Moms on Monday #22 / Hope from CT

Good morning fellow families of sparkling children who happen to have a diagnosis of cortical visual impairment!
Today, Hannah’s mom, Hope tells us about her feisty 4-year-old daughter and how she came to be diagnosed with cerebral/cortical visual impairment (CVI).

Hope and her husband, Rob, welcomed their first children, boy-girl twins at 24 weeks, 5 days gestation. When the twins were 18 months old, Hope was inspired to begin taking online classes at UMASS-Boston towards an M.Ed. in Vision Studies. She explains that by becoming a teacher of the visually impaired (TVI) she hoped to learn everything she could to help Hannah’s twin brother, Joseph. Joe was diagnosed with low vision due to retinopathy of prematurity (ROP).

As a student in Ellen Cadigan Mazel’s class on cortical/cerebral vision impairment (CVI), Hope began to suspect some of Hannah’s unusual visual behaviors may have resulted from her complex medical history following birth. Hannah had significant complications following birth as a micro-preemie weighing less than 1 lb 8 ounces including intraventricular hemorrhage (IVH) leading to post-hemorrhagic hydrocephaly (PHH) which required the placement of a shunt (when Hannah was 3 months old) to divert excess cerebral spinal fluid from her brain to her abdomen via a ventricular-peritoneal (VP) shunt.

Ellen Cadigan Mazel, Hope’s CVI class instructor encouraged her to have Hannah formally assessed.

Hope is writing today to encourage parents who suspect their son or daughter may have CVI to seek an expert opinion.

Hope also wants to encourage anyone reading this post to consider a career in vision studies. (Editor’s note:  Yes!  Yes!)

There is a growing need for TVIs, and COMS (Certified Orientation and Mobility Specialists) and there are openings in nearly every state.

Parents in or near New England can learn more about the UMASS-Boston program by visiting the website https://www.nercve.org/.  Also, federal grants are available at some learning institutions to offset the cost of the degree.  Parents could contact their bureau or agency for the blind for advice on finding a vision studies program near them.

Hope is extremely grateful to her son and daughter’s educational consultant from DORS-BESB, Gail Feld, who left a brochure about becoming a TVI for Hannah and Joe’s babysitter. As a result of finding the brochure, Hope found out about the program at UMASS-Boston. Hope also wishes to express her appreciation for Joe and Hannah’s educational teams for their optimism, enthusiasm, and innovative steps they have taken to give her children the access to learning which has brought them this far.

Hope's twins

Image:  Joe (a little boy in a blue t-shirt and jeans)  and Hannah (a little girl in a yellow hat,  pink t-shirt and jeans) take a break by sitting on the rear stairs of one of the vehicles at a Touch-A-Truck event.

What can you tell us about Hannah?

Hannah is a strong, loveable and capable little girl. Complications of premature birth left Hannah with hemiplegia of her left arm and left leg. She has not allowed this to slow her down one bit! She wrestles toys away from her twin brother, Joseph with ease and then gallops away. When Hannah sets her sights on something there is no stopping her. She has a drive to learn and a passion for letters and numbers. Her greatest strength is her memory. Her favorite person is her father, her favorite place is the beach or pool, and her favorite things are books and television.
We came to suspect Hannah might have CVI at around age 3. At a team meeting, her Pre-K teacher related a story about Hannah’s affinity for a yellow spoon (color) which she would reportedly always look for and gaze at for long minutes during free-choice play. At home, color seemed to be an important element for Hannah in objects she was attracted to. She would always try to get her hands on the can of Pam ® cooking spray. Whenever this distinctive yellow and red can was near the edge of the counter, Hannah would try to reach it. Once I learned about the ten characteristics of CVI from Ellen Cadigan Mazel, my professor at UMASS-Boston, I began to suspect there was more to this “quirky” behavior.

I asked Hannah’s TVI, Peggy Palmer, if she thought it might be worth assessing Hannah for CVI. As it turned out—it was! Hannah’s results on Dr. Roman-Lantzy’s CVI Range put her in Phase III. The best outcome as far as Rob and I are concerned is that strategies for supporting children with CVI in the classroom, once implemented, made learning available to Hannah even before she was formally diagnosed, at age 4, with CVI by her ophthalmologist, Dr. Tara Cronin.
The diagnosis of CVI gave our family and the educational team a rich context for understanding how color could be an anchor for Hannah and why complexity inhibited her learning. For me, I finally began to understand my daughter’s unexplained behaviors. For example, when we brought Hannah to the toy store or library to pick out something “new”, she would consistently gravitate toward books and toys she already had (novelty). Her preschool teacher came to understand Hannah could attend to the activities of circle time ONLY if she were provided with hands-on materials to ground her in the activities of the meeting. Hannah’s physical therapist came to see Hannah learns best when verbal directions are given first, BEFORE actions are modeled with NO talking (complexity).

