Moms on Monday / Melissa Keller

Good morning,

I had a post lined up for today.  Then I learned late last week that a friend of mine, Melissa Keller, died after a long battle with ovarian cancer.

Today, in Bloomington, Indiana, her family and friends are going to meet at the local Unitarian Universalist church to celebrate her.  She should be celebrated far and wide.

I do not live in Indiana anymore.  I am sitting here in Virginia with an ache in my heart and a smile on my face as I think of Melissa.

I did not get to know her for as long a time as some of her friends.  She actually reached out to me 5 or 6 years ago.  She was a professor at Indiana University who taught early childhood courses.  She read in the local paper about the work I was doing with an agency called Visually Impaired Preschool Services to bring early intervention for infants and toddlers with blindness in Indiana.  She had convinced IU to rent a bus and had taken her early childhood class on a field trip 2 1/2 hours away to Louisville, Kentucky where the VIPS office and preschool facility is.

She emailed me after the fact.  I was surprised and amused that a bus full of Hoosiers showed up on VIPS’ doorstep.  I had known nothing about it.

She and her students toured the facility.  They observed some of the preschool classes.  She appreciated the reverse inclusion model at VIPS where typically sighted peers attend classes geared toward children with vision loss.  Everyone benefits from a more tactile approach. Everyone learns empathy. Everyone is celebrated for who they are and for what they can do.  Everyone learns at their own pace.  Simple as that.

She wrote me a complimentary email after the tour and invited me to speak to her classes which I did. She wanted her students to become aware of the possibilities of a career in early intervention.   After a presentation one year her classes made tactile toys and books for the VIPS welcome bags we provided to new families.

Melissa and I had known each other for a few years when she sent me a Christmas card.  In the card, she wrote that it had just occurred to her that I may not know she had a connection to a famous woman I mentioned sometimes when explaining the urgent need for improving educational services to blind children.   She included a copy of a picture of Helen Keller.  On the picture, in square neat letters on the lower right corner was a note to a family member (I can’t remember the name. I think it was a cousin.) and signed, Love, Helen Keller.

I was honestly stunned.  Her last name was Keller, for Pete’s sake, but I had never even thought to make the connection.   We talked a little about the family a couple of times and that was that.

I wondered if her distant relative was a factor in her interest in VIPS.

It is possible although she had a long career as a champion for children as a teacher, principal, and professor in her own right.

Melissa Keller was a loving mother, grandmother, daughter, wife, friend, and teacher.  She was also a terrific writer.  Her CaringBridge site kept her fans entertained and informed as she and her husband, Thomas, traveled all over the world in a modern day hero’s journey to keep cancer at bay.  She made us laugh while our hearts broke.

She wrote a book about her experiences with her husband’s family called Crazy is Relative.  It is funny and bittersweet and very revealing about how people are shaped by their experiences in ways we cannot know unless we tell our stories.

I just wrote that Melissa Keller “was”.  I am struggling with that.

She is.  She remains in my thoughts and in my heart.

She liked to end her Caring Bridge posts with lyrics from songs she loved or was listening to at the time.  Here are some of my favorite lyrics with Melissa in mind and in heart.

Joyful Girl by Ani DiFranco

I do it for the joy it brings 

Cuz I’m a joyful girl

And, the world owes me nothing

We owe each other the world. 

I do it cuz it’s the least I can do

I do it cuz I learned it from you 

I do it just because I want to

I want to.

 

 

 

 

 

 

Moms on Monday #19 / Brenda from WA

Good evening, fellow CVI families!  It’s still Monday!  We here at CVI Momifesto like to keep you on your toes.

Today I heard a quote that resonated with me.

“Anger is inevitable.  It’s what you do with it that counts.”

This quote made me think of the CVI moms who are organizing and moving mountains for their children.

Jasper’s mom, Brenda, is getting a lot done with her anger.  I salute her.

If you have done any research on cortical visual impairment online or on social media, you have probably found the blog Start Seeing CVI and the companion Facebook page.  You may have heard about a CVI Advocacy Call recently hosted by the American Foundation for the Blind – the first national conference on advocacy for children with cortical visual impairment.  (Editor’s sidenote:  This call was a big dang deal.)

If you were on Facebook this month you may have seen this –

April is CVI Literacy
Image reads April is CVI Literacy Awareness Month

You may also have run across pictures of remarkably attractive children and their mothers wearing this t-shirt.

brenda's t-shrit

Image:  Black t-shirt with Start Seeing CVI and the 10 CVI characteristics

And, what if I told you all of these amazing efforts were the result of one dynamic, unstoppable mom?

Yes, it’s Jasper’s mom, Brenda from Washington.  She graciously answered questions I asked her about Start Seeing CVI, the motive behind the famous t-shirt, and just how she was able to make April CVI Literacy Awareness Month and September CVI Awareness Month.

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Why I started Start Seeing CVI

When you are raising a child who has cortical visual impairment (CVI), the lack of awareness, and education, and knowledge of CVI is one of the hardest lessons. My son Jasper was diagnosed with “cortical blindness” at one week old. The birth to three experience was spent learning about CVI and explaining it to his many providers. For a short time, as a baby, he had a “vision educator,” who was trained to identify a vision issue and knew a little about CVI but not nearly enough. Through birth to three years, my son never had a regular teacher of the visually impaired (TVI), and we live in a major city, Seattle. In a way, it was better, because his early intervention team was willing to learn and listen to me and there was no TVI ego to contend with. That changed with his transition to the public school system.

The original Start Seeing CVI t-shirt was created in 2014 during Jasper’s first full year of preschool. He was in Phase II CVI, as scored by Christine Roman. His TVI did not want to make any modifications to materials to give visual access to my son with CVI. It did not help that the young special education teacher backed him up. When doing anything with Jasper, you have to think of his cortical visual impairment first. You have to think about the CVI ten characteristics first. How could the school team not see that? And how could I get them to think about his CVI? Do I need to send to him to school with a note pinned to his shirt every day?

