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 rooms the 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 holiday appropriate!

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

Nothing is Written in Stone: Looking at the AER 2018 Resolution with Dr. Sandra Newcomb

Hello fellow families of magnificent children who have been identified with Cortical Visual Impairment!

Long time, no blog post!

So, after the success of the American Conference on Pediatric Cortical Visual Impairment, I decided to dial it down a bit and spend some time with my family.  And, learn to play the ukelele, and run 3 miles every other day, and binge watch Fargo.

In July, a CVI mom friend of mine reminded me that Eliza’s older sister, AC, needs as much time and attention as I devote to E and her special needs.

AC’s life looks a lot like this a fair amount of the time.
IMG_0861

 

Or this….
sister squish
Upper:  Two girls in a rope door swing.  One girl is asleep on top of the other.  The girl on the bottom is smiling and holding a book.  Lower:  Two girls smiling and wrestling.  The younger girl is laying on top of the older girl who is grinning good naturedly at being squished.

 

AC is as kind as she is clever and funny.  Sometimes I need to be reminded that this kid needs her time too and I have to extract her from Eliza’s bear hug.

And, she starts high school in a couple of weeks.

WHEN DID SHE

AC baby

 

 

GET OLD ENOUGH TO GO HIGH SCHOOL?

Who is responsible for this?  I want to lodge a complaint.

Excuse me, I have to go hug the stuffing out of her….

Okay, I’m back.

So, I adjusted my to-do list.  I spent as much time with the teenager for as she would allow and I watched Fargo.  Success!

I hope you had some fun this summer.  I hope you had the chance to spend time with your favorite people.

Did anything interesting happen while I was gone or rather lurking in the background reading stuff and taking mental notes for the future?

Well, yes, yes it did.

Something interesting and rather unusual DID happen this summer as an attempt to affect the education of children with vision loss, and specifically Cortical Visual Impairment.

This summer, during the International Conference for the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER) in Reno, Nevada, a resolution which included very specific language about the CVI Range was put forth, voted on, and passed by the attending members.

You need to be aware of this resolution.

AER and the authors of this resolution are making a statement about the work of Dr. Christine Roman-Lantzy, the CVI Range, and the recent attempts of parents to advocate for the appropriate education of children with Cortical Visual Impairment.

I have a few comments on this resolution, however, I thought it best to first ask for comment from Dr. Sandra Newcomb, from Connections Beyond Sight and Sound at the University of Maryland.  Dr. Newcomb’s research, published in the Journal of Visual Impairment and Blindness in 2010, validated the CVI Range.

Dr. Sandy read the resolution and added comments.  She very graciously allowed me to post her comments with the resolutions.  Most of her comments are in blue.  Emphasis is mine. When I got really emphatic I posted her comments in BOLD RED.


 

Proposed Resolution of the Association for Education and Rehabilitation of the Blind and Visually Impaired: July 2018
Assessment, Services, and Personnel Preparation to Support Students with CVI and their Families
Resolution Number 2018-001
Authors: Yvette Blitzer, Kathryn Botsford, Olaya Landa-Vialard, Sandra Lewis, Mark Richert, and Ye-Ting Siu
Whereas to receive a truly free and appropriate public education under the Individuals with Disabilities Education Act (IDEA), all children and youth with visual impairment, including those who may have additional disabilities, should be properly evaluated by teachers of students with visual impairments (TVIs) who are equipped with and use multiple assessment tools to determine such students’ individual sensory channels, functional vision, and learning media needs;
Whereas these types of evaluations are especially critical for the large and growing population of students who experience neurological visual impairment (frequently otherwise known as cortical or cerebral visual impairment; hereinafter, children with CVI);
Whereas TVIs must also have access to resources and participate in professional development opportunities in order to keep up with the changes in the diagnosis and assessment of CVI and appropriate interventions to minimize its effect;
Whereas whenever possible, assessments conducted by TVIs should include (as called for in IDEA) a variety of research-based, data-driven, and validated tools and strategies to gather relevant functional, developmental, and academic information;

 
Whereas there are currently no assessments available to TVIs that adequately address all the possible effects of CVI and/or meet the exacting scientific standards for research-base, and validated evidence; No assessments of what? Functional vision? Academic achievement? There is an assessment that meets scientific standards for reliability and validity for assessment of functional vision. Newcomb 2010, JVIB

 
Whereas frameworks for functional vision and learning media assessments commonly used by TVIs today are nevertheless based upon recommended practices in the field; But “practices in field” is not defined here.  There is evidence that current practices are from TVIs who have been trained using an ocular model of VI and of functional vision. There is valid research that describes the differences in ocular and cortical visual impairment.  This research reveals the frameworks for ocular are not appropriate for cortical.

