Monthly Archives: July 2013

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Mad Meg here with a few more signs that summer is still camping out, hanging on, and wrecking my sanity:

A) The muscles in my shoulders are like bunches of craggy rocks. So much tension, so many knots. Also, so many kids. Who climb so many fences. And who spread to the four winds anytime they leave the house. Why is the grass always greener elsewhere, people? Why?

B) Jack has been spraying lighter fluid on my car and ripping up our picture books, despite the fact that I am his constant shadow. He’s like a red-headed David Copperfield. Without the tight black pants and sexy white shirt unbuttoned halfway.

C) Charlie changes outfits seventeen times daily (a rough estimate). At the end of each day, the laundry pile looks like the Duggars moved in, and Charlie has literally no clothes left in his closet. So he moves on to pilfer from his brothers. He’s enterprising like that.

D) Everyone is bored with all the usual summer activities. Everyone wants fresh new entertainment daily. Everyone can get real and make themselves a frigging quesadilla.

E) The vacuum is nearly toast, dragged and stuffed and mangled to an early death by a certain nine-year-old with a vacuum fetish. But if he isn’t harassing the vacuum, he’s creating artwork in the medium of lighter fluid. I choose life, and a dead vacuum.

F) I currently skip all photos of people on summer vacations in my social media news feeds. Glad you’re having the time of your life in some gorgeous place, peeps, but I don’t want to see it. Moving along. Let’s get back to laundry and protecting the garage and interring the remains of the dismembered children’s books. Also, let’s get back to searching for the children who have left the building and are off climbing some neighbor’s fence.

G) It is still July, for hell’s sake.

Space Cadet

We’ve entered the last three weeks of summer vacation. People everywhere are mourning summer’s looming demise, while I am hoping to simply get through it.

We are going a tad crazy. Also, we have entered survival mode.

Here are some clues:

A) On our way home from a family dinner tonight, the special-needs crew both removed their pants and gave the seats and the floor a good soaking. Our (not-new) car is so new that we don’t even have real license plates yet. But it surely has been initiated.

B) Jeff and I got away for a real date earlier this week. I noticed as we got to the movie that I was still wearing my clod hopper, beat up orange sneakers. With a red skirt and a blue stripey shirt. The whole ensemble screamed “Space Cadet.” On the bright side, the hubs pointed out that my ugly orange comfort shoes matched my orange phone case.

C) Jack is stuck on his “shred” cycle. The AC vents rustle eerily round the clock with their contents of paper shards and ripped up photographs stuffed inside. Boxes and bags of chips, crackers, and cereal are disemboweled, simply for the crinkliness of their packaging. Anything that can be broken into bits and sprinkled in the dogwoods flanking the front path, will be.

D) My subconscious goes walkabout. I daydream about how to organize my days when school resumes, and then I chastise myself for thinking about it because it is too too soon. Stay alive! Keep your eye on the prize, sister! Think about summer and your pee-pee car and your shredded house, not the beauty of an autumn day when structure reigns and there is space for a deep breath.

E) Also, think more about your footwear.

Here Is My Card

Have you heard about how parents are creating business cards of sorts for their children? Apparently this is a thing now, at least among some up-and-coming parenting-types.

They use their child’s card as a way to exchange contact information with families they meet while playing at the park, for instance, or maybe as a way for their toddler to begin networking before the academic rush of Pre-K begins. Who’s to say? Even the young can learn to schmooze, right? Babies are naturals at this kind of “winning people over with a drooly smile” kind of interfacing.

While a calling card isn’t really a new idea, it’s a novel idea in today’s culture of electronic communication. And it’s original because it is intended to market a pint-sized member of the family. Perhaps the Royal Family of Britain is already on it. Maybe little Georgie has a design team currently plotting out his card.

I haven’t jumped on this trend, probably because I don’t do Pinterest (we would have ugly cards), and I’m really bad at schmoozing.

But I recently saw a calling card designed by a mother for her daughter with special needs and I fell immediately in love. I thought it was so great that I wanted to re-visit my defunct Pinterest account and pin it, for Pete’s sake.

