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!

IMG_5272

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!

IMG_1213

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! 

 

Moms on Monday #10 / Kate Keller from AL

We are going back in history for today’s Mom on Monday.

Since 2018 will be a year for determined (ok, fed up) parents to advocate for our children with CVI, I wanted to start the year with some historical perspective, and, perhaps, a different spin on a very familiar story.

You may recognize the last name of this particular mom from Alabama, just as you would recognize the name of her very famous daughter, Helen Keller.

We all know the story of “The Miracle Worker.”  Well, I hope we all do.  A few years ago, I learned that one state had dropped Helen Keller, her story and her books (The Story of My Life, Light in My Darkness, Optimism  & The World I Live In, to name a few) from their curriculum.  I don’t know if this is a common occurrence in today’s elementary schools.  I sincerely hope not because the story of Helen Keller’s life and her experiences with her gifted teacher, Anne Sullivan Macy, make for some of the most inspiring storytelling in American history.  Anne Sullivan Macy’s own harrowing childhood and fight for education makes her lifelong dedication to Helen Keller even more compelling.

Mark Twain coined the phrase, “The Miracle Worker” after he read of Anne Sullivan’s success teaching Helen Keller, a young deaf-blind child.  The Miracle Worker became the title of a play and a movie depicting Anne and Helen’s early days together.

It is a story of hope.

It is a story of determination.

It is a story of triumph over seemingly insurmountable odds.

And, as with every great story, there is more to it.

Before the story of the Miracle Worker could happen, there had to be parents who believed in miracles.

Kate Keller

Image:  Kate Keller

Captain Keller

Image:  Arthur Keller

In the 1880’s, after Helen was left deaf and blind following a severe illness at the age of 19 months, Kate and Arthur Keller spent years looking for a teacher who could reach her.   Their efforts went directly against popular opinion that children “like Helen” were not teachable.

Kate Keller wrote countless letters to schools and doctors across the country.  The Kellers often traveled for days from Alabama to see doctors in the northeast. They spent countless hours and dollars seeking out (often discouraging) “expert” opinions.

Years passed. As Helen grew more isolated, her behavior became more difficult to manage.  Relatives called Helen a “monster” and advised them to send her away.

That Helen did not languish in isolation and ignorance is the triumph of her parents who believed that  education (in the opinion of the time, “a miracle”) was possible.

Five years passed before the Kellers were introduced to Anne Sullivan.  Five years.

(As the parent of a child with CVI and multiple disabilities I have often said that the days last forever, but the years fly by.  I think about how long those five years must have been for Kate Keller.) 

helen and annie

Image:  A young Helen Keller seated on a chair holding a doll on her lap.  Anne Sullivan sits on the ground next to her.

 

Kate, Annie, Helen

Image:  Kate Keller, Anne Sullivan Macy fingerspelling into the hand of Helen Keller as a young woman


Helen herself once wrote,

“No pessimist ever discovered the secret of the stars…or opened a new doorway for the human spirit.”

She could have been referring to her own parents whose dogged optimism found the special teacher who unlocked Helen’s fierce intellect and compassion.


Over seven years ago, when my daughter entered the public school system,  I found myself in the uncomfortable position of educating school systems about CVI and convincing people that my daughter can learn if they would learn how to teach her.  

I found myself wondering how Anne Sullivan came to work with Helen Keller.  I wondered what the Kellers had to go through to find her.

I wondered what Kate Keller went through trying unsuccessfully to communicate with her daughter who could no longer see or hear.

I wondered how difficult it was to hope against hope in an age before the telephone, before IDEA, before the Internet.   I struggled to maintain hope and I have those things.

If you are living with a child with CVI (and possibly other disabilities) and you are finding it difficult to find resources or services that can help you and your child, you probably have an idea about how determined and discouraged Kate Keller must have felt at times.

You may recognize how those two conflicting emotions washed over her  – buoying her or drowning her – as she watched her once bright eyed daughter lurch through the house, biting and pushing anyone who kept her from getting her way.  You may have an idea about how desperate she felt to reach her daughter again.

I do.

As a parent of a child with CVI and multiple disabilities, I am grateful to Kate and Arthur Keller for their tenacity and their sacrifice.

Today’s parents are better equipped to fight battles of education and inclusion because of the struggles of parents like them.

