Up and Moved, Part 2ish

Good morning fellow families of perplexing yet adorable children who happen to have Cortical Visual Impairment among their list of diagnoses…

If you have been following this blog for any length of time (a super-sized cup of gratitude to you), you may have noticed that there hasn’t been much activity over here at CVI Momifesto over the past few months.  You may know from the post Up and Moved, Part 1 of ? that this is largely due to the fact that moving is like throwing your life into a blender.  This is also due to the fact that immediately after moving I started a new job and any remaining time left in the week has been spent filling out forms to secure medical and educational support for my complicated kid, and occasionally – if absent mindedly – patting her older sister on the head.

Sometimes, for fun, I do laundry.

Sometimes I think, “Oh!  That would be a great blog post!”

Then I go home where we are still living out of boxes and think, “Oh! My house looks like a particularly tragic episode of Hoarders!”

And everything just sort of spirals downward from there.

From a vision standpoint, being surrounded by clutter I haven’t been able to sort through yet really drains and distracts me.  I am a typically sighted person.  My experiences in this move have heightened my awareness of CVI and the amount of energy it takes to process visual information.  Bonus: the extra helping of guilt that I can’t get a handle all of the piles of stuff fast enough to create a more accessible living arrangement for Eliza.

We haven’t been able to find the services we need to make our lives work here so it’s ALL ELIZA ALL THE TIME!  And, it’s a new home, new routines (or lack thereof), new school, new doctors, new transportation and so on.

This is not a kid who thrives on change. So, moving, introducing new – well – everything AND having her first (severe) exposure to poison ivy wasn’t the best way to introduce her to Smassachusetts.  It was, as they say in the South, a hot mess.  Heck, it wasn’t even a hot mess.  It was a lukewarm, stale mess.

At a 3 1/2 hour IEP in December, one of the school staff commented that it was as though Eliza was “shell shocked” for the first month or so when she started school.  The stricken look on my face made her scramble to come up with a new description, but I understood.  I felt that way too.  I feel that way most days even when we haven’t just moved.

Proud parenting moment though.  Who among us doesn’t want to have their child described as “shell shocked?”!  #Winningatthismomthing  

(Random Mom side note: I have been informed by my teenager that no one uses hashtags anymore.  My last desperate attempt to relate to you whippersnappers has failed.  #cronelife )

Speaking of school – I’ve used the phrase Death by IEP to describe my feelings about the marathon meetings we have had with educators and administrators in – oh, how many is it now? – 5 states in 12 years?  Argh.  I do not recommend trying this at home by the way.  Leave it to the professionals.  

The phrase still applies.

IEPs.  Boy, have we had ’em.

I had hoped that an appropriate school placement would be easier to find here.  The school district we moved into had other plans.  Oh, they could accommodate her alright.  But, she couldn’t start school with everyone else.  She sat at home with me for the first week of school, in the sad episode of Hoarders, clinging to me as though she was about to fall off a cliff.  This meant I had to delay starting a new job.  Bills?  Who needs to pay bills? 

And, the school administrator wasn’t sure about transportation but he would get back to me in a few weeks or so.  Because who really needs specifics about when and where your non-verbal child is being driven in a vehicle with people you’ve never met? 

And, in those weeks when he’s getting information, she’ll just get up and walk the 3.7 miles while I go to work.  Right?  Oh, the confidence we felt in this new situation. 

And, we had a surprise visit to the emergency room on Halloween after the tubing in her g-button broke during a g-tube feeding at school. (On the plus side, I now know a lot more about what kind of nurse/student ratio our kids need AND I’ll share.) 

FAPE:  Free and Appropriate Public Education at it’s best.   (If you thought you heard a soul shattering primal scream during the first weeks of September and again on Halloween, you did.)

And, there is so much more, but we have had hours of meetings, hired an advocate and are using the proper channels and so forth….

Let’s just say that this photo borrowed from the interwebs accurately mirrors my feelings about so many things regarding this move, but especially, our school experience thus far.

top09-kellyclarkson.

Photo:  Steve Carell in the film, The 40 Year Old Virgin, screaming after his chest hair has been waxed.  My apologies to Steve Carell and Kelly Clarkson

Never fear, gentle readers and fellow families, I am bent but not broken. I am overwhelmed but not smothered.   I know that Eliza has untapped potential.  I am determined to get her where she needs to be.  I am determined to find the people who can teach us both how we fit in this world.