And so I created the t-shirt. How could they miss it now?

Jasper's t

Image:  A boy lying down with his arms covering his face wearing a Start Seeing CVI t-shirt

The Start Seeing CVI blog came a little later, from that same place. It evolved from my original blog – writing about the experience of raising a child with special needs – to writing increasingly about having a child with cortical visual impairment.

Nobody knows about CVI because nobody is talking about CVI.  Nobody is talking about our kids.

Look around, on social media, nobody is talking about CVI. You can find Helen Keller quotes and Braille topics by the dozen, but nothing on CVI. No CVI graphics or quotes or memes. The organizations that serve students who are blind and visually impaired, and are supposed to serve our kids with CVI too, are not talking about CVI. American Printing House for the Blind (APH) is a good example. To look at social media, at a place like APH, you would think that most people who are blind or visually impaired are Braille readers. But the reality is more like five to six percent. Cortical visual impairment is the leading cause of visual impairment in our kids; they comprise the biggest portion of the demographic. But nobody is talking about our kids with CVI.

Perkins School for the Blind is talking about CVI and asking the critical question, What more can we be doing for students with CVI? And that is likely due to a few things, including their relationship with Christine Roman.

CVI has been around for a few decades now, you can find it in the medical literature as far back as the early 1990s. Nobody knows about cortical visual impairment because nobody is talking about cortical visual impairment. I wanted to change that.

As I travelled around, attending CVI conferences and trainings and workshops (I do not take vacations) and meeting other parents, our stories were the same. My child’s providers have not heard of CVI. My child’s providers do not know enough about CVI. My child’s TVI is not knowledgeable about CVI. It was not just my experience, it was the universal experience of CVI parents all across the country. I hoped that writing about CVI, and writing about Jasper, might bring both better understanding and awareness of CVI.

There is also so much misinformation out there around CVI.

Especially some of the online groups that are supposed to be about support, I avoid them. Even some websites or CVI “fact sheets,” if you happen to be given one. It is so important that CVI parents have information, but it is even more important that the information be accurate.

Not everybody out there who is teaching you about CVI is qualified to do so. Stick with the experts, not the people who are trying to sell you something. Providing accurate information and resources is a huge priority on my blog. I have no interest in debates around cerebral vs cortical.  It is an old argument and does not serve my son, or any family trying to get support for their child with CVI.

Why & how I was able to create two months of awareness 

(“Not 1 CVI Awareness Month…2 CVI Awareness Months!” – CVI Momifesto )

Since fall I had been trying to find a home for a CVI advocacy conference call. There were about six different conversations going on, with different people, parents, providers, and I wanted to get everybody together and on the same page.

American Foundation for the Blind (AFB) was willing to take a chance, and last month, in March, was the first ever national teleconference on improving education services for students with CVI.

Awareness and education and knowledge need to increase across the board – from diagnosis, to early intervention services, to public school, neurologists, occupational therapists, ophthalmologists, orientation and mobility specialists, pediatricians, physical therapists, special educators, speech language pathologists, and teachers of the visually impaired.

It has got to start with the university teacher preparation programs. I say that as a person who was enrolled in such a program, and they were not teaching cortical visual impairment or the CVI Range.

My son’s diagnosis of CVI is not optional, and teaching CVI is not optional.

On the AFB call, the universities made a lot of excuses, and yet the University of Massachusetts Boston is teaching CVI, and the CVI Range, and has a dedicated and required courses on CVI. So it is possible. My son deserves providers who are proficient in CVI, and so does every other child with CVI. And it has got to be somebody who will be at the IEP table. Our kids not only deserve this, they have a right to it.

jan

At the same time, we are focused on APH. In January, APH posted on its social media account about their plans to “Make Big Things Happen” this year for students who are blind or visually impaired. And there was not one word about cortical visual impairmemt, and how they would “Make Big Things Happen” for students with CVI. I almost let it go – but instead I commented, What about our kids with CVI, you won’t even make the CVi Connect app a quota fund product for them. My comment did not go unnoticed. In a short time, MaryAnne Roberto commented from Pennsylvania, and Gunjan from Pennsylvania, and Anna from Ohio, and Riley from Oregon, and Rachel from Maryland, and Rebecca from Virginia. The comments from CVI moms kept coming.

A group of us came together around that experience. We are committed to improving things for our children with CVI. We are raising our parent voices on behalf of our kids.

And this is just the beginning.

If you are a parent or provider of a child with CVI and want to lend your voice, you can go to Start Seeing CVI Advocacy or the Start Seeing CVI Facebook page to learn more.

Jasper

Image:  A smiling boy in glasses and wearing a hat with a wide brim and striped shirt.

 

Thank you, Brenda and Jasper!  Thank you, Brenda for your courage and your tenacity. 

Moms on Monday # 18 / Lacey from MA

Good morning fellow families of delicate chubby cheeked children who happen to have Cortical Visual Impairment,

This morning’s Mom on Monday is Savannah’s mom, Lacey.  Savannah is leading her mom on a journey of joy, challenges, and education.

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Sweet Savannah Mae is my little six year old blessing. Oh, how I love everything about her. My journey in life is led by a little girl. She is paving the way. She is my tiny little teacher.

savannah

Image:  A smiling young girl in glasses

It’s been six years since Savannah was diagnosed with cortical visual impairment. That day will forever be stamped in my heart. Savannah was diagnosed with cortical visual impairment at 8 months old. Before the diagnosis, I will never forget her six month appointment at our local ophthalmologist. We had been referred by Early Intervention because as our early interventionist put it, “It’s like the lights are on and nobody is home.” Yikes!! I’ll tell you I’m a lot stronger now and I would never stand for that insensitivity, ever. That was a different time and a fragile place so I just went along with the referral.

