Moms on Monday #7 / Gunjan from PA

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

This morning, we have the pleasure of hearing from Krish’s mom, Gunjan.  Gunjan has been a force in advancing the work of the  Pediatric Cortical Visual Impairment Society and in advocating to raise awareness about CVI . At last year’s PCVI conference, she and MaryAnne Roberto, Perkins-Roman CVI Endorsed TVI, gave a presentation entitled Partners on the Journey:  A TVI and Family’s CVI Experience from Birth to Age 3.   You can find this presentation as a webinar on the Perkins E-Learning site : http://www.perkinselearning.org/videos/webinar/partners-journey-cvi-experience-birth-age-3

Gunjan’s family recently hosted a painting fundraiser for the PCVI Society and raised $1,500.  Here are Gunjan and MaryAnne at the fundraiser.

gunjan and maryanne”

Gunjan’s determination is proof that “If every parent could make an effort to raise awareness about CVI, to fundraise for the PCVI Society, as well as to challenge their teams to hone their CVI skills, the world might be a better place for our kids.”

Introduction: Gunjan, Krish, 5, Pennsylvania

About your child:  Krishy loves to dance, specifically, what I would term as interpretive dance, because he moves with music so well.  He loves to watch Super Mario YouTube videos, in other words, watching other people play video games on YouTube. He “practices” playing the games on his IPad by moving his finger, as if he is controlling the game, not the player on YouTube. He loves amusement park rides and most of all, he LOVES playing with his older sister and twin brother.  As a family, we do typical family things, like no-pants dance party and going to the playground.

We rarely go to the movies. (We saw Coco yesterday.  Krish doesn’t have the core strength to hold the foldable seat down, so he kept getting smooshed in the seat, besides the vision issues, of course, and the cost of taking a family of 5 to the movies!)  We definitely avoid large crowds, super-noisy places and anything too physically strenuous (for me or Krish, ha ha) to avoid sensory overload. 

When did you first learn about CVI? I learned about CVI the first day that our soon-to-be early intervention vision teacher came to our home for a consult when Krish was around 7 months old.  I had told our physical therapist that Krish wasn’t looking at me. 

How were you given the diagnosis?  We had an amazing teacher of the visually impaired, the famous MaryAnne Roberto, who suspected the diagnosis, and guided us to Neuro-ophthalmology, the Low Vision Clinic, Ophthalmology, and Dr. Roman-Lantzy. 

Our Ophthalmologist gave us the diagnosis, even though she didn’t completely understand CVI.  She did recognize that she didn’t understand.  

Does your child have other diagnoses you’d like to mention?  Krish is a former 26 week preemie twin with failure to thrive, mild hypotonic cerebral palsy, chronic lung disease and GERD.

How is/was your child’s early intervention experience with regard to CVI?  (Were your providers knowledgeable?  Were they open to learning?)  We had an AMAZING early intervention experience.  Most of our team members were open to MaryAnne’s suggestions of how to improve his PT, OT, feeding, etc. sessions with CVI interventions. (I fired the one who didn’t get it!)  MaryAnne had consultation time to work interdisciplinary.  We were able to get services for vision without a diagnosis of CVI. 

How is CVI being addressed in your child’s school setting?  Krish is in his 2nd year of Pre-Kindergarten.  I wanted him to get extra time to start learning sight words and other kindergarten skills.  He is in a typical classroom.  Both his current TVI and classroom teacher have demonstrated time and again their commitment to making him successful.  We are starting to use the iPad as his primary learning tool in school to adapt books, etc.  He has an occupational therapist who is also an assistive technology consultant (winner, winner, chicken dinner!!) She is helping to prepare him on how to use the iPad independently for learning and to use the best apps. 

We recently had a meeting with Dr. Roman-Lantzy and have decided to overhaul Krish’s IEP to include a 1-to-1 aide, so that ALL his materials can be adapted. 

What I learned was, just because he can do it, doesn’t mean he should.   He can look at a book, he can color, he can look up at a calendar on a complex wall, but doing all the things fatigues his vision and he becomes slower and slower at visual processing.  He is quick to fatigue both visually and physically.  If we create a CVI schedule and adapt all his materials, he will not fatigue as quickly and can absorb more information. 

What do you know now that you wish you had known at the beginning of your journey as Krish’s mom? 

In the beginning of this whole process, I wish I could have seen who he has become today. 

I prayed and wished he would walk and talk and see, but it was hard to have hope. 

I was tired ALL THE TIME. 

Also, the CVI resources that exist on the Internet now are amazing.  Even just 5 years ago, I couldn’t find the quality information available now. 

I would tell a mom whose child was recently diagnosed that whenever you are down-trodden and feel like you can’t verbally describe another illustration from a book or talk about the salient features of a hippo, remember that the vision of children with CVI, especially those who start with appropriate interventions at a young age, does IMPROVE! 

