CVI Endorsement – CVI Momifesto

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

August 13, 2018 CVI Momifesto1 Comment

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.

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

A School District Tackles CVI – Fairfax County Public Schools

June 20, 2018June 25, 2018 CVI Momifesto2 Comments

Hello fellow families of lovable children who happen to have cortical visual impairment,

In a previous post, I mentioned that, across the United States, more parents are educating themselves about their child’s diagnosis of CVI. They are taking their research into their IFSP and IEP meetings. They are asking their school districts how a child with CVI will be accommodated in the classroom.

Parents receive a wide spectrum of responses to their questions.

(And, I hammered this home with a tortured analogy from West Side Story. Sometimes I have to make sense of things through musical theater. Everyone has their thing. Don’t judge.

Image: Tony and Maria from West Side Story singing Somewhere (technically she’s lip-synching)

There’s a place for us….children with CVI to be educated in the manner in which they can learn because they can learn…..SOMEWHERE a place for ….children with CVI. Aren’t you glad I didn’t dredge that up again?)

As a direct result of the advocacy of parents in their individual IEP meetings, some school districts in America are recognizing CVI as a common diagnosis (#1 pediatric visual impairment – Can’t miss an opportunity to throw that in.) and as an obstacle to a child’s access (our favorite word) to a Free and Appropriate Public Education. In fighting for their own children, these parents are improving education for all of our children. It does not happen overnight, but there has been significant progress since I began looking for like-minded parents a decade ago.

It’s important for families to know that there are school and district administrators who are open to listening and to learning.

(There is a troubling issue with special education administrators. Did you know that special education administrators do not have to have a background in special education to hold their positions? Special education is a term which covers a wide variety of diagnoses and educational approaches. One would think that an administrator in this field would need more expertise to represent the students in their district, definitely not less. When I learned this, I wondered if this isn’t one of the reasons so many families feel like they are hitting a brick wall when they ask for teachers and staff to be trained in educating children with CVI. Something to consider.)

Kudos to the administrators who acknowledge the challenge of educating children with CVI and who take action to train their staff. This is new territory. They are leading by example.

Speaking of examples, Fairfax County Public Schools, the largest public school system in Virginia, has made a significant commitment to training teachers about cortical visual impairment through the Perkins-Roman CVI Range Endorsement.

Dr. Irene Meier is the Director of the Office of Special Education Instruction for FCPS. Two years ago, when parents met with Dr. Meier to give her information about cortical visual impairment and its impact on student learning, she was curious to learn more. She recognized the need for specialized training to work more effectively with children with CVI. She and Dr. David Lojkovic, Educational Specialist for Adapted Curriculum, worked with Perkins to provide FCPS teachers training through the Endorsement program.

When recently asked about the training, Dr. Meier responded:

“Our collaboration with Perkins and the feedback from the teachers was a very positive experience. We plan to continue to offer access to these courses next school year.
Over the course of the past two years, FCPS has been fortunate to participate in training, provided by the Perkins School for the Blind, that has advanced the skills of our staff who are working with students with cortical visual impairment (CVI). 21 FCPS teachers have taken either graduate level or advanced level courses, with several in that cohort pursuing the specialized endorsement in cortical visual impairment.

The feedback from teachers has been extremely positive.
Participant quotes: “I like taking Perkins’ classes because they’re structured, but flexible.”
“The assignments are challenging, but not too challenging.”
“The work we do in the classes can be directly applied to practice.”
Survey results show that teachers appreciate the opportunity to learn more about assessment with the CVI range and have used skills learned from the coursework with students that they serve. Furthermore, teachers indicated via survey that they were engaged in the coursework and felt encouraged to try strategies learned.
85% of participants in the coursework indicated that they learned new information as a result of taking the course.”

french-pith-helmet-big-head-version

Image: A pith helmet

For her willingness to address the challenges of educating children with cortical visual impairment, CVI Momifesto would like to offer Dr. Irene Meier our first honorary Pith Helmet of Gratitude for helping parents of children with CVI forge a new path, blaze a new trail, if you will, in special education.

So, fellow parents –

if your child has been identified with cortical visual impairment and you are getting a lot of pushback from your school district when you ask for accommodations, modifications, and educators trained in CVI,

if hours of IEP meetings have worn you down so that you start to doubt yourself,

if you start to wonder if your request for your child to have access to her education is even possible,

remember that there are school districts, there are administrators, there are teachers who get it. They are working with parents. They are learning how to work with our children.

A question you may ask your school district might be, if Fairfax County can do it, why can’t we?

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P.S. If you know of a school or a district that has risen to the challenge of working with children with CVI, let us know at Info@cvimomifesto.com so we can spread the word!

Moms on Monday # 20 / Barbara from FL

May 21, 2018May 22, 2018 CVI Momifesto1 Comment

Good morning fellow families of resilient and adorable children who have cortical visual impairment!

This morning we have the pleasure of hearing from Logan’s mom, Barbara.

logan and parents

Photo: Barbara, a woman with short dark hair, She holds the right arm of Logan, a little boy in a shirt and tie who is held by his father, Leo, a tall man with dark hair. They are all smiling.

When we first spoke, my intention was to ask Barbara the questions that other moms have been kind enough to answer for earlier Moms on Monday posts. As any parent of a school-age child with CVI knows, it’s still IEP (Individualized Education Plan) season. That means CVI moms and dads across America are buying Tums in bulk and putting lawyers on speed dial in their never-ending search for a Free and Appropriate Public Education (FAPE) for their children. (It’s the law, by the way.)

