March 19, 2010
Angel for an Hour
In case you’re worried about my sanity I can assure you I haven’t joined a cult, although my experiences with two kids on the autism spectrum have led me to become a fabulous rule-follower. No, I am simply referring to the joys of a blood draw with a six-year-old autistic child. This afternoon I took Justin to LabCorp (the medical equivalent of the DMV) to have him checked out for PANDAS, which is a disease not nearly as cute as it sounds. Apparently, even though his last viral event was not strep, the fact that his OCD is through the roof now may be somehow related to this infection. Of course, the symptoms may actually not be related. The existing test for it only involves markers for the disease, is not necessarily definitive, nor is the course of treatment clearly defined.
Anyway, we’re here, early afternoon on the soggiest Friday ever, because I had the presence of mind (a miracle) to make an actual appointment rather than engaging in the LabCorp cattle call, and Justin had a half-day at school. I mean really, what better way to spend it with my son than getting his arm pierced?
After we’ve slogged our way through the unrelenting downpour into the waiting area, I am relieved to see only a few individuals/families ahead of us, and have a moment of hope that this experience will indeed be swift. I’ve got a tight handle on Justin who is usually fairly well-behaved in these situations, but today I’m battling severe sleep deprivation (his and mine), as well as his overwhelming need to touch everything single object and person repeatedly within a five-mile radius. We walk over to the reception window, and after practically body slamming him against the glass partition just so I could sign in and search my wallet for his always elusive insurance card, I finally release him.
I have just enough time to dump my purse, coat, and goodie bag on an empty chair before having to run interference between Justin and the nice Asian family huddled in the corner, regarding my son with some consternation. Apparently they’ve had the grave misfortune to purchase a baby toy which plays music AND lights up, and Justin of course feels that gives him proprietary rights. After removing his clenched fingers from the toy in a grasp reminiscent of my hold on good dark chocolate during PMS, I manage to maneuver him to the other side of the room so the assaulted family can recover. I’d offer them wipes, but Justin will simply view that as another invitation to touch what he feels is his, so I decline my own silent offer.
The gods are smiling upon me, because the wait is indeed brief, and within minutes and only three or four rounds of chasing my impulsive six-year-old around the room, we are called in to register. I am an old pro at this part, and thankfully the check-in area boasts cubicles, which are excellent receptacles for hyperactive autistic children. There’s nothing interesting for Justin to get into over there, and if worst comes to worst there’s chairs, and I can always sit on him. I’ve done it before.
Unfortunately the technician can’t find Justin in the system even though he’s been here so often he should contribute to their mortgage, and quickly things start to get a bit dicey. In desperation I allow him to spin the pen on a leash quite firmly embedded into the computer desk, and although it occasionally comes dangerously close to putting out the eye of the man so valiantly re-typing my son’s life history, the tech doesn’t complain. Justin continues in his perseverative pastime, and it’s on his fiftieth twirl (give or take a dozen) that I hear the voice emanating over the walls of our tiny cubicle.
I look over, praying it will be somebody we know, someone who will so enrapture my son with their attention that I’ll make it through this intake with everyone’s body parts intact. Alas, to my dismay, our new friend is a stranger. Justin has responded however, and has momentarily abandoned his rotating dagger to check out what this new person might have to offer him. I’m certain he’s thinking at this point that it will be better than a pen.
The two engage in what passes for discourse between a friendly, unintimidated adult and a non-verbal autistic child, and I am able to conclude our little interview and receive further instructions, which I am miraculously able to retain long enough to usher Justin to the appropriate place. I smile quickly at the woman next to us, corral Justin and gear, and move on. Normally, I would have thanked her for her help and told her he was autistic in an attempt to educate and instruct people about spectrum disorders (in the remote chance she hadn’t figured it out already). I look at my son as a mini-autism ambassador, and every positive interaction with the community at large scores another point for all of us. But today I’m just too tired to give my spiel, and instead we exit our mini-cave with haste and strike out for our final destination.
Justin, who has the memory of a dozen elephants, leads me down the corridor to the correct location, and is none too happy about it. He is fourth in the queue, and is not ecstatic about his less than diva status either. Out of the corner of my eye I notice our cubicle neighbor approaching us, but as I am now too busy having my fifty-DVD collection being rejected while simultaneously attempting to keep Justin from stealing medical supplies, I don’t make eye contact again.
Finally Justin relents, sequesters himself in a seat with an apparently non-offensive video, and waits for the inevitable. When it’s his turn the techs insist he change his location, a request which once again is not met with a great deal of enthusiasm.
It’s when I’m sitting on our bloodletting throne and trying to keep Justin still on my lap, reassuring him I’ve numbed him so much with Lidocaine they could amputate and he wouldn’t feel it, that my son’s new friend pokes her head around the partition and makes her appearance again.
“My son had Angelman’s syndrome. He had a lot of the same symptoms as autism, and when he was grown it used to take four people to hold him down for a blood draw. Can I help you?”
God, yes. You can sing, dance, hold down an appendage (his or mine), whatever you want. Just help.
The use of the past tense in referring to her child doesn’t escape me. I wonder at her calm use of it, the juxtaposition of this friendly, helpful woman with the pain she must have endured raising a severely disabled son to adulthood only to lose him. I am impressed she has the strength to offer aid to anyone who might remind her of her sorrow, rather than simply sitting this one out, feeling she had done her time.
Since Justin is “secured” I briefly contemplate that although “this autism life” is none I’d wish on anyone, we have it comparatively good to any family going through this thirty, twenty, even ten years before we did, when autism diagnosis and treatment was conducted in a veritable wilderness. I think momentarily of the parents who not only raised their challenging children in almost inhumane circumstances, but also somehow managed to enact IDEA, begin insurance reform, and a variety of other initiatives that I am appreciative of, but mostly take for granted. I don’t know how they did it, helping others with such scant resources, when for the last six years I’ve pretty much just kept my kids alive, and haven’t contributed much to the community at all. I don’t know how women like the one in front of me survived, particularly in an era where disabilities were far from accepted, even embraced, by society. I don’t know how she buried her son, still smiles, and helps perfect strangers.
But she is doing just that, and I am eternally grateful, as I have as much desire for a return trip to LabCorp as I do for that first post-winter bikini waxing. As we make our way through the corridor to the parking lot I thank her verbally as the torturous event concludes, and silently thank the generations before me who through their efforts have made my life, and more importantly my son’s life, so much easier.