Additionally, if your child’s team doesn’t understand CVI, if the IEP doesn’t have CVI strategies that are specific to where your child’s vision is on the CVI Range, if the people who are teaching your child are resistant to learning about CVI,  GET A NEW TEAM!  Do whatever it takes to fight for your child’s right to learn to see. 

What would you like for people who have never heard of CVI to know?  If you have never heard of CVI, I would tell you it is more common than anyone could imagine.  Every child with CVI looks different.  It is a diagnosis that crosses medical diagnoses. 

Hopes and dreams?  Anything else you’d like to add?  Attending the PCVI Society Conference changed my life.  It was inspiring to meet families, educators, and medical providers who are motivated to improve the lives of a child like Krish.  It made me feel like I could do something to advance the cause of CVI.  Also, having Dr. Roman-Lantzy and MaryAnne Roberto as part of our team is like having unicorn glitter in my pocket, just invaluable.  Lastly, if every parent could make an effort to raise awareness about CVI and fundraise for the PCVI Society, as well as challenge their teams to hone their CVI skills, the world might be a better place for our kids.  

Thank you Gunjan and Krish!  May we all find unicorn glitter in our pocket!

 

 

Adventures in Advocacy / NE AER / Part Two of Three

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Hello Fellow Families of Delightful, Sometimes Exasperating Children Who Happen to Have CVI and Who Sometimes Knee You in the Neck,
Why yes, maybe E did wake up at 4:30 this morning and kneed me in the neck while climbing into my bed. Once settled comfortably (for her) on my chest, she leaned over to kiss my forehead about a dozen times. It was pitch black, so let’s just say she missed a few times. In my semi-consciousness, I dreamed I was being water boarded.

This is an accurate description of the power dynamic in our relationship.

Moving on.

I promised more information from NE AER.  This post turned into a doozy.  So, I am splitting it in two.
To recap: There were 6 presentations about CVI at this conference! This is a big deal. Bravo to the Co-Chairs of the 2017 NE/AER Program Committee, Sharon Marie and Martha Delaney for their development of this year’s CVI track.
(You may want to reach out to the folks planning your area’s next AER conference. You could ask how many presentations they will be having on Cortical Visual Impairment. Just a thought.)
I was present for Peg Palmer’s presentation “Assessing children with CVI using Dr. Roman-Lantzy’s CVI Range,” Dr. Christine Roman-Lantzy’s follow up discussion following her “Implications of CVI in the Development of Literacy, Language, and Social Skills” presentation, and Ellen Mazel‘s presentation, “Serving our students with CVI: Learning Assessments and Intervention Strategies.”

Here are some of my takeaways from this conference:

The Perkins-Roman CVI Range endorsement is a necessary starting point and here’s why.  (Good to know for future stare-downs with school administrators about the importance of proper training for the teachers who work with our children.)

Right off the bat, Dr. Roman-Lantzy asked the discussion group if any of them were unsure about the CVI Range endorsement.
As a parent, I was surprised by this question. I’m just glad an endorsement exists  to give teachers the skills they need to improve educational outcomes for our children. I was more surprised when a few of the teachers raised their hands.

Dr. Roman-Lantzy asked them why they had reservations.
One of the teachers explained that she knew several experienced TVI who did great work with children with CVI but did not have the endorsement. Some teachers did not see the point of the endorsement. Some thought the CVI Range endorsement was extra work – more hoops to jump through at their own expense- for teachers who already had substantial experience working with children with CVI.
Dr. Roman-Lantzy acknowledged their doubts and agreed that there are experienced TVI who are more than capable of working with children with CVI. She mentioned that she herself is not endorsed.  (My mind was blown.)
Her point – an important one – was that while CVI has been discussed over the years within the field of the education of children with vision loss, there has yet to be a rigorous, commonly accepted standard of training for teachers to work with children with CVI.

(This leads me to paraphrase Ellen Mazel. My apologies to Ellen Mazel. )

The 2 most dangerous teachers Ellen Mazel has ever met are
1. The TVI who has never heard of CVI
2. The TVI who has been to one workshop / conference on CVI.
Boy, did that resonate with me. I wonder how many of us have had a teacher tell us – “Oh, I know CVI. I took a workshop once.”
Surely, it’s not just me. I bet I’d recognize the slight indentation on your forehead where you banged your head on the table after hearing these words. It’s okay. I’ve got one too.

We have been affirmed by the CVI Teacher herself!

This was worth the whole trip to Vermont, including losing my driver’s license, and, the resulting extra security patdowns to get home.
Now some history on the development of the CVI Range endorsement.

(Use this when you begin advocating for your child by telling your school system that a CVI Range endorsed educator is a requirement for your child’s ACCESS to her education.)
The lack of a standard educational protocol for training TVI to work with children with CVI has been a concern for Dr. Roman-Lantzy for years. In recent years, she went to the associations that recommend topics of study for university TVI preparation programs.

