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

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

 

Northeast AER 2017/ A CVI Mom meets Vermont

Hello Fellow CVI Families,

Today, at 6:30 a.m., I boarded a plane from Dulles airport in D.C. to JFK, and then, boarded another plane to Burlington, Vermont to attend the Northeast AER conference.

AER is the Association for the Education and Rehabilitation of the Blind and Visually Impaired, the professional membership organization of administrators, teachers of the visually impaired, orientation and mobility specialists, and other vision professionals.

AER chapters around the country have annual conferences.

We CVI parents are often talking about how we need more teachers with expertise in the unique learning needs of children with CVI.

How will this be achieved if we don’t start making our voices and our children’s stories heard?

The kids are already in the classrooms.

Time is passing.

This urgency put me on a plane to where I knew I could reach out to some of the educators who will work with our kids.

Now, I’m staring at my computer screen wondering just what to say to TVI who are already overworked and understaffed.

I will keep you posted.

I can report so far that Vermont has

1. So. Much. Flannel. (a big selling point for me)

2. A restaurant called The Skinny Pancake.  I didn’t eat there, but, I may move in if my return trip doesn’t pan out..

because

I lost my driver’s license somewhere between D.C. and Vermont. (Expletive deleted times 10.)

If I don’t make it back, please forward all future correspondence to The Skinny Pancake at the Burlington Airport.  I will be the woman in the corner passed out in a blissful sugar coma behind a pile of syrupy dishes and covered in crumbs.  Wearing flannel.

I can think of worse ways to go.

 

 

 

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

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:

  1. AER takes guidance from its members.  According to Mr. Tutt, if enough members demanded more information and training on CVI, then AER would comply.
  2. 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.

 

 

 

 

Adventures in Advocacy: Never Underestimate the Power of Pie

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, etc.  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

 

 

 

 

 

Moms on Monday #2 / Mary from Ohio

This week we have the privilege of hearing from a tenacious mother and advocate from Cleveland, Ohio.  There are so many parts of this story that are familiar to me and are important for other moms to hear. She has a lot to teach us.

Take it away, Mary!

Dear CVI Family,

My name is Mary and I am a mother of an eighteen year old daughter.  That’s right, eighteen YEARS I’ve been at this.  I am tired and I am worn, but I haven’t given up.  

You see when my daughter was born we knew she had a very rare chromosome disorder that we couldn’t do anything to change.  We knew she had a very serious heart muscle issue that we couldn’t do anything to change.  She had feeding issues and couldn’t nurse. She threw up and was later labeled a failure to thrive.  She had this vision issue that we weren’t sure about.  She couldn’t hold her head up.  She couldn’t latch on or drink from a normal nipple.  Her delivery was an emergency C-section.  She was born not breathing. The cardiologist sent her home from the doctor saying they didn’t know what her prognosis was because her heart function was so poor.  

So, can you see that our focus was on her surviving?   And, way down the list was her vision.  

Eighteen years ago, CVI was such a new diagnosis that her vision issues flew under the radar of importance.  And, you don’t know what you don’t know.  

Finally, at 9 months we were told to go see an ophthalmologist who explained that my daughter had a visual processing issue that was brain based and that time might help.

(Does that sound familiar? And, I can’t believe parents are still hearing the same thing today. )

So, in the blur of everything else we were dealing with we accepted the “expert’s” opinion and continued on with helping our daughter to make developmental gains.  By this time, her heart muscle function had greatly improved and we were moving out of “survival” mode into helping her become all that she could become.

For years my daughter did so much therapy.  And, the puzzling question for so many of us was that she didn’t seem to have any intrinsic motivation to do or learn.  Why was that? Therapist after therapist were puzzled by it.  

By this time, we had seen another ophthalmologist who told us the same thing about her vision. “It’s a visual processing disorder.  Her eyes are physically just fine.  There’s nothing that can be done. Don’t waste your money on vision therapy.” Again, I took the “expert’s” word for it.

She learned to walk by age 4.  By this time, it was clear that she would have developmental challenges her whole life. Trying to help her was frustrating and puzzling.

