Advocacy – Page 2 – CVI Momifesto

Adventures in Advocacy / DC + MD AER Conference

April 3, 2018April 3, 2018 CVI MomifestoLeave a comment

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

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.

AAPOS 2018 / Champions and Challenges

March 24, 2018June 28, 2018 CVI Momifesto1 Comment

The annual conference for Pediatric Ophthalmologists from all over America and around the world has ended. From one mother’s perspective, volunteering at the conference was an education in itself.

CHAMPIONS

For the first time, the Pediatric Cortical Visual Impairment Society had a table in the AAPOS (American Association for Pediatric Ophthalmology and Strabismus) exhibit hall.

The Pediatric CVI Society is the one organization in America focusing on raising awareness about CVI and advocating for improvement in medical and educational outcomes for children with CVI. It is a 501 c3 non-profit organization driven by membership and donor funding. HINT HINT (www.pediatriccvisociety.org)

The PCVI table was around the corner from the Perkins School for the Blind table. Perkins has become a leader in moving education about CVI forward for providers and families. (www.perkinselearning.org/cvi)

Carol Kinlan from Perkins and I referred interested doctors to each other’s tables. It was very encouraging to have another champion for children with CVI in the exhibit hall. Not only is there strength in numbers, there is momentum in numbers.

And, there was yet another champion for children with CVI raising awareness and creating traffic at the PCVI and Perkins exhibit tables.

Dr. Sharon Lehman, a Pediatric Ophthalmologist from Nemours Hospital in Delaware, generated interest among the attendees with her scientific poster presentation on a survey she sent out to pediatric ophthalmologists and teachers of visually impaired.

Here is some of the information from this poster presentation. CVI families may find this particularly interesting.

Attitudes Concerning Cortical Visual Impairment Among Pediatric Ophthalmologists and Teachers of the Visually Impaired.

METHODS

An email study was distributed to the 2 groups via their two respective national organizations (AAPOS and AER). The survey contained questions about the following:

Frequency of seeing children with CVI

Adequacy of education about CVI during training

Comfort with making diagnosis

Adequacy of communication from the pediatric ophthalmologist

Comfort with making recommendations

Referral of patients for services

Interest in receiving further education about CVI

RESULTS

The response rate for pediatric ophthalmologists was 8.0%.

The response rate for TVI was 14.8%.

A significant gap was identified in opinion of the adequacy of communication from the pediatric ophthalmologist to the care team.

Communication was deemed adequate by 61.9% of pediatric ophthalmologist respondents while it was considered not adequate by 68.4% of TVI respondents.

The majority of respondents of both groups (80.5% of pediatric ophthalmologists and 85.8% of TVI) wished to learn more about CVI.

DISCUSSION

The survey highlights gaps in knowledge and attitudes concerning the care of patients with CVI that limit the effectiveness of the team’s patient care. The strong desire to learn more about CVI is a positive finding that bodes well for patients.

The relatively low response rate (8.0% of pediatric ophthalmologists and 14.8% of TVI) is a limitation. It may indicate that there is a core section of individuals within both provider groups interested in CVI who could develop expertise in providing services for children with CVI. The attitudes of the nonrespondents is unknown and could be valuable in interpreting the data.

CONCLUSION

Lack of standardized methods for evaluation and diagnosis and for providing recommendations for children with CVI create challenges for the care team. Improved clinical education of pediatric ophthalmologists and TVI and development of standardized tools that can provide the patient’s team with necessary information are practical ways to approach this problem.

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It was heartening to see research about CVI discussed by the medical community. We need our pediatric ophthalmologists to acknowledge CVI and to learn what to do when they identify a child with CVI. Dr. Lehman’s work is having a positive impact.

Challenges remain.

Here is what I heard from the majority of doctors who came to the PCVI Society table to get more information and resources for their patients and to join the email list.

“I see so many of these kids in my office.

I get so many of these kids.

I don’t know where to send them.

I don’t know what to give them.

CVI is scary.

I don’t know what to do with it.”