Woodrow Wilson (one of the many presidents Helen Keller met in her lifetime) once said

“The man who is swimming against the stream knows the strength of it.”

In honor of Kate Keller and parents of children with CVI across the country and around the world I’d like to update this quote for you:

The mom who is swimming against the stream knows the strength of it.

From history and from our own experience, we know the strength of the stream….(sing along if you know the words)….  a surprising lack of awareness about CVI in the medical and education communities, too few Teachers of the Visually Impaired, no hard, accurate data on the numbers of children with CVI, too few providers/teachers with the specific training necessary to work with children with CVI, low expectations…..

We know the strength of the stream.

Thankfully, we also know that education is not a miracle.

It is a right for every child.

The miracles are the children themselves.

What we do for them will be the best work we ever do.

————————————————————————————————————

 

 

 

 

 

Moms on Monday #9 / Meredith from IN

Good morning fellow moms and dads of delightful children who happen to have CVI,

Today’s MOM is Lola’s mom, Meredith from Indianapolis, Indiana.

Meredith has become a super advocate for her daughter and for young children with visual impairments in Indiana and Kentucky.  She is one of the driving forces behind Visually Impaired Preschool Services Indiana (VIPS Indiana), a non-profit agency that provides ongoing, best practice early intervention for infants and toddlers with severe vision loss.  She is also one fierce rooftop hockey player.

I got to meet Meredith and Lola through VIPS Indiana when Lola was a baby.  It is hard to believe that she will be 7 in January.

What does Lola like to do? What makes her laugh? What are her favorite activities, foods, etc?
Lola loves to do most anything that involves being outside. She loves parks, playgrounds, swimming pools and she especially likes to help walk the dogs around the neighborhood.

Lola adores her brother although sometimes she doesn’t understand what it means to give him space so she easily annoys him. Their relationship is much like any other sibling connection; they love each other one minute and are fighting the next. Lola especially likes clothes and shoes. We never really knew if Lola could identify colors since she can’t articulate it, but it has become very clear that yes she can absolutely differentiate colors as she hates pink and purple! She wants to wear blues and greens much like her brother. I’m so proud that she can now take off and put on her own clothes—I just wish she’d stop doing it 18 times a day!

Lola’s father makes her laugh like no one else. Now that she is paying attention more to her surroundings, she’ll start laughing when she sees or hears us laughing and the next thing we know—we are all laughing hysterically and we don’t really know why! It’s very sweet!

Lola loves almost all food but her favorites are cookies, pizza, chips, grapes, spaghetti and cereal bars. She doesn’t care for raspberries or watermelon. I wish her weight reflected her love of food—we’ll keep trying to get some meat on her bones though!

What do you like to do as a family?
As a family, we like to find playgrounds that are visually accessible for Lola. It’s sort of become a weekend hobby which is fun because we have learned where to take her and where to stay away from. She really needs high contrast in order to keep from getting bumps and bruises. We try to not keep her in a bubble since the world itself is not Lola-safe, but when she is on a playground that is all brown—for instance—she really struggles.

We also like to go to places like Monkey Joe’s or sensory-friendly gyms. Lola’s ability to sit and partake in an activity with us has increased dramatically over the last year so we’ll play her favorite game which is Hungry Hippo and she likes to color as well as play with Play-Doh. She also loves going to her grandparent’s house so many weekends are spent with them as well.

When did you first learn about CVI?
You know, I had a feeling something was wrong with Lola’s vision from the very second I laid eyes on her after she was born. I was always told that we would immediately lock eyes which indicated, “I am yours and you are mine” but Lola never looked at me. I gave birth to Lola in Costa Rica as my husband and I were living there at the time.  My nurses didn’t speak any English so I wasn’t entirely sure what to ask.

Lola’s Apgar  scores were perfect and the OB-GYN assured us that Lola was a healthy baby girl. We took her home and waited for the eye contact to kick in, but it never did. She sort of looked over our heads as if she was looking at a ghost standing behind us. She also wasn’t reaching for toys and she wasn’t tracking. My mother’s instinct kept telling me something was wrong and I was right.

Lola started to have infantile spasms when she was four months old and treatment to get the seizures under control began immediately. I started researching other symptoms associated with infantile spasms and I came across cortical visual impairment (CVI). When I read the characteristics, I knew right away that Lola had CVI.

