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Organization for the Special Needs Parent

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Staying on top of kids’ schedules, appointments, and developmental phases is time consuming for any parent. For those who are parenting a child with special needs however, organization becomes absolutely key to your child’s health and your sanity.

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Over the last decade, I have attempted to organize our life with varying degrees of success.  Some things I tried worked for a time, others completely failed, and some have stood the test of time.

Here’s what we’re using right now that is working well for our family.


Annual Physicals and Immunization Records:

I use this handy little organizer. It’s a one-stop location for all four kids and their most basic medical info. Inside, each child has their own section with sheets for appointments and a place to record anything significant that was discussed. There is also a list of immunizations so you can easily record the date each one was given.


A good old-fashioned binder with dividers and plastic page protectors is tool that just doesn’t go out of style. Page protectors allow me to see each page as I flip through. This makes the hunt for test results or appointment notes simple. The great thing about the binder is that you can organize it however you need to based on your particular situation. Some of our sections are:

  • appointment notes
  • monthly/quarterly/annual therapy reports
  • test results
  • imaging reports
  • prescription/treatment orders
  • letters for school


Like most special needs parents, we have a whole hall cabinet designated for medications. But we also have a small wire basket that lives in our kitchen. This houses the daily medications and its visibility makes it impossible to forget to give our kids the medications they require every day.

Refills are a cinch when I can do it right from my phone. Our pharmacy has an app that creates a profile for each member of our family, and I bet yours does too. Our app also keeps track of how much money I’ve spent on medications for the year which, come tax time, is quite helpful!

Most insurance companies allow you to mail-order three months worth of prescription medications at once. This will save you a lot of time in the car and in lines. Ordering in bulk often saves you a couple of dollars as well. If you’re like me, anything that saves time and money is a gift.

Services and Other Paperwork

A basic file box is a necessity that cannot be emphasized enough. This is where I store letters and bills from insurance companies, regional centers, and therapy or medical centers. As you know, staying on top of the paperwork is not only vital in getting your child the help they need, but it’s also overwhelming and never-ending.

So I create a file for each organization that I’m dealing with. When another denial or confirmation of services comes in, I stick it in the corresponding file. It’s simple, doable, and effective.


Thankfully, more organizations and medical providers are using e-mail to communicate. When a message comes in, I immediately move it to a file created specifically for that organization. Once a week, I go through the files and tag each e-mail. Then when I go looking for a particular message, I have far less to sort through . Some of the tags I use are:

  • medication
  • bills
  • reports
  • insurance statements
  • appeals
  • correspondence- other


Your family is unique, and your organization methods will reflect what works best for you. However, hopefully you now have some ideas that will get you started on simplifying your busy, special life.

photo credit: The Down Syndrome Association of Central Florida’s Step Up for Down Syndrome via photopin (license)

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