Some days I don’t feel as though I am up to the task. Especially when Eliza’s sleep patterns revert to what they were when she was a toddler who never slept.  Never. Slept.  When every muscle aches to the core and I can’t keep my eyes open but the laundry never takes a day off.  When I want to write something but there are dozens of pages of applications to fill out.  When I’ve spent the last 3 days sleeping on the floor outside her bedroom to curb her nighttime roaming.  When all of this happens I have learned that it is okay to sit and feel what I am feeling without judgement.

Then, I take a nap in my car.

Also, I find that a little primal screaming and dark humor can help me find my way. Sorry, Kelly Clarkson.

I  have faith that I will find a team of folks to help us.  I have done it before.  I also realize that it can take up to 2 years to find the right therapists, caregivers, doctors, and – yes – school placements.  It is the perpetual jigsaw puzzle that is our life.

If you are the parent of a child with special needs, I’ll bet you can’t relate to this.  AT ALL.

 

 

 

 

 

Up and Moved, Part 1 of ?

Hello Fellow Families of Ridiculously Attractive Children who happen to have been identified with Cortical Visual Impairment!

I have thought about writing a post for so long.  There’s so much to say and so little time to get it right.  I judge myself and it doesn’t get done.  We are in a time of transition.  I keep turning inwards into myself and asking the same questions without new answers.   There is a familiar feeling of despair nagging at me.

I woke up this morning with an idea in my head.  I am going to stop judging myself and get it out there.

I may need some serious help here.  I will get to that eventually.

I spoke to my aunt yesterday and I found myself repeating my mom’s favorite saying, “I always do things the hard way.”  I used to roll my eyes when she said that.

Now, I have come to understand that when you have a child who is one in a million (quite literally) the hard way is often the ONLY way because you are breaking new ground and learning as you go.

But, not always.  My mom could have asked for help more often.  The results may have pleasantly surprised her.

The most important lesson Eliza has taught me is that asking for help can bring you information and support you never thought possible.  And, if it doesn’t, no harm done.  I’m used to doing it the hard way.

—————————————————

Two months ago, we up and moved.  (“Up and moved” is a particularly Southern phrase that implies doing something quickly.  Which is true.)

Our family’s life circumstances had shifted significantly.  My older daughter was about to start high school.  There was nothing keeping us in the state of Virginia.  I had been taking Eliza out of school half days to do private ABA therapies for various reasons.

I could not sustain the schedule of creating and maintaining an educational and behavioral program for her.  It was more than one person could do.  I didn’t feel particularly successful at it.

I am used to this feeling – the need to find someone who understands her better than I do.  Who knows HOW to teach her to communicate and to engage more with the world.  I am used to fighting battles and asking for more than IEP teams think is necessary.

In this instance, I needed to choose my battles and look at the big picture.

Eliza turned 12 this summer.

We needed to think about what we want her life to look like at 22 when she ages out of the school system.

We started entertaining where we would go if we could go anywhere.  Eliza would need to be in a state with good educational opportunities, a strong support network and good transition services for when she becomes an adult.  My older daughter should be able to start and stay in the same high school.  My husband and I would figure out how to make this work.  That’s what parents do.

So, we jumped, er, moved.  From Virginia to a state that rhymes with Smassachusetts.

Two months ago.

My husband, my older daughter and I packed and carried our house out the front door and into two Pods.  We made the trip to Smassachusetts and back to Virginia several times in two weeks.   It is not an exaggeration to say there was a little blood, so much sweat, a few tears, and a recurrence of carpal tunnel syndrome.  We went through several bottles of Aleve.

It has been intense. Some days I HATE our stuff.  Who needs more than 2 towels?  Why do we have so many socks?  ONE pair of shoes should suffice, people!  One pan, one lid.  One fork, one spoon, one plate. Throw the rest away!  (I get that this is a 1st World Problem.  I do.  Forgive me.  Just had to vent a little.)

And, the files – the medical records and educational records from a decade plus.

A little light reading to relax me –

AHAHAHAHAHAHAHAHAHAHAH, wipes eyes and catches breath, AHAHAHAHAHAAHAHAHAAHAHAHAHAHAHAHAHAHAHAHAHAHA, sniff. Sigh.

Sorry, I couldn’t write that with a straight face.

It’s necessary to decide where to keep them for quick reference.  There is so much information – maybe I should let some of it go,

but,

there are still many questions with respect to what makes Eliza  Eliza.  

