Nothing is Written in Stone: Looking at the AER 2018 Resolution with Dr. Sandra Newcomb

Hello fellow families of magnificent children who have been identified with Cortical Visual Impairment!

Long time, no blog post!

So, after the success of the American Conference on Pediatric Cortical Visual Impairment, I decided to dial it down a bit and spend some time with my family.  And, learn to play the ukelele, and run 3 miles every other day, and binge watch Fargo.

In July, a CVI mom friend of mine reminded me that Eliza’s older sister, AC, needs as much time and attention as I devote to E and her special needs.

AC’s life looks a lot like this a fair amount of the time.
IMG_0861

 

Or this….
sister squish
Upper:  Two girls in a rope door swing.  One girl is asleep on top of the other.  The girl on the bottom is smiling and holding a book.  Lower:  Two girls smiling and wrestling.  The younger girl is laying on top of the older girl who is grinning good naturedly at being squished.

 

AC is as kind as she is clever and funny.  Sometimes I need to be reminded that this kid needs her time too and I have to extract her from Eliza’s bear hug.

And, she starts high school in a couple of weeks.

WHEN DID SHE

AC baby

 

 

GET OLD ENOUGH TO GO HIGH SCHOOL?

Who is responsible for this?  I want to lodge a complaint.

Excuse me, I have to go hug the stuffing out of her….

Okay, I’m back.

So, I adjusted my to-do list.  I spent as much time with the teenager for as she would allow and I watched Fargo.  Success!

I hope you had some fun this summer.  I hope you had the chance to spend time with your favorite people.

Did anything interesting happen while I was gone or rather lurking in the background reading stuff and taking mental notes for the future?

Well, yes, yes it did.

Something interesting and rather unusual DID happen this summer as an attempt to affect the education of children with vision loss, and specifically Cortical Visual Impairment.

This summer, during the International Conference for the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) in Reno, Nevada, a resolution which included very specific language about the CVI Range was put forth, voted on, and passed by the attending members.

You need to be aware of this resolution.

AER and the authors of this resolution are making a statement about the work of Dr. Christine Roman-Lantzy, the CVI Range, and the recent attempts of parents to advocate for the appropriate education of children with Cortical Visual Impairment.

I have a few comments on this resolution, however, I thought it best to first ask for comment from Dr. Sandra Newcomb, from Connections Beyond Sight and Sound at the University of Maryland.  Dr. Newcomb’s research, published in the Journal of Visual Impairment and Blindness in 2010, validated the CVI Range.

Dr. Sandy read the resolution and added comments.  She very graciously allowed me to post her comments with the resolutions.  Most of her comments are in blue.  Emphasis is mine. When I got really emphatic I posted her comments in BOLD RED.


 

Proposed Resolution of the Association for Education and Rehabilitation of the Blind and Visually Impaired: July 2018
Assessment, Services, and Personnel Preparation to Support Students with CVI and their Families
Resolution Number 2018-001
Authors: Yvette Blitzer, Kathryn Botsford, Olaya Landa-Vialard, Sandra Lewis, Mark Richert, and Ye-Ting Siu
Whereas to receive a truly free and appropriate public education under the Individuals with Disabilities Education Act (IDEA), all children and youth with visual impairment, including those who may have additional disabilities, should be properly evaluated by teachers of students with visual impairments (TVIs) who are equipped with and use multiple assessment tools to determine such students’ individual sensory channels, functional vision, and learning media needs;
Whereas these types of evaluations are especially critical for the large and growing population of students who experience neurological visual impairment (frequently otherwise known as cortical or cerebral visual impairment; hereinafter, children with CVI);
Whereas TVIs must also have access to resources and participate in professional development opportunities in order to keep up with the changes in the diagnosis and assessment of CVI and appropriate interventions to minimize its effect;
Whereas whenever possible, assessments conducted by TVIs should include (as called for in IDEA) a variety of research-based, data-driven, and validated tools and strategies to gather relevant functional, developmental, and academic information;

 
Whereas there are currently no assessments available to TVIs that adequately address all the possible effects of CVI and/or meet the exacting scientific standards for research-base, and validated evidence; No assessments of what? Functional vision? Academic achievement? There is an assessment that meets scientific standards for reliability and validity for assessment of functional vision. Newcomb 2010, JVIB

 
Whereas frameworks for functional vision and learning media assessments commonly used by TVIs today are nevertheless based upon recommended practices in the field; But “practices in field” is not defined here.  There is evidence that current practices are from TVIs who have been trained using an ocular model of VI and of functional vision. There is valid research that describes the differences in ocular and cortical visual impairment.  This research reveals the frameworks for ocular are not appropriate for cortical.

 
Whereas there are multiple assessment tools, frameworks and strategies available for use by TVIs when conducting a comprehensive assessment of the visual functioning and sensory channels of children with CVI, the use of which serve to support of IDEA’s mandate for the use of multiple assessment tools; IDEA mandates assessment of functional vision, or how the vision impairment has an educational impact. Multiple tools are used for assessment of multiple constructs (medical tools for diagnosis, curriculum specific tools for achievement, speech/language tools for communication, etc.) These are the multiple tools for getting a comprehensive picture of a child with multiple challenges.