She asked them to recommend that CVI be included, to no avail.

Then, she approached Perkins School for the Blind.

Perkins met the challenge of training teachers to educate children with the #1 pediatric visual impairment in America and
First World Countries (and tomorrow and 9 months from now and 2 years from now).

It’s not going away, folks.

To address the growing need, Dr. Roman-Lantzy and Perkins collaborated to create the endorsement and other classes surrounding specific aspects of CVI.
For their willingness to address the issue of CVI, this CVI mom applauds Perkins and its President and CEO, Dave Power. Dave Power is also the father of a son with dual sensory impairments. It does not surprise me that a parent of a special needs child made the decision to move the CVI Range endorsement forward.
During the discussion session, Dr. Roman-Lantzy explained that “no one is getting rich off of the CVI Range endorsement.” There are administrative costs to running the classes which are offset by the fees.
She further explained that the creation of the CVI Range endorsement was a way to acknowledge that every endorsee has the same foundation of knowledge about CVI and has the ability to use the CVI Range accurately and effectively.  The endorsement means you know how to use the CVI range, however, knowing how to address the unique learning needs of every child identified with CVI is an ongoing learning process. CVI is a complex diagnosis. It covers a wide spectrum of children with varied abilities. Research is still unfolding.

Learning all things CVI is happening for all of us in real time.
Hearing this discussion, I can understand why an overworked Teacher of the Visually Impaired with too many children on her caseload and fewer available resources would be dubious about extra training for a “new” visual impairment.

She does not have extra time. She is being pulled in too many directions. Depending on the state and depending on the day, she may be expected to provide early intervention in the morning for an infant with albinism in a neighboring county; at lunchtime, she may be pulled into an IEP meeting for a 4th grader with nystagmus; in the afternoon, she may be transcribing civics homework into braille for a high school senior who is blind.
Changes in our educational system to give TVI fewer caseloads, more resources, more extensive professional development, and the time it requires to do their job well need to happen yesterday.
It is simply too much to ask these teachers to do more.

BUT,

nothing about having a child with Cortical Visual Impairment is simple. 
Until we can get universities to add CVI to their teacher preparation programs

AND,
until we can make sweeping changes in the system of educating children with vision loss

We have to ask.

Our children can’t wait. (Ellen Mazel again, everyone!)

Yet, they are waiting.

Every day a child with CVI sits in a classroom without appropriate accommodations – without ACCESS – to her education, she is losing learning time.

The awareness of time lost is the motor that drives CVI parents to ask overworked teachers to learn more about CVI.  It is why we ask them to help us give our children access.

To wrap up this post, I will repeat what I said to the TVI and COMS in my presentation.

We need you to believe that our children can learn.  

We don’t expect you to have all the answers.  

Help us find the answers.  

We have to start somewhere.  

Thanks to these formidable ladies, we have a starting point.  

 

CVI ladies

Adventures in Advocacy / NE AER / Ellen Mazel / Standing Room Only, Part 1

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standing room onlyThe Northeast AER Conference in Burlington, Vermont wrapped up Friday, November 17th.

Thursday, it was standing room only for Ellen Cadigan Mazel, M. Ed. CTVI. Ellen is the CVI Program Manager for the Perkins School for the Blind. (Her blog, CVI Teacher at wordpress.com is required reading for CVI parents, TVI and anyone who cares about a child with CVI.)

The information and discussions that arose from the presentations at NE AER should be another post topic.  I will do that one next.

For now, I will share briefly what I experienced and what I learned from discussions in and around the presentations.

First, it made my mom’s heart glad to see so much interest in CVI.  The fact that Ellen’s presentation was standing room only and Peg Palmer’s would have been if it had been in a smaller room was encouraging.

Many TVI, COMS, and administrators showed up to learn more about the condition that affects our children’s access to the world.

There were 6 presentations on Cortical Visual Impairment during the 3 day event.  Dr. Christine Roman-Lantzy was there!  I was present for an eye-opening discussion session. (Saved for Part 2) 

(I couldn’t stay for Matt Tietjen’s presentation on What’s the Complexity, but I really wanted to.  I highly recommend parents and teachers familiarize themselves with his work around complexity and literacy.  It is a perspective we all need to understand to help our children make progress visually and to understand what they are seeing. Check out the Perkins CVI Hub for the next class or webinar.)

This amount of information and discussion about CVI at an AER (the Association for the Education and Rehabilitation of the Blind and Visually Impaired) conference was unprecedented.

It would be great to see this kind of interest at every 2018 AER conference in every state or region of the United States and Canada.

Wouldn’t it? 

To share this opinion, you can find your state’s AER at http://www.aerbvi.org.

Find the president of your state’s AER and send her/him an email about your child, about CVI, and about the need for more teachers trained in understanding CVI.

You could ask them how we as parents can support our TVI in this training.  You could ask them what we need to do help make progress in getting CVI recognized as the #1 pediatric visual impairment in First World Countries. 