Maybe the answer is in one of the reports and science just hasn’t caught up to her yet.

Maybe someday SOMEONE will be able to help me understand what we’ve lived from a medical perspective.

For that, I keep the records, in bags by the bed for now…like the master of domestic organization I am.

We continue to dig out from boxes and piles of laundry.

It has NOT been an ideal environment for a child with CVI.

moving
NOT a great environment for a child with Cortical Visual Impairment

The first few days she was most content sitting in the laundry room clinging to my legs.  It made sense.  The room is small.  Everything is off white – a clean visual palette.  The vibration of the dryer was comforting. I sat on the floor with her several times those first few days commiserating with her that we had found the only spot in this new place that didn’t look like a tornado had hit.

Looking at the  piles of boxes and clothes and furniture exhausted and irritated me.  I couldn’t exactly understand how frustrating it was for her, however, the way she clung to me like a drowning person gave me a good idea.

We made her and her sister’s room first priority to give them a place of respite from the craziness of a move.   She is laying in her room listening to music right now.  And, now she’s shuffling down the hall.

I will pick this thread up again soon.  I would like to tell you what is going on and to see if you have any insight.

From my spot on the distant periphery, I see CVI moms shaking up the status quo and creating real change in their local education and support systems.

It occurred to me this morning that I am not alone anymore.

Until I can share more, I (the master of domestic organization that I am) have a handy dandy tip for families who have just moved.

When you move to a house without a single curtain or window shade and you are in a pinch….

window treatment
Quick and easy window treatment for families who up and move!

….Halloween decorations make GREAT window treatments!  And, in August, they are ALMOST appropriate for the season!

window treatment 2
Hello SMASSACHUSETTS! We are YOUR new neighbors, you lucky ducks!

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

——————————————

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.

———————————-

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.

—————————

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.”

———————-

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.

—————-

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!

 

 

Hope has work for us to do

About 8 years ago, I attended a conference at a School for the Blind I will not name to learn about the options for transitioning visually impaired toddlers to preschool.

During a panel presentation of expert educators at the school, a grandmother sitting down the aisle from me raised her hand. She stood and asked about the diagnosis her grandbaby had just received, “It’s called cortical visual impairment. I’d like to know what we can do to help her.”
At that point, my daughter was going on 3 years old.  I had been researching CVI and how to modify our home environment for Eliza for a couple of years.  We had seen Dr. Roman-Lantzy a couple of times.   I was waiting to hear the experts recommend her book or mention that vision can improve with accommodations – with education. I wanted to hear what this panel had to say – maybe they knew something I didn’t.
Then, one of the experts told the grandmother and the whole auditorium of parents from all over the state that there was nothing she could do.  CVI might  improve. It might not. At her granddaughter’s young age, she would just have to wait and see and hope her vision improved.

Wait and see and hope.

Wait

&

See

&

Hope

?

If that is the most passive piece of advice you’ve ever received, then raise your hand – or wait – Don’t raise your hand:  Stare at your hand and wait for it to raise itself.

Yes, there are times when a situation is beyond your control and the only thing to do is to wait and see and hope.   I am familiar with these times.

There are also times when you create hope through your actions.

It’s important to be able to tell which is which.

The experts went on to the next question. The grandma sat down and folded her hands in her lap.  My jaw fell open. I wanted her to ask a follow up question.  I wanted her to ask why they thought there was nothing that could be done for an infant with CVI.

I wanted to stand up and tell them they were dead wrong.  Neuroplasticity makes an infant’s brain open to learning: It makes new pathways for functional vision possible.  The time to begin working with her granddaughter was yesterday.

I wanted to reach across the aisle – across the other families separating us – so I could pat her hand and tell her that she had not been given the right information.

 

I didn’t.

I sat in my seat and stewed. I didn’t feel as though I knew enough to raise my hand in front of a crowd to contradict the very people who were hosting the conference.  It was frustrating and surprising that a school could be giving wrong information to families.

I regret that silence.

I regret not sharing my story with that grandmother.

I regret not asking her for her story.

My silence did not serve anyone that day.  Because I stayed silent, that woman remained alone. Sitting down the aisle from her, I remained isolated from her. We left and went our separate ways.

I hope she went home and continued researching.  I hope she found the support she needed.  I wish it didn’t have to be so difficult to sort out accurate information about cortical visual information and how to support children with it.
I have thought about silence a lot over the years.

How silence keeps people separated.  How silence allows incorrect information to stand uncontested.