 
Whereas the CVI Range by Christine Roman-Lantzy is but one assessment designed to provide information on the visual and sensory functioning of children with CVI; It is only one assessment, however, in my review of the literature (both for dissertation and ongoing review) there is no other assessment developed for assessment of functional vision for children with CVI.

 
Whereas a package of continuing education opportunities bundled under the Perkins-Roman CVI Range Endorsement brand, and any other continuing education opportunity, are valuable resources to teachers and others who wish to hone and test their skills in the administration of the CVI Range; To date, Perkins has the most continuing education opportunities relative to CVI and to children with multiple disabilities.

 
Whereas some proponents of the CVI Range and the related endorsement are seeking to have policymakers and state and local education agencies require the use of the CVI Range and to require TVIs to obtain the endorsement as a condition on such TVIs’ provision of special education to children with CVI; Who are the proponents? And why should a local system NOT require the use of the only tool that is appropriate to assess the functional vision of children with CVI?

 
Whereas a TVI’s failure to obtain specifically branded continuing education opportunities, even if such opportunities are marketed as an endorsement, and completion of professional training in an assessment tool alone is no indicator of a provider’s preparedness to conduct appropriate comprehensive assessment or provide appropriate special education programming to children with CVI or any other students with visual impairment; Branded? Marketed? Why is it not appropriate for a professional to demonstrate proficiency in an assessment tool that they need to use? There are no other assessments (in any domain) that teachers do not need to be trained on to administer. This is especially critical when the tool relies on the teacher’s observation skills as the primary means of gathering information. When an assessment tool relies on teacher observation, it is critical that the teacher demonstrate he/she is reliable in their observations, otherwise the scores on the assessment are not meaningful.

No assessment in any domain can guarantee that a teacher is able to adequately provide meaningful interventions; however, lack of appropriate assessment data on which to base intervention strategies will guarantee inappropriate or inconsistent interventions.

Only when you start with an appropriate assessment can you hope to design appropriate, individualized, and targeted interventions.

 
Whereas university teacher preparation programs are addressing the needs of children with CVI and their graduates have beginning-level competencies and skills, which can be honed through experience, mentoring, and additional professional development; I have not seen any data, no published data nor anecdotal data, that indicates that university programs are addressing the needs of children with CVI, even at a beginning level. My experience on the MD/DC deaf-blind project, my private work in VA, NJ, WV, KS, and PA, and CVI mentoring in MS and GA have shown just the opposite. Parents and teachers are not prepared to meet the needs of children with CVI. They lack information and training, even some recent graduates of vision programs.

 
Whereas some states allow for individuals to circumvent university preparation teacher training and permit licensure of TVIs via (a) minimal coursework or a (b) test-only credential and functionally allowing individuals without adequate training in assessment of children with ocular and/or neurological-based visual impairment, or program development to assess, plan, and deliver services to children with visual impairments including those with CVI; This should never happen, no matter what state, for any TVI. States should not allow individuals to circumvent proper training.

 
Whereas individuals gaining TVI licensure via a test-only modality are not prepared to assess, plan, and deliver services to students with visual impairment, including those youngsters with complex disorders, such as CVI; Agreed!

 
Whereas it is imperative that parents and guardians of such students with CVI have accurate, complete, and unbiased information about the professional training and qualifications possessed by TVIs today who are evaluating and developing individualized education programs (IEPs) to meet such students’ unique needs; Agreed!

 
Whereas knowledge about neurological visual impairment and children with CVI is evolving rapidly, and a rich body of research and related developments from around the world promises to further enlighten and change educational practice over time;

and
Whereas requiring the use of a single specific assessment today, such as the CVI Range, or the express or implied imposition of brand-specific endorsement requirements on TVIs beyond state licensure and adherence to nationally recognized TVI standards puts students at risk of being denied the most up-to-date assessments and services and needlessly locks state and local educational agencies into practices and purported credentials with a limited shelf life that do not align with federal and state law and policy; For children with CVI, who must have (IDEA) a functional vision assessment, we must insure that the assessment is appropriate for children with CVI.

The CVI Range is, at this time, the only assessment developed to accomplish this task. While it is clear AER objects to “brand-specific” endorsement, there is nothing else that can insure that our children with CVI have an appropriate functional vision assessment.

This is the only the first step in appropriate intervention, but it is a step that cannot be missed or mishandled.

