September 19, 2012 by whirlyjoy
Earlier this week, in one ten-minute stretch of time, Aida: raised her arms up like a cactus and flipped her head back and forth so fast it was a blur; grabbed me by the shoulders, thrust her face into mine and squeezed painfully hard while letting out banshee shrieks of glee; tried to climb her whole (5’5″, 160-lb) body behind my back on the couch where I was seated; threw herself down to the ground and bounced her head against the carpet again and again, scary-hard; thrust her hands and arms forward over and over while throwing her head repeatedly back and laughing maniacally; and in her calm transitional moments, brought the backs of her hands up to her mouth to bite down hard on them, making a new addition to the now chronic bruising we see there.
For once, during those particular ten minutes, I was glad she was doing all this, because we were at an appointment with the nurse practitioner who manages her medication. This upswing in manic activity that began a year or so ago is exactly what I wanted her to see.
Nana once told me that raising children is all about greater heights of fear and guilt than you would ever experience otherwise. As an attitude straight from our Irish forebears this resonates in my blood. Here’s what I was thinking from the second I laid eyes on Aida as a newborn – and every single day since: How many ways can this tiny, wonderful person come to harm? And how many times over the years will that harm come from all the things I’m bound to do wrong?
(Nana also offered a few bits of parenting advice, the most frequent being: “Nothing will work except threats and bribes.” Interestingly, that’s pretty much what behavior management for kids with autism looks like – the tricky part is figuring out what makes an effective threat or bribe to help shape what they choose to do…).
Opa used to tell Nana to stop scaring us girls with her thoughts on child rearing, or we wouldn’t have kids of our own. “Don’t be silly,” she always responded. “Of course they will.”
Aida has been on regular doses of mood-altering medications for about half her life now. You’d think I’d be cool as a cucumber about this, since most of our extended family is on some kind of anti-depressant or anxiety aid. Previous generations were steeped in manic creativity and alcohol – musicians, a Hollywood screenwriter, and so on (did I mention we were Irish?), and the current crop of aunts and uncles mostly smoked like fiends until the social stigma became too much. I have vivid memories of my grandmother Big Jane dumping the contents of her purse out onto her bed and twirling her finger through the lipstick, cigarettes and tissues to snag a little white tablet, or a red and yellow capsule of something. She’d offer them around like breath mints to all and sundry – “You’re sure you don’t want to try just one?”
Maybe this is why I instead have a healthy respect for what a huge effect these medications can have, and a strong resistance to turning to drugs for help. It took seven years of sleep deprivation (for Aida and so, of course, for me) before I was willing to try anything other than natural remedies like melatonin for her. One day, I had parked and was crossing a busy street with little Mimi bouncing next to me in her pink tutu, heading for dance class. Suddenly cars seemed to start honking from every direction… and I looked up and realized I’d marched right out into the crosswalk against the light. That’s when I decided the fog I was living in was more dangerous than letting medication monkey with my child’s brain.
How do you know if your child is “happy”? Is she content, fulfilled, excited about opportunities and experiences, experiencing pleasure in her days? How do you know any of this, when she can’t tell you?
I parent Mimi with a view to teaching her how to recognize and nurture her own sense of satisfaction and contentment in life. Aida, though, in some very big ways will never be an agent for her own happiness. This responsibility, like so many other things that “regular” kids grow up to manage for themselves, falls to me. Medication is increasingly one of the tools I feel I need to use, but even with the best medical advice, this is a process of trial and error. Will we be able to find the “right” drug? Is there even a drug that will help more than it hurts? (Not all these stories have happy endings, after all.) And how can I make that judgment?
Talk about guilt and fear. [Insert heartfelt swear word here.]