The AER Resolution, where’d it go?

CVI Momifesto is up to her eyeballs in a new move and hammering out a new placement for her daughter with a gorgeous smile, curious nature, and multiple diagnoses including CVI.

THIS has happened. THIS is happening.

Start Seeing CVI, Brenda Biernat, and CVI Moms are on it.

Please read. Please be aware that as we are blazing a new trail there are individuals who have different opinions about which way we need to go.

Start Seeing CVI

The AER Resolution, where'd it go? The AER Resolution, where’d it go?

You may remember last July, when we discussed a certain resolution that targeted students with cortical visual impairment (CVI), and the CVI Range (Roman-Lantzy). The Resolution was presented at the International AERBVI Conference in Reno, Nevada. Resolution (AER-2018-00) was presented on site  without prior notice, without warning, and hastily “passed” (absent members were denied the opportunity to vote). These are extreme tactics that are all too concerning in these political times.

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Lego Trees and Last Straws / Incidental Learning, Part Two

This post was one of the original posts after CVI Momifesto began in September 2017. 

We are running it again as a lead up to the American Conference on Pediatric Cortical Visual Impairment beginning on Friday, June 29, 2018 at the Children’s Hospital and Medical Center in Omaha.  

Learn all you can about incidental learning.  You may have to teach the folks who work with your children.  Encourage them to learn more.  Your child with CVI does not have visual access to the world.  But, this visual access can improve.  

 

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The following story is the final straw, the very last straw, the one that broke me and the camel’s back.

This is the story that led to my current life of crime, um, advocacy.

lego tree again

When my daughter, E, turned 3, she aged out of early intervention. This was after a thoroughly disheartening couple of years in search of an early interventionist who knew anything about CVI.

I realized it was going to be up to me to find the educational services she needed.

It was quite a learning curve and a huge responsibility. I was already sweating organizing doctor appointments and therapies (sometimes even successfully!), hunting down specialists, researching seizures and reflux, and occasionally, if absent-mindedly, patting my older daughter on the head.

I did not feel successful in anything I was trying to do.  Launching my complicated daughter’s educational career was not something I felt equipped to do.

I was told that our state’s School for the Blind was too far:  I would need to enroll her in our local special needs preschool.  This was a developmental preschool classroom.  The children had a variety of diagnoses. She was the only one with a diagnosis of vision loss. I was informed that the classroom teacher would have consult time with a Teacher of the Visually Impaired.

“Okay,” I thought, “I’ll just take them information about CVI. I can hand this over to the TVI.” Right?  Right.

The classroom was as colorful and welcoming as any preschool classroom should be.  This also means it was way too busy for a child in Phase I or Phase II of CVI. At the time, E was in early Phase II.   I asked for a meeting with the teacher and TVI to get a jump on the accommodations and modifications we would need to develop together.

At the meeting,  I gave the teacher resources I had printed out online.  I began explaining the diagnosis and how we would need to simplify some places in the room if we were going to expect her to develop the use of her vision.

Then the TVI told me about the “one kid like that” she had 20 years ago.

A now familiar feeling of dread was born.

With little to no suggestions coming from our TVI, I suggested putting cloth on some of the toy shelves to create less complexity and clutter.  I asked them to find a space for her with a tri-fold and an uncluttered table so that she could  spend time learning new objects or pictures, without the visual and sound distraction from the classroom and other students.

My requests for modifications simply meant that, like any mother, I wanted her to have visual access to learning materials.  I wanted her to have as much access as she could.  This is more complicated for children with CVI. But, it is possible. Do-able even.

For E to be successful in this classroom, the staff would need to make the effort to understand her vision loss and to help her understand what she was seeing throughout  the school environment.  They needed to know that she could learn to see better and that they had a responsibility to support her in that.

I encouraged the teacher to make the requested modifications, and for the staff to read about CVI.  I watched the TVI drop off a box from the American Printing House for the Blind.

Despite my feeling of dread, I thought, “I’ve got to give this time to play out.”

For a few weeks, when I dropped her off,  I would linger awhile before leaving. Pretty soon I was  getting the “let me do my job” stink-eye from the teacher and had to shuffle back to my car.

One day, near the end of class time, I dropped in a few minutes early to see how she was doing.  Was she interacting with other kids? Were they explaining things to her? Giving her time to process? Encouraging her to touch things?

It was free play time.   All of the kids, E included, were sitting on a brightly colored carpet. Behind them were low, wide bookshelves filled with toys and puzzles.   Kids were reaching for toys, pulling them down, and putting them back.  They rolled cars on the carpet, built block towers, or talked about which action figure was cooler.

Eliza sat with her back to a toy shelf. Smiling. She’s a happy kid. She was sitting next to an aide and listening to the kids playing.   Seeing her smile made me happy too.  She loves to be near other children.  It was great to see her included with them.  It was great that they were giving her a chance to get comfortable there with them.

The aide spied me in the doorway. I could tell she wanted to show me that they were keeping Eliza involved. So, she reached up on one of the shelves, grabbed a large plastic bin of legos and brought it down – crash – into Eliza’s lap.

Then, she reached into the bin and pulled out a small square stack of legos. She grabbed Eliza’s hand and put the legos in it.

“Here Eliza. This is a tree! Feel it? This is a tree.”

Eliza was startled both by the noise and weight of the bin dropped on her lap. To her it was just a loud noise and a physical intrusion. She was startled again by the suddenness of her hand being grabbed. The words made no sense to her.

She pulled her hand away, leaned over and curled up on the floor, overwhelmed by all of this confusing sensory input.  The aide just looked back at me and shrugged.

That sound you just heard was the last straw breaking.

This moment gave me a chilling glimpse of the next 12 or so years in classrooms without teachers and staff who understand CVI.

If there was ever a kid who needed to learn about trees by touching them, E is the kid. If there was ever a kid who needed to go outside and feel the bark and the leaves and have it all explained to her (frequently) to make a lasting cognitive connection, E is the kid.

I suspect she is not the only one.

