consuming, overwhelming parts are maybe not so different.

It’s not that I don’t want this particular life.

I mostly want the ability to handle it.

The Bell Tolls for Me

It’s time for some home improvements around here. Perhaps I’ll start soliciting bids on a few projects.

First, we need a bell-tower. My dad suggested this when I told him that each rare occasion that Jack poops in the potty, I have an irrepressible urge to pull out a megaphone and announce it to the neighborhood. “Calling all ships, Jacky did a BM in the toilet!” My dad thought a giant bell hung in a stone tower clanging to and fro would do a much better job. Jack poops, Megan clangs the bell. And suffers hearing loss, but all for a good cause.

Editor’s Note: The bell tower would be seeing little use, currently. But it’s mere presence might inspire hope.

Next I need an elaborate netting system, rather like those that college football teams string up on ropes and pulleys behind the goal post whenever a field goal is imminent. We would have it strung up around the perimeter of the yard atop the six-foot wooden fences along the property line. Much like keeping the kicker’s punt from smacking the fans in the bleachers, the net would corral all the shiz Jack and Charlie throw over the fences. Tonight it would’ve kept the contents of our recycling can on our side of the fence. (Me, secretly when Charlie’s attempts to launch empty cereal boxes over the fence fails: Joke’s on you kid. Suckah!”

The third project on my list is a cleaning system for Jack’s bedroom. I merely want something like the apparatus that resets the bowling lanes at a bowling alley. It doesn’t have to be fancy. When Jack takes a whiz or lays a brick in his room, the device would pick up his mattress as if it were a standing bowling pin, whilst hosing off the floor and pushing everything into a drain in the corner. Why somebody hasn’t yet patented this idea, I do not know.

While we’re at it, I’d like to add a dovecote in the backyard. No birds please. Does it look to you like I communicate by carrier pigeon? I’m merely drawn to the idea of a stony cylindrical structure away from my house that hearkens to an era before IEP’s and ABA therapy and my life’s other weird accoutrements where I could go to be alone and rend my clothing and pull out clumps of my hair and weep loudly.

The neighbors will think it’s the birds.

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Here’s Looking at You, Kid

Dear Readers,

I know who some of you are.

Generally, though, I don’t really have a clue who is reading this blog. I know some of you have special-needs children. Some of you don’t. Perhaps some of you just like a nice, honest catalogue of poop stories and anti-Pinterest reality tales.

Who am I to judge?

I’m thinking of this mysterious amorphous biomass of “blog readers” because I’m at a writing retreat in this charmed place.

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I know. Poor me, right?

I’m meeting writers and learning about writing and generally trying to hone my craft and so on.

You, dear readers, are on my mind. I’m thinking of you because you are my first audience. Instant publication via the miracle of the Internet connects my words to people who know the truth about my life and keep coming back for more.

It’s sort of amazing. And even if it were just me and my mom and my webmaster/hubs, Dutch, and some Eastern European porn sites checking in regularly here, it would be worth it.

What I want to say to you, readers, is this:

1. We discussed at this retreat the fact that nobody comments on blogs anymore because a) iPhones make it a giant hassle and b) people prefer to be lurkers, and c) maybe commenting on blog is passé, but I refuse to believe this. Comments are welcome, friends. Unless you are spamming the comments with sunglasses sales pitches. I like to hear from the people behind the Google Analytics stats. I really, really do.

2. Thank you for reading my words.

I mean it.

An Enigma Wrapped in a Riddle Wrapped in Stretchy Shorts

The challenges with the six-year-old have reached a deafening crescendo.

He won’t sleep much past 4:30 am, and the sleep med prescribed by our psychiatrist made him into a feral thing. Sorry Trazadone. You suck at the one thing you are supposed to do. You had one job.

He likes to sneak outside around 6:00 am and ring the neighbor’s doorbell several dozen times. Us: When you ring the neighbor’s doorbell many times, early in the morning it makes them sad.” Charlie, incredulous: “Why?”

He rolled the watermelon we bought for the 4th of July down the stairs, from the kitchen to the basement. It cracked open a Pac Man-ish wedge, turning one half to mush and dribbling watermelon juice all over the carpet. The other half was salvageable and quite tasty. Murica!

He dons his Captain America Halloween costume with padded muscles and pesters the kids in the cul-de-sac. Sometimes he carries his Civil War-era replica toy musket. I am choosing to see the mixing of historical time periods and superheroes/soldiers as a victory in creativity. Go Charlie…..er, Captain Americup (his word, not mine).

One evening while playing outside with friends, he told the neighbors to “Go to h*ll, you b*tches.” Wha???

People keep posting links on fb to anti-yelling articles, or maybe just one constantly-circulating article. Who knows. I refuse to read it/them because I am too busy yelling outside for my escaping Houdini-child to come home. And to stop with the salty language already!

I went to church last week and actually slammed the hymnal shut during the singing of “Home Can Be A Heaven on Earth” when it got to the lyrics about home being this paradise where “children listen and obey.” Whoever wrote that drivel either thinks it’s 1932, or clearly hasn’t parented two kids on the spectrum. What is this “listen and obey” you refer to? No comprendo.

In sum, keeping Charlie in one’s sight and out of mischief is possible. But be aware that it is rather like keeping a beach ball submerged under water. It takes all your energy and focus. All of it.

The Case of the Basket Case

It is approaching 100 degrees Fahrenheit here this week with nothing but blue skies and sunshine for days.

I, however, am retreating into a damp London fog. My new obsession with Sherlock Holmes is seeing me through these past weeks of intensive BM clean-up, behavioral flare-ups, and the fact that nobody ever goes to bed because…summer.

This summer is different because we have the miracle of Jack’s day camp, a glorious daily blessing which is making summertime manageable. He loves it. I love it. We all scream for summer day camp!

It has freed up my energies, which are now redirected at Charlie, who is The Boy Who Sneaks Out and Hops Fences at All Hours of Every Day.

I can’t contain him. He is Houdini in stretchy basketball shorts and a Minecraft t-shirt. He also has a thousand stipulations about shoes, socks, toy guns, and jackets (it’s hot out, yet he wants to wear them because it is part of his internalized routine).

Anyway, cool, damp London.

Sherlock Holmes. Dr. Watson. Mrs. Hudson. Mycroft. Mary Russell. These are my temporary support group, pulling me away from shrieking, escaping small people and giving me my own escape.

I devoured Benedict Cumberbatch on Sherlock and am now racing through Laurie King’s Mary Russell/Holmes series of novels. An older Holmes with a whip-smart female partner in sleuthing? Yes, I approve.

The thing about Holmes is, unless he is immersed in the thrill of the hunt while on an intriguing case, he is bored. Despondent. Difficult. He is also brilliant, observant, superior, self-absorbed, maddening, and probably Aspergian.

The thing about me is, I’m not brilliant or hyper-observant. I can be difficult and despondent. I loathe people who consider themselves superior. I don’t need engrossing detective work to give my life purpose. But I like bumming a ride with Holmes, Watson, and Russell in a good character-driven romp of a murder mystery.

It’s my version of hopping a fence to find something new.

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