I mean, since it is.

Also, you can send the email to these folks too:

AER’s Executive Director, Lou Tutt, lou@aerbvi.org 

AER’s Chair of the Personnel Preparation Committee, Olga Overbury at olga.overbury@umontreal.ca

AER’s Chair of the (provisional?) Neurological Visual Impairment Committee, Susan Sullivan at ssullivan@aph.org 

Since I had given my presentation to essentially the same audience at Peg Palmer’s presentation the day before, I shared other parent stories from the previous post where I asked you what you would say to a room filled with TVI.

This is what I shared:

From Kathryne in LA:  “My theory on the lack of interest in addressing outcomes for CVI is that our kids have all been lumped as multiple disabilities.  Incompetence is assumed. That is not to say that blind children can’t have multiple disabilities, but CVI is more prevalent in the multiple disabilities class.  Since it’s more work other therapists and teachers ignore it. 

Addressing my son’s vision has given him more improvement in all areas.  More than any other therapy.  We are now starting to see improvements in other areas now that vision has improved.  

She asked me to “point out that many of the other skills will follow if vision is improved.” 

 

From Anna in OH:  “Show care, compassion and patience.  If someone is asking for a CVI Endorsed provider, there is a reason.  

The good news about CVI is that we can do something about it.  Please accept the challenge to learn more about our children.  It will be worth it!

Please listen to the parents’ concerns and ideas.  Their children are their life, their whole world. Parents do know what they are talking about.

A passionate/trained/knowledgeable/driven CVI Endorsed provider is worth their weight in gold.” 

Then, I shared a couple of stories about the frustrations parents face when looking for appropriate educational services for our children.

One mom called her local university teacher preparation program for teachers of the visually impaired and asked if CVI was covered in the curriculum.  The head of the program told her no.  When she asked why, he said, “We can’t be all things to all people.” 

One mom called her state’s School for the Blind when her son was identified as having Cortical Visual Impairment.  When she told them her child’s diagnosis, she was told, “We don’t serve those kids here.  It’s too expensive to train our teachers in CVI.”  

If these 2 stories frustrate you, they should.  We have a lot of work to do to raise awareness and to raise our expectations of how our children are taught in their educational placements.

There will be more to come on this.

And, I wore this shirt. t-shirt

 

Brenda, the kickass mom from Seattle and the brains behind the blog and FB page, Start Seeing CVI,  made them and some proceeds of sales go the growing Pediatric Cortical Visual Impairment Society.

What a lovely holiday gift, if I do say so myself!   https://startseeingcvi.com/?s=T-shirt

More to come to wrap up NE AER.

Until then, Happy Thanksgiving!  I continue to be grateful for other parents who remind me that we in this together.

Because we are.

 

 

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

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

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

This is a great turnout.

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

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

It is refreshing and maddening at the same time.

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

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

Exactly what we need.

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

I asked them three things:

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

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

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

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

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

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

Now we know.

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

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

Executive Director, Louis Tutt – lou@aerbvi.org

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

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

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

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

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

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

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

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

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

3. To seek out more training

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

So, to sweeten the deal, I offered pie.

Really, it’s all I’ve got. me-and-peg-e1510842788984.png

 

Adventures in Advocacy: Never Underestimate the Power of Pie

CVI Momifesto1 Comment

Hello fellow parents of glorious children who happen to have CVI,

Let’s talk a little advocacy with a dash of history, shall we?

When CVI Momifesto began in September, Dr. Sandra Newcomb, a Perkins-Roman Endorsed Consultant and Technical Assistance and Education Specialist at Connections Beyond Sight and Sound at the University of Maryland, left the following comment:

“Historically, it has always been parents that brought about change.  Parents were behind IDEA (Individuals with Disabilities Education Act, a law that makes available a free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children) behind all the change in service delivery for autism, and the list goes on….

Not that you as parents need one more responsibility, but that is where the power is in special education.

Think about it.

In the not too distant past, children with special needs were not educated in schools.  They were not educated, period.  Parents were encouraged to “put away” their children and to continue with their lives.  “Throw away” is more like it if you look at the soul crushing history of institutions in America.

Parents went against the advice of medical experts and brought their children home.  Parents came together and began programs to teach their children.  Parents approached their legislators demanding that their children had the same right to a free and appropriate education as any other child.

We are the power that made special education happen. 

The fact that we have an IDEA to refer to and resources to look for (even if they are hard to find) is because of the parents who came before us.

Here’s what we, as parents of children with vision loss, need to understand as we blaze our trail.

Children with vision loss are considered a “low incidence” population. 

If you have had any experience trying to get a teacher with expertise in CVI in a public school district, you have learned that it is a challenge to get attention (and resources, funding, staffing…) for your child with this “low incidence” diagnosis.  You may find yourself in an IEP meeting or sitting across from a school administrator and hear those words “low incidence.”  Then, you may find yourself walking out of the meeting without getting anything you requested because “low incidence.”

