Teambuilding – CVI Momifesto

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!

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

April 16, 2018April 29, 2018 CVI MomifestoLeave a comment

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

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

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

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

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

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

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

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

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

Talking points:

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

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

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

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

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

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

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https://openstates.org

This site can help you locate your state representatives.

https://www.govtrack.us

Govtrack will help you locate your federal representatives.

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

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

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

An example email:

Dear Sen. Washington,

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

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

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

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

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

Thank you for your service,

Thomas Jefferson

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

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

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

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

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

fight win!

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

Adventures in Advocacy / Anger & Courage

January 21, 2018February 28, 2018 CVI Momifesto2 Comments

Hope has two beautiful daughters; their names are Anger and Courage.

Anger at the way things are, and Courage to see that they do not remain as they are.

-St. Augustine of Hippo

I heard this quote during a presentation a couple of weeks ago. I really needed it this week.

It was a week of preparation for the next round of IEP meetings for my daughter. As is the new (ab)normal at times like this, I feel overwhelmed, underprepared, and anxious about what comes next. Every time we go over a new report, we have to compare it to the old reports and I am reminded of what I didn’t know then and then I wonder how much I just don’t know now. It’s very busy in my head right now. Reading over past notes and goals I disagreed with leave me frustrated.

I feel like a clenched fist with hair.

(And, nothing else gets done. Laundry? Groceries? You mean we still have to wear clothes and eat? Haven’t you people done that enough already? There are reports to read, questions to ask, and schools to visit, dang it!)

Thankfully, it was also a week in which I was able to participate in a conversation with a group of mothers and a dynamic TVI. These ladies are determined to make 2018 the year we DO something about CVI on a grand scale here in the U.S. Listening to the passionate ideas coming from them made me smile and left me with more than a little more optimism than I had that morning.

Now, I feel like a clenched fist with hair and optimism.

This past week, while preparing for the uncertain transition facing my family, I also found myself impressed with the resolve of the CVI families’ growing efforts to raise awareness and to change the current systems of service for our children.

You could say I was living between Hope’s two beautiful daughters if you wanted to be particularly cheesy and need to find meaning in everything you read or hear. I am particularly cheesy. I do obsessively look for meaning in everything I read or hear (I wrote the St. Augustine quote on my hand so I wouldn’t forget it, for Pete’s sake. Now I’m wondering – shouldn’t it be that “Hope has two beautiful parents”? Wouldn’t that make more sense? That Hope is the result of Anger and Courage? Will I be struck by lightning for questioning a saint? Probably. I warned you it gets busy in my head. My apologies to St. Augustine.)

As the mother of child with multiple special needs and a vision processing disorder few people understand, I am familiar with anger.

The fundamentals we want for our children are that they are protected, capable, and educated to the best of their abilities. Easy enough, right? (Cue the hysterical laughter. I’ll wait while you catch your breath.)

For parents like us, this includes the extra full time job of raising awareness and educating everyone we come into contact with that – say it with me – CVI is the #1 pediatric visual impairment in First World Countries.

If you are familiar with anger as well, WELCOME. You are in good company.

Anger is an energy. (My apologies to Johnny Rotten.)

Anger is a building block for Hope.

There is plenty to be hopeful about.

Conversations are happening between families and agencies in the blindness community. These families are acting straight from the heart out of the all too common mixture of love and frustration we feel as we force the world to recognize Cortical Visual Impairment and our children.

Soon, there will be a need to ask for more families to reach out, to ask questions, to make themselves and their stories known.

This growing group of parent advocates and TVI will be asking you to join us. We will need you to reach out to agencies, legislators, and others to educate them about CVI, to let ourselves be counted, and to let them know that our children matter.

We will provide the information you need to feel well-equipped to share your stories.

I hope you will allow yourself to be included.

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This is where the courage part comes in.

You may not think that you want to be someone who will stand up and be counted.

I think that you already are.

Brene Brown, the author and research professor widely known for her work studying courage, vulnerability, empathy, and shame, describes courage this way:

“Courage is a heart word.

The root of the word courage is cor – the Latin word for heart.

In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.”

“Speaking from our hearts is what I think of as ‘ordinary courage.’”

As a CVI parent, you operate from the heart every. single. day.

Every time you make the attempt to educate a doctor or a teacher about CVI, you are speaking from your heart, You are being courageous.

And, you are making it easier for the mom who will come after you.

Reading this post, researching online, following FB conversations, making D-I-Y materials to accommodate your child’s level of vision – all of these activities come straight from your heart. Through love, you perform acts of courage every day.

