Monthly Archives: October 2013

Fear

What is fear?

Halloween is here, and my kindergartener is terrified. He doesn’t care about witches and skeletons and the like. He’s afraid of the unknown. The prospect of wearing his costume to school, participating in a costume parade, and joining in a class party are causing him panic attacks. The most highly anticipated day of the entire school year for most children is the scariest day imaginable to my Charlie.

I’m trying to decide if I’m going to force him on the bus in his Captain America getup, essentially throwing him to the elementary school wolves, or if I make my life easier and let him stay home. It would be one less costume parade for me to attend, and since I have three boys in three different parades at three different schools, it sounds pretty tempting.

I’ve said it before and I’ll say it right now: holidays like Halloween are stressful for kids with special needs. At least they are for mine. By association, holidays like Halloween are also stressful for me, the mom.

Let’s hear it for the beautiful nothingness of November 1st, everyone!

Speaking of fear…

We saw a terrifying movie on our date last weekend which made me realize that I have a deep-seated fear of outer space. I was so afraid in Sandra Bullock’s behalf as we watched Gravity, that I wanted to leave the theater just to make the anxiety stop. Costume parades don’t scare me, but the cold, empty, airless, nothingness of space makes my blood ice over.

Spinning into outer darkness with no hope of survival or rescue—stop it, I can’t take it! Panicking!

I’m one of these crazy types who secretly enjoys tuning her radio to an easy listening/soft hits station the day after October 31st to find the nonstop Christmas music. Maybe early Halloween morning I should put on my James Taylor holiday album so I can find my happy place. And help Charlie find his.

Therapeutic: adj. curative, restorative, healing

My five-year-old has started daily behavior therapy.

For a couple of hours every afternoon, he works on reading, identifying patterns, following directions, and honing his fine motor skills among other things. We both love it—he, because someone other than me is introducing lots of new toys and games into our home daily while giving him oodles of attention and reinforcement; me, because Charlie is learning and practicing useful skills instead of running away from me and jumping the fence to the neighbors’.

It’s a win-win.

We’ve been down the in-home behavioral therapy road before. Jack did it for about three years. He went from screaming at the sight of his younger brother, to sitting side by side at a little table with the same brother and driving tiny toy trucks through play-doh. Happily. Together.

Before therapy: we could not sit at a table together for mealtime. Jack got up and wandered off as soon as anyone else sat down. There was no eating, just the throwing of food with a side of shrieking.

After therapy: we can all surround the table at the same time…while eating the separate foods that my morbidly picky eaters find acceptable. Did I say we were perfect? I am just sublimely happy that Jack will sit with us at dinner time and nosh on his Dino nuggets.

Jack came a long way in his years of therapy.

His therapists were a helpful little army of believers in Jack. They were not put off by poo. They knew how to outlast one of Jack’s tantrums (which, btw, is the only way to change behavior). They were patient, but they were mostly just fun. They felt a little like family, in that they knew everything about us, yet they kept coming back. They put up with the irritating because they could see the big picture.

I still love them for it.

Our little five-year-old neighbor came to play after therapy today. As he and Charlie sat coloring pictures, our neighbor spied the therapy binder and asked what it was. I explained that it was a folder containing all the information for Charlie’s therapy.

“Does Charlie learn to do somersaults during therapy?” Our little friend asked.

“He does letters, and puzzles, and games,” I explained.

“Do you think I need therapy?” He wondered aloud.

No, little neighbor boy, you do not need therapy. You are bright, and kind, and focused, and well-mannered. But as for my family, we can really use some curative, restorative, healing therapy.

It’s therapeutic.

What Special-Needs Families Do

I’m going to write about what families with special-needs children do.

But before I get into that, I’m eulogizing the beautiful weather which has filled my home with sunlight and the dappled shadows of the bright yellow cottonwood leaves outside. We’ve reached the cusp of the lovely fall weather. It’s about ready to be blown out by something cold and wet. I’m not ready for this, mainly because I spent the last month being sickly indoors. I didn’t get my fill of our temperate October.

The imminent change in weather has me waxing nostalgic for fall. Fall is still here, but it’s morphing, so I am already lamenting it. I’m lamenting the end of the season when the boys play happily and at length outside, as I’m also mourning the option of leaving a few windows open for fresh air to cleanse the stinky house.