But, like all of you, I have that “mom gut.” I knew what worked for her.  Plus, I took an awesome autism course that helped me understand that there is almost always a reason for every behavior.  I learned through this course that lots of children with sensory issues have trouble picking out what should be salient.  Yep, that’s the word that was used.  

So, still not knowing about the CVI, I began narrating to her to help her focus on specific things that might be salient.  She struggled in complex environments.  She didn’t make eye contact.  She looked above our heads.  She didn’t look right at things.  She looked and then looked away before reaching for things.  She avoided toys that had too much going on. (As I type this, it is painful because if I had only known back then what I know now, I could have helped her so much more.)  

But, you don’t know what you don’t know.  

I knew that when I talked her through things she was calmer.  She loved Elmo.  So, I would use Elmo as a way to get her to motor plan getting to things. (I put Elmo everywhere.)  There were so many things that I did because I knew they worked for her but I didn’t understand why they worked.

My daughter was in and out of public school.  She started in an inclusive preschool when she was 5.  It was overwhelming for her.  She would often “freeze”.  She didn’t engage. The words, “learned passivity” were used.  So, I blamed myself for causing her to freeze and not initiate.

The public school approach with my daughter was not right for her but it was all they knew to do.  There wasn’t even a vision specialist on her IEP team.  I didn’t know to ask for it.   My daughter was not making progress in the public schools.  Often she would make great progress at home over the summer and then go to school and the progress would stop.

Here are the things I began advocating for:

1)  Wait Time    

2)  Narrating for her to help explain situations  

3)  Quiet lunch with a few willing peers

 4)  A consistent one on one aide for her whole day  

5)  A study carrel for her to work.  

Don’t those things sound familiar?  But you don’t know what you don’t know.   I finally requested a TVI evaluate her as a part of her Evaluation Team Report.

I had heard about CVI by then.  I had Googled some of her unusual visual behaviors and CVI had popped up.  When I say popped up, it didn’t pop up like it does now.  There were a few, and I mean a few, sites and a few articles.

The TVI knew about CVI and even had a CVI evaluation kit.  He evaluated her and firmly explained that she did not have CVI.  There were too many things that she was able to do visually that were not consistent with CVI.  The expert had spoken and although I was doubtful, I didn’t question it.  After all, you don’t know what you don’t know.

After a few years of trying to make the school setting work for her,  I advocated for and got an outside placement for her at an autism center.  There was still no diagnosis of CVI but because the center was used to working with kids with sensory processing issues,  it was a better fit than the public school setting.  At this same time, I began taking her to a behavioral optometry place for vision therapy.  They recognized right away that she was using her peripheral vision and began working with her to use her central vision.  It was a vision therapy approach and it was a start.  She began to use her central vision in fleeting moments.  She also started to do very short tracking.

By this time, my daughter was about 14.  We had seen ophthalmologists, neurologists, a behavioral optometrist, and a TVI who had some knowledge of CVI and, still, no one had diagnosed her formally with CVI.   

I was beginning to up my research of CVI because there were too many things that my daughter did that were part of the characteristics.  After 14 years, I was tired of advocating for my daughter without any diagnosis or support.  So many times, I was told to let the “experts” know best.  I was tired.  And, I felt all alone.  

My daughter switched school placements at age 14.  Her school placement was at a mostly outpatient private therapy center.  They often brought in speakers to educate the therapists.  One of the speakers that visited was Dr. Roman.  One of my daughter’s school therapists was in attendance.  She called to tell me that she was sure my daughter had CVI.   

About 6 weeks later, at the age of 14, my daughter, myself and several of her therapists from her school placement went to Pittsburgh to see Dr. Roman.  My daughter was diagnosed on the CVI range as Phase II 5.25-6.  Thankfully, Dr. Roman said that it was remarkable how well my daughter had progressed even without the diagnosis.  

After all those years, the puzzle piece clicked.  I now knew what so many of you already know.  I knew why my daughter’s vision was so puzzling.  I knew that it was something that could be helped.  You see, I had always said that I knew that the chromosome disorder had caused an organic development issue that caused her body/brain to be formed differently.  But, I also kept saying that there was a part of her that seemed like it was being rehabbed.  There’s that “mom gut” again.  