What are the “nationally recognized TVI standards” that include adequate information on CVI? What is more up-to-date? The phrase “purported credentials with limited shelf life” is very inappropriate and inflammatory, and a direct attack on the extensive work done at and through Perkins. The CVI Range endorsement aligns directly with the federal and state law and policy in that a child with CVI needs an appropriate functional vision assessment.
Now therefore be it resolved, that the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER):
1. encourages personnel preparation programs training new and pre-service TVIs and O&M specialists to include coursework in assessment tools, learning needs, and instructional methodologies to support the diverse needs inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities;
2. encourages parents and teachers in all states to educate lawmakers and call for the abolition of “test-only” pathways to TVI licensure and require rigorous university preparation as the only option to gain licensure as a TVI;
3. encourages current and new TVIs to pursue continuing education and/or professional development opportunities and training to keep abreast of the ever-changing practices related to students with neurological visual impairment in order to effectively meet the unique needs of children with CVI;

 
4. encourages state chapters and divisions of AER to advocate for and promote the appropriate use of multiple comprehensive assessments, as mandated by IDEA, thereby honoring all students’ unique needs for appropriate and reasonable accommodations that recognize the diversity of functional vision, learning media, and literacy characteristics inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities; while “multiple comprehensive assessments” are indeed necessary to address needs in a comprehensive way (communication, mobility, achievement, etc.), there are not, at this time multiple assessments to measure the functional vision of children with CVI.

 
5. urges the U.S. Congress, state legislatures, and state and local educational agencies to protect the integrity of comprehensive assessments conducted by TVIs both by rejecting calls that expressly or implicitly require the use of any single specific assessment tool or technique with specific populations of students with visual impairment and by refusing to impose specifically-branded in-service training requirements on state-licensed TVIs (prepared in accordance with nationally recognized TVI standards; Council for Exceptional Children (CEC) and Association for the Education and Rehabilitation of the Blind and Visually Impaired (AERBVI) as a precondition for providing special education to children with CVI or any other students with visual impairment; See comments above. The “integrity of comprehensive assessments” means that a TVI can use whatever measure or observation they decide.

 

This insures a continuation of TVIs providing inappropriate assessments for children with CVI and then basing interventions and accommodations on those inappropriate assessments. The cycle of inappropriate interventions and frustrated parents continues!

 
6. calls upon the U.S. Congress to promptly enact the Alice Cogswell and Anne Sullivan Macy Act, which, among other critical policy objectives, would significantly increase investment in quantitative and qualitative research, allowing our field to identify evidence-based practices in assessment and instruction for children with CVI and all other students who are blind, have low vision, are deafblind, or may have these conditions and additional disabilities;

and
7. shall disseminate this resolution online and using any other appropriate means to make it widely available to parents, TVIs, and all other stakeholders to ensure national, state and local communication of these matters.

NOTE: It is my experience that parents are pushing for The CVI Range endorsement because of the lack of professionals who understand their child and who can provide the interventions they need.

Parents are advocating for professionals that demonstrate some level of knowledge, training, and competence in CVI.

At this time, the Perkins-Roman endorsement is the only avenue they have to be sure the teacher knows something about CVI. Too many families are offered services that are inappropriate or worse, no services at all. They are given TVIs that do not understand the characteristics of CVI.

The parents are looking for some way to insure that the people who design programs for their child have some working knowledge of CVI. At this time, they cannot count on pre-service programs to adequately prepare vision teachers to address the needs of their child. They are demanding, or strongly suggesting the endorsement because, for now, that is all they have.

When university programs and national standards catch up to the current population of children with CVI, parents will have done their job of advocating and systems change, not only for their child, but for all children who have CVI.


 

So, how’s that for a little morning reading?

Take your time with this.  Think about it.  Ask questions.   There is more to come.

And, remember…

nothing

 

American Conference of the Pediatric Cortical Visual Impairment Society 2018

They came!  They saw!  They chatted over mojitos and exchanged contact information. 

The Pediatric CVI Society hosted their 6th annual conference at the Children’s Hospital and Medical Center in Omaha, Nebraska.

This, fellow CVI parents, is the conference where you can hear the most recent research on the science surrounding Cortical Visual Impairment and the art of the education of children with this brain based vision loss.  The PCVI Conference is the place where you can meet fellow families, share your stories, ask your questions, and broaden your support network.

The goal of the American Conference on Pediatric Cortical Visual Impairment
(PVCI) is to bring together occupational therapists, ophthalmologists,
optometrists, teachers of the visually impaired, neurologists, pediatric
intensivists, physiatrists and parents to increase interdisciplinary
understanding of cortical visual impairment in children.

 

Introducing the PCVI Society!  

PcVI logo

 

From http://www.pediatriccvisociety.org

pcvi business

Image:  Three people standing at a podium at Children’s Hospital and Medical Center.  Sara Olsen, COO of the PCVI Society,  Lindsey Hiller, the new PCVI Society president and Dr. Skip Legge, outgoing PCVIS president.  These folks have championed our children for years. The conference has grown under their watch and under the watch of the PCVI Society Board.  Trailblazers they are!  Pith helmets for all!

We care about kids with CVI.

The mission of the Pediatric Cortical Visual Impairment Society (“the Society”) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury. The mission is restricted to matters concerning the sense of vision.

Goals

The mission of the Society will be fulfilled through the pursuit of the following goals:

1. Advance interdisciplinary education and research.

2. Enhance dissemination of information and its communication among and between professionals, parents, government and educational institutions, and other groups whom impact children with cortical visual impairment.

3. Advocate for the appropriate allocation of resources to allow for improved vision services for children with cortical visual impairment.