This preteen girl’s card began with all the things she can do, like express “more” and “enough,” and communicate with the help of an electronic paddle near her head; the back outlined the specifics of her disability for teachers and therapists, neighbors and peers.

I think everyone on earth could benefit from a card like this one, telling the world, “Here is what I can do.” It’s a real mood-booster to see one’s strengths listed factually and indisputably. If the world then cared to know the rest of the story, the why’s and what’s about the way we are, they could flip the card over and read up.

My family’s card (aside from being aesthetically disappointing), might appear as follows:

We are a family with four boys. We can:
 * Eat cheeseburgers, chicken nuggets, and fries in a booth at AstroBurger without making too much of a scene (and it only took years for us to accomplish, woot!)
* Ride in the family car, keeping our seat-belts buckled and our pants on (most of the time). 
* Pound a 24-pack of mom’s Cherry Cokes like nobody’s business.
* Keep teachers, bus drivers, and sitters constantly on their toes, thinking outside the box, and upping their game, etc.
* vacuum!

The back might read:

Among the six of us you’ll find autism, ADHD, anxiety, Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome, social phobia, communication disorder, chronic diarrhea, allergies, tenacity (i.e. stubbornness), willfulness, the predisposition for destruction, and plenty of opinions. Pleasure to meet you.

My personal card might say something along the lines of:

* I read (but only what I want to read, and nothing more)
* I blog
* I clean up lots of poop
* I manage a family of unique little people, which leaves little time or energy for much else

And on the back:

* I suck at party-planning
* I loathe Braggy Braggertons
* I stress eat (esp. dark chocolate coconut almonds, right out of the freezer)
* I say no when people make demands on my time and energy, because my supply of both are limited and my mothering job is unusually demanding. 

I just may need to get some of these ugly little suckers printed up. I’ll be handing them out at Back to School Night and at church.

High-Functioning is Hard Too

Often when people hear that I have children with special needs, one of the first questions they will ask is “So, are they high-functioning?” I love when people ask me questions about my children. I appreciate the brave soul who looks past our strangeness and instead of fleeing or ignoring, has the fortitude to try to understand us. So muchas gracias, people with questions!

High-functioning sounds like a positive, so my guess is that we see it as a silver lining to a difficult situation. It’s also a term that many of us hear frequently in association with people who have disabilities, so we feel comfortable tossing it around. Maybe, in fairness, some folks don’t know what to say. So they look on the bright side and ask this, because it feels like something good which they hope applies to us.

An acquaintance I saw at the zoo once asked me this about my now nine-year-old (who dwells far, far away from the land of high functionality). Jack was in nuclear meltdown mode, screaming and tantruming on the ground because the full-to-capacity zoo train had left the station without us. Our conversation went something like this:

Me: Good to see you! This is my two-year-old, who has a rare syndrome and also autism.
Her: Okay, got it. So is he high-functioning? 

I remember gazing at my flailing, bellowing red-headed toddler, splotchy from kicking up a mad stink in the line for the zoo express on that overcast fall day. I didn’t even know how to respond. One possibility I wish I had thought of in the moment: “If by high-functioning, you mean unable to tolerate disappointment, wait our turn, or communicate effectively, then yup, we have totally nailed it.”

I hate to be the dark looming thunderhead in this situation, but I am about to rain on this parade. High-functioning doesn’t mean easier. I know, because I have two children with special needs, one at each end of the spectrum.

High-functioning simply means you have a different kind of hard.

In some ways, high-functioning is actually harder because people expect more from a kid who appears pretty much “normal.” When people see my obviously mentally-impaired son, they don’t expect the same things of him as they would from a typically-developing kid.

For me, it means that my high-functioning kid is able to join in a typical preschool and a Sunday school class, and play with neighborhood friends, but will act completely inappropriate for his age at times when he is anxious or afraid. It means he is not fully potty-trained at age five, and doesn’t care to be. It means we have loud public meltdowns about shopping at Costco or sharing toys.

