Friday, January 23, 2015

Tracking Paperwork for Special Needs Kids--My Autism Binder

  • Hello!
  • With six children, four of whom are on the autism spectrum and my toddler receiving services for speech and sensory issues, I need to be an organized mom.  Admittedly, some areas of my life are better organized than others.  Today I want to address something I've never really seen talked about--the sheer amounts of paperwork that comes with a special needs child and how to organize it.
  • Whether you are like me with one or more kids with special needs and you've been doing this for a while, or a mother with a newly diagnosed child, you need a way to keep track of the appointments, progress reports, evaluations and 504, IEP and IFSP paperwork.  If you have a newly diagnosed child, I want to especially welcome you.  Take a deep breath and know that it will be okay because YOU ARE NOT ALONE.  You need to know this because I made so many missteps when we were first dealing with a new diagnosis.  The biggest one was not reaching out and sharing with others.
  • I will save the journey to diagnosis and acceptance for another post.  I just want to say that I struggled with the implications of "labeling" my child (Firstborn) and what it would mean for his future opportunities.  The fact of the matter is, he has Aspergers and my being in denial wasn't going to change that.  Also, in the end, not tracking everything made life difficult when we found we did need some accommodations after our move to our current home. 
  • A friend of mine pointed me to a parent advocate who had a wealth of information.  The advocate also sent me a set of binder dividers that has made a world of difference.  There are seven dividers.  The sections are: Communication, IEP, Evaluations, Progress, Resources, Advocacy and Medical.  You can create your own binder with tabbed dividers and a labeler.  I highly recommend you do this as soon as possible.  
  • To help you create your own binder, I've posted pictures below.  The ideas in this can apply across the board for any child with special needs.  I have a few other friends with special needs children.  One friend has a child with a metabolic disorder, Propionic Acidemia.  Her daughter's body cannot break down proteins and they become toxic to her.  When I first met Britney, the life expectancy of kids with PA was about three years old.  Her daughter was five.  She is now about twelve and doing great thanks to Britney's care and documented monitoring. 
  • So onto the binder...
 A cover shot of our 3" ring binder

 The binder dividers

  • At first I had no idea how to use what she gave me.  Then I looked at labels and began to examine what I had in terms of paperwork.
  • Firstly, since I have multiple children this binder services, I created mini dividers for each section with a simple piece of green paper with the child’s name written in the bottom right corner.  They are arranged chronologically from oldest child to youngest.  The newest information always goes on top.  
Green paper dividers with the kids' names stand out

An ADHD evaluation
Under "Communication" I've kept copies of emails and notes from teachers, official notices of IEP/IFSP/504 meetings, my letters and emails, and letters about services received/denied.

In the "IEP" section, I keep all the notes (mine and the official ones I get sent) from IEP, IFSP and 504 meetings.

The "Evaluations" mostly consists of outside evals, but also ADHD evaluations from teachers, and myself.

"Progress" contains the progress reports I received from speech and occupational therapies.

"Resources" is in separate 1.5" binder because it contains ideas found online, local support groups, practical therapy ideas and handouts.

This binder is dedicated solely to the resources available for families with Autism

I confess I don't have anything in the "Advocacy" section. Though you could include the "Parents Rights" handout the give you every six months or so, communications with parent advocates specifically, ideas for making meetings go smoothly, etc. 

Our "Medical Records" contains the official diagnosis, medical reports from a variety of doctors including one child's discharge papers from "food therapy".  I only keep Autism and ADHD related medical papers in the Autism binder, and I have a backup copy of key reports in a medical binder I have for the family. 


So that's it--that's the tour.  I hope this breakdown of ideas helps you feel empowered to meet the challenges of special needs kids.  My own kids have taught me so much and are among my greatest blessings.

Good luck to you!

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