How were you given the diagnosis?
As I mentioned Lola was diagnosed with infantile spasms by a neurologist in Costa Rica who was incredibly knowledgeable and supportive. When Lola was about seven months old, Dr. Luna gave Lola the CVI diagnosis yet we were less than shocked as we already suspected she had CVI.

Does your child have other diagnoses you’d like to mention?
Lola has an extremely rare genetic condition called Bosch Boonstra Schaaf optic atrophy syndrome. There are only about 40 in the world with the condition although as genetic testing becomes more available, researchers believe several hundred will be identified. So I thought Lola just had these two conditions, infantile spasms and CVI, I did not realize they were actually “symptoms or characteristics” of something bigger. As it turns out—they are. Lola’s seizures are under control, but she still has CVI, hypotonia, global developmental delay, nystagmus, autism, and more. She sounds complex and I suppose she is, but to us—she’s just Lola.

How was your child’s Early Intervention experience with regard to CVI? 
Are you ready for a shocker? After Lola completed her steroids for the infantile spasms, she was immediately referred to a therapy clinic. When we first walked up to the house (which looked like any other Costa Rican house), I immediately wondered 1) if we were in the right place and 2) how on earth would anyone in this place be able to help my baby? I was grossly mistaken as we met Lola’s very first physical therapist, Moises.

lola-pt-costa-rica

At Lola’s very first appointment, Moises stood at a whiteboard and explained exactly what CVI was to us—graphics and all! It was so comforting to have this information even as upsetting as it was. I learned right then and there something that has stuck with me at every turning point in this journey and that is; knowledge equals empowerment. When you give me information, I feel confident that I can do something with it. And so Lola began to see Moises once a week for PT, but working on her brain “learning to see” was always an integral part of her therapy sessions. She also began to see the occupational therapist, Melissa, who again, challenged Lola’s visual pathway during every single session. We couldn’t have asked for better providers during those early months and we are forever grateful.

Were your providers knowledgeable? Were they open to learning?
Moises and Melissa were more than knowledgeable when it came to CVI. They didn’t have to learn a single thing because they truly understood how CVI was impacting Lola’s development. It was rather impressive especially for being in a foreign country.

So as wonderful as the healthcare system was for Lola in Costa Rica, we knew that long-term it would be better for her to live in the U.S. We moved back to Indianapolis when Lola was just under a year-old. We immediately enrolled her in First Steps, Indiana’s early intervention system.

In First Steps, we had access to a PT, an OT and a speech therapist, but when I inquired about who would be helping us with Lola’s vision loss, I was told there wasn’t really anyone. I called around and found that information to be true and, ultimately, very shocking. How could we have better therapists for Lola’s vision in Costa Rica than the United States? It made no sense to me. But I wasn’t going to give up as I knew how important the first three years of Lola’s brain development was so I persisted until I found someone to help. I met Annie Hughes who was a Teacher of Blind/Low Vision and she worked for Visually Impaired Preschool Services (VIPS), a nonprofit that provides early intervention to young children with vision loss. Vision-specific home visits began and I finally felt as if we found exactly who we were looking for as Ms. Annie was more than knowledgeable!

How do you feel CVI is addressed in your child’s school setting?
Lola attends an Applied Behavior Analysis (ABA) center called Access Behavior Analysis in Indianapolis. While the therapists at Access had not worked with a child who had CVI prior to Lola, they were more than open to learning about it and how to set Lola’s environment up so she could thrive. After some lacking in the public school system, Lola will now have access to a Teacher of Blind/Low Vision who will consult with the center so that everyone understands Lola’s vision loss and how to make the proper modifications for her vision.

What do you know now that you wish you had known at the beginning of your journey as Lola’s mom?
This is a good question. I guess I wish I had let go more. That probably sounds ironic given that as a special needs parent, we may never truly let go, but I wish I didn’t worry myself sick so much. It was all so unknown and unexpected, but Lola was my baby so how could I not worry?

I just wish I would have spent less time immersing myself in the internet and more time enjoying Lola for exactly who she was. I wanted answers though. I wanted to know what her future looked liked. I always wanted someone to look in their crystal ball and tell me that Lola was going to be OK and, of course, nobody ever could. Sure I still worry, but I’m not debilitated by it. I acknowledge that some days will be tough, but they are few and far in between now and I’m very grateful for that.

