Monthly Archives: January 2015

Observations

1. When Jack has honest to goodness diarrhea, I want the earth to rend beneath my feet and swallow us up in a giant crevasse. Death by chasm has got to be easier than cleaning up liquid poo splatters off the kitchen walls, baseboards, and floor.

2. Since my iPad is out of commission, I’ve been using a desktop computer. It makes me feel like a legitimate writer to sit at a desk in a room lined with books, instead of writing in my bed. Look at me! I’m acting like a grown up who types things in an office!

3. Winter needs to end soon because I can’t stop with the mint hot cocoa. Or the salt and vinegar chips. Or anything edible that strikes my fancy, actually.

4. Books are keeping me moderately sane this week.

5. My friends are angel people who go about being thoughtful. They do things like hand deliver a chocolate bundt cake on the heels of the worst month ever. They’ve been known to send, from several states away, a package of Ghiradelli chocolate on a morning of death by poo squirts. They can be trusted to come visiting teaching and listen and get weepy with me, and bring a lemon raspberry cupcake that I don’t have to share with anyone.

6. Kindness and friendship are the best gifts.

Ship of Fools, Car of Idiots

My webmaster, Dutch, and I were discussing ye olde blog last night. He’s a good sounding board, but I can’t watch him read my posts. It’s too painful. He will silently read through something that I personally found hilarious, then look up at me and deadpan, “It’s funny.”

Nerd that I am, I make myself laugh out loud all the time. But the hubs just keeps a poker face and says, “I like it,” before pointing out the parts he finds pithiest.

I like belly laughs, the kind my three-year-old rips when anything even a little bit funny happens. And yet, if I can make Dutch laugh, I know it’s really good. He’s a hard sell, but a good barometer for humor.

Some things make us both laugh, a lot. Like the other night when Dutch reminded me that during my entire growing up years, my family called the Persian mechanic who fixed our highly needy import car by the wrong name.

We called him Mossad. This is because Shirley, my mom, thought that’s what he said his name was. Their meeting was not ideal, however. “Mossad” shortly accused Shirley of being late for her car appointment. Shirley, who had just finished reading Not Without My Daughter, was subsequently unfairly wary of all men of middle eastern descent. She was highly offended and huffed, “I am not!”

Basically, things just started off weird.

That foreign-built car of ours needed plenty of service over the next decade and a half, so we saw “Mossad” all the time. His name was as familiar as that of a not-too-distant relative’s. Except that it wasn’t actually his name.

One day, like fifteen years after Shirley met him, my sister returned from picking up the car from “Mossad’s” and was all, “By the way, his name isn’t Mossad. It’s Mosen.”

Shock and disbelief swept my family. We were clearly clueless that the Mossad, the real one, is the name of Israel’s intelligence organization. We had basically been calling our Iranian mechanic the Israeli equivalent of “CIA” or “MI6.”

Poor Mosen. He had to deal with us.

 

 

 

Things Charlie Wants to Know

A) Why does Jesus live in outer space?

B) How many weeks does it take to get to the North Pole?

C) Are there toys in heaven?

D) How many years does it take to get to the wars that are far away in the arctic?

E) Why does Jacky attack?

F) What color are reindeer?

G) Does Santa have a dog in his sleigh?

H) What is Marfa Loosoo King day?

I) How old do I have to be to drive?

J) Can I take blue Doritos in my lunch?

K) Is it Friday yet?

L) Where are all the books about January?

M) Why do bad guys wear masks and have big beards and leather jackets?

N) Can we buy a machine gun like in the war at Walmart?

O) Can I be twelve years old?

P) When does Grandma Joyce come home?

Q) Why do aliens like to come to our planet?

Without January, Could We Really Love June?

Jack is doing better. Things aren’t completely perfect, but they are substantially improved.

He is on a new medication, which is helping him stay calmer, cheerier, mellower, happier. He is also sleeping fourteen hours per night, for real.

He still gets the angry, crazy face but mostly isn’t attacking people. We still have Code Browns and lakes of urine. We aren’t entirely confident that we can take him in the car without a second adult to act as bouncer. But compared to a week ago, we’ve come a blissfully long way.

Today my friend Shirley gave the lesson in Relief Society. The central theme came from a Richard G. Scott talk where he said (in so many words), “We experience turmoil so we can understand peace.”

It’s one of those concepts that shoots into your chest with an icy prickle of truth, then warms and melts as it resonates in your heart. Yes, Richard G. Scott, you summarized my life in that one sentence. Bingo.

Without sadness, what is happiness?

Without stretching and changing, where is progress?

If it weren’t for January, could we really love June?

