Moms on Monday #8 / Rebecca from VA

Good morning fellow CVI families,

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

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

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

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

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

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

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

Here she is at about 11 months old.

Baby_E[1]

 

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

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

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

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

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

At 4 months old, Eliza wasn’t tracking anything.  We took her to a pediatric ophthalmologist who called it  Delayed Visual Maturation and told us her vision would eventually develop normally.  “Don’t buy trouble,”  he told me. (Hmmm, well,  Dr. Expert Guy,  maybe I’ll just rent trouble and see how it feels.   CAN I JUST SAY HOW ANNOYING and CONDESCENDING THAT PHRASE – Don’t buy trouble – IS?  How many times are mothers of children with special needs or medical issues dismissed by a doctor who “knows better.”  Too many.  ARGH.)

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

that which does not kill me

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

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

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

And, what do we know now – 10 years later?  He was so very wrong.

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

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

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

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

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

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

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

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

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

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

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

000_0002 [325201]

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

When we moved to Indiana when Eliza was 2 and still eligible for another year of early intervention, I discovered that Indiana did not have ongoing early intervention for infants and toddlers with vision loss.  Just didn’t have it.  They offered families of young children with vision loss a yearly – roughly 2 hour- consultation from one teacher.  A fantastic teacher (Miss Annie from the Blue Bowl Story), but ONE teacher, nonetheless, for an entire state.  She had a caseload of over 300 families.

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

Did I mention – that which does not kill me

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

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

No therapeutic or educational program is going to work for your child if your child cannot access it. Yes, I’ll keep saying ACCESS until I’m blue in the face.

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

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

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

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

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

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

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

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

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

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

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

You are not alone.  There are more resources available and a community of parents who have been and are going what you are going through.

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

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

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

Hopes and dreams? 

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

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

 

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

Maybe we will work on that in 2018.  Hmm?

 

 

Adventures in Advocacy / NE AER / Part 3

Be a life long learner about CVI.

Be a life long learner about the brain.

Ellen Mazel, the CVI Teacher (https://cviteacher.wordpress.com), offers this advice to parents of children with CVI and to the teachers who work with them.

In her presentation at the Northeast AER Conference, Ellen shared information on learning assessments and intervention strategies from her extensive experience as a Cortical Visual Impairment Advisor and a Certified Teacher of the Visually Impaired.

Her audience primarily consisted of TVI and COMS, however, everything about the presentation resonated for me as a parent.  Watching presentations from teachers who know CVI always help me broaden my perspective and recharge my batteries.  It gets discouraging being the only person at an IEP meeting who knows what Cortical Visual Impairment is and how it negatively impacts my daughter’s learning.

Sometimes, after a particularly frustrating day, I think, maybe, I am just kidding myself.  Trying too hard.  My girl is a complex kid.  She is non-verbal and has an additional diagnosis of autism.  We are struggling to find a consistent method of communication.  We do not get a lot of eye contact.  Interaction takes time and effort.  It is hard to read her.  It is hard to know what she understands.  

It is all too easy to develop low expectations for a complicated kid like her.  I have fought against low expectations in IEP meetings and in teacher-parent meetings, yet I have struggled to learn how to reach her myself.  

Ellen’s presentation reminded me that this is an ongoing journey.

Regarding the perspective of the parent/teacher:

  • The importance of presumed competence and eye contact.
    • CVI masks cognitive abilityOur children are often not able to maintain eye contact.  (Children with visual impairments cannot be accurately assessed by traditional cognitive tests.  IQ tests are not going to work on this population of children.) 
    • Research has shown that children who do not maintain eye contact get far less social interaction and attention from caregivers and teachers.  Be aware of this tendency to interact less with a child who does not maintain eye contact.
    • Since we cannot tell what a child who is not maintaining eye contact understands, we have to presume that the child understands and continue to teach the child in an accessible way.  
  • If we expect improvements, we will get improvements. The minute we do not have expectations, we are guaranteed not to get improvement.
  • Read articles and attend presentations.  – Research about CVI and the experience offered by CVI Range endorsed teachers will be found at conferences and in journals before you will be able to find it in a book.  