I also acknowledge that CVI is not the only reason why Lola is delayed. Sure it is part of it, but I have now recognized that Lola is delayed because of her genetic condition. When she wasn’t walking at the age of three, I’d say, “She’s not walking because she’s visually impaired.” Now, I know that children who are completely blind can still walk even at an early age. I just wasn’t really willing to accept that she will always be delayed in some way, but that doesn’t mean she stops progressing. We celebrate the big, gigantic milestones as well as the tiny, most wouldn’t even notice inchstones! They all matter to us!
What would you tell a mother whose child has just been identified as having CVI?
You are not alone is the very first thing I would say. I think I would say please try your absolute hardest to not compare your child with others who have CVI (or even neuro-typical kids as well) as it’s just not healthy for you. I would also say that it does get easier over time. I remember when the ophthalmologist said Lola was legally blind and I about lost it, but what I realized is that Lola was still Lola. Those few extra words didn’t change a thing in that very moment. And honestly, having diagnoses will give your child access to MORE therapies and services. But I used to worry about CVI every day when she was little and now it’s not the first thing on my mind when I wake up. In fact, it’s the one of the last things I think about because CVI is just a part of our lives now.

What would you like for people who have never heard of CVI to know?
I would probably give them my normal CVI spiel about what CVI is, that many times CVI can improve over time (Lola can now see something as small as a raisin on the floor), that even though Lola’s vision has improved she still struggles greatly with her vision, and I’d like them to know that I have no idea how Lola sees the world. I’m willing to give just about anything to have a glimpse of how Lola interprets her surroundings, but I realize that may never happen.

Anything else? Hopes and dreams?
I think we are inundated with what society believes “success” of a child is. It means straight A’s, Honor Roll, graduating from high school, going on to college, finding a love to marry, having children, finding a career, and lots of other stuff in between. I’ll admit that I drank the Kool-Aid, too. When I was pregnant with Lola, my dreams for her were different than what has become her reality, but it’s OK.

View More: http://broadphotography.pass.us/howellfamily2016

Success for Lola means she’s happy, healthy, she loves, and she is loved. That’s all I want for her. Well, I kind of want her to move out someday, too, so I can catch up on nearly seven years of interrupted by Lola sleep!! But in all honesty, I just want Lola to be in a safe environment where people who know and love her look after her. I’m often asked if Lola will live with us forever and my immediate response is “HELL NO!” Now that’s not because I wouldn’t want Lola to live with us until the day I die, but how unfair would that be for her? She’s only six and she already wants to be out of the house so imagine when she’s 22. While she has her challenges, she knows she wants independence and we are going to honor that. She will always need help, but I will die more peacefully knowing that I have her support system in place so that she can live life without me. That’s so hard to write and perhaps I’m sharing too much, but my job as her mother is to think about her future. And Lola’s future will include lots of caring people because it does indeed take a village the size of China when you have a child with special needs.

 

Thank you Meredith and Lola!  

Moms on Monday #8 / Rebecca from VA

Good morning fellow CVI families,

Time is a precious commodity in the lives of parents of children with special needs.

The never-ending loop of Christmas songs in every public place and the constant parade of UPS trucks in your neighborhood means holidays are just around the corner.

During the holidays, the disruption of our routines and schedules makes life more stressful and time even more precious.

Dr. Roman-Lantzy says, “CVI moms are the busiest people I know.”  Now is not the best time to be writing up your story for a blog for other parents. You are in the throes of making holiday magic happen for your family.  That is what we do.

Since I have posted all of the Moms on Monday stories sent to me thus far, I will be today’s MOM.  And, because, I am today’s MOM, this post is late because that is how I roll (or write, or whatever, you know what I mean).

Maybe, after the holiday festivities are over, in the calm of the new year, you will consider sharing some of your stories with us.

Introduction:  I am Rebecca, Eliza’s mom.  She is 11 years old.  We live in Virginia.

(Fun fact:  Over the past 11 years, we have lived in 4 states.  Eliza was born in California.  She received early intervention in California and Indiana.  She has attended schools in Indiana, Kentucky, Florida, and Virginia.  Out of necessity, I have learned a lot about the differences between states in early intervention, early education and public school services. And, BOY, are there differences.) 

