Moms on Monday / Storytelling is dangerous

“Storytelling is dangerous to those who profit from the way things are because it has the power to show that the way things are is not permanent.  Not universal and sometimes, not even necessary.” 

-Ursula Le Guin


 

Hello fellow families of delightful children who happen to be identified with Cortical Visual Impairment,

There are several mothers out there who have let me know that they are working on a post for Moms on Monday.  Ladies, I thank you. I’m a mom and it’s Monday, so I’m going to invite you once again to share a part of your and your child’s story with us. When you have the time, of course.

As we all know, and as Dr. Roman-Lantzy frequently says, CVI Moms are the busiest people we know.

We are the busiest people she knows because we are working tirelessly to get our children acknowledged and accommodated in a system that is not built to acknowledge or accommodate them.

The way things are is exhausting and discouraging.  

I hope to gather as many stories as possible as a resource of personal experiences for families. Every story is important.  Please know that there are no wrong answers.  You can write something original, or you can use the questions in the Calling All CVI Moms post as a starting point.  You can help another parent just by allowing your voice to be heard and allowing your child to be seen.


There is another reason for collecting stories.

As the writer Ursula Le Guin reminds us, the way things are is not permanent.

Not universal and not even necessary.

Let that percolate for a minute.

The way things are is not permanent

Not. Universal.

And 

Not. Even. Necessary. (This is my favorite part.)

We have a unique ability to assess the shortcomings of the systems we are fighting. (Did you ever think you’d be an expert on neurology, ophthalmology, neuroscience, & methods of teaching children with sensory loss?  Me neither.) 

From our shared experiences, we have the ability to imagine a better way and to work towards a Way things are” that recognizes and provides for children with CVI.  

Our stories will become a spotlight on inefficient, outdated methods of data collection and a tone deaf educational system. Our children matter. They need to be counted. They need to be taught, actually taught. (ACCESS! They must have access! They are not incidental learners! Sorry, I just had to get that out.)

As CVI families begin to advocate, they will find themselves in the offices of their elected officials and speaking in front of school boards. When CVI families begin to advocate, they may feel as though they are fighting an uphill battle (yep) and that they are alone (NOPE)

The methods of keeping track of our children on local, state, and even the federal level are woefully inadequate.  States vary in their expectation of counting children with special needs, and CVI does not even make it on the list of many states.  It is still called “Cortical Blindness” in many places.  We need to change that.

If the children are not identified, and not accounted for, then the funding necessary to provide resources will not be included in your state budget or the federal budget.

There are plenty of state legislators who will not want to give you the time of day because you and your story represent more expenses in your state’s government.  That is just too bad because it’s your budget too.  You live in and pay taxes in your state.  Heck, you vote!  (Please vote.)   Your friendly neighborhood legislator needs to meet with you, a friendly neighborhood constituent.

Here’s an example of the power of storytelling.

When we moved to Indiana, Eliza was 2 years old.  She had one more year of early intervention.  She was globally delayed.  We qualified for several therapies, occupational, physical, speech and developmental therapy.  I was so grateful to have access to these services.  I knew, however, that her lack of usable vision was going to affect how useful all the other therapies were, so I asked about early intervention for vision loss.

I was directed to the Indiana First Steps matrix – the database for all of the providers in the state.  When I entered “visual impairment,”  the name of an Optometry professor at Indiana University came up.

One name.

For the entire state.

And, the description mentioned making an appointment to come to his office to have your child assessed for glasses.  Not home visits.  Not early intervention.

What about the children who were blind?  Or, who, like Eliza, were legally blind due to Cortical Visual Impairment and who needed to be taught to see?

I asked around and was referred to the Indiana State School for the Blind and Visually Impaired.  I was able to set up an appointment with the Outreach TVI who came to my house to meet Eliza and me a few weeks later.  She was the most wonderful and experienced TVI.  She knew about CVI.  She understood the lack of access and calmed my fears.  She gave me several articles and showed me some ways to interact with Eliza that had not occurred to me.  She stayed for over 2 hours.

My prayers were answered.

I asked to schedule our next appointment.

And, I discovered that this wonderful TVI had a caseload of over 300 children.