Our local ophthalmologist had real vision concerns and wanted to refer her to a specialist in Boston. Savannah had a normal eye exam but he thought she might be blind. But wait, she sees her spoon coming and opens her mouth for food and she loves to look at the mirror above her infant swing. She can see. She loves to look at the overhead lights and she knows exactly where they are, even if the lights are off. It went as far as her dad and me calling our overhead lights, “her friends”. Due to her hydrocephalus, I always thought her eyes were just a bit different. They were aligned by this age, at least mostly, and not in the sun setting position due to hydrocephalus. Little did I know at that time.

It had already been a busy eight months, six weeks spent in the NICU and the appointments that followed, all while try to juggle work as a “medical mama”. My little warrior girl had brain surgery at one day shy of one month. Our schedule was filled with appointments, follow up, and just maintaining her overall care. On February 1st, 2012, her dad and I arrived at Boston Children’s Hospital. When our appointment started, Savannah was brought into a room for a preferential looking test (PLT). This is a visual acuity test for young or nonverbal children. Black and white stripes are presented and as they get thinner, an evaluator will determine if the child is looking towards the striped pattern. They use the stripes as an acuity measure which is calculated based on the size of the stripes the child can locate.

Next was a VEP, also known as a visually evoked potential. This test records electrical activity in the vision portion of the brain. The patient is positioned in front of a computer screen with electrodes strategically placed on the patient’s head.  The computer screen is a black and white checkerboard pattern.  This test evaluates vision functioning in the retina-to-brain nerve pathway.  Ophthalmologists might use this as a tool when considering the diagnosis of Cortical Visual Impairment (CVI). Not all children with suspected CVI have this as an option but we are fortunate enough to live in an area with advanced medical care.

Following testing, we met with a highly recommended ophthalmologist. She told us that our daughter was legally blind. She has “cortical visual impairment.” She told us, “We will register with Massachusetts Commission for the Blind and with Perkins School for the Blind.”  I tried listening but all I heard was BLIND, not truly knowing the definition, not truly understanding how this could be. She had already been through so much in her short life.

The visit concluded with a prescription for glasses. Savannah was prescribed glasses due to her astigmatism and because she was farsighted. She was getting glasses!! At eight months!! I couldn’t decide to dance in excitement with the thrill of a new accessory or cry because she was a baby and I didn’t know a single baby that wore glasses. I do have to admit she looked adorable in her first frames that were entirely too large for her delicate chubby face.

sav baby

Image:  An infant wearing glasses

The ride home was rough and filled with tears. Mark drove, as I couldn’t contain my tears. I called my mom to tell her and I couldn’t even get out a word because I was crying so hard. As we pulled into our narrow drive, Mark’s emotions were also evident as he hit the side of the neighbor’s house. It was devastating for both of us to get this type of news. The tears continued for a week. And then suddenly, I decided to embrace my journey.

A little more about my sweet little girl. My love for her is something fierce. We share a special bond. She has defined me into who I am today. She is a happy but feisty little girl. She smiles with her entire body, especially to the tune of a xylophone. She fills every crevice of my human body with joy.
My life with Savannah has always seemed complex but normal. It’s my normal. It’s everything I know about motherhood. It is 100% normal to us, even when it might not seem normal to others.

At birth, Savannah suffered a grade 4 brain bleed, periventricular leukomalacia suggestive of hypoxic ischemic injury. Savannah has a diagnosis of hydrocephalus and had a VP shunt placed one day shy of a month old. At almost five years of age, Savannah was diagnosed with Ogden Syndrome, an extremely rare syndrome also known as a Naa10 mutation. I mean, she is a diamond in the rough. And this kid sparkles. Savannah is one of 18 in the world with her exact mutation and 1 of 29 with a variation of the Naa10 mutation at this current time.

But let’s get back to her vision. I remember reading Little Bear Sees, which I highly recommend to any parent of a child with CVI. I remember thinking by her current age she would have near normal vision. We are part of the CVI endorsement so I can’t talk about phases and scores but I can tell you, any child with CVI faces many obstacles. Her vision is anything but typical, but it is what she knows and what we know for her. We are working hard to help decrease the frustration that comes with low vision and nonverbal communication. Along with her vision, Savannah is equally as complex. At this current time, she is not sitting, walking, or talking.

She is happy and loved fiercely.
That is what matters most to me as her mommy.

As a mom, I’m hopeful. I TRY to put the best interventions in place. Savannah continues to make visual progress, especially if food and beverage are involved. She is great at locating objects in her environment using her peripheral fields. I am working hard, as her mom and her advocate, to help her start using her central vision. Her team at school is also working toward this goal. Savannah knows some routines, and she continues to make strides in every area of development. She is an amazing little girl and I am so blessed to be on this journey in life with my sweet Savannah Mae.

sav with blocks

Image:  A little girl in glasses playing with yellow blocks on a lightbox

Savannah has really inspired me to be the best I can be for her. This journey we are on led me to graduate school. I completed my Masters in Education and I now work as a TVI with the youngest children. I am also very close to becoming CVI endorsed. I absolutely love helping children learn to use their vision but also supporting their families during this fragile time.

Savannah has improved in every aspect of her life but she is on her own chart, in every single way. I once read from a blog I follow of another child with CVI, “she is just inching along”. This is a phrase I like to use now.  Milestones are just so big and inchstones are much more appropriate.

Another mom in my Naa10 group wrote an article and hands down my favorite quote, “It’s like raising a giant question mark!” Yes, it totally is!!!

Thank you Lacey and Savannah Mae, this beautiful one-in-a-million girl! Your journey together is helping other families who face similar challenges.  

 

 

 

 

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?

img_54291.png

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.

Moms on Monday #14 / Jenny from IN

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

This morning’s Mom on Monday is Maya’s mom, Jenny, from Indiana.  Jenny and her family have been very active in advocating for early intervention services for children with vision loss.  In this post, Jenny takes on a common challenge to parents of children with CVI and ocular forms of visual impairment.  Take it away, Jenny!

maya

Image:  A girl in glasses gives a peace sign

I have two wonderful daughters, one of whom has CVI, Cortical Visual Impairment.  Maya is 7 years old now and in 2nd grade.  Her older sister, Zoey, is 8 and in 3rd grade.