We didn’t get around to the questions during the first conversation because Barbara’s focus (like so many other parents of school-age children with CVI) is making sure his school team understands that cortical visual impairment requires accommodations throughout the day, extra training for staff, and modifications for school materials.

“Every obstacle that has been put in front of him, he has overcome.”

logan and glasses

Photo: A little boy in a green t-shirt and sports glasses. Smiling broadly, he is missing one of his front teeth.

Logan is 5 years old. His mom and dad recently attended the transition IEP meeting to prepare for his kindergarten placement. The school team proposes placing him in a self-contained classroom for visually impaired children. Barbara would like Logan to be placed with his peers in an inclusive setting with appropriate support. She would like to tell them to “stop putting my round peg in your square hole.”

According to Barbara, this year the focus is to make the school system understand how much they don’t know about CVI. They can try to contest the CVI Range, but they are required to give him ACCESS to his environment.

“We need him to be independent. We don’t need them to feel sorry for him and think ‘Poor thing.’ We don’t want them to assume that he will never get a diploma. At the end of the day, he’s going to have to function in the real world.”

A teacher at the proposed placement told Barbara, “I’m not trained in CVI. I’ve never had a kid with cortical visual impairment.”

At the IEP meeting, Barbara was told, “Our teachers aren’t required by law to become CVI endorsed.”

She replied, “But, you are required by law to teach my son.”

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And, this, fellow parents, is where we find ourselves in IEP meetings across America. Our children exhibit some or all of the 10 characteristics of cortical visual impairment. They require assessment so teachers will understand how our children use their vision and to plan accommodations to help them improve their functional vision.

The assessment is the CVI Range (Dr. Christine Roman). The CVI Range was validated by the research of Dr. Sandra Newcomb (Journal of Visual Impairment and Blindness, 2010).

Our children’s vision can improve. This is an issue of accessibility not disability.

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Logan is currently non-verbal. Over the past 6 months he has learned how to communicate with an AAC (Augmentative Alternative Communication) device. During the meeting, Barbara requested that Logan’s teacher receive training in how to use AAC devices and how to communicate with children who are non-verbal, but this training was not added to the IEP.

In response, the school system requested that Logan be assessed through an educational evaluation by a psychologist. Barbara, his mom, is also a developmental psychologist. She explained to the school team that psychoeducational assessments are not appropriate for children with visual impairments. (See post: Death by IEP / Why Formal Assessments Do Not Work for Children with CVI or other Sensory Loss)

Barbara would like a teacher who understands cortical visual impairment and how Logan communicates with his AAC device.

What I want educators to know about Logan.

“Logan enjoys a challenge. He never gives up. I want educators to know that teaching Logan is about giving him ACCESS to his education.
I recently saw a video of a mother whose daughter has cerebral palsy. The mother explained how hard it was for her daughter to get her body to do what she wants it to do. She said that people often misinterpret difficulty – the physical difficulty of getting your body to move the way you want it to – for an intellectual disability.
Logan has overcome every challenge placed in front of him. One time, when he was a baby and still not sitting up yet, I heard him laughing in another room. I went in to see what he was doing. He was laughing because he had gotten himself into a sitting position all by himself. From then on, I knew that laugh meant he was up to something. He doesn’t give up.
School is supposed to offer him the least restrictive environment, not the most restrictive environment. At the end of the day, he is going to be in the real world. I want him to have experiences in the real world and, for me, this means being educated along side typically developing peers.”

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Introduction: Logan lives in Florida with his mom, Barbara, dad, Leo, and 3 siblings, Lauren, Liam, and Landon. Landon and Logan are twins.

What does Logan like to do? What makes him laugh? What are his favorite activities? What do you like to do as a family?

Logan is a very social kid. He loves to interact with other people both adults and children. He loves it when people play games with him and sing to him, especially interactive songs like Wheels on the Bus. He loves to play Peek-a-Boo. He enjoys when I go outside and surprise him by looking in the window. He is a very active kid. He loves to dance and to jump around.

We do all the stuff other families do. He goes where we go. We go to the pool, play in the yard, go to museums and Disneyworld.

logan and siblings

Photo: Four children posing for a picture with big smiles. Three boys, Landon, Logan, and Liam in colorful checked shirts and dark pants. Their older sister, Lauren, in a red dress with a matching red bow in her long curly hair, stands in the middle behind Logan.

When did you learn about CVI? How were you given the diagnosis?

“Stumbling over diagnoses” has been a recurrent theme with Logan.

When he was 8 months old, he began sleeping a lot. When he woke up, his high-pitched cry was different than his usual cry. I remember taking videos of spasms that happened when he slept.

We had lots of doctor appointments back then since the twins were preterm. I asked about the spasms and the high-pitched crying. It wasn’t until we went to a new neurologist that we were taken seriously. The neurologist took one look at him and told me to go to the hospital immediately. He was hospitalized with Infantile Spasms.

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I tried to get him enrolled in a special needs daycare through the state because he needed every therapy there was and my insurance wouldn’t cover it. It was a struggle to get him into the program even though he fit their criteria.

The head therapist suggested that I apply for Medicaid waiver funding for Logan. I told her we couldn’t because my husband works. She told me Logan had one of those diagnoses where he would be eligible.
“What diagnosis is that?” I asked.
She printed out a list of eligible diagnoses. One of them was cerebral palsy.

