Friday, November 20, 2009

What's in a label?

My daughter Bumblebee is...intense.

She's always been exceptional. Exceptionally sweet. Exceptionally loud. Exceptionally shy. Exceptionally quiet. Exceptionally precious.

When she was 2 ish, we went to the doctor for some run of the mill cold. She was terrified, and turned off. I was irritated with her. He suggested an evaluation for autism.

I struggled with the thought, the number for First 5 California in my hand. But as I snuggled her close and held a 2 sided conversation with her about the incident, I felt that autism was way too extreme. Out of the question.

My child was shy, that's all.

When she buried her head in my lap after racing off the playground with a high pitched scream because 2 other kids appeared on the monkey bars, I felt a fluttering of concern. But a label?
Our next discussion with the doctor left me thinking she was just special. Shy.

Yes, shy. Shy was a good label.

When she collapsed in the middle of a new gymnastics class, carefully covering her head so she couldn't make eye contact with the coaches or the helpers (who promptly chased me down in the parking lot, to return and sit through the next 8 "No parents allowed under any circumstances" classes) I shook my head. She's exceptionally shy. But special, we all agreed. There's something about her.

Discussion with the doctor left us reassured. Sure, there's something. There's something about everyone. She's shy, obviously. We could look for another label. But is it worth it? Labels tend to follow children. They set them up for expectations in school. They can leave the kids giving up on themselves. Labels lead to medication. What did we want in a label? What we were doing was obviously working. And she was sure to outgrow it.

When she started Kindergarten, our hearts soared. She came home grinning and full of stories (we later learned her part was played much differently than the version we heard from her, but hey...they were great stories)
They plummeted as soon as she tired out and began crying. When she'd cried for a week straight questions arose.

We ruled out bullying, abuse (I'm still smarting from the inquisition of my older daughter, although she didn't know what the implications were. Of course, we had the same questions to rule out about school personnel, so how offended can I be?) and physical issues. Her teacher was a saint who'd loved her since her sister was in Kindergarten 4 years previously. That left...something. Our combined patience would have impressed Job himself.

Again, the doctor's "We should think about evaluating her, have we talked about autism?" comment haunted me. Millions of teen-mom talks returned to replay themselves in my head (and I wasn't quite a teen mom. More of a college mom. I was 24 when Bumblebee made her appearance. But around here, that's early.) All those red flags I'd been ignoring jumped out and flapped in my face. Something was WRONG.

By May, she needed to be restrained so I could leave the premises. However, we all agreed that giving in and keeping her home was not the right course of action. She's bright. She reads ahead of her age level, her math skills are excellent, her comprehension on track or above. She had friends. She was grinning after school each day. Her only complaint about school was that it was too long and didn't have enough learning. But she'd cry in anticipation of my leaving.
Starting the night before.

The only diagnosis we could get was anxiety, with a question mark. It was out of her pediatrician's comfort zone, our insurance sucks and we waited for our last hope...the school counselor.
She agrees. There's...something.

But labels follow a child.
Labels set a child up for preconceived notions.
What would we really want from a label? What could it offer that we aren't getting now?
Although she's struggling, whatever we're doing is definitely working. She's doing "better". She's just...crying sometimes. And screaming. Melting down on occasion. Without a reward. We're doing the "right things".
A label might tell us why they don't work the way we want. But it isn't going to help the right things work any better.
And do we really want to resort to medication? Because that's where labels lead.


No we don't want to resort to meds. No we don't think they're necessary. No, we don't need a label.

We thought we'd hit on something after reading "The Unhealthy Truth" and eliminated food dyes. And yes, food dye definitely impacts her anxiety. A candy cane recently set off the entire "You hate me, you hate me, you hate me! Stop hating me! Stop yelling!" routine when I said a simple "Hey sleepy head, it's time for school!" They handed them out in girl scouts the night before, and I wasn't thinking.

But the fussing, the morning foot-dragging, the begging after school for a quiet day with no play dates and no carpool driving, the insistence on "Please let me stay home, I can call you. I know how to dial the phone, and I can call the police, too, if the house burns down or somebody breaks in." The refusal to go to a park, or the toy store, sometimes even a birthday party. It's wearing on me. And making me think again, there's something missing.

I don't want to label her.

But as our neighbor child watches with wide eyes and asks me in a stage whisper "What is wrong with her? That's not normal." I have to think again about labels.

They may set kids up.
But they also let parents off the hook.

A normal child would never get away with the fits Bumblebee throws. But I have to balance the screaming with the fact that she holds my hand and hasn't thrown herself into the street or the fact that she's aiming her feet at her mattress, not her sister, not her friends, not her mom, not even the window. She isn't pulling things off the shelves. And if I reprimand her, she will. Not because she wants to be destructive, but because she's out of control. She's out of control, and scared. My job is to reassure her, protect her from herself as well as the people in the area who are judging and offering their two cents, or worse--intervening.

Labels are answers. Even if they don't mean anything, if I could explain the tantrum with a roll of my eyes, an apologetic smile and "Generalized Anxiety Disorder" or "Sensory processing issues" or even if she were "on the spectrum," No one would even have to know what I meant. They'd just accept it and nod knowingly, walk away.

It's not even something that happens very often, but when it does...I realize that labels do have a place. Even if it's just for parental piece of mind.
Sometimes I wish we'd gone that route.
But when it comes to parenting, I won't have the answers for another 20 years. And even then, I'll only know I took the right path if my kids decide to tell me I did. I can only hope I don't look back and know it was the wrong one.


Marty said...

Your daughter sounds a whole lot like my granddaughter. She is so shy she sat in the corner the whole year at dance class and refused to move. At the recital, however, she danced flawlessly, like she thought she had to save up for the big performance. She's the same way in kindergarten-turns away the friendship overtures of the other kids, and HATES music and PE-to stimulating. Her cousin is in the next classroom and she relies on him a lot-don't know if that's good or bad-but at least there's someone for her to play with. They talked about having her evaluated, but found out the same thing, that she is extremely intelligent. She was an extreme preemie (1 1/2 pounds)and they think she gets overstimulated too quickly as a result of that. Anyway it's frustrating for Mommy, as you can attest to.

Violets said...

Thanks Marty,
Good to know we're not alone. We do get a lot feedback that "she didn't seem to have much fun..." and then Bumblebee tells me long, elaborate tales about "the most awesome party ever!" so I just don't know. But I worry. And I never know what to tell people when they ask. She's her, and we love her. Other than that, we just don't know...