I am glad these doctors were willing to approach the PCVI Society table, and to admit that they need more information. I am glad that this year these doctors left with a list of resources and take away information about how to diagnose CVI.

Bravo to the doctors who are seeking out new information and who are not afraid to admit that they have more to learn. Bravo to the doctors who are seeking out a community for their patients. They are championing children with CVI as well. Someone should bake pies for these people!

Encouraging education and debate about Cortical Visual Impairment (Cerebral Visual Impairment, Neurological Visual Impairment, Rumplestiltskin – whatever term we are using today) is critical to the common goal of getting our children diagnosed more quickly and accurately.

To this mother’s untrained eye, it seems as though, until recently, when conversation about CVI turned into debate about which word follows the “C” – Cortical or Cerebral – the debate stopped. The opposing sides retreated to their camps and dug in until further notice.

This unyielding approach (from the jaded and sleep deprived eye of a mother who sat through too many hours of unsuccessful IEP meetings, so consider the source) does a disservice to doctors, teachers, families, and most importantly, children.

This approach has left many children sitting in classrooms without access to their educational environments. This approach has left many confused parents piecing together information from competing (?) sources in their individual attempts to educate the uninformed doctors and teachers in their child’s life. This “approach” is not an approach at all. It is static and unproductive.

Now on many fronts there is a willingness for an open exchange of ideas and research. Much of this openness has been fueled by the urgency of families who will wait no longer.

Every presentation, every poster, every question asked at an exhibit table brings us closer to our common goal.

Let’s keep our lines of communication open with our pediatric ophthalmologists and pediatric neuro-ophthalmologists. Next time you see your child’s doctor, you can mention the AAPOS conference. You can tell your doctor that CVI is becoming a hot topic and – just a thought – that you’d like your doctor to participate in the conversation. Even better, you two can have your own conversation.

lehman pcvi

Image: Dr. Sharon Lehman and Rebecca Davis standing in front of the exhibit table for the PCVI Society at AAPOS 2018

P.S. The conference hall NEVER got warmer or brighter. I decided the architect of the Washington Hilton was just a huge science fiction fan. (It is possible I had some time on my hands for random speculation while sitting and freezing at the table.)

Adventure in Advocacy / AAPOS 2018

March 19, 2018 CVI Momifesto2 Comments

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

I’m sitting in the Cabinet room which is technically a conference hall of the Washington Hilton Hotel. I am the responsible adult for the Pediatric CVI Society’s very first exhibit table.

How fitting that this event should occur at the annual conference of the American Academy of Pediatric Ophthalmology and Strabismus.

Pediatric Ophthalmologists! Maybe there’s a Pediatric Neuro-Ophthalmologist thrown in here somewhere. I’ll have to ask.

This is important because it remains difficult for families of children newly identified with Cortical Visual Impairment to receive an actual diagnosis of CVI.

This is important because even if a doctor does diagnose CVI, she or he may not realize that CVI can improve with the appropriate interventions. She or he may not realize that education – for children, parents, caregivers, therapists, and teachers – is the key to improving a child’s functional vision.

They can’t fix CVI. So, many of them don’t address it. They are not SEEING CVI. (That one’s for you, Brenda Biernat. I’m wearing the shirt!)

This is the year, the PCVI Society begins to change the landscape of CVI in the medical community.

We have actual conference materials.

pcvi table.png

Image; An exhibit table covered by a black tablecloth and white drape with PCVI in large letters. Other exhibit materials promoting the PCVI Society.

Image: A low lit ceiling which may also be the inside of a alien ship. I just report ’em like I see ’em.

I have to mention that when CVI Mom Rachel and I were setting up yesterday, it was weirdly dark in here. There’s an alien/cave vibe happening. I thought for sure they’d turn up the lights for the actual conference. Not yet. We may take off any moment now for the general cosmos.

We have swag – Diagnosis cards and hard candy. (If that wasn’t the name of a punk band in the late 70’s, it should have been.)

hard candy

Image: A gift box with candy spilling out on to a table covered by a black tablecloth.

We will see how I do here after 3 days. Maybe the low lighting is a deliberate move to calm the well documented frantic energy of pediatric ophthalmologists.