High-functioning means that some of the time you look the part of a regular kid, but much of the time you are acting very much like a person with special needs.

For a parent, it’s not easier. It’s just different. It’s an unexpected, challenging ball game, whose rules I don’t understand.

And that’s all I have to say about that.

Little Prince

Thanks to the Internet, we now have instant, round-the-clock access to everything we didn’t know we cared about. If the Internet were a hipster, it would glare at us over the chunky rims of it’s nerd glasses while stirring it’s mug of chai and snark, “You’re welcome.”

I mean really, I saw a headline today stating that the royal baby left the hospital swaddled in Aden and Anais wraps, buckled in a Britax infant car seat. Is this for all the royal baby watchers, the ones who have held off naming their newborns until they hear the prince’s name so they can copy it?

While everyone in England is feeling ducky and brilliant about the royal newborn, I just keep thinking that the poor kid is already a celebrity and he’s only one day old. His image is already flooding the Internet. He will be surrounded by security his entire life.

What if he simply craves a quiet life with freedom to come and go as he pleases? What if he doesn’t want to be a royal or a celebrity? What if he stutters and doesn’t want to be king? (I know, that already happened. I loved that movie).

I frankly would abhor a giant international media spotlight glaring into my life. I couldn’t do it. I wouldn’t have the grace and poise of the Duchess of Cambridge to smile and wave at the hordes of spectators who came to see my firstborn child.

When I left the hospital with my first baby, I was sleep-deprived and stressed-out. I totally wasn’t wearing a summery frock and my hair was way less perfect than Kate Middleton’s. But at least I didn’t have an army of paparazzi camped out to see what my baby was wearing in his new little baby bucket. I like the option of anonymity. I like flying under the radar. I favor privacy.

I suppose there are worse circumstances into which an infant could be born. The new prince won’t lack for opportunities. And he will likely get to spend some quality time in Balmoral Castle in Scotland, which looks completely magical.

Anyway, about the Internet. It also turns up the fabulous. I also saw this Buzzfeed headline recently: Woman Attacked by Pack of Adorable Little Goats, which sums up my life in a succinct, surprising way.

Thanks Internet. You are big and random and over-reaching and funny. Now go back to posting royal gossip, along with pics of your lunch on Instagram.

G’day Rosie the Riveter

There is this annoying quote that keeps popping up in my Twitter feed. It says something like, “If you hate them in the morning and adore them in the evening, you’ve got yourself a family.”

Whoever said this got it backwards. It is just dead wrong. When I wake up from a respectable night’s sleep on a bright sunny morning, I love my people. The day is fresh. My mood is light. We can do this, folks! You are my beloved babies and I am your Rosie the Riveter!

But after twelve hours of tantrums, vacuum destruction, Code Browns, plus the ever-replenishing laundry/dishes/messes, I don’t find them charming. I find them irritating.

See what I did there? I just admitted that I am annoyed by my children, pretty much at the end of every day. Scandalous, but honest. I’m surrounded by people who need help, things that need doing, and isn’t it bedtime yet? I’m just one woman, for Pete’s sake! A woman who could really use some adorable minions or helpful cleaning fairies!

If I were writing inspirational quotes and circulating them on various social media, they might read more like this: “If you joyfully kiss their rosy little pudge faces in the morning but want to drop them off at a remote desert location to fend for themselves in the evening, you’ve got yourself a family.”

Or this: “If you brought them into the world with love and tenderness, but now are filled with boiling fury over their apparent inability to leave a room unshredded, you’ve got yourself some kids.”

Another possibility: “If you thought parenting was going to look like a Pottery Barn magazine spread, but find that it more accurately resembles Chuck E Cheese on a two-for-one Saturday coupon day, you might be a befuddled mother.”

This could be why no one is asking me to write inspirational quotes to circulate on the Internet.

Mad Meg the Witch

I think I need a name for my alter ego. It’s that part of me—my other self who quietly watches most of the time while I handle life, but who occasionally kicks the door down and yells at everybody to shut up and listen to her.