Maya was born 2 weeks early on an overcast day in May.  Due to being rear ended in a car accident, I was in the ER, extremely pregnant, strapped to a back board, and wearing a C-collar.  I was watching the clock when the contractions started.  So began my journey in the world of having a “special needs child.”

Maya is a great kid who loves playing with her older sister.  Oh, there are times when she is extremely challenging, don’t get me wrong.  Right now her passion is butterflies.  Maya is as stubborn, determined, caring and sweet child who has never met a stranger.  At school she even has an amazing group of friends who look out for her.

I would like to talk about sleep.  Kiddos with a vision impairment can be, how can I put this?  Sleep challenged?  Let’s be honest, it can be a living nightmare for parents when their child can’t sleep.  It was for me.  She just wouldn’t sleep!  Maya was 2 years old at this point and climbing out of her crib when we first started talking about sleep.  I was looking particularly haggard at one Developmental Peds appointment when the doctor asked me if Maya was sleeping.  They recommended some melatonin and a sleep safe bed.  One insurance fight later, a big truck pulled out front with the miracle bed.  Let me tell you, it was worth every second of dealing with the insurance company.  The solution worked until Maya was 5 years old.  One day she discovered how to climb out of that thing.  This kid who walks like a drunken sailor can climb like a professional rock climber.  She would climb out of that bed, play in her room, and occasionally climb into bed with me, or go into her sister’s room and play.

Ok, I thought, I can deal with this.

Then, one night, she went outside.   I woke up to knocking on my bedroom window.

Good lord, it was Maya! Her knees were muddy where she had fallen, and her bare feet were cold.  She was bored playing by herself and wanted some company.  That was the worst night of my life.  My baby could have gotten seriously hurt and I was oblivious.  The thought never crossed my mind that she would go outside by herself!  I asked her why.  She said that she couldn’t sleep and decided to go play outside.  Oh, and she brought the family dog with her on her 2 a.m. outdoor adventure.  After that, my husband added alarms on Maya’s door, and every other door in the house that could lead to a potentially dangerous situation.  maya the great escape

Image:  A girl standing in a swing in the backyard

We changed tactics.  Instead of managing the situation, how do we make it better?  I googled, researched, and talked with my mom.  We tried everything from promising I-Pad time if she would stay in bed to taking away toys if she got out.  Nothing worked.  It felt like I was slowing losing my mind from not sleeping.  If she wasn’t sleeping, I wasn’t sleeping.  I needed to make sure she was safe.

Maya has trouble getting to sleep and staying asleep.  Finally, I talked to experts.  I called every doctor and specialist that I could think of who might help.  Doctors we hadn’t seen in years!  I was drowning and she was too.  Due to being persistent and sobbing over the phone to a sympathetic nurse we got an appointment  with the sleep clinic and the nearest Children’s Hospital.  (Of course, we had to get a referral sent over first.)

We implemented the advice that the sleep clinic recommended and it kind of worked, but not all the time.   She was falling asleep at school at this point.  She was acting out because she was tired and cranky.  That got us bumped up to the sleep psychologist.  With their help we finally got a handle on the situation when they added some sleep medication in addition to the melatonin.  It helps her sleep through the night and not get up at 4 a.m. every morning.  She doesn’t sleep well every night, but most nights.  It goes in cycles really.

Here is what we do.

No screen time 2 hours before bed.  She is sensitive to blue light.  It sends her brain the wrong signals.  Instead of the signals – “It’s time to relax” and produce melatonin, she would play on the IPad all night long.

The doctor added an iron supplement because was have a family history of restless leg syndrome.  The doctor thinks it’s genetic.  Apparently, it can skip a generation and then crop back up again.  Awesome!  It takes about 3 months to build up to the correct level of iron.  Maya tested low on her iron.  Hopefully, the supplement will help.  In some cases, once that iron level is up to where it needs to be the restless leg goes away.  (Fingers crossed!)

We also took out all of her toys and distractions from her room and added a strict bedtime and a bedtime routine.

If your child isn’t sleeping, you are not alone.  Don’t wait.  Talk with the experts and get some help.   It will benefit your whole family and your marriage.

 

Thank you Jenny and Maya!  I read your post with great interest because sleep is a constant challenge for us too.  Thanks for sharing!

Moms on Monday #13 / Rachel from MD

Good morning fellow families of lovable kiddos who happen to have Cortical Visual Impairment!

This morning’s Mom on Monday is Rachel from Maryland.  Rachel’s son, Henry, was identified fairly recently as having the characteristics of CVI.  Rachel hit the ground running educating herself and advocating for her son and our children at the National Institutes of Health.  (See a photo that will make your day below!)

Right now, I am the closest I’ve ever been to truly knowing my son.

My sweet, joyful, funny Henry who is always ready for a hug, a dance party, or a bus ride, but so often is frustrated to the point of tears by the mundane challenges that other 5 years olds negotiate so effortlessly.

Since he was born, we have puzzled over Henry’s vision problems, coupled with developmental delays and behavioral outbursts. Then, only 8 months ago, for the first time, a therapist suggested he had the characteristics of CVI. This moment changed everything.

Rachel and Henry

Rachel and Henry schooling the medical community about the characteristics of CVI at the National Institutes of Health.  How cool is this picture?  

Henry’s vision was always a mystery—at least that’s what every doctor told me.

We saw a pediatric ophthalmologist, neurologist, neuro-ophthalmologist at Children’s National in DC, pediatric genetic ophthalmologist at the National Institute for Health, and no one ever mentioned CVI. This included a series of vision teachers that had worked with Henry since he was 1. So of course, I took the wait-and-see approach. If these doctors and teachers aren’t sure, then Henry’s vision must be a mystery. (Yep, that’s me screaming right now. The daily anger has not yet subsided.)

