Tag: Advocacy

IEP season is coming to a close in my neck of the woods.  It has been intense.  We hired an advocate for the first time in Eliza’s educational journey.  I am glad we did.  For the first time, I didn’t have to say much during the two meetings (4+ hours) we’ve had so far. It was a revelation.  And, I didn’t know what to do with myself.

Nothing has been finalized for us, but, the awareness that we have someone else on our team who speaks the school district’s language and understands how to articulate our goals for our girl is a gift.

We are going into overtime, people!  Summer sessions!  I still don’t really understand what that means, but I think our advocate does.

Aside from our personal experience, I have been curious about how other parents of childen with CVI fare during an IEP season.  I did some reading.

I found this timely quote from the book, Vision and the Brain:

“As professional understanding of CVI increases,

it will be incumbent upon medical and educational systems internationally to explore ways to best provide services to the full spectrum of affected children.

This collaboration may lead to

additional, mandatory training for specialists,

reconsideration of guidelines and regulations for entitlements to services related to visual impairment,

and

reconfiguration of educational environments to accommodate, as part of universal design, the learning needs of this population.”

Dutton and Lueck, Vision and the Brain – Understanding Cerebral Visual Impairment in Children, (Introduction xix)

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I wondered –

If professional understanding of CVI is increasing –

and we CVI savvy parents, therapists, educators, and ophthalmologists are doing everything we can to get professional understanding of CVI to increase-,

Then what is happening in terms of

“additional mandatory training for specialists,”

“reconsideration of guidelines and regulations for entitlements to services related to visual impairment,”

and

“reconfiguration of educational environments to accommodate… the learning needs of this population“?

I asked a lot of questions to moms on FB pages. I called a few of them. Several of the moms were kind enough to write me back or take my calls. And, these are busy ladies. I emailed a couple of organizations to ask about how they are addressing the increase in referrals of children with CVI.

This is just one random mom’s curiosity about how other people and places address the challenges our family faces.

There was a wide variety of experiences.

Worse case scenario:  I was able to sit in on a due process hearing (about which I can say very little).  Due process hearings are where you end up if you come to an impasse with your school district.

Best case scenario:  There are some districts and areas of the country that are acknowledging CVI and, better yet, acknowledging the need to learn how to teach children with CVI.

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Worse case scenario:  This IEP season, I sat in on a due process hearing for a family who has fought for years  to have their daughter included in a classroom with proper accommodations for her diagnoses of CVI and hearing loss.

Four hours later, I had developed a tic under my right eye and drawn a binder full of unflattering renderings of the school district’s opposing council – a school district which has put this family through 7 levels of Hades over several years.  The hearing went on for three more days.

I was frustrated for my friend and her daughter.  I have spent time with this bright eyed girl and seen how she has learned to communicate.  As a matter of fact, it was meeting her that renewed my hope that Eliza could learn to communicate.  Because – in spite of odds that would curl your hair (my Appalachian grandma’s saying) – her mother would NOT give up hope.  She educated herself about cortical visual impairment.  She sought out experts.  She created a learning environment and trained providers to serve her daughter at home while she fought the school system for appropriate placement.

In the conference room, I sat and listened to words.

Complicated children.  Medically fragile children.  Children with sensory processing disorder/sensory needs/sensory loss.

Words that sound frightening and complex.   Words that sound impossible to overcome.

Then, I started counting ceiling tiles because the words were too close to my own experience …. 1,2, 3…).

What about the common word in these phrases – children?

Children.

They are children first and foremost.

The word – the child – can get lost in the diagnoses, in the assessments and evaluations,  in the IEPs and the litigation.

(…68,69,70….It was easier to count tiles than to follow the legalese.)

This is a child.

This is a child who can learn.

This is a child who is motivated to learn.

The sparkle in her eyes, the way she claps her hands to say “yes” in response to a questions, the way she laughs when she chooses her favorite toy, the fact that after years of physical therapy, she is becoming strong enough to stand on her own, these are details which should be celebrated.  These are strengths we can build on.