“He has this?”

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I have gotten used to going against the grain.
When Logan was smaller, we decided that Logan should have a selective dorsal rhizotomy in the hopes that he would become more mobile. His physical therapists advised against it. After the procedure, he began standing and even learned to use a walker. He now walks without assistive devices.

The physical therapists are now recommending the procedure to other families.

Phote: Logan in a t-shirt that says “Little Explorer” walking with a reverse walker

A couple of years ago, I attended a conference on cerebral palsy and developmental medicine. It was then that I first heard about CVI. I thought, “Oh, this looks complicated. I don’t know if this applies to him but I have to learn.”

Logan had been followed by a pediatric ophthalmologist because he also has strabismus and we were patching. Yet, I had never heard about even the possibility of CVI from our ophthalmologist.

When Logan was 3 years old, I told our neurologist that I noticed things that didn’t “make sense.” I found it odd that TV didn’t interest him at all. His sister and brothers watched cartoons, but cartoons didn’t interest him. I wasn’t thinking about vision. I’m a developmental psychologist. I was thinking maybe the cartoons were abstract and his thinking was too concrete for them.

The neurologist couldn’t answer my questions. She said there were no studies on kids who don’t watch TV.

I took my newfound information about CVI to our pediatric ophthalmologist and asked him if it was possible that Logan had CVI. He said, “Yeah, he has that. I guess I’ll refer you to the Lighthouse for the Blind.”

I was floored. It was like receiving a cancer diagnosis. I didn’t know anything about CVI. And now, you’re telling me my child is blind and you’ve never told me this before?

I asked my pediatrician how long the diagnosis had been in his file. Apparently when Logan was 2 1/2 years old, the diagnosis was added to his file without informing me.

Anger wasn’t going to get me anywhere. I knew I had to learn. I found Dr. Roman’s videos on the West Virginia website (http://wvde.state.wv.us/osp/vi/cvi/cvi-special-topics.html).

How was Logan’s early intervention experience with regard to CVI?

We didn’t know he had CVI for 4 years. When I finally made contact with the Lighthouse for the Blind they sent someone to come work on a few things through the Blind Babies program. However, once he entered the Visually Impaired program within our local school district, the Blind Babies program closed out the case. In the school district, we were only give consultation services from the TVI.
Now that Logan is 5, the Lighthouse for the Blind is supposed to offer services for children with blindness and visual impairment. They offer blind children support with braille or technology 2 Saturdays/month. When I ask for services for CVI, I was only offered once a month.

What would you tell a mom whose child has just been identified with CVI?

First, I would say it’s not the end of the world. CVI is treatable. Their vision can improve.

You are not alone. I haven’t found any other moms here of children with kids with CVI. One of the things I have found is that Facebook can help you find a community and can help you find answers. For example, I found out that the Texas School for the Blind was holding a conference on Phase III with Dr. Christine Roman-Lantzy. There were grants for families to attend, but the families had to be from Texas. I asked our Lighthouse for the Blind and Division of Blind Services if there was grant money for this conference. They said no. I paid to go to the conference. I was grateful that TSBVI waived my registration fee.

At this conference, I got a lot of information. I got to meet Dr. Roman. I learned about the weekly CVI conference call sponsored by the Lighthouse Guild. I learned that there are TVI who are willing to learn about CVI and work with families to help them learn more about giving their child access to their environment.

What would you like people who have never heard of CVI to know?

CVI is a lot more common than you think. It is not a problem with his eyes. It is his brain. His brain has a hard time taking in visual information.

He is a very social kid. Still, I have to explain to people at school that when you see him smiling and waving at you, he sees you, but he doesn’t know who you are.

What are your hopes and dreams for Logan?

My hopes and dreams for him are the same ones I have for my other kids. To be successful in school, to have friends, to be the typical kid he is.

I have learned to quiet that part of me that says “He can’t do it. I have learned to quiet the skeptic in me. No one knows his potential. Including me.

I have to try.

It’s what moms do.

It is what moms do. Every day. Thank you Barbara for sharing your experiences. You have a beautiful family.

Adventures in Advocacy / AFB’s Advocacy Call to Improve Special Education for Children with CVI

March 15, 2018March 16, 2018 CVI Momifesto2 Comments

It happened! History was made!

Yesterday evening, March 14th, at 8:30, the American Foundation for the Blind hosted a panel of parents, educators, TVI, administrators of teacher training programs, and advocates to engage in a “spirited” national conversation concerning Special Education of Children & Youth with CVI. (I am deliberately using the initials CVI since AFB referred to the diagnosis as “Cortical Visual Impairment – what others refer to as cerebral visual impairment, and still others describe as neurological visual impairment.”)

Our moderator, Mark Richert, Esq., diplomatically came up with the following title for the call:

CVI = Consensus, Vision, and Initiative

As a parent, I have said before and I will say it again. I do not care what you call this diagnosis. You can call it, “Harold,” or “Pearl,” or “Jeff.” This attitude may seem flippant to researchers and educators and it is. CVI has lorded over our lives for over a decade and I’m not great with authority figures.

I care about finding the teaching methods that give my daughter (what?….Say it with me, folks!) ACCESS to her environment.

Image: A child wearing a backpack climbs on a school bus

My dream is that one day my daughter will get on a bus and go to a school where the teachers know more about CVI than I do. My dream is that one day I won’t have to worry about what is happening at school all day.

