A Life Apart: Parent Perspective on Living with a Child with Asperger’s

LESSON FIVE: Organizing the Paper Trail

THE PAPER TRAIL

Once the child is diagnosed, you enter the world of record keeping. We all keep records of some sort – bills paid, taxes paid, medical expenses for the IRS, etc. But it is striking how quickly you will build up files full of records even for a young child. I often am amazed to realize that two filing cabinets are for my son only. Or that the school records for him total three boxes, per the special education administrator. Most adults never come anywhere close to having such a paper trail for one individual. It is sobering to realize the sheer volume of reports, testing, individual education plans that all relate to this one person, sometimes a very little person.

You are entitled to a copy of every school record. Check with your school system and see what their record-retention policy is (three years, five years?)
Do you need a copy of every piece of paper? Probably not. But you may ask for everything and then weed out what you might not need.

How to File and manage the Paper Trail

There is no one “right” way. And whatever advice I give, I learned the hard way because I am not consistently organized and not a big-time planner. If you are an organized person to begin with, you are miles ahead.
My first system that started back in 1985 was very rudimentary. I would put everything in manila folders and didn’t necessarily figure out how to categorize or label the folders. This went on for awhile and the file drawers got very messy and overstuffed.

So, I took a different approach. I got about six large three-ring binders (3-inch) and a sturdy three-hole punch and organized all the IEPS in chronological order in one notebook. Another contained psychological tests and reports and neuropsychology tests and reports. Another was reserved for language and OT.

Another system is to file all related materials chronologically, e.g. have a notebook for each grade. I found it easier to group by category, especially when seeing a new professional provider who might ask for only one type of prior report, I could access it easily.
In each binder, keep the most recent reports in the front. Most of the time, you will be asked to provide those when seeking another evaluation.

This is my system – only a suggestion after many years of messy, overflowing, fat folders stuffed into a file cabinet.

Those notebooks or binders will be pulled out less often than the all-important notebook. I suggest starting and keeping one notebook, in which you record every conversation, every phone call with a teacher, administrator or other provider. Each interaction should be dated and detailed. And when that notebook is full, start another. My tendency was to grab a different lined pad every time I went to a meeting, so I had pages and pages of pads with notes but no coherence or chronology. If you ever are in a dispute with your LEA, you will need to be able to provide documentation.

ASSIGNMENT: Getting Started

Go to Staples or another large office supplies store and check out different filing or organizing tools and make a plan.

Activities: If you are too far gone in a quagmire of messy folders, piles of paper and general disorganization, call a friend who is super-organized and ask for one or two hours of time. Barter that person’s skills with a skill of your own if paying a friend feels uncomfortable.
Or if you really are swamped and overwhelmed by the paperwork that you have neglected, hire a professional organizer. The few hours of that person’s time might provide long-lasting value. I wish I had invested in that idea years ago.