One teacher was the entire early intervention team for infants and toddlers who were blind or had severe vision loss.  She drove around the state staying as long as she could, providing everything she could in the very limited time and with the very limited resources available to her.  She knew it was not nearly enough.  What she provided was what the system would allow.

It was just how things were.

By the time she could see Eliza again, Eliza would have aged out of early intervention.

How was that okay?

To make a long story a tad shorter, I eventually found myself testifying before committees at the Indiana Statehouse about the lack of early intervention for infants and toddlers with vision loss.  I poured my heart out about how hard it had been to have a baby I could not reach while some committee members chatted or got up and left. (Not all. Some were very receptive.)  I had meetings with state representatives who did not crack a smile the entire time I sat across from them.   It was easy to walk away from these experiences and think that nothing would change.

I also had meetings with state representatives to vowed to work with me and did.

statehouse

Image:  Three women seated around a table.  Annie Hughes and Rebecca Davis meeting with policy staff at Indiana Statehouse.

Over time and with the help of Indiana State Senator Mark Stoops, and his brilliant policy director, LeNee Carroll, Indiana made changes to its Birth Defects Registry (worst. name. ever.).  We got CVI and visual impairments added.  We were able to advocate for and to build a system of early intervention services specifically for children with vision loss.

We (that wonderful TVI, Annie Hughes, an agency called Visually Impaired Preschool Services, and a group of kickass families) changed the way things were.  

It can be done.

After your interaction with the cranky legislator who does not want to fund more services for children with special needs, you can tell Rep. Cranky to go to CVI Momifesto to meet more parents of children with CVI and to learn more about what they have gone through.  The stories here can provide back up.

There is more back up on the way.  2018 will indeed be a turning point in the awareness of CVI.  Many CVI moms are working to make sure of this.

You have the power to change the way things are.

gals

Image:  Three women standing with arms linked.  Meredith Howell (CVI Mom) and Annie Hughes from VIPS Indiana, and Rebecca Davis

 

 

Death by IEP / A New Category (Not a previously unpublished Agatha Christie novel…although wouldn’t THAT be cool? …but I digress.)

Hello fellow families of glorious children who happen to have Cortical Visual Impairment,

It’s IEP season at our house! 

That festive time of year parents of students with special needs eagerly anticipate with the kind of glee small children save for Santa.

Deck the halls with articles about neuroplasticity and webinars on Orientation and Mobility….Fa La La La and the CVI Range….. Ho Ho, ah phooey.

I can’t fool you.  I am not jolly.

Technically, it’s always IEP season at our house because I continue learning what I have to ask for and how to advocate for my complicated girl with a brain based vision impairment not currently acknowledged by the vast majority of school systems in the U.S.  More importantly, it is not acknowledged by, or regulated in, the current laws of Special Education.

Ho Ho – Holy Crud, this is hard. 

(To get us all on the same page, here’s a very basic definition of an IEP.

“IEP stands for Individualized Education Program.  An IEP is a written statement for a child with a disability  that is developed, reviewed, and revised in a meeting in keeping with certain requirements of law and regulations.

The IEP has two general purposes:

(1) to establish measurable annual goals for the child;

(2) to state the special education and related services and supplementary aids and services that the public agency will provide to, or on behalf of, the child.

When constructing an appropriate educational program for a child with disability, the IEP team broadly considers the child’s involvement and participation in three main areas of school life:

  • the general education curriculum
  • extracurricular activities
  • nonacademic activities”)
Source:  http://www.parentcenterhub.org

By the way, we parents are a critical part of the IEP team.

Don’t let anyone tell you otherwise.  Especially when it comes to CVI.  We have a long, bumpy road ahead of us, but we are the ones getting educated about CVI.  We are the ones seeking out experts, reading journals and books.

(Speaking of BOOKS, Dr. Roman-Lantzy’s NEW book, Cortical Visual Impairment: An Approach to Assessment and Intervention, 2nd Edition is out!!!!

Go to the AFB Store to check it out! 

https://www.afb.org/store/Pages/ShoppingCart/HomePage.aspx 

Then Celebrate!!)

We moms and dads are critical members of our children’s IEP teams.  We stay up late researching articles on CVI and our children’s other needs and diagnoses.  We print them out the night before.  We highlight and staple the articles filing them in manila folders with our children’s names written neatly on the tab.  This is our attempt to have some control over a situation in which we have nearly no control whatsoever. (Or maybe it’s just me.)