Is this likely to happen anytime soon? No, it is not likely to happen anytime soon.

But, I have to try. For Eliza. For every other child. For every other mom. I believe I can say the same for the other parents who are advocating in their personal lives and the parents who participated in last night’s call whether as a panelist or a caller.

Mark Richert gave each panelist a chance to speak. He made every effort to give callers a chance to comment or ask questions. This turned out to be a bigger task than expected as AFB had nearly 200 people call in. I don’t have the exact numbers but at last count we heard the AFB folks say 175 people wanted to participate in the call, both panelists and callers.

The panelists included:

Brenda Biernat – CVI Parent, Advocate, and Founder of StartSeeingCVI.com (and the mom who reached out to AFB to make this call happen. Bravo!)

Rebecca Davis – CVI Parent, Advocate, Member of the Pediatric Cortical Visual Impairment Society & Blogger at CVI Momifesto

Sandra Lewis, Ed.D – Coordinator and Professor, Visual Disabilities Program, Florida State University

Amanda Lueck, Ph.D – Professor Emerita in Special Education, San Francisco State University

Rona Pogrund, Ph.D – Professor and Coordinator of Programs for Teachers of Students with Visual Impairments, Texas Tech University

Dorinda Rife, CLVT, COMS – Vice President, Educational Services and Product Development, American Printing House for the Blind

Christine Roman-Lantzy, Ph.D – Director, Pediatric View Program, Western Pennsylvania Hospital

Diane Sheline, TVI, CLVT – Independent Consultant for Students with Cerebral/Cortical Visual Impairment

Alisha Waugh, COMS – CVI Parent and Physical Therapist

It was a passionate conversation. I, for one, appreciated the fact that the professionals in the field of educating children who are blind or visually impaired were willing to listen to us and to each other.

Listening is an important first step.

We parents do have a lot to say. We have been waiting a long time for Cortical Visual Impairment to be taken seriously in the educational community. Many of us have stories about the CVI Range. We have stories about what we have learned by studying the work of Dr. Christine Roman-Lantzy and how it has changed our children’s lives for the better. We have stories of daily struggles and challenges, confusion and tears, low expectations for our children’s cognitive abilities, and lack of access to visual information being interpreted as “behavior issues.”

It is still hard for me to believe that despite Cortical Visual Impairment being the #1 pediatric visual impairment in first world countries, there remains so little consensus on how to educate these children.

It is time for things to change.

If, as Mark Richert and AFB have stated –

“Successful advocacy requires at least 3 key elements:

consensus about the problems and solutions,

a shared vision among stakeholders regarding the desired outcome,

and initiative on the part of committed change agents who are willing to play a long game while achieving milestones along the way” –

Then, yesterday’s conversation revealed a common concern for the education of children with CVI and parents revealed themselves as committed change agents extraordinaire.

What a great t-shirt idea! (AFB, I get 10% of net sales.)

I’m in for the long game, just don’t tell my daughter or she will make me play Monopoly. No one deserves that.

Stay tuned!

Adventures in Advocacy / Sometimes All You Have To Do Is Ask – A CVI Advocacy Win

March 11, 2018March 12, 2018 CVI MomifestoLeave a comment

Kathryne, mother of “Little C,” (Moms on Monday #6) is changing how children with CVI are being educated in Louisiana. BRAVO!

Image: A little boy sitting on a black floor and surrounded by black walls. He wears glasses. He is leaning forward looking at a light source with many strands of shiny red beads hanging over it.

When I asked my local university VI graduate program why their curriculum did not address CVI and how they could add education opportunities on CVI to their VI curriculum I received the response, “it is almost impossible to provide all things to all people for all purposes.” CVI is the #1 pediatric visual impairment in the US. This was followed up with how Dr. Roman’s methods are “far from accepted as the preferred model” and there are a “diversity of opinions on how these youth are best served by educational systems.” Dr. Roman has provided the only educational model.

This happened a few weeks before the NE AER Conference. The November 22 post on CVI Momifesto provided the link to AER’s website to look up our state chapters. CVI Momifesto suggested that we contact our AER Presidents and ask how we as parents can support TVI training in CVI.

Even though I found no contact information, website, or conference for my local chapter I decided to pay the dues and see where this rabbit hole led.

After joining AER I reached out to my son’s outreach therapist that Louisiana School for the Visually Impaired (LSVI) is sending out twice a month. I asked if she knew if LA AER had any workshops or conferences and how as a parent member I could become involved. I hit the Jackpot. It turns out the head of LSVI’s Outreach Department is the outgoing AER President. She called me soon after full of excitement that a parent wanted to be involved. She was in total agreement that CVI training was needed.

All I had to do was ask to sponsor training. The next month AER approved the workshop. Louisiana will have a CVI work shop October 19, 2018, and I have extended a personal invitation to our local graduate VI program.

If you are in Louisiana and want to attend you can sign up here.

https://docs.google.com/forms/d/e/1FAIpQLSfEe__xP9Kvzow7nApx_eN8jZ6XXM7mUUe1WRrpp3m-MuNv9A/viewform?c=0&w=1&usp=mail_form_link

Adventures in Advocacy / VA AER 2018

February 28, 2018February 28, 2018 CVI Momifesto4 Comments

Hello Fellow Families of Children with CVI,

Last Thursday, I had the opportunity to present to the annual conference of the Virginia Association for Education and Rehabilitation of the Blind and Visually Impaired.