Our appointments were dominated with conversation about Henry’s ocular issues: his nystagmus and pale, small(ish) optic nerves. Henry also has hypotonia (low muscle tone), vestibular processing issues, and global developmental delays (high fives to all you CVI parents who spend the evenings and weekends at therapy appointments!).

We spent Henry’s first two years of life trying to get him to eat enough. He was in the zero percentile for weight for way too long. By now, he eats nonstop, and we are grateful to be out of survival mode. Like we all have heard, our kids are unique cases, complicated, with a lot of things going on.

But this still doesn’t justify why CVI was not on our radar sooner (I still kick myself for not figuring out on my own that he has CVI).

So back to this moment that changed everything. Henry was in a Pre-K program for students with special education services. His teacher kept asking me about his vision and I kept going back to Henry’s primary ophthalmologist, who told me that his vision was fine (yes, his acuity was in the normal range) and that Henry has attention and behavioral issues that need to be addressed. I naively told Henry’s teacher this and I am forever grateful that she did not listen to me. She got a specialist from the vision office to observe Henry who then recommended him for the Vision Pre-K class.

At Henry’s IEP meeting 8 months ago, one of the vision teachers at the table said, “You know, Henry has characteristic behaviors of CVI.”

I sat there, mouth open, frozen with confusion, and muttered, “What is CVI?” I later learned that this TVI attended a CVI training with Dr. Sandra Newcomb, one of the leading experts on CVI who also recently completed Henry’s CVI Range Assessment—Henry’s in Phase 2 (Roman-Lantzy).

From what I hear from CVI parents across the country, a TVI knowledgeable about CVI is the exception. It is unacceptable that our kids do not have access to trained vision teachers who can provide interventions.

We know that our kids can learn to see with the appropriate interventions (Roman-Lantzy), so why, WHY, do universities refuse to include coursework on CVI?

A side note on Henry’s current Vision Pre-K class. Henry’s teacher is a TVI knowledgeable about CVI. The physical environment is CVI friendly and all tasks are modified for Henry’s CVI. There are 8 students in the class with a range of vision issues, half of which have CVI. The school’s OT, PT, and Speech therapists adapt their work based on Henry’s CVI needs. Even the PE teacher develops activities adapted for the blind and visually impaired. I know, is this for real? It is. Henry’s placement is an anomaly in this country. Every child with CVI deserves this opportunity. Unfortunately, this vision program stops at Pre-K and because Henry is low-incidence (I. Hate. This. Term), he has fewer options available for Kindergarten. So I join the ranks of fierce parent advocates to ensure my son’s needs are met and that he has access to all aspects of the learning environment.

It’s been a whirlwind trying to learn as much as I can about CVI, while processing the range of emotions that come with this new diagnosis—gratitude, anger, relief, frustration, excitement, WHY MY SON?!, and hope. Dr. Roman-Lantzy’s brilliance and expertise continues to help me and thousands of families help our kids see.

Brenda, creator of Start Seeing CVI, said it best, “She is our Annie Sullivan.” Dr. Roman-Lantzy, thank you from the depths my heart for enabling me to truly understand my son.

I know my son now. I know why he doesn’t use or rely on his vision. I know why he has frequent meltdowns and why he has trouble with transitions. I know why he’s never looked me in the eye and why he requires constant hugs. I know why he hates reading books and doing fine motor tasks. I know why he has difficulty with attention and is always on the move. I know why he loves yellow buses and yellow everything. I know why he doesn’t recognize me when I pick him up at daycare. I know why he always holds my hand when ever we are outside or in a new environment. I know why he can’t find something that dropped onto a patterned rug. I know why reading and writing will be a struggle, but he will learn to read and he will learn to write. I know my sweet Henry, I know how to be his parent, and I am filled with immense gratitude.

What has been my one of my greatest joys lately is connecting with CVI moms from across the country. Being able to revel in our shared experiences, to ask questions, share resources and strategies, to get fired-up, and to know that I have these brilliant and fierce woman to lean on, gets me through the exhaustion and unsure moments.

This year is the first of many years of being a CVI tiger mom. To make sure the medical and education fields wake up to CVI, so no parent is ever left wondering why their child’s vision is a mystery. And no parent ever has to sit in an eternal IEP meeting trying to convince the team to take their child’s CVI seriously.

To all the CVI parents out there, the highest of fives. Onward!

Thank you Rachel and Henry!   

To purchase your or your child’s own Start Seeing CVI t-shirt, go to https://startseeingcvi.com/buy-the-t-shirt/.  Just in time for IFSP or IEP season!  Half of the proceeds from purchase will go to support the Pediatric CVI Society, the only non-profit organization dedicated exclusively to Cortical Visual Impairment.

 

Moms on Monday #12 / Anna from OH

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

This morning I am so glad to have permission to share the words and the works of a mother who has helped lay the foundation of the Pediatric CVI Society over the past few years.  She has made great strides in raising awareness about CVI in her local community through her creative fundraising methods. In addition, she and her oldest daughter, Olivia, have been active in changing societal perceptions of children with special needs.

Anna from Ohio is the mother of three beautiful, energetic children and a RN who teaches student nurses.

In 2013, Anna started a blog, Hope She Smiles (http://oliviacansmile.blogspot.com) to chronicle her family’s experiences after her daughter, Olivia, was born.  Anna gave me permission to repost some of her inspiring blog.

Thank you Anna and Olivia!

From September 2013

“Take her home and hope she smiles” was the quote from the Neonatalogist the day after our sweet Olivia was born. 

The question that I’ve been asking myself over the past week is, “Where do I start?”

Usually the best place to start is at the beginning, but historically I do not follow the path that is paved. In an attempt to answer questions that I am frequently asked by other parents of children with CVI is, I will focus on the present with the past sprinkled in.