Can I just say how much I dislike the term “low incidence”?

Some school systems and state legislatures have a tendency to forget that these populations of children need resources and funding too.

Here are a couple of thoughts I have about this.

#1.  There is no comprehensive, national system of data collection keeping track of children with CVI.  Some states have “soft” systems like a registry of children with certain medical diagnoses, but, doctors and hospitals are not required to use it.  Also, many state registries do not list Cortical Visual Impairment (or other pediatric visual impairments).

How can you keep track of a diagnosis if it is not even a box you can check off?

To school systems and state and federal funding streams, CVI is a low incidence population within a low incidence population.  Read: lowest possible priority.

But, if no one is counting, no one really knows the true number of children with Cortical Visual Impairment.  Often, children with CVI get put in a category called “multiple disabilities” and the vision loss goes unrecorded.

So, “low incidence,” my Aunt Fanny.  If you aren’t counting, then I call foul.

Remember, it is common knowledge that CVI is the #1 pediatric visual impairment in developed countries.

#2.   If children with vision loss are a low incidence population, then, to be heard, we, the parents, have to be loud, focused, and repetitive.  (Jessica M. said in her Moms on Monday post that she had become “a broken record.”  That’s what I feel like too.)

We need to start talking, often and loudly to certain groups of professionals.

We need to talk to teacher training programs to tell them we need more teachers who have been trained to work with children with CVI.

We need to talk to ophthalmologists to get CVI identified early and accurately.

We need to talk to legislators to change existing laws to require more specialized training (The Cogswell Macy Act needs your support!.)

We live in a world of constant distractions.  It is hard to get people galvanized around a single issue.

As you read this sentence, you have received 10 new posts on Facebook, 3 tweets, 15 emails, a few texts, your dog is pacing by the door in need of a walk, your child needs a new diaper, and your boss wants that report yesterday.  Am I wrong?

Every waking minute it seems as though we are bombarded with a parade of worthy causes and the resulting impulse to respond to them.

How can we start highlighting our worthy cause in today’s frantic world of modern media?

Here is something old school I’m doing every chance I get because something has GOT to give.

Talk to future teachers

From my experience, folks do not become special educators and/or teachers of the visually impaired to get rich quick.  They have a genuine desire to improve the lives of very vulnerable children.  They work hard.  There are not enough of them.  They may not have access to enough resources to do what they want to do in their classroom.

They care.

Wherever I live, I reach out to the special education department of the local university. In Bloomington, Indiana, I spoke to special education students in Dr. Melissa Keller’s class at Indiana University.  In Maryland, I spoke to students in Dr. Sandra Newcomb’s class.

Most recently, in Virginia, I reached out to Dr. Kim Avila, the head of the Visual Impairment Consortium, at George Mason University.  She has been kind enough to allow me to speak to her class of future teachers of the visually impaired for 2 years in a row.

On Monday, I joined a conference call to speak to this year’s group of future TVI on the first day of their unit on Cortical Visual Impairment.  The course is offered as online learning.  One of the students lives in Alaska and was compelled to become a TVI because of the number of children she is seeing in Early Intervention with CVI.  (She is my new hero.)

I told them about E, where she began and where she is now.  I told them about how challenging it has been to find teachers who had heard about Cortical Visual Impairment or what to do to help children with CVI learn.  I told them that teacher preparation programs for TVI do not typically include Cortical Visual Impairment in their curricula.

Then, I mentioned the Perkins-Roman CVI Range Endorsement.   I asked them to consider becoming endorsed because they will have children with CVI on their caseload and they need to be prepared for them.

Because, why not?  How is anything going to change if we do not start asking for things to change?  We have to start a conversation to raise awareness.  If these future teachers do not know that they will experience children with CVI in their classrooms, then they will not know to look for specialized training.

To seal the deal, I offered a homemade pie to anyone in the class who becomes CVI endorsed.

Even to the lovely lady in Alaska.

I would gladly freeze dry and Fed Ex a pie to Alaska, to the North Pole even, if it would increase the number of teachers who can help children with CVI have access to their environment.  So far, no one has taken me up on it.

But, the offer stands.

I do not kid about pie.

Future educators need to hear your experiences.  And, their professors would love to have your input in their classes.  You could research special education classes or TVI preparation classes at a university near you.  You could write a professor and say, “Hey, I’m the parent of a child with Cortical Visual Impairment.  I would love the chance to share our experiences with your class.”

If you do, tell CVI Momifesto how it went!

There might be a pie in it for you.

 

 

pie

 

 

 

 

 

Calling CVI Moms: The Conversation Continues

CVI Momifesto2 Comments

sorrows borne

Hello Fellows Moms, Dads, and Folks who love a child with CVI,

When reading sites about CVI, I see plenty of conversation about CVI among certain researchers, doctors, and teachers. It is happening more now than ever.  This is a good thing.