Now that Hannah is approaching kindergarten age, the biggest hurdles she needs to overcome are social. Hannah struggles to name classmates accurately UNLESS she is provided with auditory or other clues as to their identities (prosopagnosia).

What lessons has motherhood taught you?

Hannah and her twin brother, Joseph have taught me I need to be a strong and confident leader—even on those days when I do not feel strong or confident. While it is important to listen to what medical and educational professionals have to say, at the end of the day you need to trust your instincts. You alone are the true expert when it comes to your child and no one has a greater interest than you in his or her wellbeing.

Hope and butterfly twins
Image: Hannah (a little girl in ponytails holding a green stuffed animal), Hope, and Joe (a little boy in a blue baseball cap and glasses) on his mother’s lap.  They are relaxing on a butterfly shaped bench at Magic Wings in Dearfield, Massachusetts.

Another thing Joe and Hannah have taught me is that all children can—and do—learn. Behavior is the result of learning. If a child has behavior—whether it is functional or not—it is the result of learning. As our children’s first teachers, and later as their educational advocates, we need to make sure there is a match between our child’s availability to learn (attention) and the appropriateness of his or her environment for learning (access).

What advice would you give the parents of a child newly diagnosed with CVI?

Be the “help” you think your family needs. I am proud of the parent I have become as a result of all the challenges my family and I have overcome together. I have grown into a question-asking, action-taking, resistance-battling parent. While I do my best to give everyone the benefit of the doubt, I seek my own answers and have—by becoming a TVI—gone to great lengths to become more capable of understanding my children’s visual diagnoses.

No degree is required to stay abreast of best practices in the education of students with visual impairment. Family Connect provides a host of free resources for parents of children with visual impairment and blindness.   Organizations like NAPVI and NFB’s POBC offer opportunities for families to network. Rob and I are most appreciative of our families, friends and co-workers who supported the four of us through the past few challenging-but-transformational years.

It has truly taken a village to raise our two resilient and amazing children.

Hope sesame place

Image:  Joe, Hope, Hannah, and Rob visiting Cookie Monster at Sesame Place

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Another piece of advice I have is this:  Believe in resilience.

One neonatologist, Dr. Gruen, assured us that despite their extensive brain bleeds (intraventricular hemorrhages) and ROP (retinopathy of prematurity) our children would go on to have remarkably good outcomes. He knew this, he said, because Hannah and Joe had caring, educated parents who were involved in their day-to-day care. He assured us that between early intervention services and lots of love, our twins would have “everything they needed”. And he was right!
It seemed, in those early days, that what the twins needed was something only “expert” others could provide. Day and night, nurses and doctors intubated, extubated, and re-intubated the babies who seemed to be in a constant struggle to survive. It was two weeks before their skin was deemed “intact enough” that we could safely reach a hand into their incubators and touch our own children. For ten precious minutes at a time, I held my hand flat on the back of one or another sleeping baby. Under that hand was a little person who found themselves in a world an entire trimester too soon. But they were here, and we would do our best to keep them here.

Before their eyes were even open, and before we were ever able to hold Joe or Hannah, Rob and I read to them through an open “port-hole” in each incubator. The host of readers grew to include grandparents and friends. As a result of all this TLC, Joe and Hannah have developed a deep love of books. On more than one occasion, each child has insisted on carrying a book into bed with them as one might a favorite stuffed toy or a blanket.

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If I could go back in time and give advice to my former self, it would be this:

1) Ask plenty of questions.

2) Accept resistance as a lack of understanding (of CVI).

3) Place trust in those who have earned it.

To this I would add: trust yourself above all others because—and believe me on this—no one cares more about helping your child achieve his or her best educational and medical outcomes than you and your family do.