4. Improve public and professional awareness of cortical visual impairment in children.

5. Advocate for governmental policy that improves quality and quantity of vision services available to children with cortical visual impairment.

6. Engage in fundraising activities that will allow for advancement of the Mission and the Goals of the Society.

On this note, I am happy to tell you that there is a lot of momentum around raising awareness about Cortical Visual Impairment and improving medical and educational outcomes for our children.  Top priorities for the next year are to create a new website with resources for doctors, providers, educators and families and to fund research.  

To continue building the PCVI Society and to strengthen the Society’s ability to be a champion for children with Cortical Visual Impairment and their families, we need members. 

The PCVI Society needs members to help us blaze a trail for our children.

———————————————–

BECAUSE

Children with CVI need to be identified as early as possible.

They need providers who understand the unique needs of children with CVI.

Families of children with CVI need support and education to help their children see the world.

———————————————-

So, I will make you the offer I made the folks at this year’s conference.

For the people who become members of the PCVI Society and who encourage two other people to become members of the Society, I – one random mom – will offer you your very own PITH HELMET OF GRATITUDE.

Just email me at Info@cvimomifesto.com with your name and the 2 (or more) other members you have recruited and I will have a pith helmet with your name on it at the 2019 PCVI Conference!

The pith helmet is for trail blazers!  Get it?  I forgot to say that at the conference.  Also, it’s easier to bring pith helmets to a conference than homemade pie.  Speaking of pie… 

IMG_0711

pith helmet
Images: Above:  Gunjan Rastogi-Wilson, CVI mom, advocate, and fundraiser with pie.
Below:  Random mother in blue jacket at the PCVI conference sporting a “pith helmet” from Oriental Trading Compnay.  Nothing but the best for our trail blazers!  This could be you!

 

.

http://www.pediatriccvisociety.org/membership/

 

alice

The future for our children and our families is currently under construction. The Pediatric Cortical Visual Impairment Society is leading the way

“Vision Time” is not a thing. Incidental learning is. Part One

The Pediatric Cortical Visual Impairment Society will convene for its annual conference at the end of this week at the Children’s Hospital and Medical Center in Omaha, Nebraska.  As we prepare for an educational and lively meeting, we are revisiting some earlier posts.  (http://www.pediatriccvisociety.org/conference/)

Every family with a child with a visual impairment (CVI or ocular) needs to understand incidental learning to be an effective advocate for their child.

This post was published on September 14, 2017.

——————————————————————

Okay, my fellow parents of gorgeous children who happen to have CVI.

Here’s the deal.

We have to speak a common language for advocacy.  We have to know some fundamental things about the effect vision loss has on learning to affect change in our early intervention programs and our school systems.  We have to talk the talk.

In most cases, we have to teach the talk.

Will it be easy?  No, but what else do you have to do?

AHAHAHAHAHAHAHAHAHAHAHAHA!

(Sorry, I’ll wait while we all catch our breaths from hysterical laughter or choke on a spit-take.  I’ll wait while you get a towel.  Bonus:  Now the floor is clean!)

Knowing how to parent a child with severe vision loss did not come naturally to me.  I have typical vision.  My daughter was the first blind person I had ever met.  At 6 months, when we got the diagnosis of CVI, we were told she was legally blind.  We did not know anything about CVI.

What I remember about the first couple of years:

  • She never looked at me or anything I tried to show her.
  • Her head hung down all the time.  (I thought this was because of the diagnosis of Cerebral Palsy which we also got on around the time she got her diagnosis of CVI.  At Christmas time.  Ho. Ho. Ho.)
  • She never slept for more than 3 consecutive hours.  (So when people at the grocery store commented on how serene she looked  while asleep in the baby carrier on my chest, it was all I could do NOT to scream – “She is not asleep!  She never sleeps!  Her head just hangs down!  All the time! Why won’t she sleep?  I’m dying inside! Argh!”   To be fair, I was severely sleep deprived.  This is against the Geneva Convention, by the way.  People have been charged for war crimes for less.     Just sayin’.)
  • I was never more than an arm’s length away, yet I felt as though I was a million miles away from her. (Nothing made me feel more useless than sitting on a blanket next to my infant daughter, trying to get her attention, while she stared blankly at the light coming through the window behind me.  I asked her therapists over and over again, “Is she in there?” Typing this reminds of how low and sad I felt in those days.  Did I mention that the child NEVER let me sleep?)

There was so much I did not understand.  There was so much to learn.  Over the years, I sought out some fantastic teachers of the visually impaired (Annie Hughes, TVI and Director of VIPS-Indiana is my personal hero.) and Dr. Roman-Lantzy in an attempt to educate myself about vision loss and CVI.

What I learned from them made perfect sense, but had not occurred to me before.  I was struggling.  I wasn’t sleeping.  My older daughter was a toddler.  Nothing made sense at that time.  Basic hygiene was a luxury.  Forget living day-to-day, we were living minute-to-minute.  The transition into the “new normal” of being a family with a child with multiple disabilities was (and is) chaotic and messy.

Maybe sharing some of the fundamentals will help another mother of another child with CVI get a handle on the situation a little earlier, a little easier.

