The following excerpt is taken from Chapter
10 of Autistic Spectrum Disorders: Understanding the Diagnosis and Getting
Help by Mitzi Waltz, copyright 2002 by O'Reilly &
Associates, Inc. For book orders/information, call
(800) 998-9938. Permission is granted to print and distribute this
excerpt for noncommercial use as long as the above source is
included. The information in this article is meant to educate and
should not be used as an alternative for professional medical care.
Time is money, and there's no worse waste of both than losing that
all-important referral slip or medical report. File every single piece of paper
you get from your doctors, therapists, insurance company, service agencies, and
school. This includes assessments, evaluations, diagnostic reports, report
cards, test results, IFSPs, IEPs, etc. Be especially sure to save copies of
your own correspondence. You can be sure that you'll need it later, if only to
impress some recalcitrant official with the depth of your organizational
A portable plastic file box with a handle can be a real boon. You can carry
this box to IEP or other meetings easily and have absolutely everything right
at hand. Put your documents in labeled folders or large envelopes. Typical
sections include Educational, Financial, Medical, Psychological, and
Social/Recreational. If an item fits two categories, file it in one folder and
make a note on the outside of the other folder about where it is. These folders can also help you keep track of relevant articles, photocopies, and computer printouts.
Try to file items as they are received. It's much more difficult to go
through a whole pile of documents that have been tossed together.
Daily record keeping
It sounds time consuming to keep daily records, but it can be essential for
monitoring the effect of dietary changes, medications, vitamins, or
supplements. It's also important for assessing behavior patterns and sleep
The easiest thing to do is use a small notebook or daily planner
specifically for this purpose. This journal can also be used to keep track of
medical, therapy, and school appointments.
It's more precise to bind a year's worth of photocopied pages with important
items prelisted to jog your memory or to create a customized electronic journal
on your home or notebook computer. Items that you may want to include on your
journal pages, either as fill-in-the-blank listings or checkboxes, include:
- Medications taken, with time and dose
- Vitamins and supplements taken, with time and dose
- Food and drink taken, with time and rough amount
- Observable reactions to any of the above
- Bowel movements and urination (time, amount, characteristics, etc., as needed)
- Any medical or emotional problems observed, with comments
- ABA or floor-time sessions completed, with comments
- Therapy appointments, with comments
- Medical appointments, with comments
- Recreational activities, with comments
- Self-care activities, with comments
Depending on the individual, there may be many other items to add to this
list--or far fewer may suffice.
Other items that you should always have on file include a current profile of
your child (strengths, weaknesses, abilities, areas of deficit), a list of
current medical or psychiatric concerns, and a list of past concerns and how
they were addressed.
Many parents and patients like to jot down a few personal notes in their
daily journal as well, when they have the time. You might mention how you're
feeling, how your relationships are faring, what stresses you're
under--whatever helps you unwind and put the day in perspective.
Be sure to save your journal, even if it's just a list on your computer.
You'd be surprised how handy the information you have gathered might be in the
future. It will help you take a long-term look at what's working and what
isn't. Although it's possible to become a bit obsessive about observing your
child's every mood, reaction, and action, all of these things may be clues to
her medical condition. Playing detective may give you the key to a breakthrough