I recently attended a writing workshop where one of the teachers spoke of her habit of using the name Nasty Louise on her blog whenever she needs to cut the crap and say what is on her angry mind. Life gets real? Nasty Louise makes an appearance.

My friend Angela from graduate school often used the phrase snitty little woman, as in, “The children (or subordinates or airline staff, etc) are being belligerent; must be time for snitty little woman to show up and get things done.”

Dr. Jekyll had Mr. Hyde, you know. Not that I plan on getting all gruesome and murderous in my spare time like that Victorian nightmare-of-a-family-practitioner.

I just need a name for my latent other self who lurks around and once in awhile surfaces to blow off steam. I’m thinking about Witch Woman because I would so love to be considered mildly weird in the sense that “I see your fortune, child who refuses to go to bed, and fate will not be kind to you.”

It’s a viable contender.

I’m also considering Mad Meg, because it’s alliterative (duh), and because for a compact little word, mad packs a wallop. I mean, as an adjective, it has eight commonly used definitions. My favorite: disordered in mind (clearly), carried away by intense anger (yes!), and marked by intense and often chaotic activity (my life in a nutshell).

Mad Meg threatened to show up this afternoon when Jack took a bunch of peanut butter cups and mashed them all over the back of the car, carefully cramming them into the crevices between seats and into cup holders. He is such a maddening little pack rat, always seeking to shoehorn random crap into tiny spaces. Give him a stick of gum and he will chew it up and stuff it into the closest electrical outlet.

It’s enough to make a mother completely loony, I promise. If you haven’t ever cleaned melted chocolate and peanut butter out of the crannies in the back of a mini van, I will happily summon Mad Meg the Witch Woman, who I keep on retainer; she will vehemently tell you all about it.

An Epistolary Post

I’m not much for writing letters anymore. These days I can scarcely summon the time and space to pen a thank-you note.

My grandmother and I used to write letters about snippets of our days to each other. She only lived about an hour away, but she was mainly housebound and also refused to telephone much because of her über frugality. She simply couldn’t tolerate paying for many long-distance phone calls. So we wrote down random things and put a stamp on it.

But nobody actually writes a letter anymore. It’s archaic. We just text. Or message on Facebook. Or send email. Letters are so vintage. Especially when written in a lovely cursive script, which no one does anymore either (except my MIL).

And yet, I’ve been composing letters in my mind all this week. I usually don’t get beyond a few lines, such is the state of my Swiss cheese brain in the summer.

This is the one that I mentally edited all yesterday evening:
“Dear School District (cc: Self-Governing Charter School),
We no longer live in a primarily agrarian society. I do not need my children to till the soil and glean the harvest during the summer months. Just thought you might like to know.

A mother who would be okay with evolving to a year-round schedule

Today I wrote this imaginary note to our pediatrician:
Dear Stickers Doctor,

Thank you for telling me today that my children are not “weird” or “different,” but that they are unique. Thank you also for telling me that when we come into the office, you adjust your diagnostic and treatment methods to fit our “uniqueness,” instead of expecting us to adjust to you. Thank you for  getting it.

With Gratitude,,
The mom who you called “patient” and “not a helicopter parent”

To the salesperson at the Nordstrom Anniversary Sale:
Dear Clarissa,

While I appreciate your input and respect your fashion-forward eye for trends, I cautiously submit that I do not feel that I can pull off a bootie. At least not currently. Thanks for thinking I’m hip enough to give these boot/shoe hybrids a go.

The customer sipping the 32 oz. icy beverage while trying on shoes

To my mom:
Dear Mom,
Thank you for giving birth to me in mid-July, which coincides nicely with the Nordstrom Anniversary Sale. It’s a lovely annual event at which I get to select my own birthday gift and feel somewhat on trend.

Much Love,
Middle Child

And finally to my son:
Dear Boy,

Thank you for being the brother who is the Pied Piper of all the other brothers. They love to be with you, and I love that you let them (even though being seen with little, unique brothers isn’t necessarily cool). You are a gem.