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Image:  A haggard woman in sunglasses holding stacks of research in each hand prior to an IEP meeting.

I am a perpetual optimist, much to the annoyance of my husband and some of my friends. Yet, despite my tendency to be ridiculously optimistic in the face of dire circumstances, I am worn down by years of IEP meetings that seem to go nowhere.


I have not learned the skill of successful IEP planning.  I am embarrassed to admit this. My daughter is now 11-years-old and I still feel inept and ineffective.  I feel as though I should be smarter than this.  

Googling “IEP assistance” brings up  many, many resources for IEP writing and advocacy.  I suppose I am in good, if frustrated, company.


 

In spite of plenty of effort and research, I  haven’t been particularly successful in articulating how Eliza needs to learn and how the school needs to put it in place. I’m worn down by giving each new school and each new teacher the benefit of the doubt for a few months,  then discovering that the implementation of what we put in the IEP was not carried out.  I’m worn down by insisting that she can learn more than the school thinks she can (“The downward spiral of low expectations.”).  I am worn down by seeing stacks of articles I printed out, untouched on someone’s desk.  Or, never seeing them again.

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Image:  A dining room table covered in papers, low tech communication devices, pictures and binders in preparation for an IEP meeting

Every year I spend  hour after hour attempting to convince, cajole,  and then, demand that the school team learn about how CVI is an obstacle to my child’s ability to learn and WHAT TO DO ABOUT IT.  I have hired private consultants and therapists with money I do not have.  I have documented the progress we make at home to take to school to show what Eliza can accomplish with mutual goals, high expectations, and a common understanding of how to navigate Cortical Visual Impairment because it is an issue every waking second of her day – much like my typical vision is with me every waking second of my day.

Meetings are planned.  School staffs are polite and weary.  Meetings end.  Everyone needs to get back to their jobs.   We agree to disagree.  I refuse to sign the document, or sign in partial agreement with my handwritten list of concerns.

The NEXT IEP meeting is scheduled in a couple of weeks so we can all jump back into the ring and continue the match.

And, before I know it, another year has passed.  I have been humored and circumvented without even realizing it.

I drag myself home after another IEP  meeting to nowhere like the last contestant in a 24 hour dance marathon.  I’ll crawl into a quiet place to sit and stare vacantly for awhile.  (Sometimes I find myself mumbling, “The horror, the horror…”  Ok, that was a slight exaggeration.  Maybe, “the frustration, the lack of understanding…access…..it’s about access, dang it”  Yes, that’s more like it.)

One night as my husband was coolly observing what used to be the dining table (see above), but is now my Command Center For Changing Education As We Know It For Children with CVI  – (too much?) – he commented,

“It’s like Death by IEP.”

And, suddenly my world made a little more sense.

So, now CVI Momifesto has a new category for all of the fun, D-I-Y projects that are our children’s IEPs.   This category will be a place to tell the IEP stories and to share what works and what really doesn’t work.

Baloney

Image:  A post-it note with the words “This is baloney” written on it.  The post-it note is on a copy of an IEP.

To be continued…..

 

 

 

 

 

 

 

Moms on Monday #13 / Rachel from MD

Good morning fellow families of lovable kiddos who happen to have Cortical Visual Impairment!

This morning’s Mom on Monday is Rachel from Maryland.  Rachel’s son, Henry, was identified fairly recently as having the characteristics of CVI.  Rachel hit the ground running educating herself and advocating for her son and our children at the National Institutes of Health.  (See a photo that will make your day below!)

Right now, I am the closest I’ve ever been to truly knowing my son.

My sweet, joyful, funny Henry who is always ready for a hug, a dance party, or a bus ride, but so often is frustrated to the point of tears by the mundane challenges that other 5 years olds negotiate so effortlessly.

Since he was born, we have puzzled over Henry’s vision problems, coupled with developmental delays and behavioral outbursts. Then, only 8 months ago, for the first time, a therapist suggested he had the characteristics of CVI. This moment changed everything.

Rachel and Henry

Rachel and Henry schooling the medical community about the characteristics of CVI at the National Institutes of Health.  How cool is this picture?  