So, at age 14, after years of advocating, fighting and so much frustration, there was finally a diagnosis. 

There was credibility for all the things that I had advocated for.  And, there was hope for the future because more than ever I knew how to help her.  I also had the hope that her visual processing would get better. 

Like you want for your children,  I  wanted her to become the best “her” she could become.  Plus, I wanted her to learn to enjoy her world, not be afraid and frustrated by it.   She seemed way smarter than she was able to show. 

We began the difficult process of teasing out which behaviors were because of cognitive challenges and which behaviors were because of her CVI issues or which were a combination of both.  You see, because everyone knew that she had cognitive issues, that is what would get blamed and so the supports given were for cognitive challenges.  

Now, I knew how to support her vision so she could continue to develop.   At the age of 15, after having a year of much more focused appropriate supports she had made great progress. She was still in  Phase II, but  had progressed to 6.25-7. Hurray for neuroplasticity! You see, you don’t know what you don’t know.  But, when you know, you can do better.  I was learning to do better!

At age 18, she is in Phase III 8-9.  She will always have cognitive limitations and global limitations.  I can’t do much to change those.  But, I can help her vision improve.  And, she is enjoying her world more.  I am still tired.  But, I’m not alone.  And, I’m grateful for this blog which brings us all together to share our stories and our experience.  

Thank you for your insight and your willingness to share what you’ve learned with us.   

 

 

 

Calling CVI Moms: The Conversation Continues….

sorrows borne

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

I adapted the title of this post from the American Printing House for the Blind page on CVI (http://tech.aph.org/cvi/).

Their title is CVI:  The conversation continues….

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.  And, I have probably missed other causes.  My apologies.

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 children suffering or struggling.  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 ultimately move us in the right direction of having more medical and education professionals who 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!

 

 

 

 

 

 

 

 

 

 

 

Moms on Monday #4 / Tiffany from MO

Good Morning!

This week’s Mom on Monday is Tiffany.  She answered the questions posed by CVI Momifesto with her perspective as Wyatt’s mom and, also, offers words of advice.

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

My name is Tiffany.   My son’s name is Wyatt.  He is 1 year old and we live in Missouri.

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?

Wyatt likes to watch his sister dance around and be silly. He also likes to be tickled and play peek a boo. He will laugh any time we shake our head back and forth. I think it’s the movement since a part of CVI is movement.. He really liked to play with party bows when he was younger. Now he is more into playing with balloons and therapy balls.

When did you first learn about CVI?

We first learned of CVI after seeing the ophthalmologist when Wyatt was 3 months old.

How were you given the diagnosis?

By the ophthalmologist. After the eye exam, the nurse came in with a pamphlet for a near by blind school saying how amazing they were. As she handed it to me she had tears in her eyes.

Does your child have other diagnoses you’d like to mention?

He had a stroke at birth that resulted in significant brain injury and hydrocephalus. He has ataxic Cerebral Palsy, CVI, and dystonia.

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

Sometimes I feel like I know more. I also feel like because they haven’t heard certain info that it isn’t as relevant because I’m telling it to them.

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

It’s hard! You will have to readjust your way of thinking, your goals, and how your child will develop on their own terms and time.

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

Mention it to everyone. You will be surprised who can provide you with extra support and resources.

What would you like for people who have never heard of CVI to know?
Hopes and dreams?  Anything else you’d like to add?

Vision is a big part of learning. More people need to know about CVI so we can start earlier with proper goals and strategies. I wish there was more resources.

Thank you, Tiffany and Wyatt!  More people do need to know about CVI.  You are helping get the word out.

CVI Momifesto welcomes perspectives of parents of children of any age with CVI.  Every parent’s story is important.  Your willingness to share your experience can help other parents facing similar questions and challenges.

Send in your story, or answer the questions above and send them to info@cvimomifesto.com.

Moms on Monday #3 / Subarna from VA

This week’s Mom on Monday is Subarna from Northern Virginia.  She shares some of the struggles and recent successes in finding the right placement for her son, Rohan, who, like so many children with CVI, has several issues affecting his ability to learn and to communicate.

