Monthly Archives: April 2013

We’re Our Own Brand of Weird

Jeff and I saw a good movie called Mud on our date this weekend. Aside from the creepy couple sitting next to us (old man/young woman) and someone shouting out loud once in the theatre (post-Aurora, this really freaked me and pretty much everyone around me out), I really enjoyed this coming of age film.

It was about family relationships and second chances and having the courage to try again to make something of your messed up life. The Alabama adolescent characters Ellis and Neck Bone were terrific. It felt a little like a Mississippi River present-day variation of Stand By Me. 

Early in the movie, Ellis and Neck Bone use walkie talkies to meet up for some early morning exploring. It’s funny how a ten-second shot of a boy on a hand-held radio could transport me instantly  back five years to when Charlie was a newborn, Jack was a preschooler who felt like six preschoolers, and Henry was a big, brave, adventuresome six-year-old.

Henry wanted to explore and play outside with friends and not be tied down by his mom and two little brothers who couldn’t come along and play with him. But seriously, he was six. So Jeff fished around in his electronics menagerie and found a solution.

We handed H a radio. I tuned mine to the same frequency and we were set. While nursing the baby or giving Jack his afternoon sensory bath, I would periodically press the button on my radio and ask, “Henry, where are you? Over.”

“I’m on Thayne’s hill. Over,” came Henry’s prompt reply, letting me know he was two houses up the street, playing in our neighbors’ front yard with a pack of kids.

We wore out a couple of sets of radios in the following months when Charlie was tiny and Jack was adjusting badly to having a younger sibling.

It may have looked a little strange, but our radios were a low-tech solution to a difficult family situation.

On our date this weekend, Jeff reminded me over dinner that the current difficulties with a certain boy will surely improve. Like with the walkie talkies of yesteryear, times change and kids change, and different solutions will present themselves to help us muddle through.

In the movie, Ellis evolves from seeing situations and people in absolute black & white terms, to beginning to understand their nuances. I similarly find myself trying to remember that my strenuous life as a mother of four, including two who have special-needs, and one who is one-year-old (and thus a menace to his own well-being) is not a permanent state.

While various diagnoses are tripping us up pretty nicely in our daily living, they are not the finale. We are more than a little bit crazy in this household, but we just keep plugging away, people. We aren’t finished yet.

Syndromes, autism, anxiety, developmental delays, and social/emotional concerns? Yep, got it. Code Browns, sleep disturbances, and meltdowns over transitions? All part of the daily routine.

We’re our own brand of weird.

It is exhausting being this unique. But it’s temporary. Our buttoned-up lifestyle of school and therapy and doctors and poop and unreasonable fears won’t always be exactly like this.

It will change: like the walkie talkies which did their time and served their purpose, and like Mud, the man who made mistakes but doggedly moved on and made a new start.

It may move with glacial slowness, but times they are a changing. I can deal with it. Just don’t mess with my bedtime or my date night, and we will all emerge (relatively) unscathed.

Gatsby, Jackie Robinson, & A New Odyssey

This week the following things happened. (Stop reading now if you tire of my blog posts as lists) :

1) Jack woke one Thursday and decided some early-morning vacuuming was in order. He roused the bleary household. When baby toddled too near his vacuum, he pushed baby over, spent the waning minutes before his bus arrived sitting in time out, and then stormed from the house screaming as he ran to his bus. There he climbed the stairs, threw himself dramatically in the aisle, and howled his displeasure to Doris and Missy, his bus driver and bus aide, respectively. Jack is proof that I live with thespians, who have been gifted with a flair for the dramatic arts.

2) Charlie and Jack rocked their swimming lesson. Charlie can now float on his back without shrieking. Jack kept his swim trunks on the entire duration of the lesson, huzzah!

3) Truman decided that bum-scooting is so passé. He walks. It’s adorable. Why do babies look so tiny when they stand on their shrimpy legs with their sweet portly bellies protruding, and start to toddle?  They seem too small to be upright. Yet toddle they do.