But, where are the stories of the families?  Of the children themselves?  Where are the stories of the people whose lives are affected by CVI 24 hours a day? 

I love the quote,

“All sorrows can be borne if you put them into a story or tell a story about them.”

It is attributed to the author, Karen Blixen, who wrote under the name Isak Dinesen.  (She knew a thing or two about sorrow.)

If you belong to this community of families, it is highly likely you and your family have withstood a significant amount of sorrow on this journey.

Children with Cortical Visual Impairment (Cerebral Visual Impairment) are children who have endured much at a young age.  Some were premature and suffered a brain bleed.  Some had a stroke in-utero or soon after birth.  Some had hypoxia (not enough oxygen in-utero or during birth).  Some have brains with atypical structures.   Some have seizures.  Some have metabolic issues.  Some have genetic syndromes.  Some children acquire CVI at a later time after a traumatic brain injury.

Some children have any combination of the above.

The conditions which cause CVI are complicated and vary widely from child to child.

As the parents of these children, we bear witness to what our children endure.  There is sorrow when you see your child suffer.  There is frustration, and certainly, sorrow in navigating what your child needs to learn and to thrive. It can be so isolating and confusing.

Stories can help us bear the sorrow.  Stories can help us navigate the unfamiliar territory of having children with a complicated neurological visual impairment.  Stories will encourage more medical and education professionals to recognize and understand CVI.

We need your stories.

Jessica Marquardt from North Carolina was the first Mom on Monday.  It is an honor to share her story.

We need to hear your story.  It’s easy.  It’s important!

Read the questions below.

Answer the ones you would like to answer.

Submit them to info@cvimomifesto.com.

Parent stories will be posted on Mondays.

Moms on Mondays

Introduction:  Your first name, your child’s first name and age, the state you live in

(If you would prefer to use an initial instead of your name, fine!  If you’d like to share a picture, great!)

About your child:  What does she like to do?  What makes him laugh?  What are her favorite activities?  What do you like to do as family?

When did you first learn about CVI?

How were you given the diagnosis?

Does your child have other diagnoses you’d like to mention?  (Totally up to you)

How is/was your child’s Early Intervention experience with regard to CVI? (Were your providers knowledgeable? Were they open to learning?)

How is CVI being addressed in your child’s school setting? (If applicable.)

What do you know now that you wish you had known at the beginning of your journey as your child’s mom? 

What would you tell a mother whose child has just been identified as having CVI?

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

Hopes and dreams?  Anything else you’d like to add?  

Looking forward to your stories and meeting your beautiful children!

 

 

 

 

 

 

 

 

 

 

 

Name that Neurological Visual Impairment & Love the Hub

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Hello you good looking fellow parents of glorious children who happen to have CVI!

(Only one cup of coffee so far.  Why do you ask?)

I have been researching resources on Cortical Visual Impairment for the website of the up and coming non-profit organization, the Pediatric Cortical Visual Impairment Society (PCVI).

Often, when researching, information will come up about Cerebral Visual Impairment.   Generally speaking, Cerebral Visual Impairment is what we in the U.S. call Cortical Visual Impairment or, even, Cerebral/Cortical VI, aka C/CVI.  OK?  Confused yet?

For decades, researchers, teachers, and doctors on different continents have been debating what title to use to most accurately describe this neurologically based visual condition.

Here’s is one random mom’s perspective:  Whether you prefer “Cerebral” or “Cortical” should not hinder the progress that needs to be made in getting this condition recognized, diagnosed, and addressed in the classroom.

I would happily call CVI, “Shirley,” “Joe,” or “Rumpelstiltskin” if it meant that schools understood that they need to have endorsed teachers and a team approach to working with children with this unique visual impairment.

But I digress.  We were talking about resources.  There is so much good information out there in cyberspace.  There is also a great deal of outdated information.  Much more than when I began looking 10 years ago.

Sorting through it is time consuming.  And, we all know how much extra time we have, am I right?

Here’s a timesaver and an excellent resource:  the CVI Hub on the website for Perkins School for the Blind.

http://www.perkinselearning.org/cvi

Perkins “gets” CVI and understands that more progress in diagnosing and educating children with CVI needs to happen YESTERDAY.

I particularly appreciate Perkins’ eagerness to share parent experiences and parent/teacher experiences.

As we have mentioned before, there are fellow CVI parents who are moving mountains and raising awareness on behalf of their children.  Their stories are important for the rest of us.  Their successes and their challenges give us greater perspective about our own experiences.

Here are 3 resources on the Hub that have come directly from CVI parents (There are plenty more, as well as a wealth of information from teachers, doctors, and researchers).