Here she is at about 11 months old.

Baby_E[1]

 

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

Eliza is a social, curious and loving kid. She loves to be near other people, especially other children. Listening to other children playing makes her very happy. Her older sister is her favorite person on the planet. Eliza’s dad can make a noise that makes Eliza giggle like crazy every time. Her favorite activities include going for a walk, swinging, listening to music,  swimming, and jumping on a trampoline.  As a family, we go to the park and take long walks outside when weather permits.  We also take her to the pool as often as we can.

She LOVES music.  We spend a ridiculous amount of time changing the songs on her IPad or her CD player.  If I never hear Waterloo by ABBA again, it would be too dang soon.  I have Ziggy Marley’s Family Time album playing in my head right now. Also, I think we paid for Laurie Berkner’s car by incessantly playing her YouTube videos.  You’re welcome, Laurie Berkner.  My older daughter and I can sing a Laurie Berkner medley at any given moment.  Not everyone can say THAT, now can they?  Silver linings and such.

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

We knew before Eliza was born that she would have some challenges ahead.  We just didn’t know exactly what those challenges would be.  We were given the grimmest prognosis during the third trimester of my pregnancy before we even got to meet her.  That’s another story entirely.

At 4 months old, Eliza wasn’t tracking anything.  We took her to a pediatric ophthalmologist who called it  Delayed Visual Maturation and told us her vision would eventually develop normally.

“Don’t buy trouble,”  he told me. (Hmmm, well,  Dr. Expert Guy Mansplainer, maybe I’ll just rent trouble and see how it feels.

CAN I JUST SAY HOW ANNOYING and CONDESCENDING THAT PHRASE – Don’t buy trouble – IS? 

How many times are mothers of children with special needs or medical issues dismissed by a doctor who “knows better.”  Too many.  ARGH.)

Which leads me to the truest thing I have ever seen on the Internet.

that which does not kill me

A neuro-ophthalmologist assessed Eliza’s poor vision at 9 months old.  He diagnosed Cortical Visual Impairment and Optic Nerve Atrophy.

We received a diagnosis, but, we also got the expert opinion from the neuro-ophthalmologist.

His expert opinion:  CVI may improve.  It may not.  There is nothing you can do about it.  Wait and see. Take her home, treat her like a blind child, and come back to see me in a year.  

And, what do we know now – 10 years later?

He was so very wrong.

I did not know how wrong he was, but, I could not accept that I would just go home and do nothing.  Just wait and see?  Moms do not work that way.  My heart could not accept his “expert” opinion.

I began researching CVI.  I bought Dr. Roman-Lantzy’s book.  I emailed her.  We met her in a hotel room in California where she was attending a conference with her husband, George Clooney.  (He loves it when I say that.)

Slowly but surely, we learned as much as we could about CVI and made accommodations to Eliza’s home environment.

AND, a year later, after we had worked on developing Eliza’s vision at home, when we followed up with the same neuro-ophthalmologist, he had this to say:

“I do not understand how her vision has improved so much.  I would not have believed it if I hadn’t seen it myself.  I don’t know what you are doing at home, but keep doing it.”  

This was when I handed him the copy of Dr. Roman-Lantzy’s book I bought for him.

I told him I knew he couldn’t “fix” CVI.  The prescription for CVI is educational modifications and strategies specific to each child’s unique learning needs.  It is education for parents, caregivers, and teachers about how the child has access to the world.

I told him I did not expect him to know how to address CVI, but I did expect him to stop telling parents to “Wait and see. There’s nothing you can do.”  I expected him to tell parents about educating themselves about CVI and to expect improvement.

He is still speaking to me, so I think it turned out okay.

Does you child have other diagnoses?  Yes, microcephaly and pachygyria of currently undiscovered cause, CP, epilepsy, global developmental delay, autism (age 4)

How is/was your early intervention experience?  How much time do you have?

000_0002 [325201]

A decade ago, there was very little consistent information about CVI on the internet.  Dr. Roman-Lantzy’s book was still new.  None of the early interventionists in vision loss in California had heard of CVI.