Personal details get lost in testimony.  “Sparkle” doesn’t translate very well to the courtroom.  Nor do the hours of trial and error to teach a communication system, or to systematically teach a child to use her vision.

How can you get stern faces to understand the joy you felt when she answered a question for the first time?  When she learned to say “yes?”  What that means for her cognitive ability and her potential to learn?

And, if I felt that way in one afternoon, I cannot even imagine what her mother felt in 4 days of testimony.

She was so polished and poised.  She explained in measured tones about her daughter’s challenging medical history.  About her family’s tireless efforts to teach their daughter when school placements beginning with preschool failed over and over again.

(1001, 1002, 1003….)

This mother is looking for a place where her daughter can learn, where she can belong.

It’s just that simple.

Maybe not easy, I’ll grant you that.  I live it.  I get it.

But simple.  And, do-able.

And, the attorneys argue about dates and emails and who did this or didn’t do that.

I cannot talk about what they discussed or what was decided.

It is all so painful and absurd that I had to go to my happy musical theater place.

Boy, if there was ever a place that needed a musical number, it was that conference room.

Listening to the debates and the arguments, I began hearing the song “Somewhere” from the movie West Side Story.   The song is performed by the star-crossed lovers, Tony and Maria.  Maria’s part was sung  by someone who was not Natalie Wood but lip-synched by Natalie Wood (because, in 1961, actresses of actual Hispanic origin were cast only as chorus dancers or Rita Moreno – who nailed it!  Bear with me here. There is a point.)

Cue the orchestra: Sing – um-, lip synch it, Natalie!

“Theeeeeere’s aaaaaaaaa   plaaaaaace for us.  There’s a place for us. Somewhere a place for us.” 

That’s what we are looking for humorless suit people who wield too much power over a little girl’s education.  If you truly understood what this girl, what her family has been through -if you truly understood ACCESS–argh.  I can’t say anything… but no one said anything about SINGING….

SOMEWHERE

A PLACE FOR US

PEACE and QUIET (and no bickering attorneys and stern faced judges) and OPEN AIR

WAIT FOR US 

SOMEWHERE

Somewhere a place our children can be taught in the manner they can learn by educators who believe they can learn.

A place for us.

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This IEP season, I spoke to other mothers who took the time to comment on the challenges or successes they were facing in their attempts to get their children ACCESS to a Free and Appropriate Public Education.  Several of them wrote posts for CVI Momifesto.  They are teaching the rest of us as they fight for their children.

The following conversations are happening in conference rooms in schools all over the country as

more and more children are identified with cortical visual impairment

and as more and more parents ask school districts how they will accommodate their children:

“We aren’t mandated by law to learn about CVI.” – Educator in Florida
“But, you are required by law to teach my son” – CVI Mom in Florida

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“You want us to fix your child.” – Educator in Indiana

“She doesn’t need to be fixed. I want you to believe you can teach her. I want you to teach the way she can learn. ” – CVI Mom in Indiana

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“We are past tears here.” – CVI Mom in New York discussing the extensive list of accommodations she insists are in every draft of her son’s IEP

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What I see in the examples from a due process hearing and from conversations from IEP meetings is that

school by school, meeting by meeting, family by family, mom by mom –

momentum is building.

(Oh my gosh, it’s MOM-entum!   I just blew my own mind.)

Parents are educating themselves about CVI and demanding to know how the education system will accommodate their children.  

Image:  A dance scene from West Side Story.  Women and men in colorful dresses and suits with one arm raised.

I will post more on the places where school districts and organizations supporting the blind and visually impaired are taking the necessary steps to improve how they identify and how they accommodate children with CVI.

THIS IS REALLY HAPPENING IN SOME PLACES IN THE U.S.!  SOME PLACES IN THE U.S.  CVI PARENTS DON’T HAVE INDENTATIONS ON THEIR FOREHEADS FROM BANGING THEIR HEADS INTO A BRICK WALL OF IGNORANCE AND LOW EXPECTATIONS.

“SOME HOW, SOMEDAY, SOMEWHERE!”

Let’s dance!

For now though, I have to be at a 6th and 8th grade graduation in – oh dear – 4 hours.