Carol Kinlan of the Perkins School for the Blind just came over to say hi.

Will keep you posted.

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 / A CVI Mom Goes to Capitol Hill Advocacy Day 2018

March 8, 2018March 10, 2018 CVI Momifesto1 Comment

Last week, I had the chance to join the American Foundation for the Blind (AFB) and CEASD (The Conference of Educational Administrators of Schools and Programs for the Deaf) in their efforts to advocate for the Cogswell-Macy Act. Cogswell-Macy (H.R. 1120, S. 2087) is legislation named after Alice Cogswell, the deaf child who inspired Thomas Gallaudet to introduce deaf education to the United States and Anne Sullivan Macy, Helen Keller’s gifted teacher.

Why We Need the Cogswell-Macy Act

From the AFB Website: Today’s schools are not prepared to help children who are deafblind, deaf or hard of hearing, blind, or visually impaired develop to their full potential. (Magnify this statement times 10 for children with a brain based visual impairment such as Cortical Visual Impairment. See my earlier post titled Lego Trees and the posts under Death by IEP.)

The Cogswell-Macy Act is the most comprehensive special education legislation for students with sensory disabilities to date.

This act seeks to expand the resources available to these students, and their parents and educators, through the Individuals with Disabilities Education Act (IDEA).

The Cogswell-Macy Act would –

ensure specialized instruction specifically for students who are visually impaired, deafblind, or deaf or hard of hearing.
increase the availability of services and resources by ensuring all students who are deaf or hard of hearing, blind, visually impaired, or deafblind are accounted for.
enhance accountability at the state and federal levels.
increase research into best practices for teaching and evaluating students with visual impairments by establishing the Anne Sullivan Macy Center on Visual Disability and Educational Excellence—a collaborative consortium of nonprofits, higher education institutions, and other agencies to provide technical support, research assistance, and professional development.

To learn more: http://www.afb.org/info/get-connected/take-action/12

AFB and CEASD can offer you much more detailed information about this bill.

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What I can do is give you the play by play of the novice parent advocate who lives near D.C. and wants to help.

WEAR COMFORTABLE SHOES. Someone told me this last year. I thought I wanted to look professional so I’ll just wear my most comfortable heels.
THERE ARE NO COMFORTABLE HEELS.

Image: A pair of black shoes with heels and a binder with pictures of a child on the cover

I call this photo “Waiting for Senator Warner 2017.” By this time of day (early afternoon), I was already barefoot in a Senate building and sporting some impressive blisters.

3. DO NOT WEAR HEELS. Did you not hear me the first time? I know, I know. It’s the Capitol and the heart of our democracy, but seriously. Look around, everyone who works there wears tennis shoes or flats to run from building to building. They must keep their uncomfortable grown up shoes in their offices.

4. When you feel smug about how early you got up to drive to the Metro and catch a train to go into D.C., don’t. I got to our local Metro station in ample time to catch a train to be at the Advocacy Training by 8:30 a.m. And, the train was “delayed.” I waited. Annnnnd, after 20 minutes the status of the train was now “suspended.”
And, I ran back to the parking garage (Vienna Metro owes me $5) and drove to D.C. See where the shoes come in?

Image: My view of Northern Virginia traffic from the windshield of my car

Image: The dome of the Capitol building in the distance taken from a side street

5. When you see the Capitol, look for parking. And, keep looking, because the concept of public parking in D.C. is a city version of snipe hunting. Sure, you can drive to D.C. and find easily accessible parking! Sure, there are snipe in them there woods! (My family hails from Kentucky so I get to use phrases like “them there woods.” Although no one in my family has actually used the phrase “them there woods.”)

Image: A line of people standing outside the Rayburn building in DC

6. FYI – When you find parking (snipe!), you will not get even close to the government building you need to be in RIGHT NOW. When you hustle (SHOES!) to get to that building (by now only a half an hour late), there are dozens of people lined up outside the entrance waiting to get through security. What the heck? It was not this hard to get in the building last year.