In August of 2007, we didn’t know what Olivia’s future held. We heard news from the NICU team at West Penn Hospital that would change our life forever. After suffering seizures and apnea 12 hours after birth, she was life-flighted to Pittsburgh. Her diagnosis was massive stroke in utero, cause undetermined.

What did this mean for her, her development, and her quality of life? We had so many unanswered questions. As a nurse myself, I struggled with understanding what this meant for a newborn. I knew in that moment that I was not acting as a nurse, but as a mother. A mother? I had only been a mother for 24 hours and I didn’t know what I was supposed to do.

SO the present…Where is Olivia now?

With the help of Early Intervention; Occupational, Physical, Speech, Vision therapies, follow up appointments; and a new appreciation for special needs children we were on our way.

She is currently in Phase III of the CVI Range and I know all of the above, plus other things that I will be mentioning in future blog posts, have been instrumental in getting us to this point.

Her main diagnosis resulting from the stroke: Cortical Visual Impairment (CVI). Luckily we were connected with Dr. Christine Roman-Lantzy from the Pediatric View Program when Olivia was only a few days old.

(Dr. Roman) has taught us that the focus should be on her vision, because it CAN improve. This statement gave us extreme hope and determination.

Olivia is in Kindergarten now and is a social butterfly. She is extremely happy and energetic. She can not only smile, but learned to walk, run, jump, ride a bike with training wheels, swim with a life jacket, horseback riding. We have even taken her ice skating.

Our approach to her and her diagnosis is “Let’s try it” Sometimes it is a success and she surprises us beyond belief and sometimes it fails and we vow to try again at a later date.

I believe our nontraditional approach has led us to where we are now.

From September 29, 2013 post entitled “Hope”ful

Hope” she smiles…

The word hope was a word I used often in my life previous to the birth of my daughter:
I hope…we win the game.
I hope…I pass my test.
I hope…I make a lot of money.”

Hope” now has an entirely different meaning. My outlook has changed since my first 30 years.

It all changed when I heard those words, “Take her home and hope she smiles.”

Hope has given me the drive to seek out interventions and modalities that will improve Olivia’s life. It has given us strength when the road that we are on proves to be challenging and frustrating. It has secured my belief in the blessings of God.

Hope reminds me that no one is perfect, we all have challenges that we face. I am proud to be helping Olivia meet those challenges head on.

Hope drives me to find a way.

Hope doesn’t come without disappointments. I hope for her to see, talk, read and write like all the other kids. I hope for her to make lasting friendships. Hope-fully these accomplishments will just take a littlemore time.

Lastly, I need to mention what drives hope. What is the fuel that gives us hope? Only one word…LOVE

From September 2013 post A Whole New World

My occupation is an RN. Currently, I work as a course instructor at a school of nursing. My job is to educate future nurses. I spend hours preparing objectives, lectures, exams, quizzes and teaching on the clinical unit.

I admit that I feel guilty that I devote so many hours of the day educating others when I have a child at home in need of learning a basic function–sight.

I am concerned when I send her off to school will she be learning in an atmosphere and a way that CVI children need to learn.

I have to somehow learn to let go and entrust other people, other professionals, to do their job.

But do they really know about CVI and all that it entails? Are they good enough for my child? I believe every parent feels this way regardless of the situation.

I do understand how crucial these early years are in the development of her vision. It can improve. But how?

Traditional methods used for visually impaired children to learn do not work for children with cortical visual impairment. The educators need to realize this and be able…no, willing…to adapt her learning appropriately.

So my goal is to find that way. 

Bridging into Phase III on the CVI Range is a miraculous happening for my sweet Olivia. But the road through phase 3 seems to be a very complicated one. One that even the experts in the field don’t know how to conquer.

So I accept that challenge. I vow to find a way. My goal is for Olivia to reach a 10 on the CVI range. A 10 means that she functions as a child with no visual impairment would function. Why not? Why not attempt to reach for 10?

Remembering back to our NICU days about a week after Olivia was born, I remember one of the neonatologist saying to us, “Reach for the stars. If you miss, you have lost nothing.” This became our approach to Olivia and to her future.


Anna was instrumental in raising the funding that allowed the Pediatric CVI Society to achieve non-profit status.  Anna and Olivia have done some very creative fundraisers.  Even Olivia’s friends have risen to the challenge of supporting the PCVI Society.

In 2015, Anna’s efforts were recognized by the PCVI Society.  She was the first inductee to the PCVI Society Hall of Fame.

President Dr. Richard Legge said in his remarks, “Without ever being to a meeting, she dedicated herself heart and soul to making PCVIS a reality.”

I loved her speech about fundraising.  I think it resonates for many of us.

We fundraise for Olivia for a better future. I have a confession to make… The fundraising was completely self-serving.

I want better access to pertinent information about CVI. I want access to the professionals in the field. I want to know what the newest developments and research shows regarding CVI. I want to know the best interventions that can be used for children with CVI. I want it for myself and others in my place.

From the beginning of this journey I have been hungry. Hungry for knowledge, like most of you here. Parents, teachers of the visually impaired, speech therapists, occupational therapist, physicians, ophthalmologists… we are all want to be fed CVI knowledge. This society can feed us.
To start fundraising you first have to be willing to go out on a limb, get out of your comfort zone. Ask for donations. It can be scary, but jump in. We would jump into a pool to save our child if they are sinking to the bottom of the pool. We wouldn’t think twice. Jump in for our children. Save them.
Second; share your story, make a connection, and open up. Open up the dialogue with others about what CVI is. Keep your donors in the loop. Keep them informed of the ongoing fundraising, the intent and goals of the society, and the mission statement.
This past year, our supporters donated to our cause in good faith. I asked for donations to a Society, that wasn’t even a society…yet! And they did. The American Cancer Society started somewhere. This is our starting place.