1. Partners on the Journey:  A TVI and Family’s CVI Experience from Birth to Age 3. 

A dedicated and fierce CVI Mom, Gunjan Rastogi-Wilson, and her family’s CVI Endorsed TVI, the incomparable MaryAnne Roberto, recently did a webinar for the CVI Hub.  This webinar is a great resource for parents at the beginning of their CVI journey.  You will find it at http://www.perkinselearning.org/videos/webinar/journey-cvi-experience-birth.

2. Accessible Ipad Apps:  Eric Jerman 

Eric Jerman is a CVI Dad who received his master’s degree in Education for Orientation and Mobility from UMass. He has collected a list of over 200 iPad apps and has organized them into four categories.  1. Cause and Effect   2.  Digital Books for Interactive Stories  3. Music 4. Communication

“My son can’t see five feet beyond him, so I bring the world to him using the IPad.”

I, for one, am so glad he is sharing his knowledge to help me bring the world to my daughter.

http://www.perkinselearning.org/technology/posts/accessible-ipad

3.  Talking points for school districts

YES, school districts!

When you are debating with your local school system about the need for CVI Endorsed Teachers, refer to the CVI Hub site for information you can take to your next IEP meeting.

On the Hub site for School Districts, you will find the following quote:

“Perkins’ reputation in the field is unparalleled.  When my staff required professional development on working with students with CVI, I knew I could trust the experts at Perkins.”  — Irene M. Meier, Ph.D., Director of Special Education at Fairfax County Public Schools, Falls Church, Virginia

The Fairfax County Public School System has a national reputation for excellence.  FCPS has enrolled several teachers in the CVI Endorsement and is training teachers, therapists, and aides in Deaf-Blind Modules.

This training is happending because a parent (guess who?) kept bringing in research articles, reports from Dr. Roman and Dr. Sandy Newcomb, and statements on CVI from the American Printing House for the Blind and the American Foundation for the Blind.  It took the better part of 3 years to get momentum going, but there is momentum.

If other school systems are seeking out more training on Cortical Visual Impairment, why isn’t yours?

Fair question, don’t you think?

 

“CVI Moms are the busiest people I know”…and THIS IS WHY

CVI Momifesto5 Comments

I had quite the action plan this week and I learned stuff.

I learned that if you are up late typing a blog post,  you will fall asleep.  You will delete the nearly finished post when your head bobs, you jerk awake, and your hand slaps the keyboard. Then, groggy and irritated, I learned that when you spend five minutes clicking refresh in the hope that the words will reappear, they will not.

This was not part of my action plan.  Just thought you should know.

I haven’t given up on my action plan, but, the learning lesson with a blog post reminded me that CVI moms are often trying to cram more into a 24 hour day than will comfortably fit.  It’s like the day is a pair of Spanx and we have to fit the elephant in the room into those Spanx.

Every day.

It’s not pretty.  There is chafing.  But, it gets done.

Mostly.  There may be some unsightly bulges and an enraged pachyderm, but, hey, nothing’s perfect.

(I just used the word “Spanx” in a post about vision loss.   I’m thinking this is a first.) 

Dr. Christine Roman-Lantzy often says that CVI Moms are the busiest people she knows. She says this when the need for more CVI endorsed teachers, policy changes, and basic awareness about CVI is inevitably brought up in a presentation.

CVI Moms are often the mothers of children with multiple diagnoses.  We are juggling medical and educational needs while attempting to maintain families, jobs, and, (oh, who am I kidding?) – an identity of our own.   I am mostly failing at all of the above.  And, I have forgotten my middle name.

This week, I have not been particularly successful.  My patience is worn thin.  I speak in short, rushed sentences.  I am behind on making the adapted experience books I promised I would make for E’s classroom.  My dining room table is the insurance/invoice/bill station.  I owe return calls to therapists, the genetic counselor, the insurance case manager, to name a few. I may have walked/fed the dog.  Maybe.  My couch is covered in pictures, more pictures, Velcro, (So. Much. Velcro.), glue sticks, bare books (www.barebooks.com – You need these to make simpler book versions of other books, or of pictures of objects that are meaningful and motivating.) 

This week I was able to correspond with some other CVI moms about some advocacy and fundraising items in the works.  They are getting it done.  They are managing their jobs, their families, and their children’s IEPs.  They are doing the legwork teaching their schools about what children with CVI need.  They are training the educational staff. They are demanding more educational staff.  They are adapting materials.  All of these activities are full time jobs on top of their full time jobs.

And, still, when asked to do something that will help other families like ours, they say “yes.”

They understand that change will come only when we work together.

There will be chafing, however, it gets done.

In the past, relatives have asked me as they coolly examine my never-ending stacks of paper and pictures, my bed head and permanently furrowed eyebrow, “Why do you try so hard?”  At first, I stumbled over my words because I was so surprised by the question.  It seemed so obvious to me.  And, then, in their presence, I felt so alone.

I thought, “No one should ever have to feel this alone.”  I’ve thought that a lot over the past decade.