Hi, I’m Subarna and my son Rohan is 10 years old. We live in Virginia, very close to his new friend, E.

Rohan got a diagnosis for CVI at age 3 years because of a persistent vision/preschool teacher who kept asking me to bring him to Dr. Christine Roman in Pittsburgh. He had already been through a serious illness at age 6 months resulting in continuous seizure activity (Infantile Spasms) which it seemed no treatment could stop for months. When we finally did find the right medication, the full extent of his developmental delays were presenting. It was determined he had global delays and Autism. We spent countless hours doing every type of therapy. He always would avert his gaze when reaching for things, but it was explained that it was a common behavior for children with ASD. Otherwise, he seemed to navigate around our familiar areas well enough, so I never suspected anything else.

After seeing Dr. Roman, who found Rohan’s case to be quite unusual that he truly had both CVI and ASD, we had quite a challenge convincing his school team that he needed vision support. One teacher told me:  you need to choose, either ABA (which absolutely works for him) or vision!?!  

We went through many years of this battle between his ABA folks not being able to understand the CVI. The TVIs as a whole didn’t always know much more than me about his level of CVI (which has always been between 6-7). I had a few great ones, and always found them to have the most expectations for him. His teachers felt that he was intellectually disabled and that was the reason he couldn’t learn at the pace of his peers.

As he fell further and further behind in the class, he started getting frustrated and had significant behaviors hurting himself. We tried a new school that was just as rigid as the public school setting, so he failed yet again. This past spring, when I tried to Home-school him and it was no better, I had pretty much given up all hope. We finally found a school that seemed to have the ability to listen and collaborate with others.  They have been able to accommodate for his vision. We are also working with an ABA group privately who learned much about CVI and are helping him use his vision more.

For the first time in his life, Rohan is making progress in all areas. He is happy and so are we!  He loves music more than anything, especially the Beatles. He also loves being read to, listening to his younger brothers, jumping on his trampoline, and eating everything in sight!  

It took me this long to believe that my son could do more than people said he could.  I’m glad we didn’t give up. You shouldn’t either!

Thank you, Subarna and Rohan!  It is a pleasure to learn that you have found a school placement and a team of providers that is working for you.  Thank you for sharing your experience and insight. 

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

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.

 

 

 

 

Moms On Monday #1 / Jessica from NC

Good Morning Fellow CVI Families,

Part of starting a blog called CVI Momifesto was to build community between families facing similar challenges, but separated by distance and/or too busy to find each other.  We can learn from each other.   We can support each other.

I asked several CVI Moms I know if they would be interested in sharing their stories in a regular post we will call Moms On Monday.  If you are interested in sharing your story as well, please email Info@cvimomifesto.com, so we can begin the conversation!

Our first Mom on Monday is Jessica Marquardt from North Carolina.   Welcome, Jessica!  And, thank you. 

Summer was turning to fall in North Carolina, and our neighborhood was out in full force for the annual picnic – a time to catch up with neighbors we hadn’t seen for the season, or perhaps even a year. My daughter (we’ll call her G) is an enthusiastic kindergartner who is learning to write. She traveled from guest to guest asking if they needed a nametag and, if so, would they spell their name so she could be the one to write it?
On three separate occasions, neighbors approached my husband and me to tell us how much G had grown. Not in stature (well, that too), but specifically in maturity and independence. She was actively approaching people to engage in conversation and, as one neighbor put it, “seems happier in her own skin.”
Sounds like your typical, outgoing five-year-old. But there’s a catch. With cortical visual impairment (CVI), G doesn’t recognize faces. She walked up to my husband to ask him if he wanted a nametag. He mouthed, so as not to use his voice, to the neighbor next to him to ask G who she was talking to. She had no idea.
Yes, my daughter has CVI. She can’t interpret the illustrations in her favorite story book and can’t pick me or my husband out of a crowd until we open our mouths. But I’d say she’s fortunate. With a diagnosis of CVI, her vision can improve.
We have been told that of the 90 kids in our county’s school system with CVI, she’s the only one on a standard course of study.