 
Whereas there are multiple assessment tools, frameworks and strategies available for use by TVIs when conducting a comprehensive assessment of the visual functioning and sensory channels of children with CVI, the use of which serve to support of IDEA’s mandate for the use of multiple assessment tools; IDEA mandates assessment of functional vision, or how the vision impairment has an educational impact. Multiple tools are used for assessment of multiple constructs (medical tools for diagnosis, curriculum specific tools for achievement, speech/language tools for communication, etc.) These are the multiple tools for getting a comprehensive picture of a child with multiple challenges.

 
Whereas the CVI Range by Christine Roman-Lantzy is but one assessment designed to provide information on the visual and sensory functioning of children with CVI; It is only one assessment, however, in my review of the literature (both for dissertation and ongoing review) there is no other assessment developed for assessment of functional vision for children with CVI.

 
Whereas a package of continuing education opportunities bundled under the Perkins-Roman CVI Range Endorsement brand, and any other continuing education opportunity, are valuable resources to teachers and others who wish to hone and test their skills in the administration of the CVI Range; To date, Perkins has the most continuing education opportunities relative to CVI and to children with multiple disabilities.

 
Whereas some proponents of the CVI Range and the related endorsement are seeking to have policymakers and state and local education agencies require the use of the CVI Range and to require TVIs to obtain the endorsement as a condition on such TVIs’ provision of special education to children with CVI; Who are the proponents? And why should a local system NOT require the use of the only tool that is appropriate to assess the functional vision of children with CVI?

 
Whereas a TVI’s failure to obtain specifically branded continuing education opportunities, even if such opportunities are marketed as an endorsement, and completion of professional training in an assessment tool alone is no indicator of a provider’s preparedness to conduct appropriate comprehensive assessment or provide appropriate special education programming to children with CVI or any other students with visual impairment; Branded? Marketed? Why is it not appropriate for a professional to demonstrate proficiency in an assessment tool that they need to use? There are no other assessments (in any domain) that teachers do not need to be trained on to administer. This is especially critical when the tool relies on the teacher’s observation skills as the primary means of gathering information. When an assessment tool relies on teacher observation, it is critical that the teacher demonstrate he/she is reliable in their observations, otherwise the scores on the assessment are not meaningful.

No assessment in any domain can guarantee that a teacher is able to adequately provide meaningful interventions; however, lack of appropriate assessment data on which to base intervention strategies will guarantee inappropriate or inconsistent interventions.

Only when you start with an appropriate assessment can you hope to design appropriate, individualized, and targeted interventions.

 
Whereas university teacher preparation programs are addressing the needs of children with CVI and their graduates have beginning-level competencies and skills, which can be honed through experience, mentoring, and additional professional development; I have not seen any data, no published data nor anecdotal data, that indicates that university programs are addressing the needs of children with CVI, even at a beginning level. My experience on the MD/DC deaf-blind project, my private work in VA, NJ, WV, KS, and PA, and CVI mentoring in MS and GA have shown just the opposite. Parents and teachers are not prepared to meet the needs of children with CVI. They lack information and training, even some recent graduates of vision programs.

 
Whereas some states allow for individuals to circumvent university preparation teacher training and permit licensure of TVIs via (a) minimal coursework or a (b) test-only credential and functionally allowing individuals without adequate training in assessment of children with ocular and/or neurological-based visual impairment, or program development to assess, plan, and deliver services to children with visual impairments including those with CVI; This should never happen, no matter what state, for any TVI. States should not allow individuals to circumvent proper training.

 
Whereas individuals gaining TVI licensure via a test-only modality are not prepared to assess, plan, and deliver services to students with visual impairment, including those youngsters with complex disorders, such as CVI; Agreed!