Hugs & Kisses,

Prairie Vigilante

My alter ego, the Witch Woman, has taken over. She is laying down the law in this lawless house on the parenting frontier. She is stomping around in cowboy boots and waving a shotgun while cussing at the prairie varmints.

If the people in this house want to live to see another desert sunrise they had best consider the following house rules:

1. We do not stuff French fries down the seat belt holder in the new (to us) car.

2. We do not stuff fruit snacks and sweaty socks beneath the couch.

3. We do not poop in the backyard, the front yard, the baby’s room, or one’s pants.

4. We do not stuff bits of Clif bars down the AC vents.

5. We do not stuff toothbrushes and chewing gum down the drain of the bathroom sink.

6. We do not change clothing fourteen times per day, leaving a trail of tears and laundry for the bitter house laundress.

7. We do not throw the flatware in the garbage can when tossing out empty applesauce cups.

8. We do not open granola bars simply so we can shred the wrappers, discarding the unbeaten bar on the floor.

9. We do not run away, climb a fence, or toss shoes into the neighbor’s backyard when a parent asks us to come inside.

10. We will get our act together or so help her, the Witch Woman is going to go ape.

A Bike of One’s Own

At dusk on a summer’s evening, the neighborhood kids like to ride their bikes around the island of grass and trees in the cul-de-sac in front of our house. It’s a suburban Circus Maximus.

There are ride-on John Deere tractors and jeeps alongside trikes, scooters, and two-wheelers. It’s rowdy and slightly dangerous, so obviously nobody ever gets tired of it. Bedtime, schmedtime!

Jack can’t join in, though. He is too big for the toddler toys and the big kids bikes are beyond his current ability. So he sits on the utility box next to our driveway and puts his feet up on the big rock in front of the utility box (strategically placed after a city worker backed his truck into said box. I digress).

Jack watches everybody else. Cue the sad REM song, folks. This is a sight to break a parent’s heart.

While we should probably just be happy that Jack no longer takes off running down the street like in days of yore, we want him to be able to join in the fun. We want more for him than to sit obediently on a rock and not run away. Although let it be known that we are supremely grateful that he will sit obediently at times and not run off down the street (which in autism lingo is known as elopement. I don’t get it either).

A couple of years ago we tried to buy Jack a giant tricycle made for kids with special needs. It turns out that such trikes are a) expensive and b) difficult to acquire. We tried to get him one, but the company stalled and our Bike For Jack project failed.

This summer we tried again. We reinvigorated the project and found something better: a three-wheeled bike for grown-ups in sweet black cherry, with a cargo basket on the back which my eldest child described as “sick.” We bought it, and this time it was delivered as promised (thanks!) Suddenly, Jack has a bike of his own. Virginia Woolf would approve.

Except that Jack is a bit of a wild card on that bike. Steering? It’s optional. Brakes? Those are for nerds. I spent a sweaty, fruitless evening teaching Jack to steer his bike and to squeeze the brakes on the handlebars. He just kept swatting me away. My nonverbal son was telling me to buzz off.

“This is going to be a problem,” I predicted to Jeff. Sometimes I hate it when I’m right.

Jeff sent me this text the next day when I was out and he was home with the boys:
Wasn’t looking and Jack jumped on his bike and headed downhill. He crashed into the neighbor’s car. Bike may be toast, it’s all bent up. He has a goose egg but is acting okay. Maybe the bike wasn’t such a good idea after all.

One forgiving neighbor + one handy husband + one resilient child later and everything is going to be okay, more or less. The rad fenders sadly didn’t survive, but I learned the following lessons:

1. Don’t live on a hill if you buy a sweet red three-wheeled bike for your special-needs son.

2. All hell may break loose when the mom is away.

3. Understanding neighbors are a gift.

4. Maybe one shouldn’t knock sitting on an electrical box with one’s feet on a rock. It’s safer than careening down the hill and into a neighbor’s car, and the view isn’t bad either.