When we moved to Indiana when Eliza was 2 and still eligible for another year of early intervention, I discovered that Indiana did not have ongoing early intervention for infants and toddlers with vision loss.  Just didn’t have it.

Indiana offered families of young children with vision loss a yearly – roughly 2 hour- consultation from one teacher.  A fantastic teacher (Miss Annie from the Blue Bowl Story), but ONE teacher, nonetheless, for an entire state.  She had a caseload of over 300 families.

HOW IS THAT OK?  (It’s not,  but that is another story entirely.  That one has a happy ending, though, for another time.) 

Did I mention – that which does not kill me

I did the best I could to inform the early interventionists and therapists we’ve had over the years about Cortical Visual Impairment and the importance of ACCESS for children with vision loss.

ACCESS is what it is all about – whether the child has low vision from another diagnosis or CVI.

No therapeutic or educational program is going to work for your child if your child cannot access it. Yes, I’ll keep saying ACCESS until I’m blue in the face or every child has actual ACCESS to learning whichever comes first.  (A bluish tinge is more likely I think.)

Imagine you are sitting in a room and the answers to all of life’s most important questions are written on the walls around you – glowing in golden paint.  But, when you open your eyes, you see squiggles, shapes, and lines.  It could be hieroglyphics for all you know.  It has no effect on you whatsoever.

It does not matter how much brilliant, life-enhancing, brain stimulating information is around you, if you can’t reach it.

This seems like common sense.  It is.  But, it is astounding at how many typically sighted folks cannot learn this lesson.

How is CVI being addressed in your child’s school setting?  

I have been the person who has brought up CVI and the issue of access at every IEP meeting we’ve had in every state we’ve lived in.  In her current placement, it has taken me the better part of 3 years to get CVI acknowledged, and to get the school district to agree to getting training for teachers, TVI, and support staff.  It is an ongoing process.  There are ups and downs. I’m learning a lot.  That is all I’ve got right now.

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

Honestly, I wish that I had spent less time seeking out therapy after therapy.  I wish I had had regular access to an experienced TVI early on in Eliza’s life who could have told me to slow down.  I wish I could go back and tell myself that no one has all of the answers here and to trust myself more.

I wish I had known that the love and bonding time we had were as important as any hour spent in a clinic.  I wish we spent fewer hours in a clinic and more hours laying on a blanket watching the clouds float by.  Okay, technically, I’d be watching the clouds, but we’d be doing something together.

I also wish I knew as much about CVI as parents today know about it. There has been a lot of new, incredibly useful information to come out of Dr. Roman-Lantzy’s years of study and research, the work of Dr. Gordon Dutton, and Matt Tietjen’s What’s the Complexity framework.

I wish I had asked for more help.  I wish more help had been offered.

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

You are not alone.  There are resources available.  There is a community of parents who have faced similar challenges.

Be gentle with yourself.  Be gentle with your child.  The foundation of any child’s success is the love and trust that grows between a child and her parent or caregiver.  It starts and ends there.

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

This is a population of complicated children, many of whom have survived because of the miracle of modern medicine.  It is time to recognize them and to rise to the challenge of meeting their needs.  There are more children with CVI than you know.  We need your help.

Hopes and dreams? 

My hope for Eliza is to help her get so independent that she develops her own hopes and dreams and that she has a way to tell me what they are.

One of my dreams is that every child with vision loss (whether or not the diagnosis is CVI) gets the educational support she needs from an early age to become independent, productive, and joyful.  Here is my definition of JOY  by the way. eliza in the car

 

P.S.  It would also be great if  no pediatric ophthalmologist or neuro-ophthalmologist ever again tells a parent of child with CVI that there is nothing she can do.

Maybe we will work on that in 2018.  Hmm?

 

 

Moms on Monday #7 / Gunjan from PA

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

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

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

gunjan and maryanne

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

Introduction: Gunjan, Krish, 5, Pennsylvania

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

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

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

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

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

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

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

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

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

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

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

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

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

I was tired ALL THE TIME. 

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

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

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

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

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

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

 

 

Moms on Monday #6 / Kathryne from LA

Good Morning and Happy Cyber Monday Fellow CVI Families and the People Who Love Us!

