Monthly Archives: March 2012

Two by Canoe

Jack’s teacher emailed me a short video she shot of Jack riding an adaptive bike at school. She has been telling me in our daily correspondence about how much he loves it and how good he is at riding it. When I told her I would love to see a picture, I never imagined that she would just go ahead and film a short clip of him cruising peacefully around the school’s multi-purpose room and send it to me. I love technology, and I sure do love Miss Heidi.

Seeing Jack happily and proficiently riding a bike around his school makes me wonder what else he can do in the right environment and with the right equipment. I am always asking myself what other opportunities for learning to cope with the world we ought to offer Jack. I had a dream a couple of years ago that I was paddling a canoe through a bayou with Jack at the bow. It was a really peaceful dream. In it, Jack was very calm and content–not at all the way I would envision him behaving in a boat. When I thought about it later, I had a hard time reconciling the pervasive quiet and calm I felt paddling Jack through the still waters of the dream with the daily turbulence that we generally experience during our waking hours.

If I had to describe the maritime conditions of my life right now, I would say that we are sailing on chopping seas. The winds are blowing and the swells are consistently forthcoming. It’s not a typhoon, but it’s not quiet and still either. It’s busy. Sometimes it’s nauseating. At other times, I feel that we are figuratively in the trough of such giant waves that it’s impossible to see beyond the walls of moving water around us.

But hey, we’re still afloat. We may be bailing water at times, or focusing more on not capsizing than we are on drinking fauxjitos poolside, but whoever said that life was a luxury cruise through perfectly peaceful waters, right?

Before I abandon this nautical metaphor, let me add that Jeff and I have a phrase for a certain mood of a certain little pudgy baby at our house. He generally epitomizes sweetness–a placid and smiling little pudge, but sometimes he is in a state we refer to as “all hands on deck.” He’s chubby, he’s hungry, he’s curious, and he wants to be toted on a comprehensive tour of the house and personally witness all happenings therein. It’s okay, we’re all needy at times.

Jack does love water. As long as it’s a bearable temperature, water play is a positive sensory experience which brings out Happy Jack. He likes to drag the hose around the backyard in the summertime and liberally water the trees and shrubs. He would take six exuberant baths a day if we let him. Give him a fully-loaded spray bottle and the world is his oyster. Recently, Jack has been going to the pool at the rec center with one of his therapists. It’s been awhile since he was a regular there. Happy days are here again.

Within the past few weeks Jack has started saying “purple,” “bubble,” “papa,” “poop,” and “hot.” This spike in communication has been accompanied by a general sense of unadulterated happiness. He is giggly and smiley and silly and affectionate. He is curious and energetic, without being destructively frenetic.

It’s a really lovely phase he’s in (save the pooping in the bedroom part) and hopefully he will just keep cruising. Maybe that peaceful dream isn’t too far from where we are right now. I may need to borrow a canoe and locate a quiet bayou to test it out.


There is something really gratifying about revisiting a really beloved book from years ago and finding that it’s even better than you remember. Over the past year or so, I’ve re-read several classics which thrilled me on the first go-round. Most of them I devoured as a teenager. I thought they were grand, and I loved mentally checking them off my lists of “must-reads.” But as much as I loved them twenty years ago, they resonate exponentially more with my jaded thirty-something self. And this time, I’m not reading them to check them off my list.

I’m pretty sure I was around fifteen when I first read Rebecca, Jane Eyre, and Angle of Repose–three of my favorites. This time, my appreciation went deeper than relishing the mechanics of the well-told tale. I felt a greater understanding for the marriage which persevered imperfectly through many hardships in Wallace Stegner’s masterpiece. It’s the sort of thing that is beyond the realm of a junior high school teen to fully appreciate. As Jack’s mom, I found Rebecca De Winter repulsive because of the way she treated the mentally disabled character in Daphne du Maurier’s old school best-seller. And I felt greater kinship with both Jane and Mr. Rochester, simply because I too have lived a little and seen that life unfolds unpredictably and sometimes painfully. I’m pretty confident that Charlotte Bronte wrote about disappointment and trial so well, because they populated her short life.