4) Henry prepared anxiously for his first overnight scout campout on Friday. Tin foil dinner? Check. Giant backpack with sleeping bag, flashlight, water bottle, et al? Check. Boy belligerently informing his mom that she is being too overprotective by suggesting he bring a mess kit with a knife and fork? Check. Check yeah. And after all this, the campout was cancelled one hour before ETD.

5) Jeff and I saw the Jackie Robinson movie. This is my review: it’s a delightfully heartwarming period film about a wonderful man overcoming incredible odds because of his strength of character and the integrity of the people who stood at his side and supported him. It’s terrific because it’s all true and it really happened. And Harrison Ford has his first good old man performance as a gravelly-voiced old codger who propels Number 42 from the “negro leagues” to the Brooklyn Dodgers in 1947.

6) Seeing The Great Gatsby trailers on our date nights has inspired the hubs to read the so-called “Great American Novel.” My English lit heart is so proud. I must subliminally encourage this type of book choice. Perhaps I’ll whisper gently in his ear as he sleeps, “Fitzgerald-penned American masterpieces are so much nicer than post-apocalyptic battle pulp fiction, and they make date night even cooler when we’ve BOTH read the book upon which the movie is based. Sleep peacefully, ‘Dutch.'”

7) The back of my van is the sorry recipient of Jack’s sassy little attitude problem as a car passenger recently. The cargo area has been dealt repeated blows in the unholy combination of Cheez-It’s, animal crackers, fries, shredded photographs, Coca-cola, and water bottles with their contents. The resulting paste is gag-inducing and the very reason my car is old, crappy, and not going to be replaced anytime soon. (Author’s aside: whenever I tell Jeff about one of Jack’s Destroying The Interior of Mom’s Car Escapades, he inevitably replies with gusto, “Not in our NEW ODYSSEY?!” and we laugh.)

8) While the air was still cold, we spent the evening in it anyway, reacquainting ourselves with the backyard. Baby decided that slides and trampolines are fun and tire swings are scary. I decided that it’s time for warmer weather to come hither because dude, I’m ready to stop hibernating.

A Little List

A few thoughts, in no particular order:

1) Scout fund raisers where four teens and two of their leaders spend an hour raking the heck out of your leaf & bracken-packed backyard beds are the most brilliant idea ever. Spring yard clean up? Boom. Done. Thank you scouts, and thank you scout leaders!

2) Freezing spring temps are still better than freezing January temps. At least we have sunshine. And new green leaves and grass. Even if I am wearing layers and layers to keep warm. And even if the wind is straight off the tundra.

3) I struggled to sleep last night thinking of the people gravely wounded in Boston. They went to see the Marathon and now they’re missing limbs. And family members. The world can be so very sad and so very hard.

4) When the weather is freezing cold and snowy/rainy, my productivity is in the tank. I want my sweatpants and my down comforter and my ebook. Naptime, my children:  embrace it! Let’s all leave mommy to bask in the afternoon silence.

5) Babies make the world feel new. In my neighborhood this spring, babies Max and Afton and Hazel and Savannah and Emma have arrived with hope and sweetness.

6) When Jack is free from otitis media, he is a pleasure to be with. As of yesterday, his ears are clear of their latest infection and his disposition is once again rosy. He bounded off the bus today and immediately began vacuuming beneath the cushions of the couch. Then he vacuumed beneath the couch and the tv armoire, and in and around the crumby high chair, twice. Good work, Jacky. Let’s keep those ears healthy.

7) Toddlers are funny when they toddle with their arms out, zombie-like, and smile and babble. Now that he is bipedal, should we stop calling him “Baby”? We sure can’t seem to stop ourselves from applauding him when he walks all over the house.

8) SpongeBob SquarePants is funny and Plankton is hilarious. We see enough of it around here that we ought to know, see. Mrs. Puff cracks me up, too.

Stickers Doctor Asks a Question

Today the pediatrician asked me about how and when Jack was diagnosed with his syndrome and with autism. Apparently, in their practice which encompasses the entire valley, two more patients now have Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome.

Whaddya know, it’s big time now.

I recounted the story of figuring out Jack. We talked about pediatricians and specialists and office/hospital support staff who are either a) irritated by special-needs families who don’t fit neatly in little boxes or b) helpful and caring about special-needs families & who don’t expect people to fit in little boxes because boxes are silly and these folks are here to assist in a real way, however necessary.