At the Pediatric Cortical Visual Impairment Society conference in Omaha last summer, Dr. Sandy Newcomb and I did a presentation “CVI: Stuck in Phase II” about non-verbal children.

We submitted a similar presentation for Virginia AER.

Then, Dr. Sandy and the ladies from the Maryland Deaf-Blind Project were invited to the Royal Institute for Deaf and Blind Children in Australia to teach their staff about Cortical Visual Impairment.

So, Australia won Dr. Sandy and Virginia AER got me and my parent’s perspective.

I told the lovely folks at AER that Dr. Sandy couldn’t make it due to a rogue koala attack and we carried on. It was great to see Mark Richert and Rebecca Sheffield of the American Foundation for the Blind in the audience. Which reminds me…

FYI and ACTION ITEM: AFB will be hosting a conference call for the CVI community titled Mobilizing Advocacy to Improve Special Education for Children with CVI on Wednesday, March 14th at 8:30 until 11:30 p.m.

To join the call: 1-866-939-3921 / Code: 46438061)

cvi-stuck

Image: A slide projected onto a screen. The slide reads CVI: Stuck in Phase II / A Parent’s Perspective

So here’s how I figure it –

If sharing my story about being Eliza’s mom and the challenges we face in getting CVI understood by — well, everyone, really…..

If my explanation of how hard it has been to find (or even create) a Free and Appropriate Public Education…

If I can share our experiences in getting Eliza assessed on the CVI Range and talk about modifications that are working for us and modifications that haven’t worked…..

If ANY of this information gives the folks in the audience a better understanding of what CVI is and a dose of empathy for what CVI families go through on a daily, weekly, monthly, … basis,

Then, what we have gone through will help someone else. I can live with this.

AND

If I get the chance to spread important information about CVI to people who may not have heard it before, then so much the better.

Information such as the following:

Cortical Visual Impairment is the #1 Pediatric Visual Impairment in First World Countries
The presence of CVI is not an indicator of cognitive ability.
The presence of CVI is not an indicator of cognitive ability.
Every child with Cortical Visual Impairment has unique learning needs.
CHILDREN WITH CVI (just like children with ocular vision loss) ARE NOT INCIDENTAL LEARNERS.
The accommodations necessary for children with CVI are DIFFERENT than accommodations for children with ocular vision loss.
They miss out on learning opportunities because they cannot make sense of the visual world around them.

Oh, yeah and –

The presence of CVI is not an indicator of cognitive ability.

When they get tired of hearing a mom’s perspective, I bring out the experts:

CVI Experts Weigh In

Dr. Sandra Newcomb (Before the unfortunate koala incident of 2018) :

sandy koala

Image: A woman petting a koala bear sitting in a tree.

Presumption of limited cognitive skills and abilities leads to limiting visual access to information, specifically communication information (objects and pictures)

Becomes self fulfilling
By limiting a child’s choice and control by limiting visual access to information, you inhibit
Communication
Quality of Life
Social connection
Learning
Participation in family and society

————————————————————————————————————

Ellen Cadigan Mazel, M.Ed. CTVI, CVI Advisor, Perkins School for the Blind:

Be a lifelong learner about the brain.

Be a lifelong learner about CVI.

Ocular vision loss does not improve.

CVI CAN IMPROVE.

CVI masks cognitive ability.

If we expect improvement, we will get improvement.

The minute we stop expecting improvement, we will not get improvement.

Va AER chair.png

Image: An empty podium. A book and a large black posterboard is on a chair in front of the podium.

I showed off the new edition of Dr. Roman-Lantzy’s book, a picture calendar board I saw during Ellen Mazel’s presentation at NE AER and a Start Seeing CVI t-shirt. Several TVI came up to me afterwards and asked about how to get a t-shirt.

During the presentation I suggested that the Perkins-Roman Endorsement class would be a great place to start learning more about how give a child with CVI visual access to her world.

I have very little to offer the overworked, underappreciated TVI I asked to get more training for our complicated kids. I did, however, promise to make a pie for any future endorsee.

AND, this time, I even got Julie Durando from the Va Deaf-Blind Project to offer cake or other baked goods. Apparently, she makes an Italian Wedding Cream Cake that will change your life and is about to begin experimenting with puff pastries. Puff pastries, people!

I think we are on to something here, folks.

pie

Image: A pumpkin pie with a slice missing.

Whatever it takes.

More Adventures in Advocacy to come!

“First they ignore you..”

February 23, 2018June 22, 2018 CVI Momifesto1 Comment

“First they ignore you, then they laugh at you, then they fight you, then you win.”

— misattributed to Mahatma Ghandi according to Snopes (It doesn’t matter who said it. Heck, let’s go Spartacus and all claim it.)

Yesterday, I reblogged a post from the CVI Teacher, Ellen Mazel. She was responding to what seems to be a common – and, frankly, disappointing – misconception regarding the Perkins-Roman CVI Range Endorsement.

And, I couldn’t get it out of my head. It really burned my beans so to speak.

We CVI families are in this together, so when you mess with one of us, you mess with the whole trailer park. (My favorite bumper sticker from a visit to Florida some years ago. You’re welcome.)

The misconception is this.

Some administrators and educators in the field of the education of children with sensory loss believe that Perkins School for the Blind and Dr. Roman-Lantzy are making themselves rich off of the CVI Range Endorsement.

These folks are vocal and dismissive of the work being done to train providers and parents about how to help children with CVI build their abilities to visually access the world around them.