At least, standing in line, you have time to catch your breath, dab your sweaty forehead with a Kleenex, and curse yourself for not leaving even earlier in the morning.

Then, you get a text from Rebecca Sheffield, Senior Policy Researcher, Ph.D. from the American Foundation of the Blind. (This is just a cool sentence to type.)

The text says, “If you are still on the way can you go over to the Russell building for a meeting with Sen. Tim Kaine’s staff?” Some of the Virginia advocates had not yet checked in. I imagined them sitting on the same metro platform I had been waiting on.

This year, you are wearing good shoes so YES, Rebecca Sheffield!

You ask no less than 3 D.C. policefolk how to get to the Russell building. Normally you could have cut across in front of the Capitol but the Rev. Billy Graham was lying in honor there. There were barricades all around the building and another line of over a hundred people waiting to pay their respects.

You will pass the Supreme Court building. There is a line to get in there as well. D.C. is a just a buzz of activity! You will see Boy Scouts. You see high school students from Oakton, Virginia on a scavenger hunt. You see Americans and tourists of all sizes, ages, and colors. It is a beautiful power walk through D.C. in business attire.

Image: The Supreme Court building

You hoof it to the Russell building, one of several Senate office buildings and location of Sen. Tim Kaine’s office with roughly 8 minutes to spare. Success!

Image: Outside of the Russell building

You have just enough time to dab sweat again, look over the talking points on Cogswell Macy and find Sen. Kaine’s office. This building is a buzz of activity as well. There are groups of teenagers, flower growers from all over America dressed in suits with brightly colored corsages pinned to their lapels, other advocates and lobbyists moving in packs with their affiliations written on badges hanging around their necks. Everyone has folders of talking points and information to leave with staff.

For a brief moment, standing outside the office, you are nervous that you will flub something in your meeting. You walk past well dressed teens joking around in the hallways and wonder how long it took one young man to get his part that straight. You feel a pang of something – not regret – envy? – because you know your own little girl will not have a moment like this. These teenagers take in so much information about this busy place, about each other in a single second because they have normal vision. Because they can learn incidentally.

You think about all of the students throughout the U.S. who are blind, or deaf, or deafblind. You think about all of the children with sensory loss who are misunderstood in their classrooms. Children who lack ACCESS to their environment. You think about your own daughter and her diagnosis of Cortical Visual Impairment – information that inevitably produces the following response: “Huh?” – when you mention it for the first time.

You think about how many times you’ve tried to explain your daughter’s visual impairment. How it seems as though she is not paying attention or that she cannot understand because typically sighted folks do not know what to make of a child who does not look them in the eye and who takes longer to respond.

You think about the national shortage of Teachers of the Visually Impaired and Orientation and Mobility Specialists. You think about the lack of teachers and other providers who know what to do with a child with CVI. There is so much work to be done to give our children a better chance to connect with the world around them, to give us a chance to reach them. Frankly, you feel a tad overwhelmed.

You want to yell, “Oh, Senators, we need co-sponsors for Cogswell-Macy! We need champions for children with sensory loss. We need champions for children with CVI!”

You do not.

Image: Kirk Adams, a tall man with gray hair holding a cane, and Adrianna Montague, a woman in a black dress smile while standing next to a sign that reads Senator Tim Kaine of Virginia

7. You enter the senator’s office to jump into Advocacy Day (and decide to stop numbering your post that has gone on way too long and will be read by no one…).

With a flood of relief, you find Kirk Adams, the president of the American Foundation for the Blind, and Adrianna Montague, the Chief Communications and Marketing Officer for AFB, waiting for the meeting as well.

You meet with one of Sen. Kaine’s staffers, Karishma Merchant, who oversees education and other issues. Ms. Merchant is a willing audience and asks great questions.

AFB recently moved their main office from New York to Arlington, Virginia. Mr. Adams and Ms. Montague take this opportunity to introduce AFB as a resource for Sen. Kaine’s staff and to emphasize the need for legislation like Cogswell Macy. You get to tell her a little about the challenges children with sensory loss face in U.S. school systems.

