Tuesday, October 27, 2009
So what was it THIS time? Jukie’s newly acquired habit is throwing glass. Yep, GLASS. He prefers to throw drinking glasses, but in a pinch he’ll choose a ceramic tea party set of his brother’s or a picture frame. After he threw a cocktail glass to the ground in a Baltimore bar last month, he and his dad were asked to move next door to the adjoining restaurant. “He didn’t mean to,” the bartender said, clearly not believing what her eyes told her. (What moving to the restaurant was supposed to accomplish, I am not sure.)
Of course, he does mean it, for he loves the effect as his chosen projectile smashes to the slate floor, spraying glass everywhere like fireworks. While this new practice sounds like a hostile act, most often Jukie is happy and filled with silly “Jukieness” prior to the sneaky deed. He waits until whoever is designated with Jukie-duty diverts her attention for just a moment and then, with lightning speed, he makes his move. He’s so fast that it’s nearly impossible to stop him.
Like Kali, the Hindu goddess of eternal energy, Jukie loves destruction. Of course, he doesn’t see it that way; he has no thought of the consequences of most of his actions, such as my collecting glass shards with the dust broom, a wet paper towel, and my fingertips. To him, the delight seems to be more in the immediate cause and effect. And the effects of these effects have been rather expensive; sometimes we joke that we need a separate homeowner’s insurance policy just for Jukie. Over the years he has:
Torn many items off the walls
Ripped the handle and deadbolt off the front door
Pulled his curtain rod out of wall (leaving a large hole)
Yanked the toilet paper holder out of wall (leaving a small hole)
Chucked many items down the stairs (including Geneva’s violin)
Whipped things at the ceiling fan to watch them hit and fly in all directions
Broken multiple lamps
Flushed God-knows-what down the toilet – necessitating its replacement
Thrown various fragile items at the ceiling
Bitten Geneva on the stomach while dancing happily with her
And, of course, the recent classic: feeding 3 boxes of wipes into his fan (see photo below)
Of course it’s often maddening to be present during Jukie’s whimsical demolition, much less the recipient of it. But, I can also understand it. Jukie has little say in where he goes and what he does. He has to rely on us to interpret his thoughts through just the few words which he communicates through PECS, or mystically via our special psychic connections with him. So often it’s hard to be Jukie. I get his need to blow off a little steam, and evidently nothing livens up the house like a little shattered glass! And really, who wouldn’t love to throw some glasses at the floor now and then. As we finish yet another kitchen cleanup, we wonder what will last longer, our remaining glassware, or this new tradition of Jukie’s, one that makes him as happy as a new groom, crushed glass underfoot, and the joyful words “Mazel Tov” hanging in the air!
Wednesday, October 21, 2009
“You should write a book.” I hear this often. Everyone seems to think there’s a book to be written about life with Jukie. His antics are practically Davis legend. Jukie’s hijinks are both so maddening and entertaining that they’ve made for many a humorous party story. It’s that “laugh or you’ll cry” thing. Only, I don’t have to look hard to find the humor. Jukie’s pretty damn funny. I mean, who else but Jukie would get into a tug-o-war with a 90-year-old with her own cane?
The chaos started early. As soon as he was up and walking, he was pulling stunts like dunking his Nana’s camera into her coffee. Soon we discovered that he’d often announce his plans with a fiendish laugh. When the room is still and Jukie giggles to himself out of context… look out! And if he’s laughing maniacally as we tuck him into bed, we know it’s going to be a long night.
When he was three years old, Jukie dragged a chair across his nursery school classroom over to the fish tank. Then he grabbed a teapot from the housekeeping area and proceeded to climb up on the chair and scoop the fish out, pouring them all over the counter. When I arrived at school to pick him up, his teacher announced, “Jukie went fishing today!” (Thank God for those fabulous teachers over the years who love and “get” Jukie!) No water source is safe. Jukie. Loves. Water. Water table set out for play? Jukie will sit in it. Water sitting in a glass on the table? Jukie will pour it all over the newspaper.
Jukie could climb before he could walk; climbing is his thing. Like a cat, he prefers to perch up high. When he was born, his droopy eyelids (known as ptosis) prevented him from seeing much of the world. It was as if he were always wearing a hat with a brim down low over his eyebrows. Climbing enabled Jukie to see the world. Jukie is resourceful and figured that out early. So we let him. We provide as many high spaces as we can for our boy to get his climbing fix. But, he had one more space in mind. A few months back, we heard a knock at our door. Who could it be at ? Of course, it was our neighbor, out walking his dog, who noticed Jukie climbing around on our roof. Our ROOF. Jukie had managed to open his window, rip off his screen, and climb out and onto the roof. There may not be an accomplishment for which Jukie feels more pride. He knew exactly what he wanted to do, and figured out a way to do it. That time he ran away, I had previously told him that we were not going to the park (as he had requested through PECS). So, he climbed the fence and took himself. The most successful explorers have always had more bravery and curiosity than sense. Jukie is our little Magellan.
Thursday, October 1, 2009
Welcome to Holland. A little over twenty years ago, a woman named Emily Perl Kingsley wrote a short essay with that title. The piece became an unofficial rallying cry for parents raising kids with special needs. In it, she likens preparing for the arrival of a new baby to planning for a fabulous trip to Italy. Then, instead of landing in Italy, the reader finds herself in Holland. Holland, obviously not the planned destination, takes some adjustment. In the end, one discovers the beauty of Holland. No, it’s not Italy. But, Kingsley argues that if we spend our lives mourning the mixed up itinerary, we will miss the beauty of the journey that we did take.
Thing is, sometimes, Holland sucks. This week, I was moved by an exchange between two women on Facebook, each raising kids with special needs. One had posted the Kingsley essay. The other woman was in a different “place.” She’s (rightfully) angry about her son’s struggles. She must fight the bureaucracies of school, county and state agencies which determine the services her son will receive. Stacks of paperwork, painful assessments, unreturned phone calls, insurance denials, and an endless stream of interactions with people who seemingly lack an “empathy gene” are all part of this journey. This mom is not experiencing a vacation anywhere. She’s living in the real world with an extremely challenging child who has multiple diagnoses and struggles. Just surviving the day is an accomplishment, sometimes the only goal.
I identified with both of these women. Of course, any parent living with a child with special needs knows that the complexity of our lives can’t be reduced to a simple Holland versus Italy idea. No one feels completely sanguine about their life in Holland. Certainly, I have days when I want to scream about how much I’m hating Holland. Still, I do think that the analogy is helpful for people on the outside, offering a different perspective. One hopes that parents living in Italy might catch a glimpse at our world, a life of beauty and magic, not in need of pity. Early on, Kingsley helped me consider that there might be brilliant surprises in this world, yet to unfold.
So, when both realities are true, how do we reconcile the two positions? Maybe you don’t. Maybe you just travel back and forth and hope that as time passes, you are able to spend more time admiring the tulips and windmills of Holland than wishing you were cruising the streets of Italy on a Vespa. Or, in my case, you buy a Vespa and ride it all over Holland!