Currently I’m sailing through The Great Gatsby. It was pure drudgery reading it for my high school English class. This time though, I’m enchanted by Fitzgerald’s poetic description of the hollow meaninglessness of materialism. I remember that during my junior year, Mrs. Thompson (Margot, as we sassily called her behind her back) pointed out the layered symbolism in the text, and pretty effectively described the function each character played. But it wasn’t until now that it all distilled upon my newer, sadder perspective, and the grown-up me could bask in this beautiful book about people seeking all the wrong things.

It makes me wonder if I will revisit my old favorites twenty years from now and find that I really missed out on some of the best insights about human nature, relationships, and facing adversity. Maybe I’ll have a wiser, more experienced perspective, allowing me see a whole NEW array of ideas emanating from good reads, previously read. I will say this, though: my ravenous reading of Gatsby has reinforced to me that life is about more than creating and fulfilling a bucket list. We are more than the sum of our parts. The physical trappings are revealing, but they do not define who we are.

It’s a notion that sparks and sizzles in my brain because it seems so fundamentally true. And it holds so much more meaning now that I am a mother than it did when I was a lass with lots of ideas about life, but little in the way of actual life experience. I’m so glad that Fitzgerald and Bronte and Stegner wrote so brightly and beautifully, and that Margot Thompson did her best to instruct me in deciphering it. I’m also glad that my life has played out in such a delightfully messy way, leaving me better able to appraise and value that which is good. I can’t say that I always enjoy being schooled; but it really is an education.

Jacky Wing-Dings

This week I received the most delightful email from Jack’s teacher. I always get a little panicked when I see a message in my inbox from one of Jack’s teachers or if I see that his school is calling, because the reason for the note or the call could well be to tell me that Jack has been lost, biting people, throwing laptops, or going to the bathroom somewhere other than the bathroom.

But this week, Jack’s teacher Heidi wrote simply to say what a delight it is to have him in her class. She wrote that she loves Jack, and enjoys the sweetness he exudes from the moment he steps off the bus with hugs for everyone. She said that he is so smart and is making great progress with his academic goals. It was a smiling-through-tears moment for me.

I’m always grateful when people see Jack as we do–rosy, happy, funny, and sweet. I attended a conference for parents of children with special needs a few years back where singer Michael Ballam gave the keynote address. He has a son with disabilities, and in his remarks he noted that all of us there made up a select group of people who collectively saw our children as people, rather than disabled people.

I don’t think that most people look at children like Jack and consciously do this. But I do find that sometimes the disabilities a person has can really get in the way of seeing the whole person. And other times, people simply may not have much experience with those who have special needs and might feel inadequate in knowing how to interact with them.

I met my support group friends for dinner last week and basked in their companionship and complete understanding of my esoteric problems. This time we talked about struggling to find sitters who can handle vomit, poop, and unpredictable behavioral outbursts. We discussed the challenges of incorporating a new baby into our already quite differently-functioning families (as two of us have recently done). We swapped stories of extended hospitalizations, irritating geneticists, and siblings who have needs too.

But the discussion which has been percolating in my thoughts all week was the one about taking our kids to church. They don’t judge me when I say that church attendance is a complete nightmare for me. Except that it’s worse than a nightmare because I am fully awake when it plays out each long and difficult Sunday. Currently, Jack just doesn’t fit in at church. It’s not that the people there don’t care about him–they do. But many factors stand in the way of making three peaceful, consecutive hours at church a reality for our family.

So these days, either Jeff or I stays home with Jack, as well as with the belligerent preschooler who has not yet taken a shine to attending Sunbeams and the preemie who can’t venture into confined public spaces until RSV season ends. We alternate teaching Gospel Doctrine each week so that one of us is manning the Sunday School class while the other is on kid duty. You know things are bad when you realize it’s WAY easier to teach the Gospel Doctrine class than it is to care for your three youngest alone at home.