Today’s Mom on Monday is Kathryne from Louisiana, mom to “Little C.”   Kathryne manages Little C’s care while working and providing spot-on advice to many new mothers of children with complicated diagnoses on CVI Facebook pages.  She has also actively advocated on a local, state, and federal level to maintain Medicaid for children with pre-existing conditions and to improve educational outcomes for children with CVI.

Mom: Kathryne H. 

Child:  “Little C” / 21 months old 

Cause of CVI: Infantile Spasms, or, yet to be diagnosed genetic cause

Topic: Hospitalization and Regression

During the first 6 months after Little C’s diagnosis of Infantile Spasms, he was hospitalized at least 5 times before he was diagnosed with another rare neurological disorder called paroxysmal sympathetic hyperactivity. 

Hooked up to all those monitors, there is very little to do other than lay in bed, especially for a developmentally delayed child who cannot roll, sit, walk, etc. Any time we had an extended hospital stay we always ended up back at square one for therapies.  Rarely did we ever receive inpatient PT or OT, except for maybe 1 hour during the stay to show us what we should be doing (you know, if those cords and NoNos on the IVs did not make it impossible).  So, of course, there was regression after every hospital stay.  

After Little C’s CVI diagnosis, we purchased a set of light up LED pool toys.  The shapes change color, but can be set at 1 color which is perfect for CVI as kids move through the phases. 

They are called Floating Light Up GeoShapes – Color changing light for patio, pool, or home 4 pack.  https://www.amazon.com/dp/BOOKFMG12E/ref=cm_sw_r_cp_apa_6B5eAbPSZCGJV

During our first extended hospital stay we brought the sphere (dubbed the Ood ball by his Neurology team) to Little C’s hospital room.  

This was when I discovered that extended hospitalizations are the perfect time and place to exercise the brain for vision.   Most rooms are clean white and the scenery never changes.  The room is so dull and boring; it is perfect for our kids.  For the first time, Little C began to use his vision to look at something other than the ceiling.  The hospital even had Elmo, Big Bird, and Cookie Monster in the gift shop.  

We actually had a skill improve IN the hospital.  

So, naturally, what do you think happened during the next hospitalization?  We came prepared.  We purchased one of the lights that shines scenes on your house that is sold in stores at Halloween and Christmas.  You can find snowflakes, ghosts, or, in our case, just a blue kaleidoscopic image.    

When Little C was not storming, his room was an oasis with lullabies playing on the IPad and lights dancing on the ceiling.  And, of course, there was his Ood ball, Elmo, Big Bird, and Cookie Monster.

In spite of the hospitalizations, Little C has managed to improve from Phase I to Phase II. 

Unfortunately, I can’t say the same for his other skills. 

Thank you, Kathryne and Little C.   After a successful Thanksgiving, I wish you both better days ahead.  

 

Seeking More Moms for More Mondays

Hello Fellow Mothers of Beautiful Children Who Happen to Have CVI,

We need more Moms on Mondays.

Okay, I do.  I need more Moms on Mondays.

I have thoroughly enjoyed hearing from all of the mothers who have contributed so far.  I learn something new every time a mother shares her story.

Thank you to Jessica, Mary, Subarna, Tiffany, and Lauren.  And, as always, thank you to Bernadette Jackel whose CVI mom experience can be found under The More Things Change widget on the CVI Momifesto home page.

I imagined Moms on Monday as a site a sleep deprived mom might find at 2 a.m. when she has finally gotten her child back to bed only to find that she is too tired and worried to get back to sleep herself.

Just over 10 years ago, when E was a baby, I felt more alone than I have ever felt in my life. The gradual realization of just how many challenges she would have to overcome pushed me farther and farther from “typical” conversations. I became less capable of small talk with friends or “cute kid” anecdotes shared over coffee with other moms.

(FYI New CVI Moms:  A lack of cute anecdotes, mind-numbing sleep deprivation, and an IV drip of caffeine for survival makes you less desirable company at the weekly playgroup.  Also, your new deep purple undereye circles and recent lack of personal hygiene don’t scream “I’m available for small talk!”

Then again, maybe you are remembering to wear deodorant and to rinse conditioner out of your hair more often than I did.  If so, winning! )

If you haven’t lived it, it’s hard to explain the impossible combination of utter physical exhaustion and adrenalin fueled hypervigilance that thrives in mothers of children with special needs.

