The Awesome Responsibility of Sight Word Bingo

"Ruth had arrived with the slush of spring. She was light, buoyant even, and yet when the midwife first shifted the tiny bundle into his arms he felt as if he might drop her, so heavy was she with helplessness, with the need to be protected at all costs. He knew he could not let her fall, ever, in any way." - Christina Schwarz, "Drowning Ruth"

We're torn, often, between helping and hindering, teaching and allowing.

There's a concept in child-rearing called "natural consequences," in which, if your defiant child refuses to cooperate you send them off into the world with their own poor decision and let the chips fall where they may.

Our cold weather arrived in Las Vegas this week, and Justice, who likes to dress in the lightest fabrics known to science, threw a fifteen minute tantrum yesterday because we wanted her to wear a heavy winter coat to school and she wanted to wear something better suited for a light breeze from the treetops on a sunny Saturday in June. She detested our choice for two reasons. 1. It was our choice and we were telling her what to do, and 2. It was our choice and we were telling her what to do.

Justice doesn't do well yet with understanding we're in charge of her life now. Her incredibly intense and amazingly well-practiced "you're not the boss of me" attitude spans seven years and a few different homes, and as I've said before, she's less than impressed that we're next in line to take a crack at parenting her. She's had parents before, and they all gave her the boot, and frankly, in her world, it makes perfect sense for her to take the reins and look out for numero uno. In other words, the way Justice sees it in her long-hurt head, she'll be damned if she's letting anyone else tell her what she can and can't wear.

So, natural consequences it was.

We let her go off to school in her much-too-light jacket, and sure enough, fifteen minutes after she got there, her teacher, God bless her, told Justice her jacket wasn't up to snuff for such a winter's day, trotted her over to the nearest phone, and made her call home to have us bring her the jacket she defiantly left behind. A pain in the ass for us to turn right around and drive back to school, but mission accomplished, with her teacher's advance understanding of our situation, it was a cooperative example of teaching Justice natural consequences. This morning, with a smattering of yesterday's egg still fresh on her face, she grumbled, but trudged off to school in the heavy jacket we gave her.

This is called ODD, or Oppositional Defiant Disorder. According to Wikipedia (and honestly, what in the world is not described according to Wikipedia anymore?), oppositional defiant disorder is a diagnosis described by the Diagnostic and Statisitical Manual of Mental Disorders (DSM) as an ongoing pattern of anger-guided disobedience and hostilely defiant behavior toward authority figures which goes beyond the bounds of normal childhood behavior. Children suffering from this disorder may appear very stubborn and often angry.

That's our little pumpkin in a nutshell, with a behavior that extends exclusively to us, one that thanksfully she does not exhibit at school. To teachers and other adults, she's a beacon of cooperation. To us, she is as uncooperative and non-compliant as possible. It'll get better, we're told, but for now...c'est la vie..."that's how you get," as Justin would say, for being this far removed in her parenting lineage.

Justin, on the other hand, with his still untreated ADHD, is usually more cooperative, shows much more compassion and remorse when his behaviors lead him astray, and tries to get along with us the best he knows how when his efforts aren't being sabotaged by his sister. "He has a heart of gold," his kindergarten teacher summarized. "He just can't sit still."

So, both of the kids definitely have a healthy smattering of both, but if I had to sum it up, I'd say Justin has a major in ADHD and a minor in ODD, while his sister's course load is exactly the opposite. They're both still unmedicated, which I continue to blame on the monumentally inept Department of Family Services, so we do what we can with therapy and patience until our long-awaited psychiatric appointment on December 18, at which time a doctor will legally "re-prescribe" what another doctor (a non-psychiatrist) already prescribed on October 3, but DFS and the DA's office wouldn't let us administer, due to "standard policy."

When this is all over, remind me to tell you what I think of DFS and the DA's office's "standard policy" and their overall lackluster ability to fully understand and properly take care of the children who are supposed to be in their care.

It's an awesome responsibility to take care of the medical needs of these children when the system is so mired down in generic procedures that serve no individual best interests whatsoever, and in fact, actually hinder new parents who have stepped up to meet their children's incredible challenges. They created these ridiculous prohibitions as a stopgap, so masses of kids aren't overmedicated needlessly, but they do nothing to help the percentage of kids who really do need help, quickly, thoroughly, and in a supervised manner. We've been waiting 67 days now to give our children the medicine their doctor prescribed more than two months ago, for conditions their therapist has been recommeding medicaton for since June, before we even got them.

All hail the brilliant system.

"I feel like nobody in the system has our back anymore," I admitted to our therapist a couple weeks ago. "In fact it's worse than that. Not only do they not have our back, they won't even just stand aside and let me do what any parent should responsibly be doing. Their policies just prevent me at this point from taking proper care of the kids. They don't benefit the children at all."

"You're not the only one to tell me that," she said with a heavy sigh. "I hear that a lot."