Join us as we speak from our hearts, taking our ‘ordinary courage‘ to a wider audience.

ACT of COURAGE/ ACTION ITEM:

Send your contact info – Name, Email Address, and State to info@cvimomifesto.com.

Your information will go on a growing list of families facing the same challenges. The information will not be given to any other agencies. This is a mom fueled project. We will use the information to keep you updated on future opportunities to advocate.

Moms on Monday #10 / Kate Keller from AL

January 8, 2018January 10, 2018 CVI Momifesto6 Comments

We are going back in history for today’s Mom on Monday.

Since 2018 will be a year for determined (ok, fed up) parents to advocate for our children with CVI, I wanted to start the year with some historical perspective, and, perhaps, a different spin on a very familiar story.

You may recognize the last name of this particular mom from Alabama, just as you would recognize the name of her very famous daughter, Helen Keller.

We all know the story of “The Miracle Worker.” Well, I hope we all do. A few years ago, I learned that one state had dropped Helen Keller, her story and her books (The Story of My Life, Light in My Darkness, Optimism & The World I Live In, to name a few) from their curriculum. I don’t know if this is a common occurrence in today’s elementary schools. I sincerely hope not because the story of Helen Keller’s life and her experiences with her gifted teacher, Anne Sullivan Macy, make for some of the most inspiring storytelling in American history. Anne Sullivan Macy’s own harrowing childhood and fight for education makes her lifelong dedication to Helen Keller even more compelling.

Mark Twain coined the phrase, “The Miracle Worker” after he read of Anne Sullivan’s success teaching Helen Keller, a young deaf-blind child. The Miracle Worker became the title of a play and a movie depicting Anne and Helen’s early days together.

It is a story of hope.

It is a story of determination.

It is a story of triumph over seemingly insurmountable odds.

And, as with every great story, there is more to it.

Before the story of the Miracle Worker could happen, there had to be parents who believed in miracles.

Kate Keller

Image: Kate Keller

Captain Keller

Image: Arthur Keller

In the 1880’s, after Helen was left deaf and blind following a severe illness at the age of 19 months, Kate and Arthur Keller spent years looking for a teacher who could reach her. Their efforts went directly against popular opinion that children “like Helen” were not teachable.

Kate Keller wrote countless letters to schools and doctors across the country. The Kellers often traveled for days from Alabama to see doctors in the northeast. They spent countless hours and dollars seeking out (often discouraging) “expert” opinions.

Years passed. As Helen grew more isolated, her behavior became more difficult to manage. Relatives called Helen a “monster” and advised them to send her away.

That Helen did not languish in isolation and ignorance is the triumph of her parents who believed that education (in the opinion of the time, “a miracle”) was possible.

Five years passed before the Kellers were introduced to Anne Sullivan. Five years.

(As the parent of a child with CVI and multiple disabilities I have often said that the days last forever, but the years fly by. I think about how long those five years must have been for Kate Keller.)

helen and annie

Image: A young Helen Keller seated on a chair holding a doll on her lap. Anne Sullivan sits on the ground next to her.

Kate, Annie, Helen

Image: Kate Keller, Anne Sullivan Macy fingerspelling into the hand of Helen Keller as a young woman

Helen herself once wrote,

“No pessimist ever discovered the secret of the stars…or opened a new doorway for the human spirit.”

She could have been referring to her own parents whose dogged optimism found the special teacher who unlocked Helen’s fierce intellect and compassion.

Over seven years ago, when my daughter entered the public school system, I found myself in the uncomfortable position of educating school systems about CVI and convincing people that my daughter can learn if they would learn how to teach her.

I found myself wondering how Anne Sullivan came to work with Helen Keller. I wondered what the Kellers had to go through to find her.

I wondered what Kate Keller went through trying unsuccessfully to communicate with her daughter who could no longer see or hear.

I wondered how difficult it was to hope against hope in an age before the telephone, before IDEA, before the Internet. I struggled to maintain hope and I have those things.

If you are living with a child with CVI (and possibly other disabilities) and you are finding it difficult to find resources or services that can help you and your child, you probably have an idea about how determined and discouraged Kate Keller must have felt at times.

You may recognize how those two conflicting emotions washed over her – buoying her or drowning her – as she watched her once bright eyed daughter lurch through the house, biting and pushing anyone who kept her from getting her way. You may have an idea about how desperate she felt to reach her daughter again.

I do.

As a parent of a child with CVI and multiple disabilities, I am grateful to Kate and Arthur Keller for their tenacity and their sacrifice.