Maybe developing a common language will help us all go into our IFSP meetings and our IEP meetings with an action plan and the information to back it up.

Here’s where we need to start.

INCIDENTAL LEARNING

Incidental learning is the learning that just happens for a typically sighted person.  From the time you open your eyes in the morning to the time you close your eyes at night, you are constantly taking in information about your environment without even trying.

Incidental learning is the information you receive with your eyes without realizing it.

Children with Cortical Visual Impairment are not incidental learners.

Here’s how it was explained to me.

Blue bowlMiss Annie’s Blue Bowl Story
Blindness or significant vision loss has a number of impacts upon a young child’s development.

One of these is the child’s lack of access to incidental learning.
Vision is the “great integrator” of sensory input. No one plans incidental learning, but it goes on every minute that a sighted child is awake. To illustrate this, I often tell parents the “Blue Bowl Story.”
Two babies are in high chairs at one end of the kitchen. One has normal vision, and one is blind. The dad comes into the kitchen and says to his wife, “Hey Honey, where is the blue bowl? I have rented a movie and want to make some popcorn.” The mom replies, “It’s on top of the refrigerator.” So, the dad walks to the refrigerator, he stretches his arm up and reaches on top, he grabs the bowl which is blue, and he walks to the microwave to make the popcorn.
In those few seconds, the child with vision has just had four “incidental” lessons;

1) The word/label “refrigerator” was connected with the object

2) The child is starting to get an idea about the concept of “on top”

3) The child is beginning to understand that even though this bowl is much bigger than his cereal bowl, it is still called a bowl.   It must be the “scooped out/can hold things” aspect that makes it a bowl.

4) The child has a blue ball, and this is a blue bowl, so identifying that color as blue has just been reinforced

What did the child without vision get?
He/she heard the same words, but they weren’t connected to any meaning. Sometimes this is called “empty language.” This story illustrates how important it is for children who are blind or have low vision to have real experiences with real objects, so the language they hear isn’t “empty language,” but is tied to meaning.

Thanks to Annie Hughes, TVI and Director of Visually Impaired Preschool Services-Indiana

Being able to say, with confidence, “My child in not an incidental learner,” can be the start of an effective conversation with your educational team.

Stay tuned for more information and resources about incidental learning.

Somehow, Some day, SOMEWHERE!

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)

——————————————————————————————

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.

————————————————————————-

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!

west side story pair

“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.  

west side story

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.

 

Adventures in Advocacy / Oxford Eagle

Adventures in Advocacy: A fantastic article about the Stearns family and their recent trip to D.C. to advocate for paid maternity leave and early intervention. Oscar and Jack’s parents made sure their legislators heard about their sons who overcame so much to be where they are today.

Bravo, Susan and Dan! Well done, Oscar and Jack!

Oscar and Jack

We were the cover story for today’s Oxford Eagle Gazette! Read here!

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Adventures in Congress

Oscar and Jack

So far today our little lobbyists have met with Senator Wicker and Representative Kelly. We were supposed to meet with Kelly’s staff but he called us in and met with us himself. I seriously doubt we are effecting change but we did get our message across about lifetime caps in healthcare funding and investing in early intervention services. Winning moment so far: Senator Wicker came into his constituent meet and greet and said “Good Morning!” To which Jack replied “Nice to meet you!” Senator Wicker said “that’s young Jacob Stearns from Oxford.” So we made an impression!

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CVI Teleconference Call

Did you know that there is a weekly teleconference call for families of children with CVI on Tuesday nights?

This weekly call has been a source of knowledge and comfort for families like ours.  The moderator of this call is a kind and wise woman named Judith Millman.

I asked Judith about the history of this teleconference call that has been a lifeline to families across America for 11 years.

Why did the call come about?
The original idea for the Telephone Support Groups came from Dr. Alan Morse, the President of the Jewish Guild for the Blind (now LighthouseGuild). He felt that there were parents of children with visual impairment all over, particularly in rural parts of the country, who were isolated with no support systems in place and that the Guild had the resources and contacts to play a constructive role in their lives. About ten different vision conditions were targeted but CVI, being the single largest cause of children’s visual impairment became one of the first groups that was started (in 2007). It continues to be the largest telesupport group (by far) that LighthouseGuild sponsors.

How did you get involved? What is your background?
I am a social worker by training and worked most of my career in vision services. I started at the Lighthouse in Westchester Co. (White Plains, NY) as a social worker. By the end of my 30 year career there, I was the VP for the Lighthouse in the Hudson Valley, overseeing services for consumers in 7 counties. When I was about to retire, a colleague of mine, Dan Callahan, who was hired by the Guild to start the telesupport program, recruited me to facilitate the CVI group which was just about to be launched.

What are some common questions?
How can I get appropriate services for my child? The school district doesn’t seem to know much about CVI. Can you recommend an ophthalmologist who knows about CVI–mine doesn’t and told me that my child is blind. Where can I find a TVI and an O&M who really understand CVI? How can I help my child learn to use his/her vision? What strategies are helpful?

Have questions changed over the years?
I’m afraid that the questions haven’t really changed over the years. A positive factor is that more information is available via the literature, websites, distance learning courses, etc.