Ellen Mazel’s post lays out the administrative costs to offer the CVI Range endorsement as explained by Mary Zatta, the Director of Professional Development at Perkins.

Looking at the numbers, it is easy to see that no person and no organization is becoming wealthy offering training about CVI. They are serving a need that had gone unmet for decades.

If we are going to be talking about Perkins and Dr. Roman-Lantzy’s work, I’d like to get the facts straight:

Let’s be clear about who we are talking about here.

First, Perkins School for the Blind was established in 1829. It is the oldest school for the blind in the United States. It is a 501c3 organization committed to serving individuals who are blind and/or multiply impaired.

Their mission is to prepare children and young adults who are blind with the education, confidence and skills they need to realize their potential.

Perkins is a champion for children with blindness and other disabilities. It has a long history and stellar reputation for service including the fact that Annie Sullivan – arguably one of the most dedicated and creative teachers ever – was educated there.

Second, Dr. Christine Roman-Lanzty has spent decades of her professional life studying CVI, and seeing thousands –

let’s say that again –

thousands –

of children identified with this brain based visual impairment.

Dr. Roman-Lantzy knew there was a desperate need for an approach to training providers and educators about CVI.

She took it upon herself to approach organizations in the blindness community to help her develop a training

to help her advocate for better training of TVI on the unique learning needs of children with CVI.

The organizations said no.

Then, she approached Perkins.

Perkins School for the Blind, under the leadership of President Dave Power, understood the need for serving children with CVI, a quickly growing (yet still under-recognized) population of children. (HOW is that still possible?)

Dr. Roman-Lantzy said, “Children with CVI can learn. They deserve to be educated. Their families deserve to be supported. Perkins said YES.

Perkins and Dave Power welcomed children with CVI into the scope of their mission. Mary Zatta worked with Dr. Roman-Lantzy on developing the endorsement so educators and therapists would have a reliable tool to use when working with children with CVI. Perkins has since developed a wide variety of classes, webinars, and on-site programming around Cortical Visual Impairment to further support children, families and educators.

From my perspective, when Perkins agreed to develop the Perkins-Roman Range Endorsement, they said “Yes, your daughter matters.”

I will be forever grateful to them for recognizing a need and for taking that first uncertain step.

I respectfully suggest to anyone who wants to dismiss the CVI Range Endorsement, do your homework. Understand it. Understand the process of teaching children with CVI.

If and when you have another approach to teach our children, let me know. I will be the first to read your research, to buy your book, and to engage in a spirited debate

Until then, what purpose does it serve you to be cynical about people who are legitimately trying to help children with CVI and their families?

I am a mother. I do not have the luxury of cynicism. I have a finite amount of time to give my daughter the skills she needs to be as independent as possible. I am looking (I have spent the last decade searching) for what I can DO for my daughter.

Cynicism serves no one.

I have found a path within the work of Dr. Christine Roman-Lantzy. We have seen success on this path. Our daughter is learning to recognize pictures. She is learning to sign. She is learning to communicate and to understand concepts.

We have found hope on this path. She will be able to communicate her wants and needs. She will have enjoyable activities in her life and opportunities to socialize in a meaningful way because we are learning how to teach her about the world in a way she can understand.

Why would you deny my family this information, this reliable and valid method of assessment and education? Why would you deny us hope?

Many CVI parents will be happy to give you their anecdotal evidence about how their children’s vision (and consequently, their cognition and their behavior) have improved by working within the scope of Dr. Roman-Lantzy’s work.

We don’t have time to be cynical. Cynicism kills hope.

Sometimes hope is all we have.

CVI is new territory for medical and educational professionals. We need more research. We need to raise awareness. There is a newness to this movement that makes some doctors and teachers of the visually impaired uncomfortable. It is uncomfortable. We get it. Parents of children with CVI live outside of our comfort zones all the time. We are learning all the time. Sometimes our efforts fall short of our expectations. We learn from them and try again. There is no other option for us.

But, for those who choose to stand on the sidelines criticizing and spreading misinformation about Perkins, Dr. Roman-Lantzy, and exceptional teachers like Ellen Mazel, I ask you: What purpose does your criticism serve? Who does it help?

Aren’t you supposed to be helping the children and their families? How are you helping?

What a disappointment it is to not even try.

What a greater disappointment to disregard those who do.

Adventures in Advocacy / NE AER / Part 3

December 7, 2017December 11, 2017 CVI Momifesto1 Comment

Be a life long learner about CVI.

Be a life long learner about the brain.

Ellen Mazel, the CVI Teacher (https://cviteacher.wordpress.com), offers this advice to parents of children with CVI and to the teachers who work with them.

In her presentation at the Northeast AER Conference, Ellen shared information on learning assessments and intervention strategies from her extensive experience as a Cortical Visual Impairment Advisor and a Certified Teacher of the Visually Impaired.

Her audience primarily consisted of TVI and COMS, however, everything about the presentation resonated for me as a parent. Watching presentations from teachers who know CVI always help me broaden my perspective and recharge my batteries. It gets discouraging being the only person at an IEP meeting who knows what Cortical Visual Impairment is and how it negatively impacts my daughter’s learning.

Sometimes, after a particularly frustrating day, I think, maybe, I am just kidding myself. Trying too hard. My girl is a complex kid. She is non-verbal and has an additional diagnosis of autism. We are struggling to find a consistent method of communication. We do not get a lot of eye contact. Interaction takes time and effort. It is hard to read her. It is hard to know what she understands.