Henry’s vision was always a mystery—at least that’s what every doctor told me.

We saw a pediatric ophthalmologist, neurologist, neuro-ophthalmologist at Children’s National in DC, pediatric genetic ophthalmologist at the National Institute for Health, and no one ever mentioned CVI. This included a series of vision teachers that had worked with Henry since he was 1. So of course, I took the wait-and-see approach. If these doctors and teachers aren’t sure, then Henry’s vision must be a mystery. (Yep, that’s me screaming right now. The daily anger has not yet subsided.)

Our appointments were dominated with conversation about Henry’s ocular issues: his nystagmus and pale, small(ish) optic nerves. Henry also has hypotonia (low muscle tone), vestibular processing issues, and global developmental delays (high fives to all you CVI parents who spend the evenings and weekends at therapy appointments!).

We spent Henry’s first two years of life trying to get him to eat enough. He was in the zero percentile for weight for way too long. By now, he eats nonstop, and we are grateful to be out of survival mode. Like we all have heard, our kids are unique cases, complicated, with a lot of things going on.

But this still doesn’t justify why CVI was not on our radar sooner (I still kick myself for not figuring out on my own that he has CVI).

So back to this moment that changed everything. Henry was in a Pre-K program for students with special education services. His teacher kept asking me about his vision and I kept going back to Henry’s primary ophthalmologist, who told me that his vision was fine (yes, his acuity was in the normal range) and that Henry has attention and behavioral issues that need to be addressed. I naively told Henry’s teacher this and I am forever grateful that she did not listen to me. She got a specialist from the vision office to observe Henry who then recommended him for the Vision Pre-K class.

At Henry’s IEP meeting 8 months ago, one of the vision teachers at the table said, “You know, Henry has characteristic behaviors of CVI.”

I sat there, mouth open, frozen with confusion, and muttered, “What is CVI?” I later learned that this TVI attended a CVI training with Dr. Sandra Newcomb, one of the leading experts on CVI who also recently completed Henry’s CVI Range Assessment—Henry’s in Phase 2 (Roman-Lantzy).

From what I hear from CVI parents across the country, a TVI knowledgeable about CVI is the exception. It is unacceptable that our kids do not have access to trained vision teachers who can provide interventions.

We know that our kids can learn to see with the appropriate interventions (Roman-Lantzy), so why, WHY, do universities refuse to include coursework on CVI?

A side note on Henry’s current Vision Pre-K class. Henry’s teacher is a TVI knowledgeable about CVI. The physical environment is CVI friendly and all tasks are modified for Henry’s CVI. There are 8 students in the class with a range of vision issues, half of which have CVI. The school’s OT, PT, and Speech therapists adapt their work based on Henry’s CVI needs. Even the PE teacher develops activities adapted for the blind and visually impaired. I know, is this for real? It is. Henry’s placement is an anomaly in this country. Every child with CVI deserves this opportunity. Unfortunately, this vision program stops at Pre-K and because Henry is low-incidence (I. Hate. This. Term), he has fewer options available for Kindergarten. So I join the ranks of fierce parent advocates to ensure my son’s needs are met and that he has access to all aspects of the learning environment.

It’s been a whirlwind trying to learn as much as I can about CVI, while processing the range of emotions that come with this new diagnosis—gratitude, anger, relief, frustration, excitement, WHY MY SON?!, and hope. Dr. Roman-Lantzy’s brilliance and expertise continues to help me and thousands of families help our kids see.

Brenda, creator of Start Seeing CVI, said it best, “She is our Annie Sullivan.” Dr. Roman-Lantzy, thank you from the depths my heart for enabling me to truly understand my son.

I know my son now. I know why he doesn’t use or rely on his vision. I know why he has frequent meltdowns and why he has trouble with transitions. I know why he’s never looked me in the eye and why he requires constant hugs. I know why he hates reading books and doing fine motor tasks. I know why he has difficulty with attention and is always on the move. I know why he loves yellow buses and yellow everything. I know why he doesn’t recognize me when I pick him up at daycare. I know why he always holds my hand when ever we are outside or in a new environment. I know why he can’t find something that dropped onto a patterned rug. I know why reading and writing will be a struggle, but he will learn to read and he will learn to write. I know my sweet Henry, I know how to be his parent, and I am filled with immense gratitude.