What are common themes in CVI that you don’t see going away – or that are increasing?
The tremendous role that parents have to take on to advocate for appropriate services–even more difficult in light of shortages in the field of TVIs and O&Ms.

What would you want parents of children with CVI to know?
You’re not alone.

CVI is the leading cause of visual impairment of children in the US. There are resources available, including a telesupport group, distance learning courses through Perkins School for the Blind, Dr. Roman’s book, webinars, etc.


If you are interested in joining the CVI teleconference call, email judithmillman@aol.com.

Thank you to Dr. Alan Morse for a wonderful way for families to create community across the miles.

Thank you Lighthouse Guild for sponsoring this call!

Adventures in Advocacy / Get To Know Them Before You Need Them

Hello fellow families of children who have CVI and deserve a free and appropriate education (FAPE!),

As you blaze your child’s personal trail in your local school system, I hope it is an easy trail to blaze.

I hope your school has ample educators who have heard of Cortical Visual Impairment. I hope these educators (and support staff) understand how children with CVI are NOT incidental learners (See blog post on Incidental Learning if you are unfamiliar with this term. It’s important.)

I hope your child has access to a Teacher of the Visually Impaired who is a Perkins-Roman CVI Endorsee.

I hope that TVI has a small caseload and can devote the time it takes to train your child’s educational staff and to modify the materials your child needs to have ACCESS to her curriculum and her school environment.

While I’m hoping, let’s just add a Certified Orientation and Mobility Specialist (COMS) who is also a Perkins-Roman CVI Endorsee.  And, let’s hope that COMS also has a small caseload of students and ample time to help your child navigate and make sense of her physical environment.

I hope your child’s teacher and support staff have ample time to make and modify materials since your child needs to have ACCESS to learning on a daily basis… like any other child.

I’m going to go out on a limb and say that my hopes haven’t been realized yet.

For the sweeping changes in educational policy that need to occur for children with cortical visual impairment to finally have access to learning, parents will need to reach out to legislators at all levels of government.

Talking points:  

  • There is a national shortage of teachers of the visually impaired.
  • There is a national shortage of Certified Orientation & Mobility Specialists.  (You may have to explain what that is.) 
  • There is a national shortage of teachers trained to teach the children with the #1 pediatric visual impairment in America, Cortical Visual Impairment.  (You’ll definitely have to explain this one.)
  • For children with Cortical Visual Impairment, vision can improve.  It is absolutely critical that children get diagnosed early and receive early intervention services from providers who understand CVI.
  • Many states do not provide vision-specific early intervention for infants and toddlers with vision loss, including Cortical Visual Impairment.
  • Our children cannot wait any longer for our education system to catch up to CVI.

Visiting your local school board meeting and asking them about shortages of teachers of the visually impaired and a lack of educators trained to work with children with CVI can get the ball rolling.  It can start an uncomfortable conversation, but it’s a conversation that needs to be started.

It will require sitting through school board meetings, but, as a CVI parent, you have sat through far worse experiences.  (Just a guess. For me, it was Eliza’s “sleep” studies or, more accurately,  “cranky-all night-Mom-wrestling sessions.” ) 

Mark Richert, Director of Public Policy at AFB (American Foundation of the Blind) has a couple of suggestions for parent advocates. 

Find your representatives and reach out to them before you need them.

Some folks don’t know who their local, state, and federal officials are.

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https://openstates.org

This site can help you locate your state representatives.

https://www.govtrack.us

Govtrack will help you locate your federal representatives.

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Open a line of dialogue with the people who work for your local representatives.  They are moms and dads just like us.  They care about children.  They care about their constituents.

Before a big “ask,” it is a good idea to get to know your officials and the people in their offices.

You can can call their local or D.C. offices and ask to speak to the staffer who works on special education issues.  Then, introduce yourself and mention a few talking points, or read from the example below.

An example email:

Dear Sen. Washington, 

I am one of your constituents.  I appreciated ___________________________  (something positive about your representative’s work). 

I wanted to take a moment to reach out to you to tell you that I am the parent of a child with special needs and vision loss.  My daughter has cortical visual impairment, the #1 pediatric visual impairment in America.  

(You can share more of your personal story and include a picture.) 

I wanted you to know that issues surrounding the education of children with special needs and sensory loss are very important to me and my family.  

I hope we can count on your continued support of our children.  

Thank you for your service, 

Thomas Jefferson

Someone from the office will write you back.  Then, you have a contact.  You can direct future issues and questions to this person.  If you are going to be in town, you can request a visit with your representative.  By establishing a relationship, you are laying the foundation to effective future advocacy.

(Sidenote:  You may think it takes a lot of people emailing about a topic to get someone’s attention.  Not so.  When legislators get more than 3 emails or phone calls about one subject they take note.  Every call, every email counts.)

When you are emailing your child’s educational team, cc: your senator, representatives, etc…

Mark suggested cc’ing your elected officials on emails regarding your child’s educational experiences.  This can help our legislators understand the scope of what we are facing when our children with CVI enter the school system.  It will certainly get the attention of your educational team.  I haven’t done this yet.  If you do, let me know what happens.  I’m intrigued.