We’ve been shaking things up a bit some weeks, having Jack do a few practice runs at “being reverent in sacrament meeting” along with “cooling it with the loud crinkling of the Smarties wrappers,” while Charlie sometimes attends Sunbeams with Mom in tow in preparation for the day he is ready to go solo. There is a lot of back and forth from our home and the church to get eveyone where they need to be. It’s kind of a three-ring circus, but that’s how we roll.

Parenting my children is sort of like taking a master’s seminar in learning the art of flexibility. It’s a quality I’m slowing starting to perfect. When I returned home from my support group dinner this week, I found that Jack had thrown a bowl of applesauce at the walls and drapes before knocking his little brother to the floor and smashing three picture frames on the floor. I wanted to be mad, but I just couldn’t summon the energy. I felt so buoyant from my support group fix, and so grateful for my long-suffering and über-cleaning husband, that I just chalked it all up to another thrilling day with Jack. We sure do love him.

Good Day, Sunshine

I’ve started a new addictive book and it’s about vampires. I know, right? What is it with the current vampire fascination which is permeating books, movies, TV, and even music (Vampire Weekend, anyone)? It appears that as a culture we are pretty reliably interested in things vampirish, particularly if they involve attractive young people and are somehow darkly romantic.

The book is ironically titled Sunshine and was written by Robin McKinley, one of my favorite authors of Newberry-winning acclaim. The writing is so much better than Twilight. I also like the way the story is set in a modern-day United States wherein the general population accepts vampires as a reality, following a decade of so-called Voodoo Wars, which outed the undead and pitted them against humans. There is more depth to the story (it goes beyond a sparkly boyfriend), and more layered history of humans interacting with fantastical creatures. Interestingly, Robin McKinley published her vampire story two years before Stephenie Meyer penned her wildly successful series.

But the fact that it is about vampires is beside the point. I’m hooked because it is captivatingly written. I just love a good story which grabs hold of my psyche and, much like crack, is almost impossible to quit.

I think Jack felt the same way today about the sunny spring weather. Where I simply desired to burrow under my quilt and read about the undead during baby’s naps, Jack felt the pleasant temperatures and the backyard calling to him. At first, he shed his clothing and attempted to soak up the sun in the buff. When we nixed that, he humored us by wearing pants and spent a delightful afternoon swinging on the swing and pushing the barbecue grill around the deck. Nothing says good times to Jack like maneuvering heavy, wheeled objects around the premises. He was in his happy place today, and I was in mine.

I think spring sends a resurgence of life into all of us, in one fashion or another. Maybe we strip off our clothes and bare our blindingly white skin to the sun, as Jack is wont to do. Perhaps we thirstily drink in the spring smells which waft through our open windows as we devour a delicious book.

Some folks might be inspired by the pleasant weather to just get outside and do something crazy. Like, for instance, the group of grown men we saw yesterday wildly riding giant big wheel/tricycle-thingies down a hilly street in my sister’s historic neighborhood. We had walked to the old, lovely cemetery near her home and sat nibbling on birthday cookies to celebrate my four-year-old. Within the course of a few minutes, we saw families walking with their young children, a funeral procession moving solemnly to the farther reaches of the cemetery, and a troupe of big-wheel-joy-riding “grown ups” wheeling downhill at insane speeds. I noticed no braking devices on those giant big wheels. I’m pretty sure the only stopping power those dudes had came from stomping and dragging the soles of their well-worn sneakers on the rushing pavement.

It was an interesting and unexpected tableau: toddlers and parents, funeral participants, and extreme tricyclists–all outside and invigorated by the tangible freshness in the air. It would be tough to top that sort of refreshingly quirky springtime afternoon. Unless maybe it involved an intriguing vampire tale. Or a heavy outdoor grill on wheels, depending on who you ask.


I have begun to mentally collect serendipitous quotations which I have recently overhead. They typically stand out from the bustle of the everyday because they are so apt, or clever, or randomly funny. I want to put them down here in this blog, to catalog these nuggets of wisdom and hilarity. They are too good to be forgotten.