We talked about the surgery schedulers at the children’s hospital who expressed annoyance at toddler Jack playing with the same electronic toy over and over for several hours (the surgeon got behind in his queue of surgical cases) in the pre-op waiting room while Jack played quietly, fasting.

We talked about the pediatric dermatologist who spent less than three minutes in the exam room with us, her hand on the doorknob the entire time, before leaving and having the residents explain what Cutis Marmorata Telangiectasia Congenita meant.

There were other vignettes like these, but they make me glum when I think about them. I told them to the pediatrician, and now I’m done with those stories.

We also talked about Dr. P, our pediatric ENT who routinely cleans the gunk out of Jack’s sickly ears, gives us hope that they will improve eventually, and always acts genuinely pleased to see us. We talked about Dr. H, the pediatric gastroenterologist, who was the first person to ask me about Jack–not his medical condition or his behavior–but rather his personality and his strengths. Appointments with her are fun and Jack-affirming.  Dr. C at the orthopedic children’s hospital treats our family like the highlight of her day, like we are a fun family, not a problem family.

While I talked, Dr. M listened and then found fluid draining from Jack’s cursed left ear. We left his office with stickers in hand, a plan for treatment and prevention, and a sense of mutual understanding about what people like Jack and me really want.

Here it is, we figured it out.

The thing that people want, especially when they are sick and struggling (or watching their kid sick and struggling) is this: just kindness.

Kindness heals.

Chachismo

Who is that little boy in the moon boots and elastic-waist camo pants, the unattractive neon Star Wars Lego tee and the ubiquitous hoodie? Who is he, and why is he shrieking on the sidewalk because he heard a fire engine’s siren blaring far off in the distance?

Really, who is that kid who has one volume at the grocery store, and the volume is LOUD?

Who is this boy who attaches himself like a barnacle to the backs of my legs when we enter a social gathering and buries his face in my knees? Who hides under the chair at grandma’s house? Who hesitates every time to walk into preschool without a gentle shove, even though he has been going there for two years?

Who is this boy, and why is he so afraid of using the bathroom at the pediatrician’s office that he screams as he sprays his mother’s purple sneaker and most of the floor while entirely missing the toilet?

This boy, the one hiding beneath the table, just exactly who is he?

I’ll tell you.

His name is Charlie, and he is my son.

He is five. He has shaggy brown hair with a rat tail because he is afraid of haircuts. He is afraid of new clothes. He is a bear to put to bed at night because he is fearful of sundry nameless things, and prefers sneaking around the house to sleep.

His fears make him behave differently. Awkwardly. Socially strange.

I wish his anxiety were not the first thing that people could see about Charlie. It’s not his defining characteristic, although sometimes it tries to be.

The traits which DO define Charlie? These are they: sweetness, empathy, concern for others, gentleness, love for his boys (as he calls his brothers), and tender-heartedness.

He loves books, especially ‘Twas the Night Before Christmas. He loves Curious George and SpongeBob SquarePants. He loves swimming and riding his bike and going to the cabin. He loves the iPad. He loves blueberries and French toast and apples and noodles and “Dr. Pepperoni.” He loves to built blanket forts and kiss baby with an “I love you, Baby.”

He is completely adork-able.

He may be a fashion folly in his hoodie and stretchy-waist pants and light-up Jedi shoes. He may act bizarre and terrified and awkward at the drop of a hat.

But he is kind and loving and curious and helpful. He is a boy who is often scared, but who regularly faces his fears. He may be psycho-screaming, but with my prodding and encouragement, by gum, he is doing things.

I sometimes remind myself that Charlie wears on his sleeve what many of us bury beneath many layers: his struggles. They are right there on the surface for everyone to stare at, which we (meaning me) are working on ignoring (meaning the staring). Our issues may be just as weird and sting us just as much, but most of us have learned to hold them out of the public view to some degree.

He is a precious boy, so vastly different from his brothers in so many ways (like eating fruit voluntarily and not vomiting all over the table at the taste of a grape or watermelon slice). Sometimes I’ve thought of him as an enigma. My enigma wrapped in a riddle, wrapped in a hoodie. But really he’s just Charlie, and I pretty much have him figured out.

