What a difference a year makes

 

 

Hello Fellow Families of Glorious Children who Happen to Have Cortical Visual Impairment!

One year ago today, I published the first post of CVI Momifesto as a way to vent and to gain perspective of my experience as the mother of funny, strong willed, curious girl who happens to have several diagnoses and who also happens to be cuteness personified.

It’s been quite a year.

I wanted to comment on the year in this post.

But, as happens with life and especially with life with a kid with special needs, a lot happened over the summer.  There hasn’t been much time to process or to have a coherent string of thoughts.

I started to write a post about the year and the summer.

This is what I wrote instead:

Over the past 3 months, my girl, Eliza, has turned 12 and graduated from elementary school.  She wore the same dress her sister wore when she was 12.  She enjoyed  being a part of the ceremony, grinning from ear to ear as she walked by all of the kids dressed up in their fancy graduation clothes.  She laughed with her teacher. She danced with her dad after the festivities.

This kid.

This kid came into the world defying odds given to us by doctors in starched white coats.
Baby E blk white

This kid turned 12.
my girl E at graduation

There was so much drama around her birth.

The Doctor.

In the whitest coat I’d ever seen,

with the beard trimmed so precisely

I sometimes wondered if it was fake.

The doctor observed us,

the anxious couple

husband and very pregnant wife

from behind the safety of the desk of polished dark wood.

On the wall,

framed diplomas and plaques attested to the

depth and breadth

of his

infinite

knowledge.

On a shelf to my right,  a book caught my eye.

How to Give Bad News.”

(It’s interesting the things you remember at a time like that.)

It was a very serious moment from a very solemn doctor in a very white coat.  The moment demanded a lot of “verys”.

Everything was “VERY” in screaming capital letters.

The Doctor told us she would never

walktalkbreatheswallowseehearspeak

It all became one long horrible word to my grasping, uncomprehending brain.

Basically, you name it.

She wouldn’t do it.

As a matter of fact, she would probably never leave the NICU.  She would have no quality of life…..medicallyobligatedtoadvisetermination….

He really needs to reread that book.  He sucks at this.  VERY.

It’s interesting the things you think at a time like that. 

Then,

I kid you not,

Eliza – who had not been much of a mover or a shaker in utero – did a full on somersault as if to remind me just who we were talking about here.

The sudden shift in my body

the VERYEST

literal

punch

in the gut.

—————————————

The Doctor,

VERY knowledgeable about many things

the rectangles on walls behind him told me so,

had many other things to say after that.

But, I couldn’t hear them.

Because Eliza had reminded me that she had not  been given her say in the matter.

———————————————-

We didn’t listen to The Doctor much after that.

———————————————

She arrived VERY quickly,

about a month later,

on her own terms,

without the horror story he had predicted.

 

The doctor called me in the recovery room later that morning.

 

“What gives?” he said curtly.

None of the customary pleasantries you might expect to give someone who has just given birth.

I explained that she hadn’t needed all of the medical interventions he had predicted.  No NICU.

A pause.

Then, he said, not a little smugly,

“Well, let’s see her when she’s 5.”

See that?  See what he did there?  

“Let’s see her when she’s 5.”

What The Doctor could not know – what I could not know – was that that phrase launched my journey with this kid.

That smugness

that assumption

that five years would prove what a mistake we had made.

The cold clinical certainty that her life would not have value.

And that it was

his

decision to make

Sparked a fire in me that exists today.

When she did turn 5, I thought a lot about taking Eliza to see The Doctor again.

I thought a lot about it.

I entertained many a revenge fantasy about it, to be honest.

Some vandalism may have been very entertaining in a couple of the fantasies, but I’ll just leave that there.

She was keeping me pretty busy at the time.

I ultimately realized

If I did take her to see him,

because she is built a bit differently than your average kid

(whatever THAT means)

He could look at her

and feel completely vindicated.

I,

looking at the same girl,

knowing her the way I do,

would happily introduce him to her in all of her unique Elizaness,

(Maybe I’d even hire a mariachi band to accompany us to his office for an introduction?  Fireworks and a pony for everyone?  Too much?) 

and feel completely vindicated.

And, there you have it.

Our impasse.

Proving him wrong was not the way to go about this.

There was nothing to prove.  

We have a life to live.

I live with a beautiful, challenging mystery of a kid who has screwed up my sleep for the past 12 years.  I’m still trying to figure her out.  Sometimes I lose my patience.  Sometimes she loses hers.  She pats my arm and pulls me close for kisses.  She loves her people.  She is intensely curious about the world.  Nothing thrills her more than holding hands and running with one of us in an open field.

I am embarrassed to say that I have only recently – too recently – figured out that she understands more than I gave her credit for.

She loves me in spite of my imperfections.  She accepts me for who I am.

We remain a work in progress.

 


 

So, a year ago today, I started a blog to get some of these stories off of my heart and out of my head.

There is work to be done, yes.  But, we have nothing to prove.


 

Holy cheese!  I just wrote about Eliza’s birth on Labor Day!  I just got that!  And, it’s 3 a.m. so I’m keeping this ridiculous exclamation right here!  Huzzah and so forth!

Good night! Or Good Morning! Or Whatever!

 

 

 

 

 

 

 

 

 

 

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.)

IMG_1947.JPG

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.


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.


 

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.

iep-hell.png

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.

Baloney

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…..