 
Whereas it is imperative that parents and guardians of such students with CVI have accurate, complete, and unbiased information about the professional training and qualifications possessed by TVIs today who are evaluating and developing individualized education programs (IEPs) to meet such students’ unique needs; Agreed!

 
Whereas knowledge about neurological visual impairment and children with CVI is evolving rapidly, and a rich body of research and related developments from around the world promises to further enlighten and change educational practice over time;

and
Whereas requiring the use of a single specific assessment today, such as the CVI Range, or the express or implied imposition of brand-specific endorsement requirements on TVIs beyond state licensure and adherence to nationally recognized TVI standards puts students at risk of being denied the most up-to-date assessments and services and needlessly locks state and local educational agencies into practices and purported credentials with a limited shelf life that do not align with federal and state law and policy; For children with CVI, who must have (IDEA) a functional vision assessment, we must insure that the assessment is appropriate for children with CVI.

The CVI Range is, at this time, the only assessment developed to accomplish this task. While it is clear AER objects to “brand-specific” endorsement, there is nothing else that can insure that our children with CVI have an appropriate functional vision assessment.

This is the only the first step in appropriate intervention, but it is a step that cannot be missed or mishandled.

What are the “nationally recognized TVI standards” that include adequate information on CVI? What is more up-to-date? The phrase “purported credentials with limited shelf life” is very inappropriate and inflammatory, and a direct attack on the extensive work done at and through Perkins. The CVI Range endorsement aligns directly with the federal and state law and policy in that a child with CVI needs an appropriate functional vision assessment.
Now therefore be it resolved, that the Association for the Education and Rehabilitation of the Blind and Visually Impaired (AER):
1. encourages personnel preparation programs training new and pre-service TVIs and O&M specialists to include coursework in assessment tools, learning needs, and instructional methodologies to support the diverse needs inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities;
2. encourages parents and teachers in all states to educate lawmakers and call for the abolition of “test-only” pathways to TVI licensure and require rigorous university preparation as the only option to gain licensure as a TVI;
3. encourages current and new TVIs to pursue continuing education and/or professional development opportunities and training to keep abreast of the ever-changing practices related to students with neurological visual impairment in order to effectively meet the unique needs of children with CVI;

 
4. encourages state chapters and divisions of AER to advocate for and promote the appropriate use of multiple comprehensive assessments, as mandated by IDEA, thereby honoring all students’ unique needs for appropriate and reasonable accommodations that recognize the diversity of functional vision, learning media, and literacy characteristics inherent in the heterogeneous population of students with visual impairment, including those students with neurological-based vision impairment and those with additional disabilities; while “multiple comprehensive assessments” are indeed necessary to address needs in a comprehensive way (communication, mobility, achievement, etc.), there are not, at this time multiple assessments to measure the functional vision of children with CVI.

 
5. urges the U.S. Congress, state legislatures, and state and local educational agencies to protect the integrity of comprehensive assessments conducted by TVIs both by rejecting calls that expressly or implicitly require the use of any single specific assessment tool or technique with specific populations of students with visual impairment and by refusing to impose specifically-branded in-service training requirements on state-licensed TVIs (prepared in accordance with nationally recognized TVI standards; Council for Exceptional Children (CEC) and Association for the Education and Rehabilitation of the Blind and Visually Impaired (AERBVI) as a precondition for providing special education to children with CVI or any other students with visual impairment; See comments above. The “integrity of comprehensive assessments” means that a TVI can use whatever measure or observation they decide.

 

This insures a continuation of TVIs providing inappropriate assessments for children with CVI and then basing interventions and accommodations on those inappropriate assessments. The cycle of inappropriate interventions and frustrated parents continues!

 
6. calls upon the U.S. Congress to promptly enact the Alice Cogswell and Anne Sullivan Macy Act, which, among other critical policy objectives, would significantly increase investment in quantitative and qualitative research, allowing our field to identify evidence-based practices in assessment and instruction for children with CVI and all other students who are blind, have low vision, are deafblind, or may have these conditions and additional disabilities;

and
7. shall disseminate this resolution online and using any other appropriate means to make it widely available to parents, TVIs, and all other stakeholders to ensure national, state and local communication of these matters.

NOTE: It is my experience that parents are pushing for The CVI Range endorsement because of the lack of professionals who understand their child and who can provide the interventions they need.