I wondered how many learning moments would pass right by her because a teacher or an aide didn’t understand that the way they were presenting the material was all wrong – and, quite likely, was pushing her further away, further into herself ?

Their ignorance would create behaviors that made her seem agitated or vacant.

(And, let’s consider this for a moment.

How much could you take if you were surrounded by flashes of light, color, and sounds that had no reference point? 

What if people were always talking to you in words you found hard to understand or too quick to grasp?

What if, every day, you were told to move, yet before you could get your body organized enough to move, someone else’s hands grabbed your hands or your shoulders to steer you?

What if you didn’t have the ability to speak your joys, your frustration, your pain, or your fears? 

What behavioral problems would you have on your report?  How much would you learn?  

My behavior report would be the size of your average copy of War and Peace, highlighted with lots of red exclamation marks, frowny faces, and the occasional cuss word.)

In this moment, I saw a situation that would begin in the ignorance, and, the apathy, of a teacher, an aide, and a TVI.   Their inability to reach her would be documented as E’s lack of cognitive ability and her behavior problems.

It would start there, in preschool, but their ignorance and apathy would follow her every year as a downward spiral of low expectations about my girl’s abilities.

To learn, she needs to have experiences with the real objects.  THE REAL OBJECTS.  THE REAL PLACES.  THE REAL ANIMALS.  THE REAL SENSATIONS. (Within reason, I get that.  We’re not going to run into the polar bear exhibit at the zoo to get the authentic Antarctic experience, or anything.)

THE REAL THING.

This is NOT a tree.

AND, this is NOT rocket science.  lego tree again

It is a problem, my fellow parents.  A real problem for our kids.    This is NOT how our children learn.

And, they can learn.

What can we do about it?  I started telling this story to whomever would listen.  Tell your stories.  Ask for more real experiences in your child’s classroom.  Ask your child’s teacher how she can bring real objects and real experiences into her classroom. (Because your child is not an incidental learner, right?) Ask them if they understand incidental learning.  If they don’t, teach them.  I know a great Blue Bowl story you can tell.

There are some advocacy action items in the works.  CVI Momifesto will fill you in when we have more information.

Thank you for your comments and suggestions.  We are a work in progress and will continue learning as we go.

It is good to know there are other parents out there on a similar path.  And, as we travel this path together, may there be many beautful trees to touch, flowers to smell, apples to taste, and well behaved animals to pet, even the occasional even tempered polar bear. (Because how cool would that be?)

 

 

Emma Bear’s Day: Phase 1-CVI Book

Lauren Seeger, CVI Mom, blogger at Emma Bear’s Journey, and moderator at Parents of Children with Developmental Delays shares a book she has created for children with CVI: Emma Bear’s Day: Phase 1 CVI Book.

Emma Bear's Journey

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Emma has CVI and we have had quite a difficult time finding any books that were suitable for her, given her visual impairment. We resorted to painting the background of books black, as to aid in making it easier for her to view. After going back and forth about it, we finally decided to create our very own CVI series. I’m so happy to announce that “Emma Bear’s Day: Phase 1” is available for pre-order next week. We will be shipping printed copies in early June! The book is $19.95 (plus shipping) and you will receive a FREE digital copy of the book with each purchase. This will enable your child to view the book on a Kindle or iPad. Please contact me at emmabearorg@gmail.com to pre-order your copy today!

“Cortical Visual Impairment (CVI) has been described as the leading cause of pediatric…

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Adventures in Advocacy / Oxford Eagle

Adventures in Advocacy: A fantastic article about the Stearns family and their recent trip to D.C. to advocate for paid maternity leave and early intervention. Oscar and Jack’s parents made sure their legislators heard about their sons who overcame so much to be where they are today.

Bravo, Susan and Dan! Well done, Oscar and Jack!

Oscar and Jack

We were the cover story for today’s Oxford Eagle Gazette! Read here!

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We’ve Got This! / Early Connections Conference 2018

Hello fellow families of marvelous children who have a diagnosis of cortical visual impairment!

On Saturday, April 28th, Perkins School for the Blind held its 35th annual Early Connections Conference.  The all day event offered “parents and professionals throughout New England” the opportunity “to network, share ideas and strategies for helping children with visual impairment from birth to age 7.”  (www.perkins.org)

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Image:  A poster for the Early Connections Conference

I had the pleasure of attending the conference this year.  According to Perkins’ Director of Community Programs and Conference Chair, Teri Turgeon, this year’s attendance totaled 106 parents and 38 professionals (including teachers of the visually impaired, speech therapists, and occupational therapists).

Even though my daughter is almost 12-years-old, I still have a lot to learn.  I found it hard to choose between the variety of presentation topics from the Expanded Core Curriculum to Issues with Complexity in CVI to What about the Dads?  From Has your child had a low vision evaluation? to CVI: Assessment, strategies, and implementation across the day to Strategies and resources to support children who are deafblind. And more!

(I went with Expanded Core Curriculum and CVI Complexity as these are two important pieces of the ongoing development of Eliza’s IEP and, really, her life.)

Historically, Perkins has been and continues to be the leader in educating children with ocular and cortical visual impairments.  With the Early Connections Conference, Perkins is a leader in supporting the families as well.

It was a warm and sunny Saturday in Boston.   The lawns on Perkins campus were green with new growth thanks to rain the day before.  Outside the Lower School Building, picnic tables and a bouncy house had been set up.  Inside, Perkins staff and volunteers were ready to hand attendees their welcome bags and help parents get their children involved in the day’s activities.  Vendors (including the Pediatric Cortical Visual Impairment Society) displayed information and products in the school auditorium where parents and professionals could browse while helping themselves to a continental breakfast.  (Well played, Perkins.  I have never met a bagel I couldn’t learn to love.)

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Tables set up in the Perkins auditorium.  The PCVI conference materials, a display with children’s faces and a table with a black tablecloth and a white drape with the PCVI logo over it.  A group of people stand at the table to the right speaking to another vendor.

