Jill was awful mad yesterday morning. “I’ve asked you over and over to clean up your work area and do something about this pile on top of the printer,” said her voice on my cell phone. She was home, trying to print a label to ship a refund to some nutjob on eBay.
“I’ve asked you to do so many things you never do,” she said.
“Don’t make this more than it is, Jill.”
“I’m not making it more than it is.”
Maybe not (though I eventually discovered that her trouble stemmed from her plugging the cable into the wrong hole on my computer). “Pile” referred to an 8-inch skyscraper of papers, folders, envelopes, scraps, notes and hopes on white, red, yellow and green, among other colors, paper, written in ink, pencil, crayon and toner.
The pile is a stack of curling communications technology that makes me wonder if the system that coughs it out cares, when you get right down to it, what happens to Alex or they’d invest more money in talking to me. A stack of feelings I don’t want to face, most of those feelings also about as stable as the pile itself.
“Those papers represent that for me, too,” Jill says.
“The amount of paperwork generated by kids with special needs is astonishing,” writes Abby Perets, mother of five, in “How to Organize Paperwork” at SheKnows Parenting. “I store the medical records for four of (my children) in a single manila folder. Each child has two or three sheets of paper in that folder. Then,” she adds, “there is the file for my special needs son. His ‘file’ is actually a series of expandable pocket folders enclosed in a carrying case, a few binders and in his own drawer in my filing cabinet.
“It’s important to keep that paperwork organized, even though the task can seem overwhelming.”
Alex’s homework with pictures of a farmer on one page and, on the next, his unbelievably low scores on an IQ test. Summaries, opinions of professionals whose faces I can’t recall. Test results, crooked photocopies running on white paper like train tracks across snow. Applications for camps, respite programs, schools. Pronouncements about Alex from doctors’ offices and other entities that stubbornly (or because some lawyer told them not to) refuse to use email. (How come my typically developing son’s school uses email but Alex’s doesn’t?) Between jobs and kid stuff to read, sign or throw away, I wonder what I’ve finished even long after it is finished.
Coffee stains (hope it’s coffee …) on IEPs from the distant PAST. Fat packets from residential schools wanting to know about Alex’s medicine, diet, anger, birth, sex habits, wake-up time, education, pregnancies if any, interests, sensory issues and his father’s knowledge of punctuation (“Describe your child? … ”).
I kept most of this stuff in case we needed to build a legal case to get Alex cleared for a residential school. How am I supposed to dig Alex’s future out of such a pile? What do I know about documenting a legal case? Where did I read I was supposed to save all this paper and piss off my wife? I don’t like that the universe sent these papers my way.
This letter is in regard to Alexander Stimpson’s application for residential schooling.
Please complete the questionnaires in their entirety.
To expedite review of your correspondence, please include the following information.
The pile recruits from the normal. Our latest tax return’s here; before I stuff it into the top of Jill’s closet (while she’s not looking) to join 1040s from the Clinton years, I check the IRS site to see how long to keep old returns. I always thought seven years. The IRS says keep returns for six years at most (unless you’re a crook, in which case don’t listen to the IRS). If you didn’t file a return, says the IRS, keep it indefinitely.
How long do people whose sons can hold a conversation keep anything anymore? My wallet swells with ATM receipts. “It is a good idea to keep the receipts,” I read on some discussion board, “reason being that the dispensation from the ATM and the debit to the account are async process. There are multiple handshakes during this process between the hardware of the ATM, the software controlling the ATM and the core banking software. like any software programming, there are chances of errors, ie amounts being debit wrong due to bugs, or duplicate of transactions being posted.” Got that?
Jill tends to create more piles and address them faster. When Alex was still a baby living in the hospital, she rigged a half-dozen manila folders in a rack to process, and eventually throw out, paper from insurance companies. She luckily never confronted today’s blizzard of Explanations of Benefits from insurers.
“This is a not a bill!” it says across the top. “Payment Amt: $0.00.” Then why do I have to think about it? Don’t make this more than it is.
Samantha, autism mom writing on the blog Simply Organized, tells us about the labels on her special needs binder:
· Contact Info for Therapists;
· Current Therapy Schedule;
· School District (this includes IEPs);
· Assessment Results;
· Medicaid;
· Sample Medicaid application;
· Evaluations.
Abby chimes in:
· Start by simply gathering all the paperwork for your child. Anything related to your child’s special needs goes in the box. You’ll get a sense of how much you have and see that it can be corralled.
· Find a safe place for the box, and when you think you've tracked down all your paperwork, give yourself another week (to find more).
· Track down smaller boxes. You should have a sense of your categories, so you may be able to label those boxes already: insurance, school, state services, private therapy, medical bills.
· Over the next week or two, work in 15-minute increments to sort your papers into boxes. Set a timer – don’t try to do everything all at once. Don’t worry about ordering documents, just sort. Put in 15 minutes once or twice a day.
· Create digital copies.
Wastebasket to my right I sift and toss, read and toss, sift and read and toss for a 15-minute increment. Along the way I find an old copy of Elements of Style and a silver heart Jill bought for me a few years ago in Mexico. (“You never even unwrapped it!”). Out goes sheet after sheet.
I know I won’t need it. Why did I keep it? If I need it I can get a copy. Why did I keep it? For the same reason anybody keeps anything: No one told me what else to do with all this paper and still keep everyone safe.
(Read Simply Organized at http://besimplyorganized.blogspot.com/2012/10/organized-special-needs-paperwork.html).
(Read Abby’s complete entry at http://www.sheknows.com/parenting/articles/814462/create-an-organized-medical-file-for-your-special-needs-child-1).