I personally found that early morning hours were the worst for this cruel phenomenon.  My whole body ached from being awake for too many hours, however, when I closed my eyes, my mind reviewed notes from the day’s therapy sessions or dissected an earlier conversation with the expert of the day.  Sometimes I’d remember that I had an older daughter and was supposed to bring snacks to preschool in 4 hours.  Good times.

Basically, my off switch was broken.

So, I’d get up and start looking up my questions online, or rummaging through my pantry for preschool snacks. (Water chestnuts and saltines, anyone? Anyone?) Those 2 a.m. research times can be very dark and lonely.

Finding stories from other mothers in the middle of the night when you feel as though you are the only person carrying the weight of your child’s world on your shoulders may be a source of comfort.

It’s equal opportunity comfort as well because it also works for middle of the day, afternoon, and evening worrying.

AND, I think we all know that if there was a marathon for hypervigilance and worry, a special needs mom would win it hands down.

We.  Never.  Close.

We never close, but our befuddled brains play mean jokes on us.  For me, after another  night of consoling, bouncing, and worrying, I’d drag myself into a closet.  Then, I’d realize the closet was not the shower.  So, for a moment, I would forget just why I was standing in the closet.  Then, I’d shuffle off to the shower.

I would stand, head bowed to focus the hot water on my aching neck. Staring absently at the tiles on the shower floor, the Barry Manilow song “I made it through the rain” began playing in my head.  Every. Single. Morning.

And, no offense, to 70’s soft rock, or Mr. Manilow, but I am NOT a fan.

It seemed less an anthem, and more of a mean spirited joke produced by my declining mind.

Sometimes I’d find myself wondering which was worse, the new routine of 4 hours of nonconsecutive sleep, or the promise of being serenaded by Barry Manilow in the morning.  (Again, it’s not YOU, Mr. Manilow.  It’s me.)

This is your brain on hypervigilance.

But, I digress.

Please consider joining us in creating a place where moms can find a story they may relate to, or, at least,  friendly company in the chaos.

A place where moms can find themselves “respected by the others whooooooo got rained on toooooo and made it throooooooough.”

Forgive me.  I’m not proud of that.  But, it was right there.  (See how annoying it is?)

I came up with some questions you can answer (see below), or do your own thing.  There is no right way to share your story.

Send it to info@cvimomifesto.com.

I will notify you before your story is posted to confirm your permission to share.

Moms on Mondays

Introduction: Your first name, your child’s first name and age, the state you live in
(If you would prefer to use an initial instead of your name, fine! If you’d like to share a picture, great!)
About your child: What does she like to do? What makes him laugh? What are her favorite activities? What do you like to do as family?

When did you first learn about CVI?

How were you given the diagnosis?

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

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

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

What do you know now that you wish you had known at the beginning of your journey as your child’s mom?
What would you tell a mother whose child has just been identified as having CVI?

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

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

 

Thank you for your consideration.  Thank you for your company.

sorrows borne

Moms on Monday # 5 / Lauren from PA

Good Morning Fellow CVI Families and the TVI who love us (okay – put up with us),

This week’s Mom on Monday is Lauren, mother to 20-month-old Emma.

Lauren started a blog about her experience at Emma’s mother, Emma Bear’s Journey. Their unfolding story can be found at https://emmabear.org.

From the blog:

About me and Emma

I am a full time stay at home mom of an absolutely beautiful and amazing 13 month old girl named Emma.  She was born with hydrocephalus and later developed craniosynostosis during her first few months of life.  She’s been through more in her brief time here than most people will experience in a lifetime.  I admire her strength, resilience and fighting spirit.  This is her journey as well as mine.

Like a lot of children with CVI, Emma faces significant medical issues.  Their successes and challenges are very familiar to my experience as E’s mom.  She openly discusses many of the issues mothers of children with complicated medical diagnoses face – seizures, medical procedures, sleep deprivation, and the roller coaster of emotions that go along with all of this.

She has posted about a lot of CVI DIY projects that have helped Emma begin to use her vision.  The lighted tray and her method of simplifying board books are a couple of helpful strategies.

Lauren also moderates the closed Facebook group, Parents of Kids with Developmental Delays.  It is a great resource for parents to share and to ask questions.

Thank you Lauren and Emma!