Today’s parents are better equipped to fight battles of education and inclusion because of the struggles of parents like them.

Woodrow Wilson (one of the many presidents Helen Keller met in her lifetime) once said

“The man who is swimming against the stream knows the strength of it.”

In honor of Kate Keller and parents of children with CVI across the country and around the world I’d like to update this quote for you:

The mom who is swimming against the stream knows the strength of it.

From history and from our own experience, we know the strength of the stream….(sing along if you know the words)…. a surprising lack of awareness about CVI in the medical and education communities, too few Teachers of the Visually Impaired, no hard, accurate data on the numbers of children with CVI, too few providers/teachers with the specific training necessary to work with children with CVI, low expectations…..

We know the strength of the stream.

Thankfully, we also know that education is not a miracle.

It is a right for every child.

The miracles are the children themselves.

What we do for them will be the best work we ever do.

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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.

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.

“Some kind of help is the kind of help that helping’s all about…”

November 3, 2017December 4, 2017 CVI Momifesto7 Comments

Hello fellow CVI Moms and the wonderful people who teach and care for our children,

There are some days when my heart breaks and is put back together again by gratitude at the kindness of another human being.

You know those days when you try so hard and you think no one notices?

When you are the only one you know researching CVI providers in your spare moments while other moms are scheduling playdates. When you add articles in neuroscience to your Favorites page for a little light reading, and create experience books (while mentally planning more family “experiences” that you can document and print out to make more experience books). When you cram every possible detail into your brain about this neurologically based visual impairment that makes the world a confusing, overwhelming place for your child.

You become a confused, overwhelmed parent in the process. And, you think no one notices.

Or, when they do, it is definitely not what you need. I remember when E was a baby and no one was sleeping. I was just at the beginning of understanding the list of diagnoses we had just gotten. I was in over my head and trying to keep our lives somewhat functional. A lot of that time is a grey blur when I look back.

Many days I felt as though I was drowning in plain sight.

Often, people I’d have conversations with would just keep on having their conversations. And, all the while I would be thinking, “I am drowning here. Can’t you see that?” For the folks who did notice, many times their response was something similar to saying to a drowning person, “Hey, I see you’re drowning. Here’s a book on building a boat. You should really read it, assemble all of the necessary supplies, and build this boat – you know – to keep yourself from drowning.”

Drowning folks do not have the time, energy or resources to build themselves a boat. Parents of children with complicated medical issues, including CVI, get through some days by taking it minute by minute, or second by second. Surviving these moments in spite of the “help” offered by some becomes the only trophy you award yourself at the end of day.

Okay, so we can all agree, “some kind of help is the kind of help we all can do without.” (Read Shel Silverstein’s poem, Helping, if you do not recognize this reference. I’ll wait.)

Before I tell you how my heart got broken and put back together again, I need to make sure we are all on the same page here.

Cortical Visual Impairment…

(Cerebral Visual Impairment, Neurological Visual Impairment, or “Rumplestiltskin” – when I’m feeling cranky about the ongoing debate what to name this complicated condition)

…is a condition affecting children of many varied abilities. CVI is the result of many possible causes.

CVI is a term used to describe a variety of visual characteristics and the severity of these characteristics in a variety of children – some who are verbal, some who are not, some who are mobile, some who are not. Every child is unique. What every child needs is unique to her or him. It’s a challenge to find common ground when discussing such a variety of children, abilities, and behaviors.

CVI is a spectrum. This is one fact we can hang our pith helmets on. It’s our spectrum.

As I share where my daughter falls on this spectrum, I hope that other parents whose children are at different places on the spectrum can relate. Our children are complicated. I celebrate the children who got to Phase III with relative ease. I celebrate the infants in Phase I and their D-I-Y moms who are creating accessible universes for their little ones with PVC pipe and craft supplies. I celebrate the children who can speak and read just as I celebrate the classmate on E’s bus who shows me the toy he brings to school on the bus every day. CVI affects all of them. I think they are all magnificent human beings, period.

CVI is a spectrum. Where my daughter falls within this spectrum is that at 11, she is non-verbal (yet, loud as the dickens when she wants to be). She is mobile. After learning to walk with a walker at the age of 3, she eventually learned to walk independently within a year after that.

We went from Phase I to Phase II with me doing CVI accommodations at home. By the time she was 3 years old and in Phase II, it was time to find the right school environment for her. (See the post on Lego Trees to find out how much fun that was.)

We were seeing Dr. Roman-Lantzy every year. When we went back just after E turned 4, her CVI Range score had actually gone down from the prior year. Dr. Roman-Lantzy warned us that if we didn’t figure out how to communicate with her and help her use her vision, then she would develop behavior issues quickly.