P.S. I’ve heard that it’s better to take taxis rather than Uber or Lyft when you are going to advocate on Capitol Hill.  Taxis are plentiful in D.C. and street addresses are tricky.  It can be hard for an Uber or Lyft to find you.

fight win!

Image: Edna Mode from The Incredibles stands with her arms above her head and yells “Go! Confront the problem! Fight! Win!”

Moms on Monday #19 / Brenda from WA

Good evening, fellow CVI families!  It’s still Monday!  We here at CVI Momifesto like to keep you on your toes.

Today I heard a quote that resonated with me.

“Anger is inevitable.  It’s what you do with it that counts.”

This quote made me think of the CVI moms who are organizing and moving mountains for their children.

Jasper’s mom, Brenda, is getting a lot done with her anger.  I salute her.

If you have done any research on cortical visual impairment online or on social media, you have probably found the blog Start Seeing CVI and the companion Facebook page.  You may have heard about a CVI Advocacy Call recently hosted by the American Foundation for the Blind – the first national conference on advocacy for children with cortical visual impairment.  (Editor’s sidenote:  This call was a big dang deal.)

If you were on Facebook this month you may have seen this –

April is CVI Literacy
Image reads April is CVI Literacy Awareness Month

You may also have run across pictures of remarkably attractive children and their mothers wearing this t-shirt.

brenda's t-shrit

Image:  Black t-shirt with Start Seeing CVI and the 10 CVI characteristics

And, what if I told you all of these amazing efforts were the result of one dynamic, unstoppable mom?

Yes, it’s Jasper’s mom, Brenda from Washington.  She graciously answered questions I asked her about Start Seeing CVI, the motive behind the famous t-shirt, and just how she was able to make April CVI Literacy Awareness Month and September CVI Awareness Month.

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Why I started Start Seeing CVI

When you are raising a child who has cortical visual impairment (CVI), the lack of awareness, and education, and knowledge of CVI is one of the hardest lessons. My son Jasper was diagnosed with “cortical blindness” at one week old. The birth to three experience was spent learning about CVI and explaining it to his many providers. For a short time, as a baby, he had a “vision educator,” who was trained to identify a vision issue and knew a little about CVI but not nearly enough. Through birth to three years, my son never had a regular teacher of the visually impaired (TVI), and we live in a major city, Seattle. In a way, it was better, because his early intervention team was willing to learn and listen to me and there was no TVI ego to contend with. That changed with his transition to the public school system.

The original Start Seeing CVI t-shirt was created in 2014 during Jasper’s first full year of preschool. He was in Phase II CVI, as scored by Christine Roman. His TVI did not want to make any modifications to materials to give visual access to my son with CVI. It did not help that the young special education teacher backed him up. When doing anything with Jasper, you have to think of his cortical visual impairment first. You have to think about the CVI ten characteristics first. How could the school team not see that? And how could I get them to think about his CVI? Do I need to send to him to school with a note pinned to his shirt every day?

And so I created the t-shirt. How could they miss it now?

Jasper's t

Image:  A boy lying down with his arms covering his face wearing a Start Seeing CVI t-shirt

The Start Seeing CVI blog came a little later, from that same place. It evolved from my original blog – writing about the experience of raising a child with special needs – to writing increasingly about having a child with cortical visual impairment.

Nobody knows about CVI because nobody is talking about CVI.  Nobody is talking about our kids.

Look around, on social media, nobody is talking about CVI. You can find Helen Keller quotes and Braille topics by the dozen, but nothing on CVI. No CVI graphics or quotes or memes. The organizations that serve students who are blind and visually impaired, and are supposed to serve our kids with CVI too, are not talking about CVI. American Printing House for the Blind (APH) is a good example. To look at social media, at a place like APH, you would think that most people who are blind or visually impaired are Braille readers. But the reality is more like five to six percent. Cortical visual impairment is the leading cause of visual impairment in our kids; they comprise the biggest portion of the demographic. But nobody is talking about our kids with CVI.

Perkins School for the Blind is talking about CVI and asking the critical question, What more can we be doing for students with CVI? And that is likely due to a few things, including their relationship with Christine Roman.

CVI has been around for a few decades now, you can find it in the medical literature as far back as the early 1990s. Nobody knows about cortical visual impairment because nobody is talking about cortical visual impairment. I wanted to change that.

As I travelled around, attending CVI conferences and trainings and workshops (I do not take vacations) and meeting other parents, our stories were the same. My child’s providers have not heard of CVI. My child’s providers do not know enough about CVI. My child’s TVI is not knowledgeable about CVI. It was not just my experience, it was the universal experience of CVI parents all across the country. I hoped that writing about CVI, and writing about Jasper, might bring both better understanding and awareness of CVI.

There is also so much misinformation out there around CVI.

Especially some of the online groups that are supposed to be about support, I avoid them. Even some websites or CVI “fact sheets,” if you happen to be given one. It is so important that CVI parents have information, but it is even more important that the information be accurate.