Ed Bosso, the Superintendent of Perkins School for the Blind, and Teri Turgeon welcomed the families.  Ed shared that, despite a long career in special education, becoming the parent of a child with a visual impairment was a challenge for him.  He found comfort and information at a previous Early Connections Conference.  For him, attending the conference and meeting other families, meant you will “never feel alone again.”

Teri Turgeon (also the parent of a young adult with a visual impairment) told the attendees that she hoped the conference helped them “fill their cups.”  She explained that there are experiences in your life that are intersections and the choices you make can change the direction of your life.  She hoped that the conference would be an intersection for families to move forward.

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Image:  A drawing of the words “We’ve Got This” held up by a group of women.  One woman holds a baby.  Another baby sits on top of the words holding a rattle in his raised hand. 
Thanks to illustrator extraordinaire, Ian Christy for this fun take on the conference theme

The educational aspect of this conference was a big draw for me, but, what made my heart happy was seeing all of the children. A little girl in a pink t-shirt and holding a white cane expertly navigated in and out of a crowded elevator. Volunteers in red t-shirts took children for walks and painted faces.  In one room, a table of little girls, all bright colors, elbows, and ponytails, drew pictures while a grinning little boy tossed a ball with a teenager, or, rather, near the teenager.  The game seemed to be more fun to the boy if the young man had to chase the ball.

One young mother was hesitant about leaving her infant daughter in the nursery.  I overheard Teri tell the worried mom that when she (Teri) brought her daughter to this conference years earlier she had never even left her daughter with her grandparents. Hearing this conversation, I remembered the strong urge to get an occasional moment away from the never-ending responsibilities of being the mom of a baby with special needs.  And, I remembered the equally strong worry that something would happen if I wasn’t with her. In the first year, the only person I eventually left Eliza with was my mother, a retired nurse – after I had checked her references, of course. You can never be too sure.

The children!  That’s why we were there!  That’s why we are learning as fast as we can and asking questions and reading articles and advocating in schools and beyond.

I got to meet Savannah and her mom, Lacey (Moms on Monday #18 is a loving tribute to a beautiful girl and her dedicated mom).  I got to meet Adam and his parents, Lara and Todd.  (Lara assured me she will be a Mom on Monday someday.  This is in no way a blatant attempt to persuade her to answer those questions I sent her.  Not. At. All.)  These pictures were taken at the end of a long day and both kiddos were ready to go home.  They were very patient to let us take pictures. Adam gave me a very polite High 5.

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Image: A curly haired girl with glasses in a wheelchair between two smiling women
Image: A dark haired boy, sitting in a chair, leans over the tray of his chair.  His father kneels behind the chair with his arm draped over the back while his mother leans in on the boy’s left.  Both parents are smiling.  And, the mother has promised to be a Mom on Monday.

I will follow Adam’s lead and give you my own cyber High 5 to conclude this post.

More to come on the information given and stories shared at Early Connections 2018.

 

More of Ian Christy’s art can be found at https://www.instagram.com/i.christy/

or

http://www.scruffcheek.com

 

 

 

 

Moms on Monday #17 / Maggie from PA

Good morning!

Today’s Mom on Monday is Will’s mom, Maggie.   Will has a smile that will brighten your day.  Maggie has experience, wisdom to share and a “can-do” spirit that has taken them all over the country.  

Introduction:   Maggie, mom of Will, age 9. We live in Feasterville, Bucks County, a suburb of northeast Philadelphia, Pennsylvania.

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

Will is a very happy, very social, very adorable redhead who has a smile that makes you smile when you see it. If you get him giggling you are certain to laugh, too. He has always loved music. I remember him lying on the hospital bed the day after he was born, all bundled and ready to make our journey home. Only his face was exposed. I put my face close to him and quietly sang “Somewhere over the Rainbow” to him. He quieted and just “stared” at me while I sang. From then, whenever he is fussing or restless, he will still quiet, or calm, when I sing to him.
We also loves water. He is very discerning though because the water must be warm. He wears his life jacket and we put ankle weights on, which allows him to bob in the water upright. He loves the freedom of kicking and moving in the water.

will in pool

Image:  Will in a life jacket with his dad in a pool

Another activity we do is traveling! This boy is very well-traveled. We estimate that he has visited 16 states and DC.  He has traveled coast to coast and north to south on around 2 dozen flights in his action-packed 9 years. We decided early on that we would not let his challenges keep him from experiencing his world. He is a great traveler both by car or plane.

willImage:  Will, a smiling red haired boy

We travel with Will’s stuffed friend, Cordy Roy, who gets a photo shoot at every location we travel to.

will bedford countyImage:  Will’s stuffed toy, Cordy Roy, next to a Bedford County sign

will in van

Image:  Smiling Will in a wheelchair in a van

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

We knew something was wrong when Will was about 1-month-old.  He wasn’t tracking us with his eyes and he wasn’t smiling in response to our facial expressions.  He had an unfocused stare.  Not long after, we began our journey of discovery.  After several tests, we found ourselves at the neuro-ophthalmologist at CHOP who gave us the official diagnosis of CVI.  We were fortunate that he was diagnosed very early without any resistance from our neuro-ophthalmologist.

We began consulting with Dr. Roman early. We started seeing her every 6 months for a few years. Now we visit her annually. So, we were luckier than many and have known about CVI for a long time.

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

We already had begun learning about what CVI meant through our early intervention TVI, MaryAnne Roberto.   We were so fortunate that she was assigned to Will and had a lot of knowledge about CVI.  She pointed out Will’s behaviors that supported the diagnosis.  She helped us create an environment that accessed Will’s vision. She was also instrumental in linking us to Dr. Roman in Pittsburgh.  We started seeing her every 6 months for a few years.  Now we visit her annually. With our neuro-ophthalmologist, MaryAnne, and Dr. Roman, our knowledge of CVI and the world of accommodations began.

will with rl

Image:  Will with Dr. Roman-Lantzy and his dad

Does Will have other diagnoses you’d like to mention? 