Regarding IEPs and Assessments:

  • The CVI range endorsement is the beginning of your journey NOT the end.  
    • Yes, we need to demand a teacher who has completed the Perkins-Roman CVI Range endorsement, however, it is only the starting point.
  • IEPs need to say “brain based visual impairment,” when diagnosed, by whom, the score, and the result of the Functional Visual Assessment (as it relates to CVI).  
  • When assessing a child, Ellen uses the CVI Range (Roman), Dr. Gordon Dutton’s survey, and Matt Tietjen’s “What’s the complexity” framework.
  • Remember that the parents’ interview gives all important visual history – if vision has improved – consider CVI
  • Best practice accommodations and modifications should be based on the CVI Range score 
  • Strategies need to be embedded throughout the day
  • Ellen puts together a salient features presentation so everyone on the child’s educational team uses the same language.
  • As a consultant, she advises that the IEP includes a 1 hour in-service about CVI and a 1 hour in-service about how CVI affects this particular child
  • Embed the theory that there is something visual in front of that child all the time.
  • Use more CVI supports in place when developing weaker visual fields.
  • Introduce yourself and use the child’s name so she knows you are talking to her
  • Limit touching and moving children while they are trying to look.

I’ll end with Ellen’s explanation of “infused advocacy,” or teaching the children how to problem solve for themselves.

Parents and teachers can start teaching a child to become a self-advocate by teaching her about the characteristics of CVI and by including her in the process of making her own accommodations and modifications. When a child understands that how she perceives the world is different from other people, she can learn to articulate her unique needs. She could ask other children to say their names when they approach her to help her identify them.   She could explain to her mom that cluttered rooms make her feel anxious or scared. She could tell her teacher that new places are confusing and ask for extra time to get to know a novel environment.

This part of a child’s education, learning how to articulate her needs, is so important.  We spend so much time talking about the kids.  Listening to them (or, in the case of a non-verbal children, quietly observing them) is even more important.

This is a fascinating and busy time in the history of Cortical Visual Impairment.  There is a solid foundation of knowledge and a growing current of educational strategies and research.  There is an active and vocal community of families around the world.  There are teachers who can guide us!

At the center of all of this activity remains the children who have to be equal partners in putting together the puzzle that is their picture of the world. 

 

 

 

 

Moms on Monday #7 / Gunjan from PA

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

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

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

gunjan and maryanne

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

Introduction: Gunjan, Krish, 5, Pennsylvania

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

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

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

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

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

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

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

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

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

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

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

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

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

I was tired ALL THE TIME. 

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

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

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

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

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

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

 

 

Adventures in Advocacy / NE AER / Part Two of Three

Hello Fellow Families of Delightful, Sometimes Exasperating Children Who Happen to Have CVI and Who Sometimes Knee You in the Neck,
Why yes, maybe E did wake up at 4:30 this morning and kneed me in the neck while climbing into my bed. Once settled comfortably (for her) on my chest, she leaned over to kiss my forehead about a dozen times. It was pitch black, so let’s just say she missed a few times. In my semi-consciousness, I dreamed I was being water boarded.

This is an accurate description of the power dynamic in our relationship.

Moving on.

I promised more information from NE AER.  This post turned into a doozy.  So, I am splitting it in two.
To recap: There were 6 presentations about CVI at this conference! This is a big deal. Bravo to the Co-Chairs of the 2017 NE/AER Program Committee, Sharon Marie and Martha Delaney for their development of this year’s CVI track.
(You may want to reach out to the folks planning your area’s next AER conference. You could ask how many presentations they will be having on Cortical Visual Impairment. Just a thought.)
I was present for Peg Palmer’s presentation “Assessing children with CVI using Dr. Roman-Lantzy’s CVI Range,” Dr. Christine Roman-Lantzy’s follow up discussion following her “Implications of CVI in the Development of Literacy, Language, and Social Skills” presentation, and Ellen Mazel‘s presentation, “Serving our students with CVI: Learning Assessments and Intervention Strategies.”

Here are some of my takeaways from this conference:

The Perkins-Roman CVI Range endorsement is a necessary starting point and here’s why.  (Good to know for future stare-downs with school administrators about the importance of proper training for the teachers who work with our children.)