Ms. Merchant asks your help to advocate against legislation that was introduced in the House to deregulate the Americans with Disabilities Act.

ACTION ITEM: H.R. 620 is what supporters in the House are euphemistically calling the ADA Education and Reform Act (H.R. 620). Don’t believe it for second.

Senator Tammy Duckworth of Illinois is leading the call to ask Senator Chuck Schumer and Senator Mitch McConnell not to bring forward H.R. 620 or any similar bill.

Calls to senators in Florida, Indiana, Maine, Michigan, Minnesota, Nevada, New Mexico, Oregon, Virginia, or Washington will have the most impact. (https://www.senate.gov/senators/contact)

You leave Sen. Kaine’s office hoping that you have earned another co-sponsor for Cogswell-Macy and prepared to help him advocate for all people with disabilities.

Then, you bid Mr. Adams and Ms. Montague adieu and wait for your next appointment with Sen. Mark Warner in the afternoon. You have time to jog back to your car and feed the meter.

Later, at the Hart Senate Office Building, for the meeting with Senator Warner, you will see this sculptural work Mountains and Clouds by Alexander Calder. The Hart building feels different from other senate buildings. Wikipedia tells me its architectural style is Modernist not Neoclassical like the Dirksen and Russell buildings.

Now you know for your next Adventure in Advocacy. If you see this sculpture, you are in the Hart Senate Office Building. Handy!

Image: Large black triangular sculpture that nearly touches the ceiling of the atrium of the Hart building

Image: Woman standing next to a sign that reads Senator Mark R. Warner / Virginia

At some point in the afternoon, you realize you’ve been taking pictures of places but very few pictures of people. You wish you had gotten a picture of the flower growers and their brightly decorated lapels, or the extremely straight part in that young man’s hair.

At Senator Warner’s office, you have a brief meeting with Lauren Marshall, the same staffer you met last year. She is attentive and kind. She promises to reread Cogswell-Macy and to bring it up with Sen. Warner.

That’s really all you can ask.

You walk away from the Hart Building hoping you have made some small connection within the Senate for children who are blind, or deaf, or deafblind. You know that these populations of children do not get a lot of press. You hope you can help spread a sense of urgency about the challenges facing children with sensory loss in the classroom.

You want senators, representatives, and anyone who affects legislation to understand two simple facts. These children matter. Their education matters.

At the end of the day, you hope you have made it easier for the next mom to reach out to her legislator to tell her story. That mom is going to make change happen for her child. She is a force of nature.

P.S. You make it back to your car in time to avoid a ticket. Success!

You see this poster at the Thai restaurant next to your car.

Pretty much sums it up.

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.

Moms on Monday / Storytelling is dangerous

February 12, 2018February 16, 2018 CVI Momifesto1 Comment

“Storytelling is dangerous to those who profit from the way things are because it has the power to show that the way things are is not permanent. Not universal and sometimes, not even necessary.”

-Ursula Le Guin

Hello fellow families of delightful children who happen to be identified with Cortical Visual Impairment,

There are several mothers out there who have let me know that they are working on a post for Moms on Monday. Ladies, I thank you. I’m a mom and it’s Monday, so I’m going to invite you once again to share a part of your and your child’s story with us. When you have the time, of course.

As we all know, and as Dr. Roman-Lantzy frequently says, CVI Moms are the busiest people we know.

We are the busiest people she knows because we are working tirelessly to get our children acknowledged and accommodated in a system that is not built to acknowledge or accommodate them.

The way things are is exhausting and discouraging.

I hope to gather as many stories as possible as a resource of personal experiences for families. Every story is important. Please know that there are no wrong answers. You can write something original, or you can use the questions in the Calling All CVI Moms post as a starting point. You can help another parent just by allowing your voice to be heard and allowing your child to be seen.

There is another reason for collecting stories.

As the writer Ursula Le Guin reminds us, the way things are is not permanent.

Not universal and not even necessary.

Let that percolate for a minute.

The way things are is not permanent.

Not. Universal.

And

Not. Even. Necessary. (This is my favorite part.)