Parents are advocating for professionals that demonstrate some level of knowledge, training, and competence in CVI.

At this time, the Perkins-Roman endorsement is the only avenue they have to be sure the teacher knows something about CVI. Too many families are offered services that are inappropriate or worse, no services at all. They are given TVIs that do not understand the characteristics of CVI.

The parents are looking for some way to insure that the people who design programs for their child have some working knowledge of CVI. At this time, they cannot count on pre-service programs to adequately prepare vision teachers to address the needs of their child. They are demanding, or strongly suggesting the endorsement because, for now, that is all they have.

When university programs and national standards catch up to the current population of children with CVI, parents will have done their job of advocating and systems change, not only for their child, but for all children who have CVI.


 

So, how’s that for a little morning reading?

Take your time with this.  Think about it.  Ask questions.   There is more to come.

And, remember…

nothing

 

American Conference of the Pediatric Cortical Visual Impairment Society 2018

They came!  They saw!  They chatted over mojitos and exchanged contact information. 

The Pediatric CVI Society hosted their 6th annual conference at the Children’s Hospital and Medical Center in Omaha, Nebraska.

This, fellow CVI parents, is the conference where you can hear the most recent research on the science surrounding Cortical Visual Impairment and the art of the education of children with this brain based vision loss.  The PCVI Conference is the place where you can meet fellow families, share your stories, ask your questions, and broaden your support network.

The goal of the American Conference on Pediatric Cortical Visual Impairment
(PVCI) is to bring together occupational therapists, ophthalmologists,
optometrists, teachers of the visually impaired, neurologists, pediatric
intensivists, physiatrists and parents to increase interdisciplinary
understanding of cortical visual impairment in children.

 

Introducing the PCVI Society!  

PcVI logo

 

From http://www.pediatriccvisociety.org

pcvi business

Image:  Three people standing at a podium at Children’s Hospital and Medical Center.  Sara Olsen, COO of the PCVI Society,  Lindsey Hiller, the new PCVI Society president and Dr. Skip Legge, outgoing PCVIS president.  These folks have championed our children for years. The conference has grown under their watch and under the watch of the PCVI Society Board.  Trailblazers they are!  Pith helmets for all!

We care about kids with CVI.

The mission of the Pediatric Cortical Visual Impairment Society (“the Society”) is to advocate for improvement in the quality of life of children with vision loss due to brain disorder, disease or injury. The mission is restricted to matters concerning the sense of vision.

Goals

The mission of the Society will be fulfilled through the pursuit of the following goals:

1. Advance interdisciplinary education and research.

2. Enhance dissemination of information and its communication among and between professionals, parents, government and educational institutions, and other groups whom impact children with cortical visual impairment.

3. Advocate for the appropriate allocation of resources to allow for improved vision services for children with cortical visual impairment.

4. Improve public and professional awareness of cortical visual impairment in children.

5. Advocate for governmental policy that improves quality and quantity of vision services available to children with cortical visual impairment.

6. Engage in fundraising activities that will allow for advancement of the Mission and the Goals of the Society.

On this note, I am happy to tell you that there is a lot of momentum around raising awareness about Cortical Visual Impairment and improving medical and educational outcomes for our children.  Top priorities for the next year are to create a new website with resources for doctors, providers, educators and families and to fund research.  

To continue building the PCVI Society and to strengthen the Society’s ability to be a champion for children with Cortical Visual Impairment and their families, we need members. 

The PCVI Society needs members to help us blaze a trail for our children.

———————————————–

BECAUSE

Children with CVI need to be identified as early as possible.

They need providers who understand the unique needs of children with CVI.

Families of children with CVI need support and education to help their children see the world.

———————————————-

So, I will make you the offer I made the folks at this year’s conference.

For the people who become members of the PCVI Society and who encourage two other people to become members of the Society, I – one random mom – will offer you your very own PITH HELMET OF GRATITUDE.

Just email me at Info@cvimomifesto.com with your name and the 2 (or more) other members you have recruited and I will have a pith helmet with your name on it at the 2019 PCVI Conference!