Will lived in the land of “undiagnosed” for the first 5 years.  We had many diagnoses – global developmental delay, seizure disorder, failure to thrive requiring a feeding tube, non-verbal, non-ambulatory, CVI, hypotonia, microcephaly, cataracts – but no overarching name of the cause.

Genetic testing in first year was inconclusive.  When he was 5, we decided to revisit genetic testing.  In March of 2014, we received the call that our son has a rare genetic disorder called FOXG1syndrome.

FOXG1 syndrome is a spontaneous genetic mutation that affects approximately 300 children in the world.  Neither Will’s father nor I have this error, but when we looked at the characteristics of the syndrome – love of water, love of music, CVI, feeding issues, seizures – Will’s picture could have been posted next to the definition.   A diagnosis at last!

It did not change our interventions, but it did give us a group of parents who are also living with the consequences of FOXG1.

How is CVI being addressed in Will’s school setting? 

CVI in school has been a different story from our early intervention experience.  Our early intervention team embraced the CVI interventions that MaryAnne shared so generously.  It hasn’t been so easy in school.  The vision team is not educated in CVI.  They have been resistant to learning about it and adapting Will’s materials.  After 2 years with few adaptations and the purchase of a communication device by the school district, we have finally put our feet down and said enough is enough.  They cannot continue to work without making vision a priority.  So this year’s IEP reflects a lot of changes.  With the assistance of an advocate, we had a CVI endorsed TVI come in and complete a new CVI Range.  The score on the range revealed a loss of visual literacy.  That led to new goals and a significant increase in vision service time.  Sadly, the vision team still does not share my sense of urgency.  This is an ongoing source of friction.  It’s heartbreaking since we really want to have a better relationship with our TVI and Will’s vision team.

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

I would say two things to other moms.

First, do not give up.  Do not despair. Your child knows your voice and your touch.  He/she knows you even though they don’t seem to acknowledge you.  With time and training, your child WILL see you.

It was a momentous day when Will looked at me and “saw” me! He now has more than 12 feet of functional vision and can most likely see farther.

The second thing I want parents to remember is to presume competence!  I have found over and over that Will surprises me with what he knows and can do!  Set the bar high, work hard, and be amazed with what your child will do!!!

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

Other people should know that CVI is a vision impairment that is neurologic in nature.  With time, patience, and specific interventions and accommodations, vision can be improved! If a child can achieve a certain place on the CVI Range, he/she may sight read.  If that is achieved anything is possible for that child!

What are your hopes and dreams for Will?

Our goal for Will is to be the best Will he can be!  We don’t know what that is yet, but he is still full of possibilities! We will continue to work and help him achieve his greatness!!!

red haired will!Image:  Smiling Will wearing a Start Seeing CVI t-shirt

Thank you Maggie for sharing your journey with your handsome, red haired, well traveled young man!    He IS full of possibilities!  

Moms on Monday #16 / Dixie from KY

Good morning fellow families of lovable children who have Cortical Visual Impairment!

This morning’s Mom on Monday is Olivia’s mom, Dixie, from Kentucky.  Dixie is a Teacher of the Visually Impaired for Visually Impaired Preschool Services (VIPS) in Kentucky.  She provides early intervention to infants and toddlers with ocular visual impairments or Cortical Visual Impairment.  She also provides support to their families who often struggle to understand their children’s diagnoses.  Dixie has the unique perspective of experiencing a CVI diagnosis as a mother and of guiding other parents through their CVI experiences as an educator.   She was kind enough to take time out of her schedule to speak to me while driving home from vacation.  

IMG_20180225_182714209Image:  A smiling young girl and a woman in glasses.

What does Olivia like to do?  What makes her laugh?  What are some of her favorite things? Olivia is almost 14 years old and enjoys the things most teenagers enjoy.  She loves watching movies and TV.  Her favorite foods include hamburgers and spaghetti. She is not a fan of fruits or vegetables.  Olivia loves gymnastics and tumbling.  She loves playing outside.  She loves her dog.  She has a huge sense of humor.  She is always smiling or giggling about something.  IMG_20170904_153045146

When did Olivia join your family?  I had started providing foster care and was working as a Developmental Interventionist for First Steps (Kentucky’s early intervention system). Olivia’s biological mother was a drug addict.  At 2 months old, Olivia had been rushed to the ER because of malfunctioning valves in her heart.  She was pronounced dead at the hospital, but was resuscitated.  She experienced oxygen deprivation during all of this. Afterward, Olivia entered foster care and was staying with a foster parent who was a friend of mine.  They were waiting until Olivia was 6 months old to be able to perform surgery to fix the valves.  My mentor kept telling me, “Your daughter is down the street.”  I met her 10 days before surgery and fell in love with her.  The adoption was finalized when she was 9 months old.

How was Olivia’s early intervention experience?  We knew there was some brain damage because of her other diagnoses, Down syndrome and Fetal Alcohol Syndrome, and heart failure. We did not know the impact it would have. Olivia rolled over at a typical age of 3 months, but she lost skills as a result of the surgery.  At 9 months old, we started over.  She essentially lost a year of her life at the beginning.  She had developmental intervention, speech therapy,  and occupational therapy.  Olivia always loved to look at books in her developmental therapy.  When she was a baby, she would watch Baby Einstein videos.  CVI did not occur to me.

When did you first learn about CVI?  I knew her vision was off. Over the years, we went to 3 or 4 different eye doctors. When she started kindergarten, they said she was a little farsighted.  They said Olivia needed glasses, that all children with Down syndrome need glasses.  Then, they said she needed bifocals, but she just kept looking over the top of them.

By this time, I was working as a Teacher of the Visually Impaired for VIPS.  I asked for a Functional Vision Assessment at school. The school refused saying there was no diagnosis of legal blindness.

We went to Cincinnati Children’s Hospital and saw Dr. Robert North.  He referred us to the Cincinnati Association of the Blind to do a Functional Vision Assessment.  When they began testing, they started making modifications for CVI without explaining what the modifications were for.  I recognized what they were doing, watched her respond, and realized that she had CVI.