We have a unique ability to assess the shortcomings of the systems we are fighting. (Did you ever think you’d be an expert on neurology, ophthalmology, neuroscience, & methods of teaching children with sensory loss? Me neither.)

From our shared experiences, we have the ability to imagine a better way and to work towards a “Way things are” that recognizes and provides for children with CVI.

Our stories will become a spotlight on inefficient, outdated methods of data collection and a tone deaf educational system. Our children matter. They need to be counted. They need to be taught, actually taught. (ACCESS! They must have access! They are not incidental learners! Sorry, I just had to get that out.)

As CVI families begin to advocate, they will find themselves in the offices of their elected officials and speaking in front of school boards. When CVI families begin to advocate, they may feel as though they are fighting an uphill battle (yep) and that they are alone (NOPE).

The methods of keeping track of our children on local, state, and even the federal level are woefully inadequate. States vary in their expectation of counting children with special needs, and CVI does not even make it on the list of many states. It is still called “Cortical Blindness” in many places. We need to change that.

If the children are not identified, and not accounted for, then the funding necessary to provide resources will not be included in your state budget or the federal budget.

There are plenty of state legislators who will not want to give you the time of day because you and your story represent more expenses in your state’s government. That is just too bad because it’s your budget too. You live in and pay taxes in your state. Heck, you vote! (Please vote.) Your friendly neighborhood legislator needs to meet with you, a friendly neighborhood constituent.

Here’s an example of the power of storytelling.

When we moved to Indiana, Eliza was 2 years old. She had one more year of early intervention. She was globally delayed. We qualified for several therapies, occupational, physical, speech and developmental therapy. I was so grateful to have access to these services. I knew, however, that her lack of usable vision was going to affect how useful all the other therapies were, so I asked about early intervention for vision loss.

I was directed to the Indiana First Steps matrix – the database for all of the providers in the state. When I entered “visual impairment,” the name of an Optometry professor at Indiana University came up.

One name.

For the entire state.

And, the description mentioned making an appointment to come to his office to have your child assessed for glasses. Not home visits. Not early intervention.

What about the children who were blind? Or, who, like Eliza, were legally blind due to Cortical Visual Impairment and who needed to be taught to see?

I asked around and was referred to the Indiana State School for the Blind and Visually Impaired. I was able to set up an appointment with the Outreach TVI who came to my house to meet Eliza and me a few weeks later. She was the most wonderful and experienced TVI. She knew about CVI. She understood the lack of access and calmed my fears. She gave me several articles and showed me some ways to interact with Eliza that had not occurred to me. She stayed for over 2 hours.

My prayers were answered.

I asked to schedule our next appointment.

And, I discovered that this wonderful TVI had a caseload of over 300 children.

One teacher was the entire early intervention team for infants and toddlers who were blind or had severe vision loss. She drove around the state staying as long as she could, providing everything she could in the very limited time and with the very limited resources available to her. She knew it was not nearly enough. What she provided was what the system would allow.

It was just how things were.

By the time she could see Eliza again, Eliza would have aged out of early intervention.

How was that okay?

To make a long story a tad shorter, I eventually found myself testifying before committees at the Indiana Statehouse about the lack of early intervention for infants and toddlers with vision loss. I poured my heart out about how hard it had been to have a baby I could not reach while some committee members chatted or got up and left. (Not all. Some were very receptive.) I had meetings with state representatives who did not crack a smile the entire time I sat across from them. It was easy to walk away from these experiences and think that nothing would change.

I also had meetings with state representatives to vowed to work with me and did.

statehouse

Image: Three women seated around a table. Annie Hughes and Rebecca Davis meeting with policy staff at Indiana Statehouse.

Over time and with the help of Indiana State Senator Mark Stoops, and his brilliant policy director, LeNee Carroll, Indiana made changes to its Birth Defects Registry (worst. name. ever.). We got CVI and visual impairments added. We were able to advocate for and to build a system of early intervention services specifically for children with vision loss.

We (that wonderful TVI, Annie Hughes, an agency called Visually Impaired Preschool Services, and a group of kickass families) changed the way things were.