But I’m not entirely mournful. I sometimes surprise myself by summoning the perspicacity to figure out something meaningful. I did this recently. I figured out what special-needs families do.

You see, I run in some interesting circles where I meet people with disabled children. There’s my online support group, my real life support group, plus myriad friends who like me have large families which include a child (or children) with special needs.

As much as a family touched by special-needs may appear basically typical on the surface, said family is actually nothing close to being typical.

They are different. We are different. I’ve been mentally compiling a list of the differences. I could outline them for you in a tidy list, but there’s no need because the whole list boils down to one central factor.

Here it is. Are you ready for it?

Special-needs families are trying to survive.

That’s it.

It’s one little word and one major concept: survival. Just staying afloat.

It’s a stark contrast on social media: there are the moms of special children discussing feeding tubes, seizures, daily meds, oxygen, hospitalizations, appointments with specialists, insurance snafus, and guilt. Or like me, they are discussing behavior death spirals, nonverbal child meltdowns, IEP meetings, and Code Browns.

It’s less about vacations and home renovations, and more about therapy and sibling dynamics. Less flourishing; more hanging on by the fingernails.

A recurring theme among many of my online support group friends is the financial devastation which so often accompanies having a special-needs child—it’s the elephant in the room for many special-needs families, hiding in plain sight from friends and family who may be unaware it is there.

When special-needs moms tag themselves at a location, it’s likely at the children’s hospital.

This is not a condemnation of what people put on social media. I peruse it. I consume it. I think most of it is great.

This is just me finally putting my finger on a concept that has alluded me, but which I am beginning to understand.

The difference between my family and so many others is this: we are desperately trying to survive. Non-essentials typically fall by the wayside.

Here’s to Good Health

“Mom?” said my eldest, as I retrieved tomato sauce from the cold storage room.

“I’ve noticed you’re starting to cook again. I really love it.”

This is what happens when you spend the month of October in a netherworld of perpetual illness. But then you emerge, and make dinner, and a few people notice, and are happy.

Perhaps my rendezvous with October will be better next year.

Meantime, I made it through. Let’s eat, peeps.

How to Blow Your Top at Church: A Guide

In case you were wondering how to go completely off the rails at church, I’ve made some notes:

A) Decide you are fed up! with leaving church because a certain kid is getting loud and screamy, but then later coming back to church because you have a calling. A separate calling, in addition to your life-long parenting gig of your extraordinary child.

B) Decide to stay with said kid in primary, because that is technically where nine-year-olds go during Sunday School. Damn the torpedoes.

C) Watch tiny super-smart three-year-olds perfectly recite their speaking parts in practice for the primary program next week.

D) Gaze at your squirming nine-year-old who is loudly repeating “Shhhh!” without understanding the concept.

E) Realize it was a giant mistake to do this; this awful side-by-side comparison of Jack with all the other children.

F) Take Jack to the senior nursery, where he is warmly welcomed by Susan G., who is an angel person and loves to watch over Jack in the nursery.

G) Watch Jack settle down happily among a roomful of little girls who are half his size, to play with toys.

H) Hold it together through the rest of church……until your neighbors Fred and Shirley stop you in the parking lot and ask you what’s wrong.

I) Cue the meltdown (mine, not Jack’s). Unload to your friends about the misery of being the mom while being sick for three weeks straight, about being tired of the messes, about not having the energy to care about Halloween, about Jack & church, and Jack & his brothers, about Jack & the shredded house, about Jack & me.

J) Feel a little better, post-rant.

K) Feel grateful that F&S reached across the ravine where I stood with Jack, and snatched us back toward them. And held onto us. And made us feel like we belonged.

Bossy Toddlers Not Allowed: Or, Arby’s is Not Burger King

It’s been a loooong time since Dutch and I went on a date. Like a real date. With dinner AND a movie, and a stop for some groceries on the way home.

We are super romantic, see.

A real date is not running to get sandwiches at 9:00 pm while the little boys are asleep and the biggest boy is in charge.

A real date involves the cinema.

It is not sneaking away when people are sleeping and you want to be sleeping yourself. It is decidedly before bedtime.

