May I say, dear friends, that the house is so quiet I am trying to actually savor the ringing in my ears??? Ok…I don’t enjoy the tinnitus one bit, but today…well…let’s just say that there isn’t the TV muttering in the background, doors opening and closing, the washer and dryer humming constantly, the stomp of footfall on the steps. The soundtrack of the everyday life has switched from “constant” to “incidental.” I didn’t remember, for example, how loud the central heating in this house is…until this morning (when everyone left for school or work) it sounded a lot like Christmas…jingle bells, ho-ho-ho, and so forth, to paraphrase Lucy Van Pelt.
I’ve tried to bask. I can’t. I have so many things to do that I’ve been working my way through a long list little by little, but -shameful, I know- I’m still in my nightgown and robe. My tasks have not been major: paying bills here, unloading the dryer, loading the washer, peeling layers of Christmas from all over the place (as I told Dada in an e-mail earlier: one doesn’t really KNOW how much Christmas crap one has put out until one has to put it back in storage,) making pumpkin soup for tomorrow’s lunch bags (because it’s going to be cold, cold, cold, pop-your-eyeballs-out-of-their-sockets cold…according to every single forecast I’ve read.) I’ve been a busy bee, albeit in slow motion. The idea of braving the cold to walk to the bus is giving me pause, and I’ve been occupying my time making sure that everyone’s thermals are clean and ready for tomorrow’s ridiculous weather.
A new slant on New Year proceedings is the closing of books and opening of new ones for J. We filed, in a timely fashion in spite of the frantic feel to the whole process, our annual Report of Guardian. We made sure all of J’s receipts and documents were orderly and properly filed. Now I am working on getting 2014 ready for the onslaught of receipts, letters, notices, reports, and so forth. I’ve become closely acquainted with the in/out box, the binders, the date stamp, and the meticulous record-keeping that comes from managing J’s “legal” persona. This is not for the faint of heart…or for the disorganized…or for the lazy. I tried the lazy tack, and this inevitably led to disorganization which, in turn, led to me taking my blood pressure and realizing that I could be faint of heart if things get out of hand. I learned my lesson fairly quickly: a box now sits with all the mail and receipts on the desk, and every time I sit down to do something as lame as checking e-mail, I check to make sure everything has been properly filed.
This part of what I (we) do is what I like to refer to as “the enormity of adulthood.” You will not know how much of a grown-up you’ve become until you’re made accountable for every single detail of a young man’s legal life. Parents don’t realize this…usually, by the time they hit 18, kids are pretty able to manage some of the more intricate aspects of being a legal individual. Like a complex Lego, there are many pieces that one has to snap into place, and sometimes they don’t even make sense. Other times, they seem unnecessary, extraneous, frippery…if he paid cash, why keep a receipt if I have a receipt that says he got cash back at the store???? Because…that’s why… Uncle Billy in It’s A Wonderful Life had the same trepidation about the bank examiner that I have about missing or misplacing or dismissing as unnecessary one single receipt.
We started 2013 naively thinking that we knew all that lay ahead as J’s guardians. We ended 2013 knowing that it’s a lot more complex than we envisioned. In fact, I spent a healthy portion of New Year’s Eve Day yelling at the health insurance company because they denied a claim from J’s visit to his new doctor. Actually, I was pretty reasonable about the whole thing until (once more) they asked if they could speak to J to ask for his authorization to discuss the matter with me. Let’s travel back in time to the lengthy conversation I had with this same agency early last year to explain why this was impossible and how, miracle of miracles, we had power of attorney as J’s legal guardians. “The record doesn’t reflect that.” REALLY???? I suggested she go past the first screen and, lo and behold, there it was further into the electronic data file than she’d bothered to delve initially.
“This is emotionally painful, and unnecessary because it’s in his file. You have no idea what this does to a parent of an adult with a disability…to have the same conversation with the same company repeatedly because no one bothers to look past his birth date.” I got the “of course I understand!” in a haughty tone, and then…sigh…she trotted out the “autistic nephew.” Now…I don’t doubt that there might be an individual in her family who could be autistic, but my personal experience has taught me that there are those who trot out the “autistic nephew” quite easily without really being much involved in anything but the statistic. (Need we discuss my siblings? They all DO have an autistic nephew…don’t they????) I got the feeling (the sinking, depressing, heart-wrenching feeling) that if I’d said J had kidney failure, she’d have had a nephew with kidney failure. If J had had cancer, her nephew would have had cancer. If J had been afflicted by urticaria, her nephew would have been scratching his flesh off avidly. It was the script…the empathy script that they use to make you realize they “care,” and they’re just like you. How do I know this? Because when I said “well, then, I suppose your sibling who parents an autistic individual will be able to clarify for you how this feels…” A chorus of crickets…and then (wait for it) “uh…yeah…”
It is now 2014, and I’ve put that (but not the concern about the denial of J’s claim) aside. I can only fight one battle at a time, and if I’ve laid down my weapons where my siblings are concerned, I’m not likely to take them up where nameless, faceless customer service reps are concerned…I have too many documents, receipts, reports, letters, notices, appointment reminders, and so forth to keep track of as it is…and maybe, if this doesn’t get resolved, one more check to write…
It’s all part of the job, and the year is just starting!