Tests, assessments…and paperwork

by Nikki

As any parent at any stage of the journey along the spectrum knows, the volume of tests and assessments you and your child go through is remarkable.

This is a sampling of the documents that – so far—have needed to be formulated, tests that needed to be taken, survey instruments that needed to be filled out and important notes that needed to be retained:

  • Screenings to measure IQ
  • Individualized Education Plan (IEP) copies from preschool on up
  • Individualized Service Plan (ISP) to guide state-funded therapies
  • Kindergarten evaluation and the state-required district evals every three years thereafter
  • Assessment and application for the Arizona Long-Term Care System (ALTCS)
  • Benefits statements and other insurance paperwork
  • Fragile X screening
  • Another genetics test I can’t remember right now
  • Glucose and other bloodwork for taking behavior meds
  • Ear and vision screenings before autism diagnosis
  • Notes from recommended-but-unneeded gastrointestinal doctor visit right after diagnosis
  • Endless survey instruments for parents and caregivers (daycare and then teachers)
  • The school’s Functional Behavior Assessment and resulting Behavior Intervention Plan
  • Daily behavior tracking sheets maintained by kindergarten and first grade aide
  • Developmental pediatrician notes
  • Quarterly speech therapy reports
  • Weekly feeding therapy reports
  • Records from regular visits with Division of Developmental Disabilities (DDD) caseworker
  • Notes, paperwork and ideas from autism programs, workshops and events

The fact that all of these things need to be done once or on an ongoing basis is something in itself. Your kid is poked and prodded along the way, and you are forever filling out forms and reading, reading, reading.

But the resulting volume of paperwork generated is what is truly astounding – and our home office is proof of that. There are files to be kept of all varieties. Where the heck is the most updated IEP at any given time? I have no idea. It’s there – I can find it with some digging and while enduring some grumbling and disdainful looks from the husband.

Organization is key. And, if you’re a parent who is naturally organized, you’re going to handle the task of autism-related paperwork really well. You’ll have master To Do lists of everything you were asked to follow up on at doctor appointments, and you’ll be able to readily determine whether the speech therapist’s latest activity is in line with their goals.

However…if you’re a parent for whom intense organization is but a dream, you’re going to forget to follow up on things your doctor told you to do between appointments, and said doctor (upon discovery of your lapses) will furrow a brow and be perceived by you to be silently judging you right there in the exam room…while you are silently judging yourself for failing miserably on behalf of your kid.

If I had a reliable scanner and the inclination, I might have scanned and electronically filed all of these years ago. I tried buying a massive drugstore binder and organizing things in plastic sheets within tabbed sections, but that soon became unworkable and therefore not maintained. Years of records have a way of overwhelming a binder quickly…and the kid is only 7.

I. NEED. AN. INTERN.

Sometimes I’m envious of stay-at-home moms because at least they have more time actually inside the place where the records are to be kept and, therefore, a chance at staying better organized. For me, my work office looks only slightly better than my home office when it comes to filing. There are many stacks in both locations.

If anyone has tips and tricks for how they stay organized in the realm of special needs paperwork, it would be so helpful to hear those ideas.

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