This is the good news: after a lengthy dating dry spell, the hubs and I are back.

I wanted to link arms with my husband and skip, whistling through the theater parking lot, but Dutch isn’t cheesy like that. He doesn’t care to make a scene.

We talked about things, like the way our toddler bosses everyone around. Kid is such a sass pants.

Dutch reminded me of the road trip when my dad saw a freeway sign for Arby’s and asked everyone in the car, “Arby’s—that’s not Burger King is it?”

The only way to respond to that question, btw, is: “No Dad. Arby’s is not Burger King.”

We shared a chocolate malt.

We saw a movie.

We stopped for groceries.

We returned home to find that Jack had enjoyed himself a sweet evening treat of a heaping 5 lb. bowl of m&m’s. Seriously kid. Save some for the food storage.

We call it our date night, but it’s really just couples therapy. (Dinner + cinema) – children = a cleansing of the emotional palate.

Welcome to Our Messy Home

Since I have been under the weather, I have come to terms with living in a messy house. I actually saw this as progress, as Younger Me would have crawled from her sickbed to shine the bathrooms and put away everyone’s backpacks anyway.

I am mildly pleased with myself for accepting the squalor.

When Charlie created an art installation from the pumpkins and Jack Be Little gourds in our entryway, I left them as they were—which is to say, underfoot and all over the hall.

When Jack ate a brownie (or three) on the couch, I didn’t panic about the crumbs. I left them to get even more crumbly. Then I vacuumed them up a few days later.

When Jack and Charlie spent the end of Fall Break unloading the linen closet all over the upstairs hallway, I rolled my eyes and left it alone. It’s a wonder to behold: my upstairs hallway covered in rugs and duffel bags, quilts and a couple of small Christmas trees. Jack’s attention to detail is impressive; he wrapped the trees with lights, and then wrapped the lights with extension cords.

While I’m newly messy, I’m not a hoarder.

At my core, I’m really the anti-hoarder. This is because hoarders hate to part with material goods, even if it means that keeping them will result in a kitchen that looks like a landfill.

I’m anti-hoarding because I throw everything away. To a fault. Someone isn’t directly using it, but it’s on my counter? Get it out of my sight. Trash that pointless junk. Henry has started declaring that it would be really helpful if the half-eaten muffin and the homework on the counter were there when he returned from the bathroom.

Sometimes I dream of employing a house cleaner, who would receive the following instructions:

Please clean the bathrooms, thoroughly, before dusting/mopping/vacuuming etc. Any items (socks, toys, Christmas trees, shredded photographs, suitcases, castoff vacuums, etc.) which impede the cleaning may be tossed in the garbage without a second thought. Proceed with abandon.

The bottom line is that while I appreciate cleanliness, all my children, save one, lack the age or ability to be productive housekeepers. We are NOT a band of happy cleaners, collectively sweeping and polishing our way through the task at hand.

We are a one-woman show (with occasional bursts of help from Dutch, H, and the Chach), not caring overly much about the perpetual piles. Or the dirty floors. Or the furry bathrooms.

What can I say? Sorry not sorry.

Train Wrecks are Part of the Journey

Part I

I am convinced that the beastly illness which turned me into a seasick, shivering automaton for the past 12 days can be largely blamed on the fact that I am run down and weary. And possibly immuno-suppressed.

Being a wreck of a mother for the better part of the past two weeks because of a virus taught me a few things:

1. Don’t let yourself become so run down that you become weak and susceptible to any passing bug that desires to ruin your life for a couple weeks.

2. Don’t eat Campbell’s Chicken Noodle Soup when you “think” your upset stomach is improving. It is mighty bad coming back up.

3. Zofran. Where have you been all my life?

4. Mostly, just don’t let yourself get so blasted run down and weary, or you really will regret it.

Part II

I’ve decided that, though I love autumn for a great many reasons, “because it makes my life easier when people go back to school” is not one of them. Life remains very complicated.

It’s structured, but it’s crazy. It’s beautiful outside, but it is so awfully busy all the time. It lures you to the much-too-crowded zoo for an epic meltdown with one boy, and then rewards you with a follow-up death virus.