Not everybody out there who is teaching you about CVI is qualified to do so. Stick with the experts, not the people who are trying to sell you something. Providing accurate information and resources is a huge priority on my blog. I have no interest in debates around cerebral vs cortical.  It is an old argument and does not serve my son, or any family trying to get support for their child with CVI.

Why & how I was able to create two months of awareness 

(“Not 1 CVI Awareness Month…2 CVI Awareness Months!” – CVI Momifesto )

Since fall I had been trying to find a home for a CVI advocacy conference call. There were about six different conversations going on, with different people, parents, providers, and I wanted to get everybody together and on the same page.

American Foundation for the Blind (AFB) was willing to take a chance, and last month, in March, was the first ever national teleconference on improving education services for students with CVI.

Awareness and education and knowledge need to increase across the board – from diagnosis, to early intervention services, to public school, neurologists, occupational therapists, ophthalmologists, orientation and mobility specialists, pediatricians, physical therapists, special educators, speech language pathologists, and teachers of the visually impaired.

It has got to start with the university teacher preparation programs. I say that as a person who was enrolled in such a program, and they were not teaching cortical visual impairment or the CVI Range.

My son’s diagnosis of CVI is not optional, and teaching CVI is not optional.

On the AFB call, the universities made a lot of excuses, and yet the University of Massachusetts Boston is teaching CVI, and the CVI Range, and has a dedicated and required courses on CVI. So it is possible. My son deserves providers who are proficient in CVI, and so does every other child with CVI. And it has got to be somebody who will be at the IEP table. Our kids not only deserve this, they have a right to it.

jan

At the same time, we are focused on APH. In January, APH posted on its social media account about their plans to “Make Big Things Happen” this year for students who are blind or visually impaired. And there was not one word about cortical visual impairmemt, and how they would “Make Big Things Happen” for students with CVI. I almost let it go – but instead I commented, What about our kids with CVI, you won’t even make the CVi Connect app a quota fund product for them. My comment did not go unnoticed. In a short time, MaryAnne Roberto commented from Pennsylvania, and Gunjan from Pennsylvania, and Anna from Ohio, and Riley from Oregon, and Rachel from Maryland, and Rebecca from Virginia. The comments from CVI moms kept coming.

A group of us came together around that experience. We are committed to improving things for our children with CVI. We are raising our parent voices on behalf of our kids.

And this is just the beginning.

If you are a parent or provider of a child with CVI and want to lend your voice, you can go to Start Seeing CVI Advocacy or the Start Seeing CVI Facebook page to learn more.

Jasper

Image:  A smiling boy in glasses and wearing a hat with a wide brim and striped shirt.

 

Thank you, Brenda and Jasper!  Thank you, Brenda for your courage and your tenacity. 

Adventures in Advocacy / DC + MD AER Conference

It’s been a busy couple of weeks here at CVI Momifesto. Spring is conference season.  Time for the experts in everything  to get together in quaint or exotic places to compare notes, to share their research, and, maybe to learn a new trick or two.

It’s been a great conference season in terms of building momentum and raising awareness about the learning needs of children with CVI. Needs that continue to be unmet in most educational settings across the country.

(Then, it’s Spring Break, and all bets are off for writing any blog posts as your children run amok in your house demanding to be fed, nurtured, and challenged at board games.  But I digress.)

So far this year, CVI was a hot topic at the American Association for Pediatric Ophthalmology and Strabismus.  Also, several AER conferences admitted presentations by educators and parents about Cortical Visual Impairment.  The  Northeast AER conference included presentations on CVI (from Dr. Christine Roman-Lantzy, Ellen Mazel, and Peg Palmer among others) in each slot in their schedule.  Virginia AER had several presentations including a parent’s perspective on the challenges of getting a Free and Appropriate Public Education (FAPE) for a child with CVI.

At the Pacific Northwest AER conference, MaryAnne Roberto, a CVI Endorsed Teacher of the Visually Impaired (Envision CVI Consulting), presented on Current Trends in CVI to standing room only crowds.

On March 15th, this CVI mom drove to St. Michael’s in Maryland for the DC / Maryland AER Conference to reach out to Teachers of the Visually Impaired and Certified Orientation and Mobility Specialists.   Thanks to Karen Frank and the AER folks who allowed me the chance to talk up the urgent need for educators to get more training to help children with CVI build functional vision.

 

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Image: Rob Hair,  Michelle Horseman, and Karen Frank from the Maryland School for the Blind
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Image: Dr. Michael Bina from the Maryland School for the Blind and Rebecca Davis

The Executive Director of AER, Lou Tutt, attended this conference and sat in on my presentation.  When I suggested to the audience of teachers that they contact AER to tell them they support more training for TVI in Cortical Visual Impairment, I didn’t have to give Mr. Tutt’s email address.  I just said, “There he is.”   He was a great sport about it.

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Image:  Lou Tutt and Rebecca Davis

If you have any luck sharing your stories at a conference or a meeting of educators or doctors (or legislators… or anyone who will listen), send us your story!  CVI Momifesto would love to expand the scope of both personal stories and adventures in advocacy.