Then, the lightbulbs started going off. I started to think about times when she was smaller and behaviors I did not understand.

Olivia had bad nystagmus as a baby.  She never crawled outside of the living room except for one time when I was vacuuming.   She ventured out to follow the vacuum all over the house.  Until then, she would not go out of the living room  – the familiar environment she knew.

How were you given the diagnosis? The Cincinnati Association of the Blind sent their report to Dr. North at Cincinnati Children’s Hospital.  He gave us the diagnosis.  He was the first doctor we had seen who took the time to look at Olivia’s history and not blow us off.

How has CVI been addressed in Olivia’s school setting? When we came back with Dr. North’s diagnosis of CVI, she automatically qualified for vision services and federal quota funding.

Despite our trip to Cincinnati Children’s Hospital and our prescription from Dr. North, the school’s TVI informed me that Olivia didn’t have CVI.  The TVI announced that Olivia was colorblind.

I told her, “You’re not an eye doctor.”

I had not told the school system that I was a Teacher of the Visually Impaired and that I was aware of the laws that regulated education for children with visual impairments.

I provided the first lightbox to Olivia’s school.  I borrowed it from VIPS.  As soon as they figured out it was working, they ordered one for their school.

It had taken a year to get the CVI diagnosis and to get the school system to recognize that Olivia was visually impaired.  By the first day of school in 1st grade, she qualified for “vision services,”  but I don’t know how much vision support she got.

We eventually went to see Dr. Roman because Olivia was in Phase III and folks didn’t know what to do with the higher levels of CVI.  Dr. Roman helped me realize that some of Olivia’s communication delays were really related to CVI.   She would often mix up the pronouns “him” and “her.” Olivia would sometimes look at a girl with short hair and say “him.” Dr. Roman explained that it is hard for children with CVI to figure out the details that define people and their gender.

Her school experience at the time was frustrating.  For 2 years, she had the same list of 15 sight words because she wasn’t learning all of them.  We lost a lot of time with this because the school didn’t realize that a word has to have meaning to Olivia for her to learn and to recognize them.

She learned words like “mom” and “dog” because she has a mom and a dog in her life.

Little words like “a,” “an,” and “the” don’t have meaning.  “It” was on the list.  How do you define “it”?  “This?”  How do you explain the word “This?”  And, you don’t really need the word “The.”

The longest word on the list, “friend,” was the one she learned because it had meaning for her.  It had a clear definition she could understand.

In teaching reading, I started to realize that the little sight words also create visual clutter.  We started using a curriculum for whole word learning which has a lot of similarity to how Dr. Roman uses highlighting and bubbling words.  (EdMark Reading Program)

What would you tell a mom whose child has just been identified with Cortical Visual Impairment? 

Cortical Visual Impairment doesn’t stand alone.  The children with this diagnosis usually have other diagnoses.  Many of the families I work with don’t know what CVI is.  They just hear “blind.”  They don’t know CVI can improve. When the vision of a child with CVI does improve, I get the joy of seeing their families experience moments that other parents would just take for granted.

Also, trust your mother instinct.  If something doesn’t seem right to you, keep asking.  Keep advocating.

My mom often tells me that everything has a season.  Both good or bad.  When something seems really bad, it will not last forever.  Everything has a season.

It has been so important for me to have that village of people you trust and who know and understand your child.  You need a village.

What do you know now that you wish you had known? 

I definitely wish she had gotten the CVI diagnosis sooner.  We wasted a lot of time not knowing about her vision.

What would you like people who’ve never heard of CVI to know? That visual clutter is everywhere.  Complexity will never go away 100%.  I educate people on that everyday in my job.  And Phase III is hard for people to understand.  People don’t realize Olivia is visually impaired.

Every child with CVI is different.  IMG_20171224_150802713

Hopes and dreams?  I just want her to do something that allows her to be a functioning member of society.  She loves babies and animals.  I hope she can eventually get a job doing something she loves.  I want her to be happy.

 

 

Thank you Dixie for sharing your experience!   Thank you for serving families like ours.  Thank you lovely Olivia for sharing your mom with us.  

Moms On Monday # 15/ Beth from IA

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

This morning’s Mom on Monday is Beth from Iowa.  Beth is the mother of 3 young men, Matt (24), Pat (22), and Tyson (6).  She is a Special Education teacher for the Nebraska Department of Corrections.  As Beth says, “I’m an Iowa mom and a Nebraska teacher.”

Matt Pat and Tyson

Image:  A smiling young man giving a thumbs up sign and a smiling boy leaning against him.  Image: Two smiling young men.  One young man is holding the boy in his lap.

She has been a staunch supporter and board member of the Pediatric Cortical Visual Impairment Society (PCVIS).

Beth is wise, fierce and funny with the straight forward, “call ’em like you see ’em” perspective of a mom who has seen a lot and has persevered.

Both Tyson and Pat have been identified as having Cortical Visual Impairment although at markedly different times in their lives.    Beth has experienced having one child diagnosed as an infant and one child diagnosed as a young adult.

Tyson came into Beth’s life when he was 4 months old after being neglected, underfed and drugged by his birth mother.  In addition to CVI, Tyson has an ocular visual impairment.  He is extremely farsighted in one eye (20/400) and wears glasses.  He has moderate to severe hearing loss, hypotonia, developmental delays, and “autistic type behaviors”.  His dual sensory loss and lack of communication skills qualify him as a deafblind child.  Beth adopted Tyson when he was 18 months old.

Tyson was diagnosed with CVI at approximately 12 months old.

It was only when Beth started to learn more about Tyson’s brain based vision loss that she began to see similarities in Pat’s and Tyson’s visual behaviors. This led her to take her older son – by then a young man – to the same Pediatric Ophthalmologist who diagnosed Tyson, Dr. Richard Legge, from Omaha Children’s Hospital. (Dr. Legge is also the current president and one of the founders of the Pediatric Cortical Visual Impairment Society.)

