Moms on Monday # 20 / Barbara from FL

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

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

logan and parents

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

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

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

 


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

logan and glasses

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

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

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

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

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

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

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

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

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

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

—————————————————————————–

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

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

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

What I want educators to know about Logan.

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

————————————————————————————————————————

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

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

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

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

logan and siblings

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

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

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

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

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

—————————————————–

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

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

“He has this?”

———————————————————

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What are your hopes and dreams for Logan?  

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

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

I have to try.

It’s what moms do.

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

 

“First they ignore you..”

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

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

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

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

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

The misconception is this.

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

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

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

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

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

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

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

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

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

 

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

let’s say that again –

thousands –

of children identified with this brain based visual impairment.

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

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

or

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

The organizations said no.

Then, she approached Perkins.

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

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

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

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

 

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

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

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

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

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

Cynicism serves no one.

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

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

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

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

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

Sometimes hope is all we have.

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

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

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

What a disappointment it is to not even try.

What a greater disappointment to disregard those who do.

 

 

 

 

Adventures in Advocacy / NE AER / Part 3

Be a life long learner about CVI.

Be a life long learner about the brain.

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

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

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

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

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

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

Regarding the perspective of the parent/teacher:

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

Regarding IEPs and Assessments:

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

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

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

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

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

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

 

 

 

 

Trailblazing: How do I ask for/renegotiate a CVI Endorsed Teacher?Experts weigh in.

Hello fellow families of glorious children who happen to have CVI!

Remember this from the last blog post?

…At the meeting with the team you are putting together, you have every right to request a CVI Endorsed teacher.  
It will sound weird.
You may be the first person in your school, county, state to do so. 
There will be an awkward pause. 
They will look at you funny.  
When they do, you will wonder whether or not you are
1. crazy 
or
2. asking too much. 

You are neither.

All of this is true.  Challenging your schools and your school systems to recognize and accommodate for CVI is advocating for your child’s quality of life. We are trailblazers.  Pith helmets are optional.

There was a comment after the post, asking for help renegotiating at an IEP for a CVI Endorsed Teacher.  I read the comment a few times.  I was out of my league.  I couldn’t make a dumb joke and tell everyone to “keep on keeping on.”

I have been trying to find the “right” answers to questions like this for years.  I find that each state is different, their systems of government are different and their school systems are different; you get my drift.

Living in a state in which your child has access to

-a diagnosis of CVI

-teachers who are CVI endorsed

and

-schools that recognize the unique needs of children with CVI is RARE.   

Every time my family moves to a new state, the prospect of unraveling the knotty problem of educating a child with vision loss lands at the top of my to-do list.  Who to talk to?  How much experience does the classroom teacher/TVI/aides have?  Has anyone ever heard the letters C,V and I put together before?  How does this state accommodate students with vision loss?  Some states do it better than others.  The list goes on  and on.

I am a parent advocate, but, I am not an expert in the IEP process.  Not even for my own kid.  I hope to be someday.

I am a parent who thinks this CVI situation needs to improve on a national scale.  I am learning and asking a lot of questions.

With this understood, I asked the question “How can I renegotiate for a CVI Endorsed teacher after already having the annual meeting?” with some experts in the field of education.

It is an important question for many families.  Thank you, Christi, for asking it.

There isn’t one answer to this question at this point in our journey.  But, here are the responses I got.

Many thanks to Dr. Julie Durando, Ellen Mazel, Peggy Palmer, and Dr. Christine Roman-Lantzy for their time and willingness to help CVI families navigate this bumpy terrain.

Julie Durando, Ed.D., Project Director, Virginia Project for Children and Young Adults with Deaf-Blindness – “The challenge of asking for a CVI Endorsed teacher on an IEP is that Virginia doesn’t recognize the endorsement in any official capacity.

Schools don’t really have a way to require teachers to get something that isn’t recognized as a Virginia certification or endorsement.

Even in the field of VI and Blindness, there is disagreement about which strategies are most effective.  This can make it confusing for administrators when experts in the field don’t agree.

I like to hope that professionals take personal responsibility to learn the skills needed to effectively do their jobs and serve kids well.

The shortage of teachers with VI certification does not make anyone at the state level eager to add stipulations to who can serve in this role.

This is no way unique to Virginia.

It is a national problem.”

Ellen Mazel, CVI Program Manager, Perkins School for the Blind –  “I always say the CVI Range is the only assessment with reliability to look at functional vision for a child with CVI.  The creator of that assessment (Dr. Christine Roman-Lantzy) determined that people need to prove competence in its use.

The steps to prove that competence begin with the Endorsement she has created.

There is no one doing an assessment of the Wilson Reading Program who has not gone through extensive training in it’s use.

There is no one doing many kinds of educational testing assessments without going through training.

The CVI Range is no different.”

Peggy Palmer, TVI –  “It’s a bit dicey, of course, to ask for a CVI Endorsed teacher after (I assume) the child already has a TVI.  However, I would go with the argument that with this brain based eye condition, the correct kind of strategies can have a dramatic effect on a child’s brain development.

A person who is CVI endorsed is able to correctly assess the child’s vision, prescribe the best strategies for vision development and provide ongoing assessments as the child’s vision changes.

We are not advocating for our children to make new friends.”

Dr. Christine Roman-Lantzy – “My thought would be to reopen the IEP and/or use the content of the IEP to support whether or not the CVI Range was used properly and that present levels, objectives, and accommodations are all incorporated and match the CVI Range Scale.”

This is what I’ve got so far.  It is good to have the insight of experts.  They can provide us with language that can sway school administrators.  Also, this insight can help you with your own advocate, or, as you prepare your own case for advocacy.

We are setting precedents.  Creating change is – like any act of creation – messy, chaotic, and fraught with folks who liked it better before you stuck your nose in it.

But, for children with CVI, where is the fun – the Free and Appropriate Public Education in that?