Finally! I’ve been promising a “how-to” guide on care mapping for the last few weeks, and it’s finally ready.
I’m on shaky ground this week, dizzy and disoriented. I can’t find a linear thread here so I toss out all these puzzle pieces hoping to make a coherent picture in the end.
Last week I jealously listened to a couple of parents on a panel share their memories of receiving their children’s diagnosis of a particular genetic syndrome before or at birth. Their stories triggered memories of my own years of confusion and worry when my child with medical, cognitive and developmental special needs had no diagnosis or prognosis, only assurances to wait and see. Nothing like their experience of having rock solid information, a roadmap, a sense of place even.
Chronic limbo left me unmoored during those years. I had two mental tapes, the public one which chanted “he’s fine, he’s doing great, wait and see, he’ll catch up” in unison with the therapists and teachers around me, and the private one, darkly creative, the one that read or heard about the worst cases of horrible care and outcomes for adults with disabilities and inserted my gentle, vulnerable son’s image into each one.
In the special needs parenting world, talk often turns to the need for acceptance. Accepting our children, accepting our challenges, accepting reality on a very basic level to simply exist helps us meet it with wisdom and discernment instead of running away from it in fear or kicking it away in anger. Without a clear sense of what was actually going on, acceptance was elusive for me. Acceptance and proper diagnosis, at least in my experience, were connected, and one couldn’t come without the other.
A few years ago my son was given a label, a diagnosis based on the appearance of his symptoms. The mothers on last week’s panel talked about how they both remembered the exact moment they receive their child’s diagnoses–where they were, what they smelled, what song was playing on the radio when the call came in or the information was revealed. Our diagnosis was never like that. It just evolved over time based on new symptoms as they appeared, a name of a syndrome followed by a question mark which faded over time until it was nearly invisible. It wasn’t a perfect match, but simply getting a label enabled me to get unstuck and move toward acceptance and advocacy. With the diagnosis came a whole new tribe of folks to talk to, new access to research, to resources. It felt good to stand on ground that wasn’t exactly solid, but swayed just gently and rhythmically enough to make it look like I was dancing.
A few moments spent on the website of a genetic syndrome support group this week brings me face-to-face with photos of a boy who could be my son’s identical twin. The same eyes, the same jaw, the same nose, even the same expression. Another click of the mouse and there’s another one. Brothers from another mother. With a deep sense of knowing, like cylinders in a lock clicking into place, I see my child in the list of symptoms where only a year ago I could see no strong resemblance. It’s hard to explain how. New symptoms have appeared, new behaviors have been identified. But this is not our genetic syndrome, not our diagnosis. A different one, a rarer one, with a whole new set of symptoms, a whole new tribe, a whole new language, a whole different place altogether.
And the ground begins to shake yet again.
Here’s the third in the belabored series on tools that inspire me as a special needs parent to live with joy, courage and compassion, as inspired by the Hindi goddess Durga.
I am not a naturally athletic person. Lest you get the impression from the post’s title that I am one of those people with a vexing bottomless well of physical energy, aptitude or endurance, (though my favorite is Rob Lowe’s Chris Traeger’s character on Parks and Recreation) I must assure you that I am a clutz.
I was a good student in my youth. I felt secure and comfortable in the realm of my mind but completely at a loss when I paid any attention to my body. Growing up I barely completed a season of any sport, most often quitting after the first few lessons or games. My athletic prowess extended to the occasional aerobics class or a night out at the bowling alley every decade or so. I learned to swim and ride a bike years after friends my age did. Oh, I did play softball one season, though it ended with a broken nose and the assistant coach sarcastically yelling, “Look what I got!” on the single occasion I managed to catch a ball during a game.
In my late 20’s I accidentally cultivated a slow-jog habit. I say accidentally because I really can’t otherwise explain how I found myself pulling on my sneakers and jogging while trying to hold steady a very skippy portable CD player during many of the summers of the late 90s. The object was to simply move my body, not push myself too hard – which I was very good at.
Once parenthood hit though, the sheer physical exhaustion and a sleep-deprivation induced fogginess punted that shaky practice right out the window. Finding time to exercise meant getting up early. Sleep was what my body needed there was no way I’d miss a minute of it. Besides, I hardly had enough time or energy to go to the bathroom; why would I squander precious energy on running a loop around my neighborhood when I needed it to unload the dishwasher?
At some point in the last few years though, the sneakers found their way out of the closet and I am just as surprised as you are to find out that I have a pretty decent jogging habit again. I’ve even done a few 5ks in the last year or so, run through the last two winters and I’ve probably doubled my speed – I can run much faster now that I’ve upgraded to an iPod.
What has come as a surprise is the pleasure not rekindling the slow jog ability, but of pushing my body really hard. As I crank up the volume of that perfect heart-thumping track, I’m almost always able to run faster and farther than I believed possible, and with that success comes the insight I am quite possibly mentally and emotionally stronger than I believe. I push myself by choice out on that sidewalk so that when I’m faced with a surprise obstacle in my everyday life, I already have experience of ignoring the voice in my head that tells me, “You have to stop, you can’t do this.” I don’t know how it’s possible that this is the same voice, but it is.
Another gratifying by-product of voluntary exhaustion is the way it can simply shut off my incessant mental chatter and calm my anxiety. Though my mind continually seeks out things to obsess about as long as it’s awake, it does take a little break in the hours after a good, hard workout. I have worked through and integrated some experiences more effectively by simply moving my body than I ever could by thinking about them. Sometimes the body knows how to handle that which the heart and mind simply cannot process. It took an apparently smart girl a surprisingly long time to learn that.
I don’t need to be a jock. I’ll always have my curves and my clumsiness. But I do have a new appreciation for my body’s wisdom, its value and its strength. And now when life throws me a curveball, I might just be able to catch it without breaking something.