It can be done.

After your interaction with the cranky legislator who does not want to fund more services for children with special needs, you can tell Rep. Cranky to go to CVI Momifesto to meet more parents of children with CVI and to learn more about what they have gone through. The stories here can provide back up.

There is more back up on the way. 2018 will indeed be a turning point in the awareness of CVI. Many CVI moms are working to make sure of this.

You have the power to change the way things are.

gals

Image: Three women standing with arms linked. Meredith Howell (CVI Mom) and Annie Hughes from VIPS Indiana, and Rebecca Davis

Moms on Monday #12 / Anna from OH

January 29, 2018January 29, 2018 CVI Momifesto2 Comments

Happy Monday morning fellow families of glorious children who happen to have CVI,

This morning I am so glad to have permission to share the words and the works of a mother who has helped lay the foundation of the Pediatric CVI Society over the past few years. She has made great strides in raising awareness about CVI in her local community through her creative fundraising methods. In addition, she and her oldest daughter, Olivia, have been active in changing societal perceptions of children with special needs.

Anna from Ohio is the mother of three beautiful, energetic children and a RN who teaches student nurses.

In 2013, Anna started a blog, Hope She Smiles (http://oliviacansmile.blogspot.com) to chronicle her family’s experiences after her daughter, Olivia, was born. Anna gave me permission to repost some of her inspiring blog.

Thank you Anna and Olivia!

From September 2013

“Take her home and hope she smiles” was the quote from the Neonatalogist the day after our sweet Olivia was born.

The question that I’ve been asking myself over the past week is, “Where do I start?”

Usually the best place to start is at the beginning, but historically I do not follow the path that is paved. In an attempt to answer questions that I am frequently asked by other parents of children with CVI is, I will focus on the present with the past sprinkled in.

In August of 2007, we didn’t know what Olivia’s future held. We heard news from the NICU team at West Penn Hospital that would change our life forever. After suffering seizures and apnea 12 hours after birth, she was life-flighted to Pittsburgh. Her diagnosis was massive stroke in utero, cause undetermined.

What did this mean for her, her development, and her quality of life? We had so many unanswered questions. As a nurse myself, I struggled with understanding what this meant for a newborn. I knew in that moment that I was not acting as a nurse, but as a mother. A mother? I had only been a mother for 24 hours and I didn’t know what I was supposed to do.

SO the present…Where is Olivia now?

With the help of Early Intervention; Occupational, Physical, Speech, Vision therapies, follow up appointments; and a new appreciation for special needs children we were on our way.

She is currently in Phase III of the CVI Range and I know all of the above, plus other things that I will be mentioning in future blog posts, have been instrumental in getting us to this point.

Her main diagnosis resulting from the stroke: Cortical Visual Impairment (CVI). Luckily we were connected with Dr. Christine Roman-Lantzy from the Pediatric View Program when Olivia was only a few days old.

(Dr. Roman) has taught us that the focus should be on her vision, because it CAN improve. This statement gave us extreme hope and determination.

Olivia is in Kindergarten now and is a social butterfly. She is extremely happy and energetic. She can not only smile, but learned to walk, run, jump, ride a bike with training wheels, swim with a life jacket, horseback riding. We have even taken her ice skating.

Our approach to her and her diagnosis is “Let’s try it” Sometimes it is a success and she surprises us beyond belief and sometimes it fails and we vow to try again at a later date.

I believe our nontraditional approach has led us to where we are now.

From September 29, 2013 post entitled “Hope”ful

“Hope” she smiles…

The word hope was a word I used often in my life previous to the birth of my daughter:
I hope…we win the game.
I hope…I pass my test.
I hope…I make a lot of money.”

“Hope” now has an entirely different meaning. My outlook has changed since my first 30 years.

It all changed when I heard those words, “Take her home and hope she smiles.”

Hope has given me the drive to seek out interventions and modalities that will improve Olivia’s life. It has given us strength when the road that we are on proves to be challenging and frustrating. It has secured my belief in the blessings of God.