Yesterday I told Dutch that I’m worried about Jack being happy in the years to come. He replied, “To Jack, happiness is a vacuum.”

I think I need to stop worrying what’s ahead and just embrace the reality that for my son, happiness is a trip to McDonald’s.

It’s a fluffy quilt wrapped around his head on the couch.

It’s Kirby, the sweet adaptive P.E. teacher at school.

It’s Hostess cupcakes and Reese’s peanut butter cups.

It’s bouncing on the trampoline.

Happiness is a bath, a sheet of bubble wrap, a stick of gum, a vacuum.

If I didn’t know turmoil intimately, I couldn’t appreciate peace.

If I didn’t have my Jack, I wouldn’t understand the gift of simplicity.

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The Beautiful Disaster

A friend of mine used to work at the fanciest hotel downtown where, among other things, he saw really big name bloggers come to attend conferences.

From my friend, I learned that these bloggers with the carefully curated blogs detailing their charming and beautiful lives are exactly as I mentally expected they might be.

They do things like stage photo shoots where they jump on posh hotel beds with each other. Look at how silly and spontaneous we are! (Never mind that it’s staged and someone was compelled to take the professional-looking snaps.) We are spunky, etc! Joie de vivre leaps from our Instagram posts into your face!

Another real-life thing famous mom bloggers do is take pictures of their feet, while wearing pointy-toed heels (generally patent-leather red, bright yellow, or suede animal-print), with their toes turned slightly inward. You know, because it’s girlishly sassy.

“What’s her beef with bloggers?” you may be asking yourself as you read this.

Well, nothing really. I do not mean to be such a pill (okay, yes I do). There is no real beef, except that I don’t understand them. Or rather, I do not get the collective fascination with them.

Outfits of the day. Their children’s eclectic, boutique wardrobes. Shots of their bikini bods at the beach. Shots of their workouts. Pics of the amazing raw dinners they are sculpting in their white, glossy kitchens. Close ups of their gorgeous faces and perfect hair with a caption about how they cleaned up a pee-pee mess on the bathroom floor that one time and it’s hard to be a mom on days like that.

So life for some folks appears essentially glorious. Slow claps for those fashionable bloggers. I salute them for achieving so much beauty everyday.

“But aren’t you a mom blogger yourself?” you may be thinking, astutely.

I am a mom and I do indeed blog….about my daily life raising children with disabilities. Same medium, different style and content. My life couldn’t be more different from the glamorous blogger’s aesthetic life. How do you make a Code Brown, psychotic episodes, and being on the phone with the psychiatrist and the special-needs school every day look pretty?

There is no choice but to tell it like it is. The ugly truth. The real deal. The beautiful disaster.

I do not mean to disparage the famous mom blogger. Clearly, she’s good at what she does. People follow her because they like something about the vision that her blog projects. While, I do not share the desire to peek inside one woman’s idea of a perfect world, I do admire anyone who can arrange the elements of their lives to appear so effortlessly amazing. Famous bloggers have their gifts, which include:

*Being good at self-promotion.

*Funding a photogenic lifestyle from an income-generating commercial blog.

*Being avant-garde in the style department.

*Consistently delivering their schtick.

They are successful for a reason. The real question, I suppose, is, why are so many us of enamored with this sort of blog?

I keep asking myself if I am writing from a place of envy. I don’t feel envious of what famous bloggers do. I wouldn’t mind the income of a fancy pants blog, and I seriously wouldn’t mind the trips they seem to always be taking to the tropics.

But raising children with disabilities, particularly a severely disabled child, renders me incapable of joining this chic and sexy blog world. I could no more be one of them than I could expect Jack to stop playing with vacuums and come help me craft a whimsical miniature village from paper, felt, and glitter. That life is completely out of reach for me, 100% off my radar.

I do not mourn this, but I startle at the striking differences between this life and the curated presentation of practically perfect ones.

I blog from a place of desperation. Writing down the weird, wild things that happen to us transposes some of the burden from my shoulders to the web, where people can read it when they experience beautiful blog fatigue. Please don’t see this as a cry for validation, honestly.

If the big name mom bloggers are the cool kids drinking green smoothies at the popular table in the school lunchroom, I suppose I am the girl sitting at a table in the corner with her two best friends, enjoying her PBJ while we make each other laugh about what happened that day in Honors’ English.

I like my friends, and my corner table, and my PBJ, and laughing.

I’d rather be me.

 

 

 

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Carry On

I’m going to be really honest.

It may sound a little angry, although I truly do not intend it that way.