She’s in her neighborhood school in a general education classroom and she receives services from a TVI, O&M specialist, OT and adapted PE. That she is so capable brings its own challenges. She wants to keep up; she wants to be with her peers. However, just like all kids with CVI, she needs specific interventions and supports to ensure that she can. And she needs a team that can stay a couple steps ahead of her to ensure it is prepared to meet her CVI needs.
How did we get here?

My daughter was diagnosed with CVI at eight months old. She has CVI due to a vascular event of unknown cause that occurred in utero or during early development. We have access to stellar medical care and early intervention services, yet no one told us that there was an opportunity to improve G’s functional vision. It took a trip to Omaha to the Conference on Pediatric Cortical Visual Impairment for us to begin to understand the opportunities and challenges. G was four by then – we’d lost four precious years of maximum neuroplasticity.
Armed with newfound knowledge, we traveled to Pittsburgh to see Dr. Christine Roman who conducted The CVI Range to assess G’s functional vision. We read textbooks and articles, watched webcasts and talked to other parents. We asked our school system about its roadmap for training teachers in CVI and related techniques. We asked specifically for a CVI Range Endorsed professional to be a part of G’s IEP team. There aren’t many out there, so our school system couldn’t promise to provide one. So we hired one privately. After meeting G, she began to work with us on a consultative basis, answering our many questions and making suggestions for how we could start to do the right things for G to make gains with her vision. We asked our private OT to join us in taking the Perkins e-Learning course on CVI with Dr. Roman. She agreed wholeheartedly, and our CVI Range Endorsed consultant is now her mentor on appropriate CVI interventions. They’ve made a wonderful team, even though the mentor lives many states away.

That’s the positive outlook. But it hasn’t all been rosy. We don’t live in an area that is ahead of the curve on CVI. We’ve had to educate ourselves and become a broken record for the cause. In less than a year, we’ve attended 30 hours of IEP meetings, plus hours preparing for them.

During one meeting, I felt compelled to text my sister. The exchange pretty much sums up my feelings on IEP meetings:
ME: Still in meeting and dying with stress. Please pray for me.
SISTER: Oh, I’m so sorry. Sending love and calm and prayers.
ME: I’m dying. I might be having a heart attack. Haha!
SISTER: ☹ I’m sorry!!
There have been sleepless nights (I’m a worrier). Tummy aches. Anger. Anger at doctors, the school system and myself for not knowing. For not jumping up and down and sending up a flare to say “Hey, her diagnosis is CVI. We can do something about that.” It’s a tough moment when you realize that no one will advocate for your child like you will, and if you don’t, your child won’t have all she needs to access the curriculum. Honestly, I could write a full post on IEPs, so we’ll save that for another time.
Here are my top three musts on your journey as a parent or guardian of a kid with CVI:
1. Get a CVI Range done by a CVI Range Endorsed professional. You need a score to know where to start intervening. This is non-negotiable.
2. Attend the Conference on Pediatric Cortical Visual Impairment. It changed my world to meet fellow parents and CVI knowledgeable providers (from both medical and education fields). I found “my people” there and learned a ton. You will too. You must get to Omaha.
3. Put together your advisory board. Some will be CVI experts, some will be your cheering section. My husband and I credit ours for molding us into CVI advocates over the past year and a half. We’d consider the following people to be members of our advisory board, and I highly suggest you start to think through who you can call for advice and support: Dr. Roman, our CVI Range Endorsed consultant, our private OT, our special education lawyer, various members of our family (you saw the dramatic texts my sister receives from me in the middle of the day) and other parents of kids with CVI who we’ve met along the way.
After a summer of intentional work on CVI-based interventions with our enthusiastic OT (who has taken some Perkins training and is being mentored by a CVI Range Endorsed professional), our daughter has improved by a quarter of a point on both Rating I and Rating II of The CVI Range. That’s on par with our expectations for a three-month period, and we believe in the hard work that it takes to get there (another topic that warrants a blog post). We expect more improvement as kindergarten continues and are heartened by what we see anecdotally.

G’s visual curiosity is growing and, as a result, so is her ability to access her world.