1) “We are your parents, not your cruise directors.” I read this little gem on my friends’ Laura and Brandon’s blog. It is so succinct and yet also so seriously true. I want to high-five Brandon for being awesome enough to say it.

2) “Soda lives in garages.” My spunky three-year-old nephew Oliver made this observation recently to his mom. You really have to hand it to him for noticing and articulating something that is universally true in the households of my parents and sisters. He saw a commonality in the storage of one of life’s little gifts (that’s right–you need not send me your online articles about the negative side effects of soda, blah blah blah), and he pointed it out, as only a sassy preschooler can.

3) “WHY DO ARMIES HAVE GUNS?!” This question, bellowed loudly at my sister’s iPhone is directed at SIRI. Once again, Oliver is asking the questions. He asks SIRI this all the time, but SIRI just can’t seem to decipher kid-lingo, and inevitably responds with an “I can’t figure out what the heck you are talking about” type of response. Fortunately for the rest of us, Oliver keeps asking.

4) “All hat, no cattle.” Jeff favors this cheeky saying, which is useful to describe a certain type of individual–one with much bravado but little in the way of actual, shall we say, beef.

5) “Jack, say ‘apple.'” Charlie says this to Jack whenever he is trying to engage Jack in conversation. While he isn’t much of a conversationalist, Jack is reliably generous about sharing with us the handful of words which he can say. These include: apple (obviously), Mom (sigh of great happiness), choo choo, more, out, chips, Coke (that’s my boy!), and “Oh No!” He usually says the last phrase on the list with great volume and gusto during therapy when he finds a request by the therapist to be unreasonable. I recently had a dream where Jack was sitting at the table, when he suddenly spoke up, saying with perfect enunciation, “No, I don’t want to do that.” I think it makes sense. If you can’t say much, probably one of the most useful things you could learn to verbalize would be a “no thanks, and please leave me alone” kind of a sentence.

6) “Truman’s hands are the size of the Grinch’s heart before it grew three sizes.” My four-year-old neighbor made this delightful comparison last December when looking at my tiny newborn.

7) “Is this real, or is only happening in my head?”
“Of course it’s happening in your head, but that doesn’t mean it isn’t real.”
This exchange will be recognizable to many as Harry Potter talking with Dumbledore in a dreamlike setting which looks like King’s Cross Station in a perfected state. I love it. I find this quotation is applicable to many situations. One can’t help but feel reassured by this validating bit of wisdom, emboldened by the gravitas of Dumbledore.

Please share with me YOUR “found poetry” of overheard sayings which delight in their humor, truth, or eccentricity. Comments, please.

Life’s a Happy Song

Yesterday evening, after a prolonged session of interacting calmly with our son (we were not arguing with him, although he was definitely arguing with us!), wherein we calmly stated and restated the family rules, and calmly reminded him of the natural consequences to not following the rules, the boy ultimately decided to comply and walked away to take a shower. Yep, that whole deal was over a shower. Anyway, after he left the room, Jeff remarked, “If that kid had a theme song, it would be ‘Head Games’ by Foreigner.”

Even as we chuckled over the astute pairing of this song with the personality of this boy, for whom the whole world is one endless opportunity for negotiation, the gears of my brain began to spin. What songs best describe the other members of the family? If we each had a theme song which captured our essential self, what would it be?

Some seemed pretty obvious. Mine, for instance, would be “Zombie” by The Cranberries. The title alone is pretty much me in a nutshell. Combine that with the way Dolores O’Riordan moans and wails her way through the song and you essentially can hear my inner dialogue as I calmly interact with children who are not always calmly interacting with me. I totally loved that song in college. Little did I then know that I would one day BECOME an actual zombie, who inwardly sounds like wailing Ms. O’Riordan.