Right off the bat, Dr. Roman-Lantzy asked the discussion group if any of them were unsure about the CVI Range endorsement.
As a parent, I was surprised by this question. I’m just glad an endorsement exists  to give teachers the skills they need to improve educational outcomes for our children. I was more surprised when a few of the teachers raised their hands.

Dr. Roman-Lantzy asked them why they had reservations.
One of the teachers explained that she knew several experienced TVI who did great work with children with CVI but did not have the endorsement. Some teachers did not see the point of the endorsement. Some thought the CVI Range endorsement was extra work – more hoops to jump through at their own expense- for teachers who already had substantial experience working with children with CVI.
Dr. Roman-Lantzy acknowledged their doubts and agreed that there are experienced TVI who are more than capable of working with children with CVI. She mentioned that she herself is not endorsed.  (My mind was blown.)
Her point – an important one – was that while CVI has been discussed over the years within the field of the education of children with vision loss, there has yet to be a rigorous, commonly accepted standard of training for teachers to work with children with CVI.

(This leads me to paraphrase Ellen Mazel. My apologies to Ellen Mazel. )

The 2 most dangerous teachers Ellen Mazel has ever met are
1. The TVI who has never heard of CVI
2. The TVI who has been to one workshop / conference on CVI.
Boy, did that resonate with me. I wonder how many of us have had a teacher tell us – “Oh, I know CVI. I took a workshop once.”
Surely, it’s not just me. I bet I’d recognize the slight indentation on your forehead where you banged your head on the table after hearing these words. It’s okay. I’ve got one too.

We have been affirmed by the CVI Teacher herself!

This was worth the whole trip to Vermont, including losing my driver’s license, and, the resulting extra security patdowns to get home.
Now some history on the development of the CVI Range endorsement.

(Use this when you begin advocating for your child by telling your school system that a CVI Range endorsed educator is a requirement for your child’s ACCESS to her education.)
The lack of a standard educational protocol for training TVI to work with children with CVI has been a concern for Dr. Roman-Lantzy for years. In recent years, she went to the associations that recommend topics of study for university TVI preparation programs.

She asked them to recommend that CVI be included, to no avail.

Then, she approached Perkins School for the Blind.

Perkins met the challenge of training teachers to educate children with the #1 pediatric visual impairment in America today (and tomorrow and 9 months from now and 2 years from now).  It’s not going away, folks.

To address the growing need, Dr. Roman-Lantzy and Perkins collaborated to create the endorsement and other classes surrounding specific aspects of CVI.
For their willingness to address the issue of CVI, this CVI mom applauds Perkins and its President and CEO, Dave Power. Dave Power is also the father of a son with dual sensory impairments. It does not surprise me that a parent of a special needs child made the decision to move the CVI Range endorsement forward.
During the discussion session, Dr. Roman-Lantzy explained that “no one is getting rich off of the CVI Range endorsement.” There are administrative costs to running the classes which are offset by the fees.
She further explained that the creation of the CVI Range endorsement was a way to acknowledge that every endorsee has the same foundation of knowledge about CVI and has the ability to use the CVI Range accurately and effectively.  The endorsement means you know how to use the CVI range, however, knowing how to address the unique learning needs of every child identified with CVI is an ongoing learning process. CVI is a complex diagnosis. It covers a wide spectrum of children with varied abilities. Research is still unfolding.

Learning all things CVI is happening for all of us in real time.
Hearing this discussion, I can understand why an overworked Teacher of the Visually Impaired with too many children on her caseload and fewer available resources would be dubious about extra training for a “new” visual impairment.

She does not have extra time. She is being pulled in too many directions. Depending on the state and depending on the day, she may be expected to provide early intervention in the morning for an infant with albinism in a neighboring county; at lunchtime, she may be pulled into an IEP meeting for a 4th grader with nystagmus; in the afternoon, she may be transcribing civics homework into braille for a high school senior who is blind.
Changes in our educational system to give TVI fewer caseloads, more resources, more extensive professional development, and the time it requires to do their job well need to happen yesterday.
It is simply too much to ask these teachers to do more.

