My name is Caitlyn. I am 10 years old. I have Asperger's, (Autism) OCD, ADHD, and generalized anxiety disorder.

Saturday, September 11, 2010

Welcome to Acronym Hell 101

You'll notice many, many acronyms throughout this blog. Some you may be familiar with, others you may never have heard of. If you are brand new to your journey to advocating for your child, these can seem overwhelming and complicate anything you try to look up or understand in communications from the school.

I'm going to provide a short list of the most commonly used acronyms. A cheat sheet, if you will! This list is by no means complete - but hopefully it will be enough for everyone to understand my blog. I'm also going to link to what they refer to, if applicable.

  • FAPE - Free and Appropriate Public Education
  • IDEA - Individuals with Disabilities Education Act
  • LRE - Least Restrictive Environment 
  • BIP - Behavior Intervention Plan
  • 504 Plan - Covers learning problems, allergies, physical issues accomodations in a school, for individuals who do not meet the criteria for an IEP.
  • IEP Individualized Education Plan. Accomodations for a child found to be Special Needs.
  • RTI - Response To Intervention. Used by many schools districts now before referring for a special education evaluation.
  • OT - Occupational Therapist
  • PT - Physical Therapist
  • LSSP - Licensed Specialist in School Psychology
  • AT - Assistive Technology
  • EBD/ED - Emotional Behavior Disorder/Emotional Disturbance
  • AU - Autism
  • FBA - Functional Behavioral Assessment
  • IEE - Independent Educational Evaluation

How to create "The Binder"

The Binder may be the most important tool you can have for your child. It can be useful at IEP/ARD meetings; doctor's visits; therapist's visits; interviews with new potential professionals; filing for SSDI; contesting an SSDI denial; and more.

You'll need a good 3" binder that you're comfortable flipping through. I really like the ones with the zipper on the outside but these can be hard to find larger than a 2". I repurposed one I'd had custom made for couponing to become ours; I obtained it on an Etsy alchemy listing.  (It says 2", but we went with a 3").

The black strap on the left lets me carry my netbook with me (this was before I got my iPhone), the entire thing zips up, and it has a thick webbed carrying strap on the spine so that I can wear it like a messenger bag. The best part is that since it's a cover, if the binder ever breaks all I have to replace is the actual binder.

Now, you want to put EVERYTHING that involves your special needs child within this binder.

  • "Letter to a Stranger"
  • Medical reports
  • Psychiatric reports
  • Testing results of any kind
  • Report Cards, Progress Reports, BIP percentiles reports
  • Letters from Teachers and Mentors about observed behavior 
  • Print outs of all emails from Teachers or other related professionals
  • Print outs of all emails from any medical professionals 
  • ARD/IEP reports, updates, consents
  • Any disciplinary sheets (like detention forms)
  • Early Childhood Intervention reports
  • if necessary, Birth Records from the hospital (APGAR scoring, etc)
  • List of developmental milestones reached and at what age
  • any writing, artwork, or school assignments that stood out to you as an example of something your child is seriously struggling with or seemed "off"
  • A log of scheduled ARD meetings to refer back to, with a VERY brief synopsis of what was discussed or agreed to
  • A list of accomodations in place
  • A list of accomodations desired but not yet obtained
  • A log of scheduled therapies with dates (your insurance may only cover a certain # of visits per year, so this is a good idea to keep track)
  • A log of any attendance to events that your school's Special Ed department holds (Family Counseling, Love and Logic parenting courses, Emotion Coaching courses, etc). 
  • Birth certificate and Social Security Card*
 I highly recommend making more than one Binder. I was able to make a complete copy of all the above paperwork for less than $10 at Kinko's. I keep the originals at home and a set of copies go with me to ANY meetings.

I use index tab divider pockets instead of just tabbed solid sheets. Smaller pieces of paper fit neatly into these for the appropriate sections. Or, for example, I put the log of our ARD meetings in the pocket for the ARD section for quick reference. Ditto therapies, etc.

*You don't have to include the last one, but I'm constantly suprised at how many times I'm asked to provide this information. Sometimes it isn't actually required, just requested; other times, such as when dealing with SSDI, it's required. If you do carry these items with you, guard them with your life!

It can be hard to organize at first, but then it becomes routine. You carry it to therapy, you open it up, you write down today's date on the log and close it back up. You receive new ARD paperwork, you throw it into the 3hole puncher, you put it in the ARD section. Etc.

As it gets full and possibly hard to find the things you want to refer to (ARD paperwork is notorious for this!), use Post-it notes, flags, highlighters - anything that will help you make it easy to use. I like Post Its because not only can they stick off the page like a tab, but I can write on them to remember what I was going to ask about that particular thing.

Yes, my 10 year old shops at Victoria's Secret

SHHHHHHHHHH!

Because this is truly the best-kept secret out there for sensory-sensitive girls. How many of you out there deal with "The Underwear Meltdown" in the mornings? Do you have 3 drawers full of sixty billion pairs of undies in 6 different sizes and cuts, and your child can't find one pair that "feels right" that morning?

Yes, Victoria's Secret can end this battle... for a select range of sizes, of course. I'm talking about the Body by Victoria Bare Ultimate Hiphugger at 3/$30 or $11.50 each.

These are not sexualized underwear for children. What they *are*, is totally seamless (it's some sort of stitch-witch product used to close the edges) and magical no-unraveling trimmed openings that don't contain a binding of any type. Totally smooth, and not risque. These cover more than most brands we'd tried.

The sizing guidelines adjusted for a child would be as follows:
X-Small 8/10
Small 10/12
Medium 12/14
Large 14/16
X-Large 16/18+

They also have a similarly constructed Ipex Wireless Bra that starts at a 32A. I know a regular bra is torture for me (minimal sensory issues), so I can't imagine trying to put a regular bra on a sensory-sensitive child.

It may be difficult to have your Aspie grrl sized properly (issues with being touched, the large store, bright lights etc) but their return policy is good; ask about it. It may be your easiest bet to take several sizes home and then try them out and return what doesn't work. Sign up for the credit card if you can for the additional discounts; while these prices won't break the bank, unfortunately the stitchwitch construction used only lasts about 6 months before seperating at the "seams".

This made our mornings SO much easier, right next to seamless socks. Unfortunately the seamless socks I've found? Aren't totally seamless. In the winter at least, we can get away with the chenille type "warm fluffy" socks that appear everywhere for $1-$6 per pair (and proceed to shed everywhere for awhile, sigh).