Beth’s older son, Pat, received a CVI diagnosis at the age of 20.

Enduring a traumatic birth and underdeveloped lungs, Pat “was blue when he was born.”  He had Periventricular Leukomalacia (PVL), a type of brain injury to white matter and experienced heavy seizure activity before the age of 2.  He received early intervention services for speech delays.

As a boy, he wore glasses for 8 or 9 years and often complained that “his eyes were hurting.” Beth  continued to take him to pediatric eye doctors who decided that his history of seizures left him with “weak eyes” and a lazy eye.  Eventually, Pat stopped wearing glasses when the doctors decided that he had issues that “glasses would not fix.”  At that time, Beth explained that she did not know about the specializations for pediatric vision.  “I didn’t know there was such a thing as a neuro-ophthalmologist.”

Pat is 22 years old now.  His seizure disorder and visual impairment prohibit him from driving.  He is employed and takes an Uber or gets a ride from Beth to get where he needs to go.
About Tyson: What does he like to do? What makes him laugh? What are his favorite activities?

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Image:  A smiling young boy in glasses wearing a Chewbacca Halloween costume

Tyson loves cars, trucks, and all things with wheels.  He doesn’t understand the concept of cartoons, but will enjoys Daniel Tiger cartoons and Bob the Builder.  

He likes to watch old movies and Westerns like Rawhide and the Lone Ranger.   Older shows and movies have music in the background.  They are not as flashy as shows today. He likes the music; it helps him understand what is going on.   

His favorite colors are neon pink and green, especially pink.

Beth and his teachers to use neon pink to get Tyson’s visual attention.  One of his favorite toys is a bright pink sensory ball he received from the Iowa School for the Blind. 
When did you first learn about CVI?  

The first eye doctor I took him to said he didn’t know why people “brought kids in before the age of 2.” 

Beth realized that his multiple diagnoses required more specialized doctors, so she opened the phone book and started calling until she found Dr. Legge at Omaha Children’s Hospital.  
How were you given the diagnosis?  

Dr. Legge explained Cortical Visual Impairment.  He said it would be a long road and how his vision improved would depend on the amount of damage to Tyson’s brain.  He thought that since I was a special education teacher it would be easier for me to understand it.  
How was your child’s early intervention experience with regard to CVI?   Were your providers knowledgeable? Were they open to learning?

In early intervention, Tyson’s first Teacher of the Visually Impaired did not like that he didn’t prefer the color red.  What she took from Dr. Roman-Lantzy’s book was that all children with CVI prefer the color red.  This is NOT true and not what Dr. Roman-Lantzy wrote. 

Children may have color preferences.  The choice of color will vary depending on the child.  Tyson likes neon pink.  When he did not  respond to the color she thought he should respond to, she told Beth’s babysitter, “Tyson’s just making retarded choices.”  

Even though he was a non-verbal infant who couldn’t crawl, Tyson made his opinion of this TVI very clear. He didn’t crawl, but he could roll. So he rolled over to the front door to close it when he heard her approaching.  Sometimes he would roll away and hide under a bed when she came to work with him.

Beth changed to another TVI.  In Iowa, TVI cover geographic zones so a child may work with the same teacher from birth to adulthood.  Tyson’s 2nd TVI still works with him and his school team.  
How is CVI being addressed in your child’s school setting? 

The first year he was in school and this year have been great.  The first year, everyone was willing to learn.  We explained that the stairs needed to have reflective tape on them to help Tyson navigate them safely. The principal said that this accommodation would help everyone.  One weekend the principal and other school staff came in to put reflective tape on the stairs – one color for going up and one color for going down.
What do you know now that you wish you had known at the beginning of your journey as your sons’ mom?

  1. That you can switch your providers or services.  I assumed you just got who you assigned.
  2. Follow your gut.  If something feels wrong, keep looking, keep asking. 

 

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

  • DO NOT GOOGLE CVI and all the horrible things you might find on the internet until you have spoken to an expert. Find an expert and ask questions.   And, keep asking. 
  • If you do research on the internet, look for something research based and at your level.  The internet is a wonderful and scary place at the same time.  Not everything you read will be true. 
  • It is terrifying enough when you hear initials instead of words.  When they said Pat had PVL (Periventricular Leukomalacia), I heard leukemia.  
  • Know that CVI is a spectrum diagnosis.  There can be 20 kids in a room with CVI and each one will be different from the next.  
  • Just because someone (even if it’s your parents) gives you advice, you can listen but it might not be what works for you. Take everything you hear with a grain of salt.  What’s best for you is not going to work for me.   Figure out what works for you and your child and what you have access to.  
  • Don’t be afraid to take advantage of any services you can get – even if it means having a label assigned to your child.   Take help where you can get it. 
  • Don’t be so afraid that there is so much more to do.  It’s small steps.  A little at a time. 
  • Move past the guilt part.  Cut that out quick.  

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

Having a visual impairment is not the end of the world.  We all “see” things differently anyway. 

There is a huge range within the spectrum of a CVI diagnosis.  What they can do at 6 months is not what they can do at 16 years.  Let time work.  

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

I’d like them to eventually take care of themselves and/or to express their needs. I’d like them to live a peaceful life.  


Tyson has CVI and other diagnoses. He has about 10 words – not full words. He has his own signs. Sometimes the frustration he has is not about vision, it’s communication. When they talk about getting a child to “talk,” use the word communicate. It might not be in the cards for him to talk.   And, you can’t let the kids get away with everything because of a diagnosis.  


There is a lot of trial and error in this.  At the end of the day, if they’re all still alive, it’s ok. 


On judgment from strangers:  Everyone will have an opinion. Tyson likes pink.  Some people have a problem with boys liking pink.  Who cares what color your kid likes? 

There are people everywhere who will try to give you advice.  For example, we were in a toy aisle one day.  A woman noticed Tyson and started to tell me all of the things he wasn’t doing.  She told me, if he’s not doing this and that, then he needs to be in therapy.  