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On Asking Questions

From the time they began to open their eyes in the NNICU, I was filled with questions about Joe and Hannah’s unusual visual behaviors which I did not ask. I was busy asking lots of other questions. I wanted to understand the implications of their high and low (blood) lab values, I would ask how long the treatment for NEC (necrotizing enterocolitis) would last and how long it might be before Joe and Hannah would be well enough for us to do skin-to-skin care.
Soon, I started to observe some unusual visual behaviors almost from the time their eyes were no longer covered with light-therapy sleep-shades. One twin was staring up at the lights while the other seemed photo-phobic. I had questions. I did not ask all of them. Why not?
First, I had the feeling I should accept my children’s unusual visual behaviors. I suspected that any vision differences were a consequence of their premature birth and were to-be-expected. When our children were born 16 weeks early, we were told each baby had a 50/50 chance of survival. They were fighting for their very lives, not striving towards the next developmental milestone. Three months had gone by and Joe and Hannah’s “age-typical” peers were still in-utero; there were no “age typical” peers to compare them to.
Second, I held back from asking all the questions I had because of a sense that I (or we) had already asked enough questions. I had the irrational belief that if I exceeded some perceived “quota” of parent questions it would in some way slow down the progress of the care-team. The meetings ran close to an hour as it was, and, after all, weren’t we lucky to even be permitted a seat at the table?

What does Hannah like to do? What are her favorite activities? What do you like to do as a family?

Hannah loves to laugh. She has the most infectious laugh and almost anything silly will make her giggle. She especially likes when grown-ups make mistakes, such as mixing her up with her brother, Joe and calling them by the “wrong” names. As a family we enjoy swimming and going to the beach to build sandcastles.

Hope and Hannah at Science Center

Image:  Hope and Hannah pose with Splash (a large colorful fish sculpture) on a recent trip to the Connecticut Science Center.

What do you hope to do as a TVI you were not able to do as a parent?

I look forward to working with children with CVI and other visual issues because I know I can direct them toward resources I know from first-hand experience to have been helpful. Not everyone is ready to “join” a parent organization but I want my clients to know they are not alone. Other people are going through the same or similar experiences. It is my hope to support those individuals who are ready by helping families find each other, network, and come to consensus about what needs to change at a systems level.

What do you worry about?  What changes do you feel are needed?

Right now, I think there is a need for more information about CVI to be made available to education professionals starting with TVIs. The UMASS Boston program made a course on CVI a requirement for all TVI candidates. Other programs need to follow suit. Personally, I would be happy to speak to pre-service teachers—special educators especially—to provide some training on the characteristics of CVI. As a parent of a child with CVI and a newly minted TVI I feel I could provide an overview of this public health crisis and its causes. My goal would be to introduce them to some modifications and accommodations which can be of help to all students but especially to kids with CVI. I plan to start by reaching out to colleges and universities close to where I live in Connecticut.

As a TVI and a parent I worry about children with CVI who need appropriate services but for whatever reason are not receiving them. Also, I worry about the state-by-state criteria for low vision services. I believe every child whose CVI impacts their access to the general curriculum should be eligible for low vision services regardless of the results of their visual acuity test. Some parents are hesitant to bring their children with CVI for a low-vision exam. They are fearful a near-normal visual acuity result could cause their needful children to be identified as NVI (Not Visually Impaired) when, in fact, they are impaired.

Big and little changes are needed.

The time is NOW and the power is US.

Thank you, Hope!  I absolutely agree.  I have learned so much from your story and your dedicated efforts to become an expert for your children. 

There is a national shortage of teachers of the visually impaired and certified orientation and mobility specialists.  This is part of the reason it can be so difficult to find educators trained in working with children with CVI.  With parent advocates/TVI like Hope, the time IS now.  

 

Moms on Monday #21 / Jennifer from PA

Good morning fellow families of radiant children who happen to have a diagnosis of cortical visual impairment.

Today, Rheanon’s mom, Jennifer tells us about her curious, joyful, 10-year-old daughter.  She also shares her frustration in her attempts to get Rheanon access to her educational environment.

Rheanon and brotherImage: Rheanon, a smiling girl standing behind her brother draped over a reverse stander.
Rheanon and famImage:  A smiling family (Mom/Jennifer, Dad/Greg, brother/Chase and Rheanon) in their Sunday best standing outside in front of a fountain on a green lawn.

What does Rheanon like to do? What makes her laugh? What are her favorite activities? What do you like to do as a family?