So, Justin still can't focus academically. His godsend of a teacher gives him additional structure and help, and she gives our "stuck in the system" status her undying patience. A lesser teacher would have the poor kid banging erasers and sitting in a corner 24/7. But Ms. H is on our team and she knows how the land lies. She knows his meds are on the horizon, and is hanging in there with us, hoping his focus will be improved in his appropriately-treated months ahead. As soon as DFS and the DA/Court system pull their heads out of their collective asses.

Meanwhile at home, we play Sight Word Bingo, hoping to slow down Justin's overactive guessing brain long enough to differentiate between with, what, when, and why. Justin's brain moves too fast impulsively. He can't slow down and take his time. If it starts with a W, no matter what it is, Justin will read it as "was." I could give you a million examples of how ADHD has affected Justin's ability to learn and how we try to circumvent it without the benefit of medicine. This is his second attempt at kindergarten, and if left to DFS and the Courts, he'd be repeating it, what... three? four? five times before we can slow him down enough to read?

On the social and religious front, I'm afraid to take him to our synagogue anymore, which was once a welcome and irrefutable part of our Friday night identity. He can't sit still for an hour-and-a-half of services, and after being cooped up in the child care room for 90 minutes, he certainly can't stand patiently at my side when other kids are running and playing in the courtyard. We can't turn our back for two minutes at the post cookies and coffee dash before we're being chastised by the temple management for letting him "run wild and unsupervised" again, in spite of the fact that six other children are out there jumping around with parents nowhere to be seen. I love my temple, but at this point, Justin is clearly being singled out even when he's not hurting a fly, and since that's the case, it's easier just to keep him at home.

Justice and Justin are still vastly misunderstood by our community as a whole. ODD and ADHD are chalked up by almost everyone we meet as inept parenting, with everyone offering their own version of the easy fix, if we'd only be smart enough to listen.

We get some of the most ridiculous advice. One older member of our congregation told us we could curb Justin's impulsive physical behavior by finding an older boy to beat him up. "That'll set him on the straight and narrow," he said proudly, as if he'd just come up with the perfect solution all by himself, one that's eluded child experts since the beginning of time. Sure. We'll get right on that.

It continues to amaze me, in 2012, how many people think physically beating the shit out of a child is the wisest way to fix him. If that's how it works in your world, good for you. Now get the hell away from my kids.

I don't just want to help and protect him. I get angry at those who stand in my way of doing it, or threaten him harm, even on a hypothetical level. My friend Dawn calls this the Mama Bear Syndrome. You want to feel wrath you've never known before, mess with my cubs.

Another friend of ours - a dear friend, in fact - described Justice to a third party this week as a sociopath. In front of Adam. "She's a socioapth," he told our mutual acquaintance. And Adam, horrified, set him straight. This is the kind of misunderstanding and ignorance we get from friends. Some of them our closest friends. It boggles the mind, this kind of ignorance and stupidity, even from those who know our fledgling family the best.

so-ci-o-path (noun) a person with a personality disorder manifesting itself in extreme antisocial attitudes and behavior and a lack of conscience.

Justice's ODD - Oppositional Defiant Disorder - is many things to us, and quite frankly, a good percentage of them are a healthy pain in the ass - but a sociopath she's not. She doesn't lack conscience. She's just seven and angry at the whole messed-up hand of crap she's been dealt since she was born. Misspeak like that again in my presence, and you'll find out just how dangerous this bear can be when you poke your big stick of ignorance at a cub who's trying her best. This is her fourth go-round, folks. You lose three sets of parent-figures and tell me how cheery you feel when number four shows up and promises to love you.

Remember that pretty song from Sweeney Todd?

Nothing's gonna harm you, not while I'm around
Nothing's gonna harm you, no sir, not while I'm around

Demons are prowling everywhere, nowadays
I'll send 'em howling I don't care, I got ways

No one's gonna hurt you, no one's gonna dare
Others can desert you, not to worry, whistle I'll be there
Demons will charm you with a smile, for a while, but in time
Nothing can harm you. Not while I'm around.

Before I got the kids, I only saw that song as tender and poignant, a pretty lullaby, heartwarming for its protection and nobility. Now that life has made me a father of two children whose nature and nuture have left them lacking in the "normality" many of our friends seem to think they should have in spades by now, I can see how it's prettiness masks an awesome, fearless undertone. It's my duty and obligation to live up to its words. It's a direct challenge from me personally to anyone foolish enough to treat my children poorly or speak of them with anything less than understanding and respect.

Give it a shot, but you won't get away with it on my watch. Not while I'm around.

So December 11, 2012 finds us at six months and three days as a family. Waiting for filing. Waiting for a psychiatrist. Waiting for medication. Waiting for the with, what, when, and why of our lives to settle and clarify. It's an ongoing game of Sight Word Bingo. We practice, we play, we win and we lose.

But even on our worst days, call my daughter a sociopath again, and you're no longer welcome to play on our team.

I don't care how much history we have. Will I give you your walking papers and not even feel nostalgic about it?

Bingo.

"Drowning Ruth" by Christina Schwarz, c.2000 Ballentine Books, Random House, Inc.