Some of our examples of fundraising include a lemonade stand, an apple cider stand, thirty-one fundraiser, Jamberry fundraiser, Arbonne fundraiser. Other donations came from a fundraiser from Olivia’s elementary school, my co-workers that took up a collection for Christmas, other anonymous donations, and those that donated through the go fund me page. Don’t discount small fundraisers because they add up. If we all participate in fundraising, this society can grow even stronger and even bigger, helping more children with CVI.


 

Did she smile?  Yes!  And she hasn’t stopped!

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Moms on Monday #11 / Cheyanne from NV

This morning’s Moms on Monday is Archer’s mom, Cheyanne, a passionate parent advocate and fellow blogger.  Cheyanne started a blog about life with her beautiful boy  Archer at http://www.sparkingtheneurons.blogspot.com.

 

Hello, my name is Cheyanne.   I am a mother of a stunning, recently turned 4-year-old boy. His name is Archer. We reside in northeastern Nevada, with the ever important dad, and supportive husband Brandon.

Today I will be sharing some experiences to shed light upon advocacy for Cortical Visual Impairment. But first you need to learn a little more about what is so stunning about Arch!

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He loves to be outside, even when it’s below freezing! Some of the things he loves are finding and throwing rocks, digging in the sand and dirt, and catching rays of sunlight.  While doing all these fun things, his eyes are often closed, held at half mast, or his head is turned away from the actual action occurring.

The exhilaration of sounds, be that animals or vehicles provide a rich auditory experience sometimes creating little giggles or a deep focus, searching for understanding of the origin. Did I mention all the tactile opportunities an outdoor experience provides?

He enjoys sitting at the edge of a door and being a “gate master” opening and closing the door. Now there are many sensory needs he is meeting here. Including the need for movement, a CVI characteristic!

Recently over holiday break, he was frequently requesting to go outside. We began giving him the prompt of “stand-up and look for the round, gold, door knob.” By golly, there he went up on his own, standing against the door looking for the gold, door knob to twist, and open the door so he can go OUTSIDE! His treasures being with his peers, be that at weekly music class, preschool, or going on playdates.

What makes him laugh the most, deep into his belly is his DAD! Whether they are playing with balls, particularly his soccer ball, Elmo, snuggling and singing songs, or on the ground wrestling, his dad is the one to bring out a true authentic laughing session.

As a family we enjoy our down time together. We find it important in keeping a routine for Archer. Music, friends, school and the red garland lining his babysitters hallway are all important to him. After you finished reading this blog post, I invite you to jump over to his blog and read more stories about him growing into life, by visiting http://www.sparkingtheneurons.blogspot.com.

The day I learned about CVI will be frozen in my memory forever, at least in this lifetime. After months of neurology appointments, weekly EEG’s, and daily steroid shots to get infantile spasms controlled, it came time for our 3 month follow-up Ophthalmology appointment.

It was set to be the second time meeting with this particular doctor. At our first appointment he instantly gained Archer’s attention by making bird sounds! Connecting with our little one meant the world to us and made way for us as parents to relax, slightly! He took time to review the big, scary words that had been entering our life, as label after label kept adding up to be included on intake paperwork.

As parents we decided, that I could handle the “routine follow-up” on my own, and daddy went off to work. Archer and I stopped by the jobsite before the appointment and got a good luck hug and kiss from daddy, then off we went.

After asking some questions I thought were routine…

Does your son like to look at ceiling fans? Does he like to look out the window?  Does he ever cover his eyes as if to block out what’s going on around him?

I answered yes to all of these questions.

I added that the red crab on his mobile seemed to catch his eye and make him smile. I explained how we thought it was cute that he blocked his eyes, and joked that was him showing he wasn’t interested in the person trying to “goo-goo-ga-ga” over him.

If you have some knowledge of CVI your light bulb is glowing right now.

And NOW, I know what those questions were leading to.

The delivery of a one-page fact sheet on Cortical Visual Impairment and a referral to the state school of the deaf and blind.

I didn’t understand and was having a hard time letting this information be processed. The doctor re-assured me I would be contacted shortly to get further assistance from the deafblind school. I was in shock, so much shock that emotions were not even present.

I was blank.

I thanked the doctor and assistant, walked out into the lobby to make the routine follow-up and exited the building. Once getting to the car, I slipped into the back seat to breastfeed, my now hungry, fussy baby.

Feeling was coming back to my brain and body.  The hollow pit in my stomach started to burn, to pound, and to get tight all at the same time. I knew this was something big, but didn’t quite know the capacity this “new” label would have on our lives.

I decided to comfort myself with some lunch at a local pizza place. Carrying my baby into the restaurant, I quickly ordered and headed to the bathroom to change Archer’s diaper. Now with a full belly and clean bottom he dozed off to sleep.

I slowly unwrapped the folded single piece of paper and began to read. Disbelief struck as I read the tell tale signs of this diagnosis. My throat went dry, paired with my lungs expanding with deep, wide breaths to keep it together in this public place, not wanting to wake my sleeping child. I asked for a to-go box and paid for my food in a cluster of oblivion.

Again, I sat in the backseat with my stunning boy, admiring the silence of his sleep. It was then time to make the hour long drive home. I called my mom to let her know the appointment was over and that we got some news, but that we could talk about it later. I got on the road. Continuing with the wide, deep breaths, I made it through town and onto the interstate.

This is when the floodgates overflowed. I had to pull off at the next exit and take some time to cry it out.

Cortical Visual Impairment joined the list of diagnoses on this dreary last day of July in 2014.
Archer was just shy of 7 months old. At this point his diagnosis list consisted of the following:   agenesis of the corpus callosum (ACC), uncontrollable seizure disorder, infantile spasms, periventricular grey matter heterotopia (affecting the occipital lobe), enlarged bi-lateral ventricles, hypotonia, and an undiagnosed genetic syndrome, now determined to be a duplication on his 11th chromosome.

Archer’s team began building in Montana beginning with his primary care doctor and LPN. They stood by our sides and listened to us when we came in for our routine 5-day, 2-week, 6-week checkups.   I lost count after that. We knew from the MRI that challenges would be in our future.  These two ladies supported us in hoping for our family to have normal, loving experiences with our newborn. They helped us cherish the newness of parenthood and celebrated with us our stunning little boy.