BUT,

nothing about having a child with Cortical Visual Impairment is simple. 
Until we can get universities to add CVI to their teacher preparation programs

AND,
until we can make sweeping changes in the system of educating children with vision loss

We have to ask.

Our children can’t wait. (Ellen Mazel again, everyone!)

Yet, they are waiting.

Every day a child with CVI sits in a classroom without appropriate accommodations – without ACCESS – to her education, she is losing learning time.

The awareness of time lost is the motor that drives CVI parents to ask overworked teachers to learn more about CVI.  It is why we ask them to help us give our children access.

To wrap up this post, I will repeat what I said to the TVI and COMS in my presentation.

We need you to believe that our children can learn.  

We don’t expect you to have all the answers.  

Help us find the answers.  

We have to start somewhere.  

Thanks to these formidable ladies, we have a starting point.  

 

CVI ladies

Moms on Monday #6 / Kathryne from LA

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

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

Mom: Kathryne H. 

Child:  “Little C” / 21 months old 

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

Topic: Hospitalization and Regression

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

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

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

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

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

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

We actually had a skill improve IN the hospital.  

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

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

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

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

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

 

Adventures in Advocacy / NE AER / Ellen Mazel / Standing Room Only, Part 1

standing room onlyThe Northeast AER Conference in Burlington, Vermont wrapped up Friday, November 17th.

Thursday, it was standing room only for Ellen Cadigan Mazel, M. Ed. CTVI. Ellen is the CVI Program Manager for the Perkins School for the Blind. (Her blog, CVI Teacher at wordpress.com is required reading for CVI parents, TVI and anyone who cares about a child with CVI.)

The information and discussions that arose from the presentations at NE AER should be another post topic.  I will do that one next.

For now, I will share briefly what I experienced and what I learned from discussions in and around the presentations.

First, it made my mom’s heart glad to see so much interest in CVI.  The fact that Ellen’s presentation was standing room only and Peg Palmer’s would have been if it had been in a smaller room was encouraging.

Many TVI, COMS, and administrators showed up to learn more about the condition that affects our children’s access to the world.

There were 6 presentations on Cortical Visual Impairment during the 3 day event.  Dr. Christine Roman-Lantzy was there!  I was present for an eye-opening discussion session. (Saved for Part 2) 

(I couldn’t stay for Matt Tietjen’s presentation on What’s the Complexity, but I really wanted to.  I highly recommend parents and teachers familiarize themselves with his work around complexity and literacy.  It is a perspective we all need to understand to help our children make progress visually and to understand what they are seeing. Check out the Perkins CVI Hub for the next class or webinar.)

This amount of information and discussion about CVI at an AER (the Association for the Education and Rehabilitation of the Blind and Visually Impaired) conference was unprecedented.

It would be great to see this kind of interest at every 2018 AER conference in every state or region of the United States and Canada.

Wouldn’t it? 

To share this opinion, you can find your state’s AER at http://www.aerbvi.org.

Find the president of your state’s AER and send her/him an email about your child, about CVI, and about the need for more teachers trained in understanding CVI.

You could ask them how we as parents can support our TVI in this training.  You could ask them what we need to do help make progress in getting CVI recognized as the #1 pediatric visual impairment in the Western World.  

I mean, since it is.

Also, you can send the email to these folks too:

AER’s Executive Director, Lou Tutt, lou@aerbvi.org 

AER’s Chair of the Personnel Preparation Committee, Olga Overbury at olga.overbury@umontreal.ca

AER’s Chair of the (provisional?) Neurological Visual Impairment Committee, Susan Sullivan at ssullivan@aph.org 

Since I had given my presentation to essentially the same audience at Peg Palmer’s presentation the day before, I shared other parent stories from the previous post where I asked you what you would say to a room filled with TVI.

This is what I shared:

From Kathryne in LA:  “My theory on the lack of interest in addressing outcomes for CVI is that our kids have all been lumped as multiple disabilities.  Incompetence is assumed. That is not to say that blind children can’t have multiple disabilities, but CVI is more prevalent in the multiple disabilities class.  Since it’s more work other therapists and teachers ignore it. 

Addressing my son’s vision has given him more improvement in all areas.  More than any other therapy.  We are now starting to see improvements in other areas now that vision has improved.  