Hope reminds me that no one is perfect, we all have challenges that we face. I am proud to be helping Olivia meet those challenges head on.

Hope drives me to find a way.

Hope doesn’t come without disappointments. I hope for her to see, talk, read and write like all the other kids. I hope for her to make lasting friendships. Hope-fully these accomplishments will just take a littlemore time.

Lastly, I need to mention what drives hope. What is the fuel that gives us hope? Only one word…LOVE

From September 2013 post A Whole New World

My occupation is an RN. Currently, I work as a course instructor at a school of nursing. My job is to educate future nurses. I spend hours preparing objectives, lectures, exams, quizzes and teaching on the clinical unit.

I admit that I feel guilty that I devote so many hours of the day educating others when I have a child at home in need of learning a basic function–sight.

I am concerned when I send her off to school will she be learning in an atmosphere and a way that CVI children need to learn.

I have to somehow learn to let go and entrust other people, other professionals, to do their job.

But do they really know about CVI and all that it entails? Are they good enough for my child? I believe every parent feels this way regardless of the situation.

I do understand how crucial these early years are in the development of her vision. It can improve. But how?

Traditional methods used for visually impaired children to learn do not work for children with cortical visual impairment. The educators need to realize this and be able…no, willing…to adapt her learning appropriately.

So my goal is to find that way.

Bridging into Phase III on the CVI Range is a miraculous happening for my sweet Olivia. But the road through phase 3 seems to be a very complicated one. One that even the experts in the field don’t know how to conquer.

So I accept that challenge. I vow to find a way. My goal is for Olivia to reach a 10 on the CVI range. A 10 means that she functions as a child with no visual impairment would function. Why not? Why not attempt to reach for 10?

Remembering back to our NICU days about a week after Olivia was born, I remember one of the neonatologist saying to us, “Reach for the stars. If you miss, you have lost nothing.” This became our approach to Olivia and to her future.

Anna was instrumental in raising the funding that allowed the Pediatric CVI Society to achieve non-profit status. Anna and Olivia have done some very creative fundraisers. Even Olivia’s friends have risen to the challenge of supporting the PCVI Society.

In 2015, Anna’s efforts were recognized by the PCVI Society. She was the first inductee to the PCVI Society Hall of Fame.

President Dr. Richard Legge said in his remarks, “Without ever being to a meeting, she dedicated herself heart and soul to making PCVIS a reality.”

I loved her speech about fundraising. I think it resonates for many of us.

We fundraise for Olivia for a better future. I have a confession to make… The fundraising was completely self-serving.

I want better access to pertinent information about CVI. I want access to the professionals in the field. I want to know what the newest developments and research shows regarding CVI. I want to know the best interventions that can be used for children with CVI. I want it for myself and others in my place.

From the beginning of this journey I have been hungry. Hungry for knowledge, like most of you here. Parents, teachers of the visually impaired, speech therapists, occupational therapist, physicians, ophthalmologists… we are all want to be fed CVI knowledge. This society can feed us.
To start fundraising you first have to be willing to go out on a limb, get out of your comfort zone. Ask for donations. It can be scary, but jump in. We would jump into a pool to save our child if they are sinking to the bottom of the pool. We wouldn’t think twice. Jump in for our children. Save them.
Second; share your story, make a connection, and open up. Open up the dialogue with others about what CVI is. Keep your donors in the loop. Keep them informed of the ongoing fundraising, the intent and goals of the society, and the mission statement.
This past year, our supporters donated to our cause in good faith. I asked for donations to a Society, that wasn’t even a society…yet! And they did. The American Cancer Society started somewhere. This is our starting place.

Some of our examples of fundraising include a lemonade stand, an apple cider stand, thirty-one fundraiser, Jamberry fundraiser, Arbonne fundraiser. Other donations came from a fundraiser from Olivia’s elementary school, my co-workers that took up a collection for Christmas, other anonymous donations, and those that donated through the go fund me page. Don’t discount small fundraisers because they add up. If we all participate in fundraising, this society can grow even stronger and even bigger, helping more children with CVI.