Quickly, within weeks of Arch’s life, the discussion of which specialist to start with arose.
Those dreaded developmental checklists began. I didn’t get to give many checks in those days, I resorted to drawing smiling faces and our doctor kindly accepted this display of grief.

I quickly stopped reading my “What to Expect the First Years” book, I think by 8 weeks in.
Vision began to be a question I’d say around 4-6 weeks, when my little boy just wouldn’t look me in the eyes while breastfeeding. Occupational Therapy started by 3-4 months of age. He seemed to like the solid red ball.  He would turn away with items displaying combinations of colors and patterns.  The typical over-stimulating newborn toys! Physical Therapy services also started during the Spring of 2014. Yet, there wasn’t emphasis on incorporating strategies to work with his lack of visual engagement.

In August of 2014, we were connected with the state school for deaf and blind and had our first home visit, Archer was 7 months old. APH materials started coming, including a light box. Our biggest struggle was figuring out how to position either Arch or the materials for the best visual access.

We sheeted parts of our home in black fabric, Grandma’s too. We built a little black room for Archer to “play looking” in! It felt as if everything was being forced and nothing came naturally. We lined his highchair tray with black and adhered red duct tape around the edges. We put up a black tri-fold board at the dinner table, or anywhere he was exploring to reduce complexity.

All of these supports had been set-up, before we even opened a case with the state early intervention program. We were ahead of the curve!

By this point there was a never-ending amount of tabs and bookmarks constantly open on my phone and laptop. My new “hobby” of researching was overtaking my mind. Once the official “Cortical Visual Impairment” diagnosis sank in, we began seeing CVI, learning the 10 characteristics. Surprisingly with CVI being the #1 leading pediatric visual impairment in first world countries, we felt like the experts. Even more knowledgeable than most of the service providers, including neurology and ophthalmology, besides our TVI!

Our TVI was calm, quiet, gave wait time, and slowly educated me.  She intervened with  Arch without overloading him. He began to look at the big yellow bird puppet as she slowly moved it to identify strong visual fields. He started to look at mylar on the light box! She had been asking me questions that I didn’t always have answers to. For some I had clear definitive answers! Over a few visits I found out this was her slowly conducting the parent interview questions from Dr. Roman’s CVI Range! It was overwhelming at the time, but set a solid foundation for us to grow from. We found a conference to attend with Dr. Roman and had his first CVI range conducted.

Then we moved to Nevada, a state that is about 30 years behind the curve in vision supports. They have ocular VI knowledge, just not neurological CVI.  It wasn’t taught in their VI programs.

I was the solo expert of CVI on the team.  It felt like I was the solo expert of CVI in the state.

Goals and strategies were set and CVI remained at the forefront of services. There was consideration for most characteristics, besides the most in depth concept of complexity, especially sensory and auditory. He gained visual skills, but his auditory reactions were heavily out weighed. When items were presented with noise and banging he was sure to look.

I’ve heard Dr. Roman say over and over “vision must precede the action” and sadly this was not the case. The providers were open to learning, yet their caseloads were stacked so high it left little down time for “extra” learning outside of the home visits.

Archer transitioned out of EI in Jan 2017, we had the transition meeting, but his seizures returned and we choose to deny services until the Fall. This gave us time to get his health understood before adding more over stimulating situations.

Upon entrance to the early childhood center in Fall of 2017 I learned I was not doing enough to advocate for my child’s needs.
Advocacy begins in your home, with our family and friends. It is all too easy to clam up and keep quiet. Sometimes feeling like you are explaining things over and over, then these people are close to you so offense is taken. The challenge exists consistently.

Fear overtakes you when meeting the milestone of another person becoming the teacher of your child. And for most of us, the services list is long, and teams are big, making advocacy more daunting.  You can feel like you aren’t a part of a team but the outsider.

Mouths drop when I mention CVI accommodations, maybe because they can’t believe I’m requesting, or because the knowledge to understand CVI just isn’t there.

The team listens, it just takes awhile for the concepts to be put into practice. I initiated a CVI schedule built around his school day.  I requested a CVI endorsed team member and CVI Range assessments. They are all willing and open to learn, in fact 3 team members are expanding their knowledge by taking the Perkins 8-week CVI course! We must start somewhere and that is with our voice as our child’s advocate.

Looking back at our short journey of 3.5 years with CVI, in the beginning I wish I would have put more emphasis on latency. Waiting longer for him to visually engage.  NOT impatiently providing auditory cues just to get a reaction.

If your child has recently been identified as having CVI, first, just breathe. Then cry.  Then go outside and take a refreshing walk. Allow yourself to cycle through the grief.

Get connected. You may not understand the language, you will feel like you are studying to become a Ph.D. Your head will feel like it explodes, not on a daily basis, but possibly with each paragraph you read.

Keep going.  Ask the questions.

Ask service providers what their knowledge and understanding of cortical visual impairment is.  Ask if they have ever worked with a CVI student. You are not alone and your child has the right to receive appropriate CVI interventions.

For people that have never heard of CVI, may you know my child sees.

Cortical visual impairment creates challenges with the neurological visual processing of images. To help him understand his environment, use simple language to identify what is going on. He is always listening.  There is no need to be loud or make extra sounds. He will giggle at abrupt sounds.  Help him connect the sound with the visual components by explaining what he is hearing or seeing.

It is my hope you have read to the end!
It is my dream you will share this knowledge with others and keep the conversation going about this underserved population of children with CVI, the #1 pediatric visual impairment in 1st world countries.

Much Gratitude
-Cheyanne Sparks

Sharing a blessing… Help spread his soulful message
ARCHER’S JOURNEY

http://www.sparkingtheneurons.blogspot.com

Thank you Cheyanne for your courageous storytelling!