I have thought a lot about hope.

Being hopeful can be a very vulnerable place to live.  For every one person who agrees with you, there are twenty who look at you funny and wait for your high expectations to come crashing down.  For every one person who offers a hand, there are twenty who are quick to step back with a snide comment or a sigh.

Cynicism is easy.  It requires no effort at all. It is dull and lifeless.  Cynicism is fueled by fear – fear of exposure, fear of failure, fear of judgment.

Hope can be hard.  Hope requires energy.  Hope is fueled by love.  Thankfully, love is the easy part.  We have an abundance of it.


Sometimes, if you are lucky, you find words artfully put together that capture a feeling you carry around with you.  Finding them makes you feel less alone.  Sharing them makes your heart happy as though the words could stretch out to embrace someone the way they embraced you.

Recently I was lucky enough to stumble upon words that described my favorite kind of hope.   The hope I know what to do with.


“Though hope may sometimes seem like a luxury – frivolous, groundless, insubstantial – it is precisely the opposite.

Hope is elemental. It is made of some of the strongest stuff in the universe.

It endures.

Hope does not depend on our mood, our disposition, our desire.

Hope does not wait until we are ready for it, until we have prepared ourselves for its arrival.

It doesn’t hold itself apart from us until we have worked through the worst of our sorrow, our anger, our fear.

This is precisely where hope seeks us out, standing with us in the midst of what most weighs us down.

Hope has work for us to do.

It asks us to resist going numb when the world within us or beyond us is falling apart.

In the height of despair, in the deepest darkness, hope calls us to open our hearts, our eyes, our hands, that we might engage the world when it breaks our hearts.

Hope goes with us, step by step, providing the sustenance we most need.”

– Jan Richardson, The Cure for Sorrow

 

This is what is rattling around in my busy head these days, fellow families.  Some days, some years are like that I suppose.  Most days I do my very best to listen to what hope tells me to do.  There is work to be done.

Every day, I know that cynicism is a luxury I cannot afford.  I know that.

On the days, I can’t listen to the “to-do list” hope has for me, I am comforted by the fact that there are others who will listen for me until I can engage the world again with a broken and fierce heart.

This is me waving from my little corner of chaos to yours with affection and flowers of particularly popular colors I’m sure you can appreciate.

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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.

——————————————-

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!  

Adventures in Advocacy / Sometimes All You Have To Do Is Ask – A CVI Advocacy Win

Kathryne, mother of “Little C,” (Moms on Monday #6)  is changing how children with CVI are being educated in Louisiana.  BRAVO! 

20180216_165131Image:  A little boy sitting on a black floor and surrounded by black walls.  He wears glasses.  He is leaning forward looking at a light source with many strands of shiny red beads hanging over it.

When I asked my local university VI graduate program why their curriculum did not address CVI and how they could add education opportunities on CVI to their VI curriculum I received the response, “it is almost impossible to provide all things to all people for all purposes.” CVI is the #1 pediatric visual impairment in the US. This was followed up with how Dr. Roman’s methods are “far from accepted as the preferred model” and there are a “diversity of opinions on how these youth are best served by educational systems.” Dr. Roman has provided the only educational model.

This happened a few weeks before the NE AER Conference. The November 22 post on CVI Momifesto provided the link to AER’s website to look up our state chapters. CVI Momifesto suggested that we contact our AER Presidents and ask how we as parents can support TVI training in CVI.

Even though I found no contact information, website, or conference for my local chapter I decided to pay the dues and see where this rabbit hole led.

After joining AER I reached out to my son’s outreach therapist that Louisiana School for the Visually Impaired (LSVI) is sending out twice a month. I asked if she knew if LA AER had any workshops or conferences and how as a parent member I could become involved. I hit the Jackpot. It turns out the head of LSVI’s Outreach Department is the outgoing AER President. She called me soon after full of excitement that a parent wanted to be involved.  She was in total agreement that CVI training was needed.

All I had to do was ask to sponsor training. The next month AER approved the workshop. Louisiana will have a CVI work shop October 19, 2018, and I have extended a personal invitation to our local graduate VI program.

If you are in Louisiana and want to attend you can sign up here.

https://docs.google.com/forms/d/e/1FAIpQLSfEe__xP9Kvzow7nApx_eN8jZ6XXM7mUUe1WRrpp3m-MuNv9A/viewform?c=0&w=1&usp=mail_form_link

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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.

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.