I thought, “I’m so glad I came to the toy section of Walmart to get medical advice.”

 

And, that, gentle readers, may be my favorite sentence of all time. 

Beth, talking to you made my weekend.  Thank you for taking the time to share your experience, your wisdom, and your humor.  Your young men have a formidable mother.

Death by IEP / Assessments and Access

There are no tests of potential (different from achievement) that are free from inherent bias for individuals with CVI. The items are often based on content that is linked to visual learning and therefore, the scores will skew low

….and they certainly do.
Dr. Christine Roman-Lantzy

Cognitive assessment is typically based on how a child learns information including rate of learning, problem solving, and accuracy. For children with vision impairment, they have not had access to basic information.

How can you learn, let alone be judged on, information that either you cannot access or others have not given you access?

Dr. Sandra Newcomb

Hello fellow families of beautiful children with CVI,

Since it’s IEP season, I’ve been thinking about assessment tests recently.  As a parent of a child with special needs, I have watched my daughter go through a gauntlet of physical, developmental and cognitive testing from her earliest days.  It can be hard to watch.  It can be hard to hear the results.  Whatever the results, I want them to be accurate.

As the parent of child with CVI, I have learned that there is a lot to be aware of when someone says they want to assess your child.

When Eliza was about a year old, a new occupational therapist wanted to assess her.

We were still wrapping our minds around the diagnoses that had quickly followed our girl into the world:  microcephaly, cerebral palsy, global developmental delay, cortical visual impairment.  The learning curve was less a curve than a straight 90 degree angle to climb with no climbing gear,  and occasional boulders of unforeseen complications – seizures, asthma attacks, severe GI issues, little sleep – raining down at any given time.  We were trying to find our way.

This was soon after our Neuro-Ophthalmologist had told us there was nothing we could do about CVI. “Take her home, treat her like a blind child, come back and see me in a year.”

This was soon after I had ordered Dr. Roman-Lantzy’s book and sought her out for the first time.  I was just at the beginning of understanding what Cortical Visual Impairment was.  The message that Eliza’s vision could improve, however, was loud and clear.

Dr. Roman-Lantzy’s work offered me a glimpse of hope, especially because many of her 10 CVI characteristics explained Eliza’s puzzling behaviors for the first time..

Eliza was a light gazer.  She stared at light coming in through windows, lamps, or any strong light source.  She stared at fans.  She reluctantly used her peripheral vision and only if she had to. There was a long latency period between the time she would glance sideways at an object and then reach for it (usually with her head turned away from the object).  If you did not know to wait, you would miss her processing and getting organized enough to reach for something she had seen 15, 20, 30 seconds earlier.

She would not look into faces.  Her head often hung down, especially in new environments.  The novelty of new places was too much sensory input, and often, caused her to have screaming fits.   She was in Phase I.  I was still learning what that meant, but it was a place to start.  It was a foot hold in my 90 degree upward climb.

The new occupational therapist wanted to assess Eliza’s fine motor skills to establish a baseline to measure future progress.  Made sense to me.  I knew we had to get used to doing this.  We had to let the experts do their thing. Their keen eyes and knowledge would help me read my girl who was in many ways still a puzzle to me.  Their assessments would give us a fuller picture of Eliza and what she could do.  Or would they?

This is what I remember from the first assessment 10 years ago.

It was called the Hawaii Early Learning Profile.  I remember because the acronym for this assessment is HELP.  That was very comforting.  Boy, did I need HELP.  And, why Hawaii?    What did Hawaii know that the rest of the United States did not?  Maybe, there would be poi and hula dancing involved.  (Remember, I was not sleeping and it gets very busy in my head even when I’m well rested).  The HELP would help.

Standing in the OT’s office with one-year-old Eliza on my hip, I read over the developmental charts in the HELP.  I noticed that a lot of what was assessed required that the child had typical vision.   I mentioned this to the therapist.  She agreed that was an issue.  HELP, like most developmental assessments, did not account for vision loss.  But, she would write a note that Eliza had CVI.

I continued reading the chart of developmental milestones.

Looks at picture” – Nope.

“Plays with hands, feet” – Hasn’t found them yet, so no.

“Looks at place where ball falls down” – Uh Uh.

“Plays Peek-A-Boo”  – Well, doesn’t look at faces, so pass.

“Searches with eyes for sound” – Can we substitute stares at light bulbs?

“Places cylinder in similarly shaped hole” – Okay, I don’t even know where to begin with this one.  Just no.

“She is technically legally blind,” I told the OT.  “She doesn’t look at pictures.  She doesn’t look at faces. New sounds startle her. Do you have a different assessment?”  

The OT assured me she would mention Eliza’s diagnosis of CVI in the notes section of the test.

“Wait, what?  The central challenge to her ability to interact with the world will be a footnote?” (Okay, I didn’t say anything that articulate.  The “Wait, what?” is more like it.) 

To begin, she wanted to test Eliza’s ability to track a ball and to reach for it.  She put a light colored tennis ball on a school desk and rolled it to where I was standing with Eliza in my arms.

“Get the ball, Eliza!”  the therapist prompted.  The ball rolled off the desk.  Eliza was oblivious.    The OT looked apologetic, picked up the ball and tried it again.  Eliza stared at the fluorescent lights above us.  I stared at the therapist in disbelief.

She can’t see the ball,” I told the OT.  “It is too similar to the color of the desk.  Can I put a piece of black cloth on the desk to make it easier for her to see?”

“No. We have to maintain the protocol of the assessment.”

“If she could see it, she might reach for it.” 

“We can’t change how we do the assessment.”

So, the assessment will just be a series of zeroes then. It is going to look like she can’t do any of this if we don’t give her a chance to see what you expect her to do.  You’re not going to get an accurate idea of what she can do right now this way.  That’s like me asking you to run an obstacle course or do an algebra test in the dark. How would you score on that?”

“I’m sorry.  This is how we perform this assessment.”

“Well, it’s basically useless.  So, I think we are done here.” 