That was a tough ride home.

Her visual impairment made attempts to learn communication systems very challenging. She did not see well enough to understand signs and lacked the fine motor ability to do them. I began to doubt whether or not she was able to understand and communicate. Despite my attempts to educate myself on how CVI affects a child’s education, I found myself doubting her abilities. (Doing the same thing I do not want her teachers to do.)

“Assume competence” is a popular phrase among therapists. Boy, I have tried. Some days I was not successful. Those were dark days.

This past year, after much trial and error (including much research to find the right speech therapist, a CVI consultant and thumb wrestling matches with school administrators in 3 different states), she has started to use a couple of signs and she is using some very basic communication devices. Finding a CVI consultant and working with an ABA team to use specific signs and pictures of actual objects in E’s life have opened up new possibilities for her. We’ve turned a corner this year; I finally see progress. As she learns to communicate, I can also see that she has things to tell me and that it is very frustrating not to be able to do so.

I know in my heart that if we had been able to get her in a program and with a teacher and staff who understood CVI, she would be at a higher level of communication than she is now. I did the very best I could to learn as quickly as possible. I did the best I could to bring CVI awareness and experts to the public schools we were in. I have to forgive myself because I know I have done the best I could with the time and resources I have had. I am still trying.

Okay, so now I need to tell you about the 5th graders who reminded me of the “help that helping’s all about.”

Over the past few years at E’s current school, I have been pushing for her to have more day-to-day involvement with her “typical” (sigh) peers. She is in an ID class (Intellectual Disabilities, to the uninitiated) with other children who are non-verbal. My point, for 3 years – at this school, has been, “How can we expect to learn any language if she spends the entire day with children who do not talk? How can she learn to interact – verbally or non-verbally – with other children if she never gets to spend any time with them?”

The responses I’ve received for the lack on inclusion have ranged from the uninspired “6th grade doesn’t do morning meeting.” Huh. Well, what about the other grades?

to the incorrect – “It’s a safety issue.” Huh. For whom? Isn’t that why we have aides? And, have you heard about IDEA, by chance?

to the mind boggling -“We do have inclusion opportunities. You just haven’t been here to see them.” Huh? And, I’m just hearing about them now after asking for almost 3 years? Do tell. I’m all ears.

But, this year – this year!

I picked up the inclusion fight right where we left off last year. I wanted her included in a class’ morning meeting time to interact with them everyday. I pushed for them to come up with different times for her to be with other children as well. She now attends music and recess with this class and others at different times during the week. It is so much better than what it was when we got here.

After all of the struggle and excuses from administrators, finally, she has a chance to get to know other students. For her to see them. For them to see her.

And, darn it all, if that isn’t when a group of 5th graders broke my heart wide open.

Apparently, some of the children in the 5th grade class took an interest in how E communicates. They watched her come in with her Step by Step button, and her personal story books (Pictello is the app. Check it out!) on her Ipad.

They started thinking.

Their thinking led to a powerpoint called E and The Issue On How To Communicate.

I can say (with only a little bias) that THIS IS THE BEST POWERPOINT of ALL TIME.

The 5th graders made a plan to create a device to help E communicate. The 5th graders made a presentation, people. They sent it to her teacher. She sent it to me. I needed to wring out my laptop after reading it.

I am going to share some of this presentation with you because it is THE BEST.

THE ISSUE

“We have been meeting with E for a few weeks now, so we know she has cerebral palsy, CVI, and mild autism. We all know she is happy, but wouldn’t it be nice for her to come home and to be able to say ‘I love you’ to her parents? After reading the book, Out of My Mind, about a girl with CP, we were determined to help E. We got together and came up with a device to help her communicate. We’d like her to be the first student we help. We know E has a special disorder called Cortical Visual Impairment that causes her brain not to be able to process what she sees. So, she uses her hearing to tell the difference between various people. Because of that, we focused on hearing and touch, rather than sight in the device. “

THE PLAN

“Don’t worry, we have a plan to make this work. (For once, I’m speechless.) We need to be able to teach E after we get to learn more about her, her abilities, and her struggles. We want to design the device based on E’s strengths and weaknesses, so once we have gotten the total price, we will have a fundraiser to create this life changing device. So, don’t worry about the cost we got it covered.” (Again, no words.)

One section of the presentation is images of devices and materials they are going to create or buy to make a contraption my daughter can use to communicate. Then, they want to teach her how to use it.