This is why a community is so important.  The CVI Moms I know are fierce, loving, dedicated, and resolute.  They are some of the best people I will ever know.  Their determination and courage gives me heart when I lose it from time to time. They remind me that I am not alone.  They remind me why we try so hard.

THIS IS WHY.

 

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This post and life got the better of me this week because I spend a lot of time advocating for my daughter’s quality of life.

And, then, I don’t feel so unsuccessful.

“It is what it is.” I wonder.

CVI Momifesto1 Comment

“It is what it is.”  A dedicated TVI with many years of experience said this to me earlier this morning.

This is not the post I had planned for today.  I planned to follow up with more examples of incidental learning, the kind of effortless learning typically sighted people take for granted.  The kind of learning not available to children with vision loss.

It bears repeating:  Children with Cortical Visual Impairment are NOT incidental learners.  This phrase may become my first tattoo.

Take this critical piece of knowledge with you when you begin the ongoing conversation with schools about how to teach you children.  It has been a real challenge to get this point across in every school my daughter has attended.  I wish I had known how to explain incidental learning much sooner.

My secret goal is for everyone who knows me to get to the point that, when I begin to say (maybe a little self righteously),“Have you ever heard of incid…”

They will cut me off with an exasperated sigh.  “Incidental learning. Yes. Good grief. We know.  WE KNOW. Can we please, for once, finish a pizza without discussing how typically sighted people effortlessly process information?”

Then, with a satisfied smile and a mouth full of cheesy pepperoni, my work here will be done.

That was the plan for this post.

But, then this morning, I participated in a conference call between the educational team from my daughter’s school and the staff at our state’s DeafBlind Project.  (There are federally funded DeafBlind projects in every state.  The DeafBlind community has been very receptive to the CVI community.  They have the expertise in teaching children with sensory loss that is often missing in general Special Education programs.  If you are not satisfied with how your child is being taught, ask about the DeafBlind Project in your state.  You can find it here – https://nationaldb.org)  

The conference call was a way for the educators at the DeafBlind Project to offer training and coaching to my daughter’s classroom teacher and her aides (sometimes aides get overlooked, but they often spend more time with the child than the teacher). I will go into more detail about the National Center on Deaf-Blindness and State Projects in later posts.

After the call, our TVI wanted to catch up on my daughter’s progress this summer. She told me about the materials and accommodations she made at the end of last year and into ESY (Extended School Year) for my girl. She explained how she had lobbied for more time in the classroom and more training for everyone.  She was actually preparing to leave early for a family emergency, but, she made sure she came for this conference call.

She wanted me to know that she has been giving this school, this classroom, my daughter, everything she can.

“But, you know,” she smiled sadly at me, “it is what it is.”

I do know.

What it is  is  Teachers of the Visually Impaired working with caseloads so large, and in so many schools, that they struggle to meet the time allotments in each student’s IEP.  TVI who can only provide consultation, at best seeing students 15, 30, 45 minutes a week.  At worst 15, 30, 45 minutes a month. (For students whose vision loss affects their access to their environment every waking minute of their day.)  TVI who, in some states, are expected to provide Early Intervention as well as in-school consultation for students through high-school. (How effective would you be if you had to braille a high school senior’s Geometry homework, then, drive to the next county to show a new mother how to interact with her baby with low vision?  How would the average Kindergarten teacher feel about taking over for a Calculus teacher and visa versa?  Different, equally important, sets of skills.) 

This is what it is.  This is how it is. It is already not enough for children with ocular forms of vision loss.

AND, Cortical Visual Impairment is a new challenge for TVI. They did not get the training on CVI in their teacher training programs. Many of them are recognizing this challenge.  They are asking for more training.  When school districts are unwilling to provide it, they are seeking it out themselves.  They are paying to get themselves the skills to teach our children, to help the world make sense to our children.

I applaud the Teachers of the Visually Impaired who are taking the initiative to learn about CVI and to advocate for children with CVI in their classrooms, often to no avail.  (Don’t give up!  You aren’t alone! These kids matter! I will personally bake you a pie and hug the stuffing out of you if I ever get the chance.)

Today was, finally, a step in the right direction for making school a place where my daughter can learn.  I know it is just a beginning. I have learned to say that I am “cautiously optimistic” when things seem to be improving.

I cannot forget that it has taken me over two years, in this school alone, of arguing, pleading, explaining, attending conferences, and doing my own research to get to this point.

I have had the pleasure of meeting a very dedicated TVI who is going above and beyond for us and for all of her students.  I am so grateful for her time and her effort.  I will continue to learn from her and with her.

Yet, it is what it is.  It is still not enough time. She is still pulled in too many directions.

If it is what it is, I wonder what it can be if we put our minds to it.

I wonder how we, the parents, can help it become what it should be: consistent access to a learning environment, teachers who understand CVI and who can make appropriate modifications in a classroom, enough teachers and TVI to give every child with any vision loss, including CVI, ample direct instruction and consultation.

I wonder.  Do you?