If it makes you uncomfortable, I’m sorry. Now is your chance to back away slowly. Go ahead and close this window and carry on, darlings.

We have been in turmoil for the last month, scraping along every day with wild and destructive behaviors ruling the house and everyone’s lives. We’ve been in survival mode, even more than we typically are.

Last weekend, things hit a new low when Jack attacked me and his siblings, threw my iPad across the room (shattered it), and bashed his head repeatedly on the floor every time he went to time out.

It really isn’t sustainable to have your ten-year-old hurting people.

It’s possibly the most painful, helpless feeling to watch your son slam his head on the wood floor of his room. I don’t recommend it.

So we suffered through yet another holiday when the blessed structure of school was absent and nobody at the psychiatrist’s office was working.

You guys, holidays really kill the autism family.

There is no holiday from developmental disabilities. School breaks for a family like mine do not equal beach vacations or ski trips. They just suck everything out of moms and dads who have to hold it all together.

You can still back away slowly. That option absolutely remains. No judgment here.

Anyway, I hit a new low yesterday, when hope dried up and I wanted to get in my bed and never get out. I told Dutch that all the advice that one hears about taking control and making positive changes in one’s life does not apply when you have a kid with serious mental and behavioral issues.

Decide what you want to happen in your life. Set small, realistic goals which will ensure that you achieve it.

Sorry, but this total crap when my dream is simply to have Jack stable enough to ride in a car again without hurting people and causing car accidents. I can set all the goals I want, but they won’t change Jack’s disability, his sensory issues, his non-verbal state.

Step back from people in your life who are negative, toxic, or overly demanding. Learn to say ‘no’ more frequently.”

*buries head in hands and sighs*

It doesn’t work like that when the person having destructive periods of psychosis is ten and you are his mom.

Visualize your goals. Picture yourself accomplishing them.

Okay, stop it now. Please. When I envision a home free from violent outbursts and broken electronics, Code Browns and pee-soaked bedding being tossed by Jack from his window into the backyard, I feel sad, not empowered. It emphasizes the discrepancy between us and the families who ski and go to movies and drive in the car without someone trying to scratch their eyes out. Visualization is powerful, but it has it’s limitations.

I spoke to the psychiatrist this morning and we have a new plan that has rekindled my hope. Jack was happy when he woke up and he went to school eagerly and without drama. I’m not despairing.

And yet ultimately, I can’t magically make Jack better.

I am staying thankful and hopeful, but I’m highly attuned to the true fact that some things simply are.

Some things are what they are, and no amount of positive thinking or gratitude journaling will fix them. It’s just life. Welcome to mortality.

Breathe deeply and carry on.

 

 

 

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School Bus

This morning, Jack was pretty happy—a pleasant surprise. The second the bus drove up, he raced upstairs on some kind of a mission. He came trucking back down with an armful of vacuum attachments, which I was not about to take away from him lest I incur his wrath.

“Okay Jack, sure you can take those attachments to school! Stay happy, buddy, and be good today,” I called after him as he ran outside.

Joie, the bus driver, looked at us like we were nuts, but didn’t make a fuss about it.

My friend Heather sees what’s happening on the bus because they stop for her son after my guys get on. She updated me on the vacuum attachment situation:

Apparently Jack spent the drive to school passing attachments one at a time to Charlie, who then passed them to Kaleb, at which point, Jack wanted them all back. They figured out a system and it worked. Whatever.

I’m taking the Jack situation one day at a time right now. Sometimes I take it just an hour at a time. I can’t think too much about the volatile, aggressive kinds of behavior we are seeing now happening long into the future without sending myself into a tailspin of despair.

I don’t see this as denial.  I see it as mindfulness. Purposefully living in the moment in order to survive. And I had a doughnut for lunch.

 

Movie Theater Butter

On our date this weekend, I noticed that Dutch and I were the youngest couple in the movie theater by quite a bit. It seems to be a trend with us. We go to the cinema with retirees. Maybe this is because we like seeing art films? I don’t know.

Art house moviegoers are mostly quiet and respectful of the film-watching experience. They are people who want to watch the movie in peace, like us. I need two hours every week where where no one is climbing on me, where I do not have to clean up a lake of urine from the floor, and where everybody’s neuroses are silenced when I switch my phone to mute.

I need to watch someone else’s story instead of slogging through my own.

We see blockbusters and other movies in wide release too, which means that sometimes we sit in a packed theater next to loud talkers.

When we saw The Help, the guy next to me kept asking his wife what was happening. She would stage whisper back, although from her explanations, I could tell that she didn’t know what she was talking about. At one point, when a character was crouched and bloody, huddled on the bathroom floor, the guy asked, “What’s happening?” in a low gravelly voice.