He is an irreplaceable part of my quirky family of dudes.

Four Floors And A Funeral

This week, my boys have been on spring break, which was supposed to feature a camping trip to the southern part of the state, but which instead involved a trip to Idaho for Great-Grandpa’s funeral. We also did a crazy amount of dragging (old poopy carpet outside, en route to it’s Dumpster destination), measuring (planks of new flooring installed by the hubs), moving (furniture and children away from the construction zones), and admiring (the new floors that are deliciously poo-stain-free and a marked improvement).

While we didn’t get to take the guys camping, we did get to a) visit some grandma’s, b) enjoy a few springtime walks to the park, c) stay up late and sleep late (yay!), d) relish watching LDS General Conference (my favorite semi-annual weekend!), and e) swim at the rec center.

Here is a rundown of today’s swimming outing:

1) Jack was a champion pool guest: climbing the stairs to the waterslide approximately 2000 times, waiting politely for his turn (miracle! years in the making!), clapping for himself each time he swooshed out the bottom of the slide, and dancing beneath the various water features in the splash pool.

2) Charlie was brave and tried out the smaller alligator slide. Each time, he climbed up, sat down at the top, and called out, “Three…two…one…Go! Go! Go!” before jetting down.

3) I decided that community pools include a delightful mishmash of body types and fitness levels, and that nobody really cares how anybody else looks in their bathing suits. Not much gawking, plenty of water fun–as it should be.

4) Jack got mad on the drive home and poured a bottle of water over Charlie’s head and down his back. Charlie shrieked and cried. Henry shouted at Jack. I wondered if water must now be added to the list of Things Jack Is Banned From Having While Riding In The Car.

In other news, my husband did all the grocery shopping, which is true love manifest in it’s purest form. I also thoroughly enjoyed the first day of Conference, but particularly the words of Quentin L Cook, who spoke about finding personal peace in this imperfect world.

General Conference continues tomorrow and I certainly don’t mind a Sunday where we can stay in our jammies and listen to beautiful messages of the Savior.

Spring break: that’s a wrap.

Easter Events

A) We lost Jack at Grandma’s house today. Seriously, post-dinner and egg hunting, Jack was nowhere to be found in the backyard or the house. Or the street for that matter. Jeff saved the day and called off the search party when he followed the sound of vacuuming…and found Jack at the neighbor’s house. With the neighbor’s vacuum.

B) Charlie had a recent hard-core public meltdown over wearing a new pair of shoes (a problem I don’t really understand as I thrill over a new pair of shoes, myself). New clothes and apparently also new shoes are the stuff of Charlie’s nightmares. They terrify him in their newness. On a brighter note, today Charlie wore a whole new-to-him Easter outfit (thanks for the hand-me-downs, Cousin B!) including new blue boat shoes (adorbs!) to church today after totally and completely screaming his heart out, and finally just giving in to Jeff’s persistence and putting it on. Drama, people, drama. We know all about it ’round these parts. Couple of our kids seem destined to be thespians, so practiced are they in the dramatic arts.

C) I read a terrific novel about the bubonic plague in a small English village in Derbyshire circa 1665, which made me grateful that we live in a time where we don’t have a rat and a flea problem, and where we do have antibiotics (“better living through chemistry,” quoth my dear old dad). It’s a difficult subject to broach, but man, Year of Wonders sure felt real and so, so readable with it’s beautiful writing. And if anyone has read it and wishes to discuss it with me, what in the world do you make of that ending???

D) Easter was lovely. Aside from Jack squawking his way very, very loudly though sacrament meeting, the day sailed by smoothly, with some really lovely parts, standing out:  baby shrieking with joy over the little foam ball in his Easter basket, and gleefully tossing it back and forth with Henry for a good thirty minutes; listening to Mo Tab sing “He is Risen,” and feeling the beauty of that statement; eating a heavenly dinner with family al fresco while watching my boys play games on the lawn with cousins; and taking a sanity walk with my neighbor in the cool twilight with a hint of impending rain in the air. Delicious.