After watching the OT roll a ball my daughter could not see to her and then, scoring her as unable to track and complete the task, it dawned on me that the rules of this test were stacked against her.  Her development was going to chart a different path, a path this test did not accurately measure.

This was a new and strange idea.  I was slowly getting used to the fact that Eliza didn’t fit in anyone else’s boxes – not the pediatrician’s typical development questionnaires, not the stupid head circumference charts, and now, not even in the assessment for a child with developmental delays.

We were in unchartered territory.  We needed people who would think (and assess) outside of the box.  If the test did not apply to her, then the rules didn’t either.   I thanked the OT for her time, told her we would not be working with her, and took Eliza home.

I am not an expert in developmental assessments, but I have sat through many of them over the years both as an observer and an interviewee.  Eliza is far too capable and far too challenging to be relegated to “notes in the margin.”

I have since seen gifted  interventionists and therapists work with Eliza’s sensory challenges – starting with a thorough reading of her scores on the CVI Range.  I have seen them observe her intently for long periods of time.  I have seen them use trial and error when necessary, but always respectfully.

The kid faces enough challenges as it is.  She at least deserves to be evaluated in a way that reflects her true ability and potential.

And, the HELP was no help at all.  (Sorry.  It was right there.  Someone HAD to say it.) 


Fast forward about 10 years to a week ago, when I was sitting in a meeting with our IEP team at Eliza’s school.

Our search for FAPE in our CVI saga is a long and complicated tale. There have been successes and setbacks.  In the CVI spectrum, Eliza is on the complicated side.  She is non-verbal and has had a series of lackluster school placements.

Yes, she has delays in her physical and cognitive development.  Yes, she can learn.  Yes, these two sentences can co-exist.  You would be surprised how many people you have to convince of this basic fact.

This year we have had slow, steady success with communication.  On the other hand, she has also developed some behaviors that get her out of doing things she doesn’t want to do.  (That kind of cleverness doesn’t show up on cognitive tests.  And, will give me more grey hair than I already have.)

In this recent IEP meeting, a school psychologist confidently presented her assessment of Eliza’s behaviors and introduced the Behavior Intervention Plan that would shape them right up.  There would be a token system of bright yellow stars that Eliza would learn to associate with immediate rewards.  Eliza will comply!  Eliza will be rewarded!

Eliza is currently in mid to upper Phase II now.  With private consultation and work at home, she has begun showing more visual curiosity.  We have worked on teaching actual objects in her environment first and then moving to 2D representations of these objects.  Recent research from CTVI Matt Tietjen has revealed that children with CVI struggle the most with symbolic representations of objects – cartoon drawings, illustrations, etc…   They need to learn the actual objects and then learn the pictures of the objects.  (Check out his class, “What’s the Complexity Framework” offered through Perkins elearning.  Seriously.)

This is what was going through my mind when the psychologist started explaining her token system to us.  They were proposing stars (symbols)  to represent a reward for a child who does not have a lot of external motivators. (I never said she was easy.)  I wondered if the psychologist had actually met my girl.

I wanted to clarify about needing to use actual objects and then move to 2D pictures.

I interjected, “You realize she has a visual impairment right?  She has Cortical Visual Impairment, so we have to —” 

I know, I know.  High contrast.  We have to make the stars high contrast.”  The psychologist cut me off mid-sentence and began explaining her token system again.

I was reminded of something CVI Teacher Ellen Mazel said at a recent conference.

Ellen says that the most dangerous people she has ever met are

1. Teachers who have never heard about CVI

and

2. Teachers who have been to one workshop or read one article and think they are experts in CVI.

I knew I was sitting in this IEP meeting with someone who had read an article and decided she knew CVI.

She was going to continue using the assessments and the strategies she knew (for children with – I can only assume – typical vision) without taking into account how Eliza has access to her environment.
By the way, not having access to your environment, not understanding what is going on around you will affect your behavior.

This situation is still a work in progress.

I am shopping for an advocate and hoping to win the lottery.  To be continued….


What have I learned from these experiences?  What do I continue to learn?

When dealing with children identified with CVI, the CVI Range (Roman 2007) is the assessment that is the foundation of all other assessments.

When you are the parent of a child with CVI, be wary of the assessments used by your intervention or educational teams.  There are not many developmental assessments that take visual impairment into account.  Ask a lot of questions.

Ask them if they know what incidental learning is.  Our children are NOT incidental learners.  This fact should guide how therapists and teachers interact with them.

If you don’t feel comfortable with the answers, ask more questions until you do.  Or, ask for new providers.  You have every right to work with therapists and interventionists who have your child’s best interest at heart and who understand how to work with a child  with CVI.

Regarding other assessments for young children with sensory loss, I found interesting information here:

http://www.wonderbaby.org/articles/development-charts

and

http://www.perkinselearning.org/scout/assessment-young-children-visual-impairments

I am also aware of The Oregon Project for Preschool Children who are Blind or Visually Impaired. It is a comprehensive assessment and curriculum designed for use with children birth to six who are blind or visually impaired. It can be used by parents, teachers, vision specialists, or counselors in the home or in the classroom setting.

 

I am not recommending one assessment over another.  Each child with CVI is unique and requires a multi-disciplinary team approach of therapists, interventionists, teachers, and doctors.  Some of these team members must have a thorough understanding of CVI.

We, the parents, are team captains.  If your team proposes to assess your child with developmental tests that do not give your child access, you may need to discuss what other methods of assessments are available.

If no one on your team says you need to get a CVI Range completed for your child by a Perkins-Roman Endorsee, then, you need to lead the way.

Inaccurate results are not going to help your child.  Inaccurate results are not going to help your child’s therapists or educational team.

Even when it comes to assessments:

It is not extra

And, to all of those folks who want to test our children with tests that do not accommodate them…

To all of the therapists and teachers who have read one article or attended one workshop on CVI and then try to fit these kids in the margins or the footnotes, Eliza and I would like to respectfully say,

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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.