When I thought of another boy in our family, the only song lyric which came to mind was from an ’80’s hair band. Darned if I know the name of the song or the band, but the lyric says it all: “I want to rock and roll all night, and party every day!” That is currently how this young camper is attempting to do things around here. We don’t find him very charming between the hours of 2:00 and 5:00 AM, when he repeatedly tries to convince us that life is a party and sleep is for nerds.

Jack’s potential theme song seems most obvious. It’s got to be “Toot Toot Chugga Chugga Big Red Car” by the Wiggles (the original Wiggles, mind you, not after they brought in the new dude who seems to me like he belongs on Broadway and not in a goofy group of Aussies who dance and overact much to the delight of kids everywhere). This song works for Jack because he loves things that go “Chugga Chugga” and because his toot toots are kind of a big deal around here.

Baby’s song is easy. It’s “Pony Boy,” which is a delightful little ditty taught to us years ago by my sister, who learned it at a mom and tot music class. My little pony boy just loves to “giddy-up giddy-up giddy-up WHOA!” on my lap all the time. When you are four months old and just as sweet as can be, this is all you really need for a good time.

For Jeff, I will assign the theme song of “Better Man” by Pearl Jam. Unlike the girl in the song (“she lies and says she’s in love with him …”), I really am in love, and you really can’t find a better man than the one I’ve got. He’s calm and steadfast and has a delectably dry sense of humor, as well as a gift for saying something kind at just the right moment. He’s also got a knack for fixing things and is known in some circles as the one who can be counted on the fix the audiovisual/computer/electronic difficulties when they arise. You just can’t find a better man when it comes to handling the clowns who live in this house. Isn’t that right, Mr. Vedder? I couldn’t have sung it better myself.

Summer of My Discontent

I’m getting really paranoid about summer. It’s messed up, I know. People yearn for summer all year long. But I dread it. It is, unequivocally, the most difficult season for us to navigate. All the things that most people love about summer–unstructured days, kids on holiday from school, family vacations–are the things which make life at our house go from “sort of managing” to “completely falling apart.” Every year it’s the same thing: kids get out of school, Jack struggles with changes in routine, I work like crazy trying to fill the days with endless sensory activities, and then sometime around mid to late July everything starts imploding despite my best efforts.

Everyone asks if Jack goes to school in the summertime. He does, but it is only for a handful of days sprinkled over a few weeks throughout the summer. I appreciate that he has SOMETHING to go to in order to maintain his goals, but it’s not nearly enough. It’s always right around the time that his summer school wraps up in July that he begins his (now quite predictable) downward behavioral spiral.

There was the summer when, anytime he felt bored or mad, Jack would get into the cupboard of beautiful stemware I inherited from my mother in law, and theatrically smash one on the floor. There was the summer of pooping on the trampoline (watch out–those aren’t pine cones!). There was the summer of screaming and throwing things whenever he saw his then-one-year-old brother (which happened approximately eight dozen times each day). Last summer was the summer of epic car mishaps which featured Jack having massive meltdowns during car rides, Jack having to wear a dad-fashioned strapping device which kept him in his seat when his seatbelt wouldn’t, Jack kicking Mom’s head and the back of her seat while she was driving, and Jack smearing poop all over the interior of the car. Lest you think I am prone to embellishment, let me reassure you that I am totally not making any of this up.

I used to love summer. I WANT to love summer. I wish that having all my children at home together meant fun, carefree, memorable times. Historically though, it’s simply an exercise in endurance. I’ve mentally compared it to a marathon, except let’s get serious here–marathons end after just 26.2 miles. Our summers stretch on forever.

I’ve begun my annual spring brainstorming sessions wherein I evaluate where each kid is developmentally, and try to construct a plan for getting through it. I’m thinking about starting a weekly practice outing in the car where one of the therapists accompanies us to a) model appropriate car behavior and b) redirect any flying feet which might be aimed at the baby, the preschooler, or my head. With enough practice and positive reinforcement, Jack might come around and hopefully we can avoid a repeat of last year. I have lots of strategizing and organizing to do before June 1st rolls around. It’s a good thing I’m still housebound and it’s still snowing outside 🙂