When we are in the throes of late July/most of August, fall is the mirage that keeps me plodding forward, hopeful. But the fall is challenging in it’s own way. This year, it’s kicking my can.

I do not wish for this post to be pure whine and discontent. It’s simply reality. I don’t make stuff up, to write about in this blog. I discuss what’s real and what’s happening. I used to self-edit these phases, but now I don’t. I write them down.

The train wrecks are part of the journey.

I’ll Move Past the Crabbiness. Probably.

I’ve been too much of a Negative Nancy of late.

I’m going to stay crabby (briefly) and blame the unwanted virus that has wiped me out for a solid week. Perhaps I shall speak directly to the disease.

Dear Horrible Stinky Virus,

I don’t like you. Here’s why:

You have made parenting especially hard for me recently. 

You have no regard for a person’s need to SLEEP through the night.

Thanks to you, I lack the energy to get the laundry done or the floors clean. We live in filth. Gracias.

Because of you, I learned all about severe dehydration. I now know that when I can’t keep any fluids down for a few days, I also lack the strength to get up off the bathroom floor after…..purging.

You taught me that standing and walking don’t work for dehydrated people, and that the room will spin. Oh yes, the room will spin.

You schooled me in paying a visit to the ER, where I was poked and jabbed NINE times (NINE TIMES, Mrs. Beuhler?) including on both sides of my neck (which is very vampirish in a not romantic sort of way) while looking for a vein in which to start an IV. 

I now know the thrill of tossing my cookies into a baggie while sitting in a hospital bed which is surrounded by a doctor, two nurses, my husband, and two of my children. So. Very. Glamorous.

Under your tutelage, I honestly began to appreciate water. Plain, glorious H2O. It makes a person feel human. It’s a simple pleasure. Life sustaining, really.

But please don’t come back again anytime soon, Virus.

Regards,
Me

I’ll move past the crabbiness. Probably.

Tonight I slurped homemade chicken noodle soup delivered to my doorstep by my friend Chris. Manna!

This morning my toddler contentedly sat next to me on the couch watching Bubble Guppies all morning as I dozed off. Thank you Littlest. You are momma’s helper.

After dinner, Dutch cleaned the very messy kitchen. He even wheeled out the shop-vac and suctioned up the garden of discarded food beneath Jack’s seat at the table. Yay, Dutch!

I think I will survive.



I’d Like Some Cheese With My Whine

There is a villain in my house.

Currently, he is lurking in the shadows, creeping from room to room, and leaving havoc in his wake.

It’s totally not even a happy, spooky Halloween-type villain either. Dude is a real jerk. A total bully.

Every special-needs family knows the villain called regression.

I seriously can’t stand this creep. He has moved in, uninvited, and has stolen my Jack away. He has stripped my son of so many of the skills and positive behaviors which he had mastered. Those happy times, they are gone now.

We forget about regression, or I do anyway. I tend to always think that things are humming along beautifully, and that we will continue to climb to new heights every blessed day. I forget that my children with special needs do not always climb upward and move forward. There is a lot of meandering, backtracking, leaving the trail, and frankly, completely falling off the mountain.

Charlie is no stranger to regression either. For a period of two months last fall, he was completely potty-trained. I scarcely believe it as I write it, but it is true. He is so far from that beautiful autumn of perfect potty-usage. Now at age five and half, he deuces in the backyard or on his bedroom floor most of the time. (I know, it’s TMI, but we talk about poop on this blog).

We were getting to the point with Jack where we could take him places, like Costco or out for cheeseburgers, and could reliably expect his good behavior. He was generally happy when he would arrive home from school, and could usually be found swinging in the backyard, or playing on the iPad while curled up on the couch.

But he has slipped backward. He is biting people at school daily. He is throwing things, like his brother’s high chair, across the room, when he gets mad about not getting what he wants.

He is a ball of energy. A whirling dervish. He is constantly seeking sensory input, usually in the form of shredding something important and dropping it off the side of the deck. He is all “Give me your documents, your recipes, and your photographs. I’m gonna shred ’em. Then I’m gonna sprinkle them confetti-like in the backyard. Deal with it, mom.” Or this is what he would say if he could talk.

I want happy Jack back.

I want Evil Dr. Regression outta here.