Rheanon is a happy go lucky little girl! She loves to take care of her babies (all 15 of them) and she absolutely loves when she gets to hold a real baby! She likes to snuggle with and talk to both me and her father. She likes to watch Daniel Tiger on PBS as well as play with her Daniel Tiger characters. Her favorite episode is “The Baby is Here”. She can recite the words and sing the songs.

She has the most infectious laugh and most anything silly will make her laugh. She especially likes when we say the wrong thing, such as mixing up Aunt and Uncle. We tease her about loving hot dogs and opening her own hot-dog restaurant because she does not like them at all, she is also not a fan of white socks or my favorite local pizza shop.

We like to spend time together as a family, playing games such as Zingo and Sequence, reading stories, & visiting family. In the summer, Rheanon loves to go for walks. Her favorite thing is to go to the local amusement park, Knoebels. She likes the spinning, fast moving, belly tickling rides.

Rheanon and t-shirt
Image:  Rheanon and her brother, Chase.  She is wearing a Start Seeing CVI t-shirt.

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

We learned that Rheanon had CVI when she was 1 year old, but we didn’t get a diagnosis until she was 2 years old.

We knew that she wasn’t ‘seeing’ when we brought her home from the hospital but the doctors in the NICU said it was because of her prematurity.  In time, we were told, she would be fine.

After a few weeks at home, I learned of the Infantsee program. I took her to our optometrist who said the said the same thing, “Delayed Visual Maturation”.

When she was 6 months, she was diagnosed with Infantile Spasms. All of our energy went to stopping the seizures. With an aggressive neurologist, special diets, and heavy duty medications, she had her last seizure 5 months later.

At this point, we were working with Early Intervention and had an in-home PT and Teacher. Early Intervention referred us to Blind and Visual Services. BVS then got us an appointment with an Optometrist in State College. It was there that Rheanon was diagnosed with CVI.

But, we needed a diagnosis from an ophthalmologist.

The first ophthalmologist gave no credit to the optometrist or the diagnosis.  He said we should, “take her to the mall to look around.”

We went to Will’s Eye in Philadelphia for tests to rule out everything else.

My child, who we adopted, who we weaned off of drugs, who just got done having steroids and hormone injections to stop her seizures, had to be sedated so they could hold her eyes open and rule out all other diagnoses when an optometrist diagnosed her correctly (and immediately) months before.

They ultimately gave her the CVI diagnosis.

We got a TVI after that, though very few CVI strategies were ever put into place. I didn’t understand it and her team didn’t understand it and there was not a push or a requirement for them to do so.

I took her to the Overbrook School for the Blind for an outreach program. Overbrook staff told us how smart she was and how much she would be able to learn.

I took her to Altoona where a team of teachers and therapists from the Western Pennsylvania School for the Blind met us to evaluate her. Most of her Early Intervention team came along – PT, OT, TVI, O&M, Teacher and EI director. We learned some strategies, but once we returned home, no one knew how to continue.

We had 2 assessments by Dr. Roman at WPSB and then 2 more assessments by a TVI after Dr. Roman moved on from that program. I would bring the assessments back home to the team but nothing ever came of them.

Rheanon is a smart girl.

Dr. Roman said at one meeting, “She is making you think she can see more than she can.”

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Rheanon is now 10.  She attends her neighborhood elementary school and is in the third grade.

Her recent assessment with Dr. Roman puts her at phase 2 on the CVI Range.

I think that the members of her team are excellent teachers and therapists.

However, I do not think that they are knowledgeable in CVI, therefore I do not think that she is being supported properly.

I feel like I keep bringing things to the table to help and they keep getting pushed aside.

I feel like they are squashing her potential.

I feel like they don’t think CVI is affecting her.

I feel like our team has fallen apart.

I feel completely alone in the fight for her.

I am fighting for her right to learn. Her right to learn in the way she needs to learn.

And I don’t understand why this is so difficult.

I refuse to let her down, so we push forward.   We may lose old friends but we gain new ones.

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Rheanon doesn’t always interpret things correctly, most often its people that she misinterprets. White haired ladies are grandma, tall men with deep voices are our neighbor Howard…

She knows her sight words well, but she struggles to read sentences.

Rhe on IPad
Image: Rheanon’s brother, Chase, leans over an IPad and traces sight words for his sister.

Her memory though –  Holy Cow –  I may never have to buy another planner.

I joke that she can work for the CIA someday because her questioning is persistent and she will find the hole in your plan.

Rheanon smile

Image:  Rheanon, a smiling girl with short hair in a red sweatshirt.