The pith helmet is for trail blazers!  Get it?  I forgot to say that at the conference.  Also, it’s easier to bring pith helmets to a conference than homemade pie.  Speaking of pie… 

IMG_0711

pith helmet
Images: Above:  Gunjan Rastogi-Wilson, CVI mom, advocate, and fundraiser with pie.
Below:  Random mother in blue jacket at the PCVI conference sporting a “pith helmet” from Oriental Trading Compnay.  Nothing but the best for our trail blazers!  This could be you!

 

.

http://www.pediatriccvisociety.org/membership/

 

alice

The future for our children and our families is currently under construction. The Pediatric Cortical Visual Impairment Society is leading the way

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!

 

 

Nicola McDowell’s CVI Journey

Hello fellow families of beautiful children who happen to have a diagnosis of cortical visual impairment!

I had the great joy to attend the Early Connections Conference at Perkins School for the Blind yesterday.

There will be posts to follow.

In the meantime, I wanted to be sure to mention a recommendation that the CVI Teacher, Ellen Mazel, gave during a presentation about complexity.  She recommended that people interested in learning about what it is like to live with CVI watch a YouTube video posted by an adult with CVI, Nicola McDowell.

Parents, we need to watch this video.  We are on the frontlines of educating the medical and education communities.

This is a video you can easily send to your pediatrician and your school team with the information that CVI is the #1 pediatric visual impairment in the U.S. and the first world countries.

https://www.bing.com/videos/search?q=nicola+mcdowell&qft=+filterui%3amsite-youtube.com&view=detail&mid=69BB6512FDFB3ECEAF0569BB6512FDFB3ECEAF05&&FORM=VRDGAR

Nicola McDowell has done all of our families a great service in describing the anxiety in her life caused by cortical visual impairment.  I was fascinated by her description of what she sees, and how she has to strategize future social occasions to avoid becoming overwhelmed.

Nicola’s story helps me better understand my daughter’s experience.  Her information is invaluable.

Check it out!

 

 

 

 

CVI Teleconference Call

Did you know that there is a weekly teleconference call for families of children with CVI on Tuesday nights?

This weekly call has been a source of knowledge and comfort for families like ours.  The moderator of this call is a kind and wise woman named Judith Millman.

I asked Judith about the history of this teleconference call that has been a lifeline to families across America for 11 years.

Why did the call come about?
The original idea for the Telephone Support Groups came from Dr. Alan Morse, the President of the Jewish Guild for the Blind (now LighthouseGuild). He felt that there were parents of children with visual impairment all over, particularly in rural parts of the country, who were isolated with no support systems in place and that the Guild had the resources and contacts to play a constructive role in their lives. About ten different vision conditions were targeted but CVI, being the single largest cause of children’s visual impairment became one of the first groups that was started (in 2007). It continues to be the largest telesupport group (by far) that LighthouseGuild sponsors.

How did you get involved? What is your background?
I am a social worker by training and worked most of my career in vision services. I started at the Lighthouse in Westchester Co. (White Plains, NY) as a social worker. By the end of my 30 year career there, I was the VP for the Lighthouse in the Hudson Valley, overseeing services for consumers in 7 counties. When I was about to retire, a colleague of mine, Dan Callahan, who was hired by the Guild to start the telesupport program, recruited me to facilitate the CVI group which was just about to be launched.

What are some common questions?
How can I get appropriate services for my child? The school district doesn’t seem to know much about CVI. Can you recommend an ophthalmologist who knows about CVI–mine doesn’t and told me that my child is blind. Where can I find a TVI and an O&M who really understand CVI? How can I help my child learn to use his/her vision? What strategies are helpful?

Have questions changed over the years?
I’m afraid that the questions haven’t really changed over the years. A positive factor is that more information is available via the literature, websites, distance learning courses, etc.

What are common themes in CVI that you don’t see going away – or that are increasing?
The tremendous role that parents have to take on to advocate for appropriate services–even more difficult in light of shortages in the field of TVIs and O&Ms.

What would you want parents of children with CVI to know?
You’re not alone.

CVI is the leading cause of visual impairment of children in the US. There are resources available, including a telesupport group, distance learning courses through Perkins School for the Blind, Dr. Roman’s book, webinars, etc.


If you are interested in joining the CVI teleconference call, email judithmillman@aol.com.

Thank you to Dr. Alan Morse for a wonderful way for families to create community across the miles.

Thank you Lighthouse Guild for sponsoring this call!