It is all too easy to develop low expectations for a complicated kid like her. I have fought against low expectations in IEP meetings and in teacher-parent meetings, yet I have struggled to learn how to reach her myself.

Ellen’s presentation reminded me that this is an ongoing journey.

Regarding the perspective of the parent/teacher:

The importance of presumed competence and eye contact.
- CVI masks cognitive ability. Our children are often not able to maintain eye contact. (Children with visual impairments cannot be accurately assessed by traditional cognitive tests. IQ tests are not going to work on this population of children.)
- Research has shown that children who do not maintain eye contact get far less social interaction and attention from caregivers and teachers. Be aware of this tendency to interact less with a child who does not maintain eye contact.
- Since we cannot tell what a child who is not maintaining eye contact understands, we have to presume that the child understands and continue to teach the child in an accessible way.
If we expect improvements, we will get improvements. The minute we do not have expectations, we are guaranteed not to get improvement.
Read articles and attend presentations. – Research about CVI and the experience offered by CVI Range endorsed teachers will be found at conferences and in journals before you will be able to find it in a book.

Regarding IEPs and Assessments:

The CVI range endorsement is the beginning of your journey NOT the end.
- Yes, we need to demand a teacher who has completed the Perkins-Roman CVI Range endorsement, however, it is only the starting point.
IEPs need to say “brain based visual impairment,” when diagnosed, by whom, the score, and the result of the Functional Visual Assessment (as it relates to CVI).
When assessing a child, Ellen uses the CVI Range (Roman), Dr. Gordon Dutton’s survey, and Matt Tietjen’s “What’s the complexity” framework.
Remember that the parents’ interview gives all important visual history – if vision has improved – consider CVI
Best practice accommodations and modifications should be based on the CVI Range score
Strategies need to be embedded throughout the day
Ellen puts together a salient features presentation so everyone on the child’s educational team uses the same language.
As a consultant, she advises that the IEP includes a 1 hour in-service about CVI and a 1 hour in-service about how CVI affects this particular child
Embed the theory that there is something visual in front of that child all the time.
Use more CVI supports in place when developing weaker visual fields.
Introduce yourself and use the child’s name so she knows you are talking to her
Limit touching and moving children while they are trying to look.

I’ll end with Ellen’s explanation of “infused advocacy,” or teaching the children how to problem solve for themselves.

Parents and teachers can start teaching a child to become a self-advocate by teaching her about the characteristics of CVI and by including her in the process of making her own accommodations and modifications. When a child understands that how she perceives the world is different from other people, she can learn to articulate her unique needs. She could ask other children to say their names when they approach her to help her identify them. She could explain to her mom that cluttered rooms make her feel anxious or scared. She could tell her teacher that new places are confusing and ask for extra time to get to know a novel environment.

This part of a child’s education, learning how to articulate her needs, is so important. We spend so much time talking about the kids. Listening to them (or, in the case of a non-verbal children, quietly observing them) is even more important.

This is a fascinating and busy time in the history of Cortical Visual Impairment. There is a solid foundation of knowledge and a growing current of educational strategies and research. There is an active and vocal community of families around the world. There are teachers who can guide us!

At the center of all of this activity remains the children who have to be equal partners in putting together the puzzle that is their picture of the world.

Northeast AER 2017 / Adventures in Advocacy / Peg Palmer knows CVI

November 16, 2017November 16, 2017 CVI Momifesto4 Comments

Good morning fellow families of well loved children who happen to have Cortical Visual Impairment,

I am writing from the Burlington Hilton where the 2017 Northeast AER conference is well under way. I have heard that the attendance is roughly 300 TVI, COMS (Certified Orientation & Mobility Specialists), Low Vision Therapists, Occupational Therapists, Physical Therapists, with some program directors thrown in for good measure.

This is a great turnout.

Thanks to the efforts of Dr. Roman-Lantzy and people who lead the DeafBlind Projects in the Northeastern United States, this part of the country is well ahead of the curve on awareness of Cortical Visual Impairment. There are TVI here who received training from Dr. Roman-Lantzy over 10 years ago and have been honing their skills and gaining knowledge ever since.

This conference has a CVI track – meaning there are presentations on various aspects of CVI in almost every time slot. This may be almost unheard of at a conference like this. It certainly is from my personal experience in which I show up at conferences and ask questions about CVI just to see what the response will be. The response is usually a cold, hard stare from the presenter who is probably wondering who let a parent in.

It is refreshing and maddening at the same time.

Yesterday, Peg Palmer, a Perkins-Roman CVI Range Endorsed TVI with decades of experience, allowed me to hijack 15 minutes of her presentation about the CVI Range.

A shout out to Peg Palmer whose professionalism and compassion knows no bounds. Connecticut is lucky to have her. Her presentation on working through the CVI Range was very informative. The videos of students she showed elicited a lively conversation and a lot of questions.

Exactly what we need.

I was able to talk to a room of 50 TVI and COMS (with a few therapists and a couple of program directors thrown in) to give them a parent’s perspective. I shared some of my story as E’s mom and how challenging it has been to get CVI recognized, let alone understood in classrooms.