She asked me to point out that many of the other skills will follow if vision is improved.” 

 

From Anna in OH: Show care, compassion and patience.  If someone is asking for a CVI Endorsed provider, there is a reason.  

The good news about CVI is that we can do something about it.  Please accept the challenge to learn more about our children.  It will be worth it!

Please listen to the parents’ concerns and ideas.  Their children are their life, their whole world. Parents do know what they are talking about.

A passionate/trained/knowledgeable/driven CVI Endorsed provider is worth their weight in gold.” 

Then, I shared a couple of stories about the frustrations parents face when looking for appropriate educational services for our children.

One mom called her local university teacher preparation program for teachers of the visually impaired and asked if CVI was covered in the curriculum.  The head of the program told her no.  When she asked why, he said, We can’t be all things to all people.” 

One mom called her state’s School for the Blind when her son was identified as having Cortical Visual Impairment.  When she told them her child’s diagnosis, she was told, We don’t serve those kids here.  It’s too expensive to train our teachers in CVI.”  

If these 2 stories frustrate you, they should.  We have a lot of work to do to raise awareness and to raise our expectations of how our children are taught in their educational placements.

There will be more to come on this.

And, I wore this shirt. t-shirt

 

Brenda, the kickass mom from Seattle and the brains behind the blog and FB page, Start Seeing CVI,  made them and some proceeds of sales go the growing Pediatric Cortical Visual Impairment Society.

What a lovely holiday gift, if I do say so myself!   https://startseeingcvi.com/?s=T-shirt

More to come to wrap up NE AER.

Until then, Happy Thanksgiving!  I continue to be grateful for other parents who remind me that we in this together.

Because we are.

 

 

Seeking More Moms for More Mondays

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

We need more Moms on Mondays.

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

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

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

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

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

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

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

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

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

Basically, my off switch was broken.

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

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

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

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

We.  Never.  Close.

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

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

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

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

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

This is your brain on hypervigilance.

But, I digress.

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

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

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

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

Send it to info@cvimomifesto.com.

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

Moms on Mondays

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

When did you first learn about CVI?

How were you given the diagnosis?

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

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

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

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

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

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

 

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

sorrows borne

Moms on Monday # 5 / Lauren from PA

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

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

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

From the blog:

About me and Emma

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

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

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

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

Thank you Lauren and Emma!

Northeast AER 2017 / Adventures in Advocacy / Peg Palmer knows CVI

Good morning fellow families of well loved children who happen to have Cortical Visual Impairment,

I am writing from the Burlington Hilton where the 2017 Northeast AER conference is well under way.  I have heard that the attendance is roughly 300 TVI, COMS (Certified Orientation & Mobility Specialists), Low Vision Therapists, Occupational Therapists, Physical Therapists, with some program directors thrown in for good measure.

This is a great turnout.

Thanks to the efforts of Dr. Roman-Lantzy and people who lead the DeafBlind Projects in the Northeastern United States, this part of the country is well ahead of the curve on awareness of Cortical Visual Impairment.  There are TVI here who received training from Dr. Roman-Lantzy over 10 years ago and have been honing their skills and gaining knowledge ever since.

This conference has a CVI track – meaning there are presentations on various aspects of CVI in almost every time slot.   This may be almost unheard of at a conference like this.  It certainly is from my personal experience in which I show up at conferences and ask questions about CVI just to see what the response will be.  The response is usually a cold, hard stare from the presenter who is probably wondering who let a parent in.

It is refreshing and maddening at the same time.

Yesterday, Peg Palmer, a Perkins-Roman CVI Range Endorsed TVI with decades of experience, allowed me to hijack 15 minutes of her presentation about the CVI Range.

A shout out to Peg Palmer whose professionalism and compassion knows no bounds.  Connecticut is lucky to have her.  Her presentation on working through the CVI Range was very informative.  The videos of students she showed elicited a lively conversation and a lot of questions.

Exactly what we need.

I was able to talk to a room of 50 TVI and COMS (with a few therapists and a couple of program directors thrown in) to give them a parent’s perspective.  I shared some of my story as E’s mom and how challenging it has been to get CVI recognized, let alone understood in classrooms.