Yesterday, I went to pick up E for an afternoon therapy session. This 5th grade class happened to be lining up in the hall on the way to lunch.

A couple of the girls said, “Hi, E’s mom.”

I had the urge to hug the stuffing out of the whole group, but I didn’t want to scare them. So, I went with nonchalance. “Hi guys, I read your PowerPoint. It’s really impressive.”

A little girl with plastic Harry Potter glasses was passing by me. She stopped and said matter-of-factly, “Yeah, we thought it would be nice if E could come home and say, ‘Hi, Mama.'”

The simplicity of this statement took my breath away. I needed to give some kind of response. Sobbing clearly wasn’t an option. I clenched my jaw, tried to smile, and nodded.

She nodded politely and walked on to the cafeteria, swinging her lunchbox.

Whether or not, this device eventually works, the ideas behind it and the effort they have put in already have worked on me.

Some days people notice!

Some days I am floored by the grace and kindness that comes from unexpected places.

Some days I am reminded of the fact that children are my favorite people, period.

Their kind of help is the kind of help that helping’s all about.

Their open hearts and minds will be our saving grace.

Ok, CVI Moms, Where do we start? TEAMS and Trailblazing

October 11, 2017February 5, 2018 CVI Momifesto2 Comments

It dawned on me recently that CVI is bigger than I am.

In most of my research to understand what needs to happen at my daughter’s school so she will have ACCESS to her learning environment and will be taught by people who understand the effect CVI has on a child’s development, I keep running across the same word.

TEAM

There’s a lot to say around this. So, let’s start with a great resource for moms who do not know where to start.

http://tech.aph.org/cvi The American Printing House (APH) for the Blind has a great resource page on CVI for parents, teachers, and anyone who wants to learn more about the history of this condition and the ongoing efforts to improve services for children. There is a link called TEAMING that can help you get an idea about what your child’s team should look like.

http://tech.aph.org/cvi/?page_id=352 This page is under TEAMING. It describes a Daily Routines Matrix that give you a foundation to start from when working with your child’s team to make the activities of the day accessible. My only comment on this page is that when it refers to your vision teacher or your TVI, I would replace this with CVI Endorsed Teacher (preferably CVI Endorsed TVI, but, there are plenty of OTs, PTs, and other professionals becoming endorsed).

AND,

this is important,

at the meeting with the team you are putting together,

(because you are the mom and you are the quarterback of this team and they need to take you seriously because IDEA.

IDEA. The Individuals with Disabilities Education Act, for the uninitiated. If you are reading this, you are definitely initiated.

Welcome to our club! Your membership includes a complementary glow-in-the-dark decoder ring, a box of tissues, a supersize box of chocolate, and a gallon jar of aspirin to be delivered by Ryan Gosling, a mid-70’s Paul Newman, Beyonce, or the fantasy delivery person of your choice.)

Sorry, I got carried away – where was I?

Oh yes, at the meeting with the team you are putting together, you have every right to request a CVI Endorsed teacher.

It will sound weird.

You may be the first person in your school, county, state to do so.

There will be an awkward pause.

They will look at you funny.

When they do, you will wonder whether or not you are

1. crazy

2. asking too much.

You are neither.

You are fighting for your child’s quality of life. And, if that is not understood in your IEP, if you are not supported by the educational powers-that-be, then, hear it from me.

You are not asking too much. You are not crazy.

You are blazing a trail for your child and for other children.

I was the first person to ask for a CVI Endorsed Teacher in my girl’s school. We are still hammering out just what that means and what her team is supposed to look like, because we are learning this in real time. We are setting the precedents.

I was not the first person to ask for a CVI Endorsed Teacher in my county or state though. There are some kickass moms here who started this fight before I got here.

There are moms asking the same questions and beginning to ask for CVI Endorsed teachers all over the country. You can see it on the comments and questions on FB pages.

Remember: When you are thinking about your child in school, she will need a TEAM of people who understand CVI. You are a critical part of this TEAM. The concept of a team and the amount of training, mentoring, planning, and preparing of materials necessary for many children with CVI is a brand new idea to schools.

They will NOT accept it after hearing it from you the first time. They just will not.

We are asking them for more resources and more funding than they have budgeted. They do not understand why these modifications are so important.

So, we learn what our children need. We learn to be very specific. We have to prepare ourselves. All the while, we are educating our schools, our principals, our teachers of the visually impaired. We are teaching them about preparation, determination, hard work and hope.

In addition to being a CVI Mom and all of the hats that job includes, add the Pith helmet of a trailblazer to the list.

Pith helmet And, if I do say so myself, it looks spectacular on you.