“Suicide,” came the stage whisper for the entire theater to hear. And then, when she realized her mistake, “Uh…um…I mean miscarriage.”

When we saw The Book Thief, the man next to me would mutter things like, “good luck with that” and “this isn’t going to turn out well” to the movie screen. He also sighed loudly and sadly whenever something tragic happened. In The Book Thief, lots of tragic things happen, so the sighs kept coming. He also repeatedly tried to put his drink back in the cup holder of our shared armrest, but would only succeed in setting it on my leg.

Silver lining: Loud Talker with Drink did add some comic relief to an otherwise deeply sad story. And there were no lakes of urine for me to clean up.

 

 

Metamorphosis

Surreal.

It’s the best word to describe the past month of my life. Things happened that were just plain surreal and strange. At times I was underwater. Other times, I felt detached from the strange happenings in my life, as though I were standing next to myself, slightly shocked, observing.

Wild and weird things happened. Things transpired, like Jack causing near car accidents and actual car accidents. The attacking of family members. Biting. Kicking. Scratching. Screaming. A younger brother being pushed down the stairs. Extended periods of rage. And ultimately, a trip to the neuropsychiatric unit at the university.

I sat in the small, bare assessment room at the hospital with Jack, Dutch, and the psychiatrist a few days after New Years and felt like I was outside my skin, watching this strange event like an awkward scene in an art film.

It was quietly bizarre.

The on-call psychiatrist was very direct with us. She was empathetic and knowledgeable, and the three of us decided that admitting Jack at this point was not the best choice. Dr. Jessica had short hair and looked part crunchy, part intellectual. We learned that before becoming both a psychiatrist and a pediatrician, she was an engineer.

“Is this what people do when they don’t have a bunch of special needs children to care for?” I thought. Do they just keep earning multiple degrees and trying on impressive careers at will? Perhaps. And why not? We need analytical, smart, and compassionate mental health professionals.

It was a Saturday, so the place was essentially a ghost town, which added to the spare, dream-like quality of our trip.

Dr. Jessica adjusted Jack’s meds, outlined an outpatient plan for the next few days, and told us that in her professional opinion, we need to find childcare and take a two-week trip to Bali.

I do not disagree.

There was another moment during the long and trying Christmas Break when Dutch took over and I slipped away to meditate. I went to the temple looking for peace.

While I was there, I spotted a butterfly. It was actually a butterfly motif worked into the decor of the room I was sitting in, and when I saw it, something nudged me.

I thought, “Perhaps I am noticing this because life is not unlike being a caterpillar. Currently things are slow and we are figuratively crawling through the dirt. But someday, Jack and I and the rest of us will be like butterflies.”

I sat pondering my interpretation of this revelatory moment when a voice in my head said, “Chrysalis, not caterpillar.”

The voice spoke blatantly, if silently, and my mind was suddenly filled with an image of a chrysalis suspended, a delicate blob hanging from a twig.

This image of a tightly-wound cocoon altered my perspective of the life I am living.

It isn’t that now we are fuzzy caterpillars inching slowly along the ground. Rather, we are bound up in a whirlwind. It’s a sticky, transformative mess.

It’s confining.

It hurts.

It is the womb for a better, lovelier, wholly reinvented version of ourselves.
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Slice of Autism Life: Part Two

Once upon a time, I wrote about a typical family night in our home.

Here is another installment of the Family Home Evening spectacle, which last night involved:

*One three-year-old climbing in and out of a giant cardboard box, trying to close the flaps to shut himself in.

*One six-year-old climbing on the shelves, looking for a “book about Jesus,” but returning with a book about Yoda.

*One ten-year-old crouched in the corner, plugging in his new vibrating foot spa from Santa, who is good about bringing sensory integration devices.

*One thirteen-year-old offering the prayer, saying “bless Mom and Dad that they will survive the night.” He’s lived in this family long enough to know that praying for the parents to “survive the next few hours” is a frequent, worthy, and necessary supplication.

The lesson went like this:

Me: “When Jesus lived on earth, he taught us to love one another.”

Charlie: “Why did Jesus like donkeys and cows?”

Me: “A donkey carried Jesus’s mother, Mary, to Bethlehem. To love one another means that we care about other people and treat them with kindness.”

Charlie: “Why did Jesus like to have a big beard? What did the beard help him do?”

Me: “Lots of people had big beards when Jesus lived. When we love someone, we can find ways to help them.”

Charlie: “Baby, I’ll lift you into this big box!”

Henry: “Welcome to Family Home Evening, Goates style.”