I asked them three things:

1.To believe in our children’s ability to learn

The presence of CVI is not an indicator of cognitive ability.  (Source:  The CVI page on the American Printing House for the Blind website)

I told them the Lego Tree story (see post on Lego Trees) and explained how easy it is for teachers, aides, and therapists to develop low expectations for our children if they do not understand the characteristics of CVI.  How many learning opportunities get lost if a teacher does not understand latency and lack of visual reach?  Too many.

2. To reach out to AER and to ask them make CVI a priority in professional development and in university teacher preparation programs

A few weeks ago, I had a meeting with the Executive Director of AER, Louis Tutt, and the Deputy Executive Director, Ginger Croce.  They very kindly answered my questions about AER’s slow recognition of Cortical Visual Impairment.  Only last year, did AER put together a provisional committee on Neurological Visual Impairment.  

Mr. Tutt told me AER responds to the concerns of its members.  So, if AER members contacted the president of their state chapter with the message that more professional development needs to happen for TVI and that future TVI needed to get more training on CVI, progress would be made.

Now we know.

Did you know that parents can join AER as a Associate Member for $98/year?  This is a non-voting membership category for anyone who is not employed in the field such as a parent or caregiver.

FYI:  Here are some email addresses you may find useful.

Executive Director, Louis Tutt – lou@aerbvi.org

Chair of the Neurological Visual Impairment Committee, Susan Sullivan, ssullivan@aph.org

Chair of the Personnel Preparation Committee, Olga Overbury, olga.overbury@umontreal.ca

You can find the president of your state AER chapter at aerbvi.org.

You could tell the powers-that-be at AER that you are the parent of a child with CVI and that you value their dedication to children with vision loss.

You could tell them that children with Cortical Visual Impairment, just like children with ocular vision loss, are not incidental learners (See how that came in handy?).

You could tell them that children with CVI require a different educational approach than children with ocular vision loss.

You could ask them to make educating children with CVI (the #1 Pediatric Visual Impairment in the United States and the Western world) a priority.  That means university teacher preparation programs need to add CVI to their curricula.  That means school systems need to provide extensive, ongoing professional development.

Understand this.  No one has all the answers.  This condition is complicated.  Each child is unique.

What we need to ask is that they join us in asking the right questions and seeking the answers.

3. To seek out more training

I told them about the Perkins-Roman CVI Range Endorsement.  I told them it wasn’t fair to ask them to do more training when that are understaffed and overworked.  I also said the training they got for children with ocular vision loss does not work with our kids.

So, to sweeten the deal, I offered pie.

Really, it’s all I’ve got. me-and-peg-e1510842788984.png

 

Northeast AER 2017/ A CVI Mom meets Vermont

Hello Fellow CVI Families,

Today, at 6:30 a.m., I boarded a plane from Dulles airport in D.C. to JFK, and then, boarded another plane to Burlington, Vermont to attend the Northeast AER conference.

AER is the Association for the Education and Rehabilitation of the Blind and Visually Impaired, the professional membership organization of administrators, teachers of the visually impaired, orientation and mobility specialists, and other vision professionals.

AER chapters around the country have annual conferences.

We CVI parents are often talking about how we need more teachers with expertise in the unique learning needs of children with CVI.

How will this be achieved if we don’t start making our voices and our children’s stories heard?

The kids are already in the classrooms.

Time is passing.

This urgency put me on a plane to where I knew I could reach out to some of the educators who will work with our kids.

Now, I’m staring at my computer screen wondering just what to say to TVI who are already overworked and understaffed.

I will keep you posted.

I can report so far that Vermont has

1. So. Much. Flannel. (a big selling point for me)

2. A restaurant called The Skinny Pancake.  I didn’t eat there, but, I may move in if my return trip doesn’t pan out..

because

I lost my driver’s license somewhere between D.C. and Vermont. (Expletive deleted times 10.)

If I don’t make it back, please forward all future correspondence to The Skinny Pancake at the Burlington Airport.  I will be the woman in the corner passed out in a blissful sugar coma behind a pile of syrupy dishes and covered in crumbs.  Wearing flannel.

I can think of worse ways to go.