I won’t look back again with regret that we didn’t do everything we could.

 

And, Jennifer is changing the way Pennsylvania serves its children with cortical visual impairment.   She knows a thing or two about advocacy;  She works for the Arc of Pennsylvania.  (If you have never heard of the ARC, look it up.  There should be a local office near you.  They are there to educate, support and fight for you and your child with special needs.)

Jennifer has also paired up with another mom to offer presentations about how to work with children with Cortical Visual Impairment to local early interventionists. Can’t wait to hear how those presentations are received!

Thank you, Jennifer, for sharing your family and your clever and tenacious girl with us!

 

 

Moms on Monday # 20 / Barbara from FL

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

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

logan and parents

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

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

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

 


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

logan and glasses

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

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

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

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

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

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

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

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

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

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

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

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

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

What I want educators to know about Logan.

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

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

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

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

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

logan and siblings

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

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

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

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

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

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

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

“He has this?”

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

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

What are your hopes and dreams for Logan?  

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

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

I have to try.

It’s what moms do.

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

 

Moms and Dads on Monday / Early Connections Conference 2018

 

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After a full day of presentations on a wide variety of topics and fun activities, parents of young children with vision loss came together in the school auditorium.  Before they left, I asked them to share something they were going to take away from this experience by writing it on a post it note and placing it on a whiteboard near the stage. Some folks wrote a single word.  Some wrote more.  Each sentiment is the beginning of a story only they can write.  A story with an ending they can control.

Maybe, a story they can share when they speak at the Perkins 50th annual Early Connections Conference.  Or 75th…. who knows?

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Here are the words of the parents.

Hope

I hope every parent can be brave to fight their children

The kid with special needs was born to show us WE ARE STRONGER THAN WE THOUGHT

Support each other

I want to bring this amazing inspiration to my home, family, work, city, and country – all countries!

Stay strong.

We are all on a journey looking for answers and connections.  #FeedtheHope

If a 3-year-old understands this, then I need to up my game. #FeedtheHope

Be motivated by love, not fear.

Community

It’s okay to be sad.  It is okay to cry.  I got your back.

Inspiration

Be an involved dad!

Feed the good wolf

Be positive.  Life is good.

Medical imaging will not define what my child can do.

Don’t stop dreaming.

You’re a great Mom!  Congratulations Perkins

A future together

I’m not alone anymore

Inspired and thankful

Every parent has a story.

SO MUCH INFORMATION!  (I learned a lot.)

Expect miracles

Belief statement about your child

Knowledge

Advocate

Unconditional love

Balance is important.  Remember to stay connected.

Treasure the special moments

Rainbows always come after the rain

Every family has their own story about their amazing kids!

JOY!  To find it whatever situation – family, friends, church, work, community

Perspective

Faith in action!

Every day my life is inspired and strengthened by moments of joy.

It will get better.

There is a nice way to ask for commitment to follow IDEA.

Doctors needs sensitivity training.  Listen to your gut.

It’s OK.

Just keep swimming but know where you are swimming to!

Keep going!

Family connection is essential.

Be your child’s advocate.  The experts don’t always know what’s best.

Families are powerful, knowledgeable, and resilient.

You are not alone.  You are an amazing parent.  Don’t ever think otherwise.

I will choose how the story ends.

Teamwork

Faith

Never feel alone again.

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Image: An illustration of the words “We’ve Got This” held up by a group of women.  A baby sits on top of the words holding a rattle in the air.  Illustration doodled  by Ian Christy  (https://www.instagram.com/i.christy/)

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Image:  Ron Benham , Danielle Bangs on the left.  Teri Turgeon standing on the right of a whiteboard.  On the whiteboard is written “Happy 35th Perkins School!”  The whiteboard is covered in colorful post it notes.  

At the end of the conference, Perkins recognized the achievements of Ron Benham, who is retiring from his position as Bureau Director at the Massachusetts Department of Public Health.  Ron was one of the people in Massachusetts who understood the importance of early intervention and helped to build (and find funding) for the service system over 30 years ago.   Families of children with special needs benefit today from the decades of work of dedicated professionals like Ron Benham.

Bravo Ron!  Bravo Teri and Ed and Danielle and everyone at Perkins!  Bravo fellow families!  We are in this together!

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.

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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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

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

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

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

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

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

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

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


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


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


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

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

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

 

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

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