I asked them three things:

1.To believe in our children’s ability to learn

The presence of CVI is not an indicator of cognitive ability. (Source: The CVI page on the American Printing House for the Blind website)

I told them the Lego Tree story (see post on Lego Trees) and explained how easy it is for teachers, aides, and therapists to develop low expectations for our children if they do not understand the characteristics of CVI. How many learning opportunities get lost if a teacher does not understand latency and lack of visual reach? Too many.

2. To reach out to AER and to ask them make CVI a priority in professional development and in university teacher preparation programs

A few weeks ago, I had a meeting with the Executive Director of AER, Louis Tutt, and the Deputy Executive Director, Ginger Croce. They very kindly answered my questions about AER’s slow recognition of Cortical Visual Impairment. Only last year, did AER put together a provisional committee on Neurological Visual Impairment.

Mr. Tutt told me AER responds to the concerns of its members. So, if AER members contacted the president of their state chapter with the message that more professional development needs to happen for TVI and that future TVI needed to get more training on CVI, progress would be made.

Now we know.

Did you know that parents can join AER as a Associate Member for $98/year? This is a non-voting membership category for anyone who is not employed in the field such as a parent or caregiver.

FYI: Here are some email addresses you may find useful.

Executive Director, Louis Tutt – lou@aerbvi.org

Chair of the Neurological Visual Impairment Committee, Susan Sullivan, ssullivan@aph.org

Chair of the Personnel Preparation Committee, Olga Overbury, olga.overbury@umontreal.ca

You can find the president of your state AER chapter at aerbvi.org.

You could tell the powers-that-be at AER that you are the parent of a child with CVI and that you value their dedication to children with vision loss.

You could tell them that children with Cortical Visual Impairment, just like children with ocular vision loss, are not incidental learners (See how that came in handy?).

You could tell them that children with CVI require a different educational approach than children with ocular vision loss.

You could ask them to make educating children with CVI (the #1 Pediatric Visual Impairment in the United States and the Western world) a priority. That means university teacher preparation programs need to add CVI to their curricula. That means school systems need to provide extensive, ongoing professional development.

Understand this. No one has all the answers. This condition is complicated. Each child is unique.

What we need to ask is that they join us in asking the right questions and seeking the answers.

3. To seek out more training

I told them about the Perkins-Roman CVI Range Endorsement. I told them it wasn’t fair to ask them to do more training when that are understaffed and overworked. I also said the training they got for children with ocular vision loss does not work with our kids.

So, to sweeten the deal, I offered pie.

Really, it’s all I’ve got.

Adventures in Advocacy: What would you say to a room filled with TVI?

November 13, 2017November 13, 2017 CVI MomifestoLeave a comment

Hello Fellow Parents of Adorable Children who happen to have a diagnosis of CVI,

If you found yourself standing up in front of 50 Teachers of the Visually Impaired, what would you want to tell them?

This week, I am going to Burlington, Vermont to the North Eastern AER conference.

AER (the Association for the Education and Rehabilitation of the Blind and Visually Impaired) is the professional membership organization for TVI and Orientation and Mobility Specialists. AER offers approval to teacher preparation programs that meet AER standards. There are AER chapters in many states or regions across the U.S. and Canada. AER conferences are where education professionals in the field of vision loss can get together to learn, to share and to network.

At the North Eastern AER conference, Ellen Mazel and Peggy Palmer are both presenting on different aspects of CVI. They are very kindly allowing me to have 10 minutes to address their audience of educators.

I am going to Vermont because, as Ellen Mazel says, “Our kids can’t wait.”

But, we all know they are waiting.

I hope to ask the TVI about the number of children they see with CVI. I am genuinely curious to hear what they have to say.

As experienced teachers, they know that kids with CVI are already in the classroom.
They have been for decades.
They can learn.
They need teachers who believe in their abilities.
They need teachers to have high expectations for them.

They need teachers who recognize the need to get more training to be able to bring the world to these children. The fact that these educators signed up for Ellen and Peggy’s presentations means that they are aware of the need for improvement.

And, the saying goes, “It never hurts to ask… TVI to take the classes to become CVI Endorsed.”

Okay, I added the last part.

At the risk of becoming the broken record all CVI parents become, CVI has been discussed and researched for decades. CVI is the most common visual impairment in the Western world.

Yet, only last year did AER, the professional organization for educators for blind and low vision students, agree to form a provisional committee on Neurological Visual Impairment.

There is a disconnect here somewhere. I think the disconnect is the lack of urgency for real progress in the education of children with CVI.

The national office of AER is in Washington D.C. Since I live close to D.C., I recently made an appointment with the Executive Director, Lou Tutt. I wanted to find out about AER’s stance on how to prepare their members to teach children with Cortical Visual Impairment. Mr. Tutt and Ginger Croce, Deputy Executive Director, very kindly took the time to answer my questions.

What I took away from the meeting was the following:

AER takes guidance from its members. According to Mr. Tutt, if enough members demanded more information and training on CVI, then AER would comply.
Reaching out to the head of the Neurological Visual Impairment committee would be a good way to continue the conversation. I have not done this yet because I wanted to attend the conference first and get more information.

If there is a disconnect, maybe parents are the connection. Maybe our urgency is what is needed to get CVI addressed by the organizations that create policy and teacher programs.

Let’s see what happens in Vermont. I will get the chance to ask a group of members to strongly encourage AER to approve more training for teachers who will be teaching children with CVI. I will suggest they get the Perkins-Roman CVI Range Endorsement. I will offer them pie.

I will let you know how it goes.

And, remember, if you have something you would like to tell them, send it in to info@cvimomifesto.com.