Death by IEP / A New Category (Not a previously unpublished Agatha Christie novel…although wouldn’t THAT be cool? …but I digress.)

Hello fellow families of glorious children who happen to have Cortical Visual Impairment,

It’s IEP season at our house! 

That festive time of year parents of students with special needs eagerly anticipate with the kind of glee small children save for Santa.

Deck the halls with articles about neuroplasticity and webinars on Orientation and Mobility….Fa La La La and the CVI Range….. Ho Ho, ah phooey.

I can’t fool you.  I am not jolly.

Technically, it’s always IEP season at our house because I continue learning what I have to ask for and how to advocate for my complicated girl with a brain based vision impairment not currently acknowledged by the vast majority of school systems in the U.S.  More importantly, it is not acknowledged by, or regulated in, the current laws of Special Education.

Ho Ho – Holy Crud, this is hard. 

(To get us all on the same page, here’s a very basic definition of an IEP.

“IEP stands for Individualized Education Program.  An IEP is a written statement for a child with a disability  that is developed, reviewed, and revised in a meeting in keeping with certain requirements of law and regulations.

The IEP has two general purposes:

(1) to establish measurable annual goals for the child;

(2) to state the special education and related services and supplementary aids and services that the public agency will provide to, or on behalf of, the child.

When constructing an appropriate educational program for a child with disability, the IEP team broadly considers the child’s involvement and participation in three main areas of school life:

• the general education curriculum
• extracurricular activities
• nonacademic activities”)

Source:  http://www.parentcenterhub.org

By the way, we parents are a critical part of the IEP team.

Don’t let anyone tell you otherwise.  Especially when it comes to CVI.  We have a long, bumpy road ahead of us, but we are the ones getting educated about CVI.  We are the ones seeking out experts, reading journals and books.

(Speaking of BOOKS, Dr. Roman-Lantzy’s NEW book, Cortical Visual Impairment: An Approach to Assessment and Intervention, 2nd Edition is out!!!!

Go to the AFB Store to check it out! 

https://www.afb.org/store/Pages/ShoppingCart/HomePage.aspx 

Then Celebrate!!)

We moms and dads are critical members of our children’s IEP teams.  We stay up late researching articles on CVI and our children’s other needs and diagnoses.  We print them out the night before.  We highlight and staple the articles filing them in manila folders with our children’s names written neatly on the tab.  This is our attempt to have some control over a situation in which we have nearly no control whatsoever. (Or maybe it’s just me.)

Image:  A haggard woman in sunglasses holding stacks of research in each hand prior to an IEP meeting.

I am a perpetual optimist, much to the annoyance of my husband and some of my friends. Yet, despite my tendency to be ridiculously optimistic in the face of dire circumstances, I am worn down by years of IEP meetings that seem to go nowhere.

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I have not learned the skill of successful IEP planning.  I am embarrassed to admit this. My daughter is now 11-years-old and I still feel inept and ineffective.  I feel as though I should be smarter than this.  

Googling “IEP assistance” brings up  many, many resources for IEP writing and advocacy.  I suppose I am in good, if frustrated, company.

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In spite of plenty of effort and research, I  haven’t been particularly successful in articulating how Eliza needs to learn and how the school needs to put it in place. I’m worn down by giving each new school and each new teacher the benefit of the doubt for a few months,  then discovering that the implementation of what we put in the IEP was not carried out.  I’m worn down by insisting that she can learn more than the school thinks she can (“The downward spiral of low expectations.”).  I am worn down by seeing stacks of articles I printed out, untouched on someone’s desk.  Or, never seeing them again.

Image:  A dining room table covered in papers, low tech communication devices, pictures and binders in preparation for an IEP meeting

Every year I spend  hour after hour attempting to convince, cajole,  and then, demand that the school team learn about how CVI is an obstacle to my child’s ability to learn and WHAT TO DO ABOUT IT.  I have hired private consultants and therapists with money I do not have.  I have documented the progress we make at home to take to school to show what Eliza can accomplish with mutual goals, high expectations, and a common understanding of how to navigate Cortical Visual Impairment because it is an issue every waking second of her day – much like my typical vision is with me every waking second of my day.

Meetings are planned.  School staffs are polite and weary.  Meetings end.  Everyone needs to get back to their jobs.   We agree to disagree.  I refuse to sign the document, or sign in partial agreement with my handwritten list of concerns.

The NEXT IEP meeting is scheduled in a couple of weeks so we can all jump back into the ring and continue the match.

And, before I know it, another year has passed.  I have been humored and circumvented without even realizing it.

I drag myself home after another IEP  meeting to nowhere like the last contestant in a 24 hour dance marathon.  I’ll crawl into a quiet place to sit and stare vacantly for awhile.  (Sometimes I find myself mumbling, “The horror, the horror…”  Ok, that was a slight exaggeration.  Maybe, “the frustration, the lack of understanding…access…..it’s about access, dang it”  Yes, that’s more like it.)

One night as my husband was coolly observing what used to be the dining table (see above), but is now my Command Center For Changing Education As We Know It For Children with CVI  – (too much?) – he commented,

“It’s like Death by IEP.”

And, suddenly my world made a little more sense.

So, now CVI Momifesto has a new category for all of the fun, D-I-Y projects that are our children’s IEPs.   This category will be a place to tell the IEP stories and to share what works and what really doesn’t work.

Image:  A post-it note with the words “This is baloney” written on it.  The post-it note is on a copy of an IEP.

To be continued…..