What has been my one of my greatest joys lately is connecting with CVI moms from across the country. Being able to revel in our shared experiences, to ask questions, share resources and strategies, to get fired-up, and to know that I have these brilliant and fierce woman to lean on, gets me through the exhaustion and unsure moments.

This year is the first of many years of being a CVI tiger mom. To make sure the medical and education fields wake up to CVI, so no parent is ever left wondering why their child’s vision is a mystery. And no parent ever has to sit in an eternal IEP meeting trying to convince the team to take their child’s CVI seriously.

To all the CVI parents out there, the highest of fives. Onward!

Thank you Rachel and Henry!   

To purchase your or your child’s own Start Seeing CVI t-shirt, go to https://startseeingcvi.com/buy-the-t-shirt/.  Just in time for IFSP or IEP season!  Half of the proceeds from purchase will go to support the Pediatric CVI Society, the only non-profit organization dedicated exclusively to Cortical Visual Impairment.

 

Moms on Monday #12 / Anna from OH

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

This morning I am so glad to have permission to share the words and the works of a mother who has helped lay the foundation of the Pediatric CVI Society over the past few years.  She has made great strides in raising awareness about CVI in her local community through her creative fundraising methods. In addition, she and her oldest daughter, Olivia, have been active in changing societal perceptions of children with special needs.

Anna from Ohio is the mother of three beautiful, energetic children and a RN who teaches student nurses.

In 2013, Anna started a blog, Hope She Smiles (http://oliviacansmile.blogspot.com) to chronicle her family’s experiences after her daughter, Olivia, was born.  Anna gave me permission to repost some of her inspiring blog.

Thank you Anna and Olivia!

From September 2013

“Take her home and hope she smiles” was the quote from the Neonatalogist the day after our sweet Olivia was born. 

The question that I’ve been asking myself over the past week is, “Where do I start?”

Usually the best place to start is at the beginning, but historically I do not follow the path that is paved. In an attempt to answer questions that I am frequently asked by other parents of children with CVI is, I will focus on the present with the past sprinkled in.

In August of 2007, we didn’t know what Olivia’s future held. We heard news from the NICU team at West Penn Hospital that would change our life forever. After suffering seizures and apnea 12 hours after birth, she was life-flighted to Pittsburgh. Her diagnosis was massive stroke in utero, cause undetermined.

What did this mean for her, her development, and her quality of life? We had so many unanswered questions. As a nurse myself, I struggled with understanding what this meant for a newborn. I knew in that moment that I was not acting as a nurse, but as a mother. A mother? I had only been a mother for 24 hours and I didn’t know what I was supposed to do.

SO the present…Where is Olivia now?

With the help of Early Intervention; Occupational, Physical, Speech, Vision therapies, follow up appointments; and a new appreciation for special needs children we were on our way.

She is currently in Phase III of the CVI Range and I know all of the above, plus other things that I will be mentioning in future blog posts, have been instrumental in getting us to this point.

Her main diagnosis resulting from the stroke: Cortical Visual Impairment (CVI). Luckily we were connected with Dr. Christine Roman-Lantzy from the Pediatric View Program when Olivia was only a few days old.

(Dr. Roman) has taught us that the focus should be on her vision, because it CAN improve. This statement gave us extreme hope and determination.

Olivia is in Kindergarten now and is a social butterfly. She is extremely happy and energetic. She can not only smile, but learned to walk, run, jump, ride a bike with training wheels, swim with a life jacket, horseback riding. We have even taken her ice skating.

Our approach to her and her diagnosis is “Let’s try it” Sometimes it is a success and she surprises us beyond belief and sometimes it fails and we vow to try again at a later date.

I believe our nontraditional approach has led us to where we are now.

From September 29, 2013 post entitled “Hope”ful

Hope” she smiles…

The word hope was a word I used often in my life previous to the birth of my daughter:
I hope…we win the game.
I hope…I pass my test.
I hope…I make a lot of money.”

Hope” now has an entirely different meaning. My outlook has changed since my first 30 years.

It all changed when I heard those words, “Take her home and hope she smiles.”

Hope has given me the drive to seek out interventions and modalities that will improve Olivia’s life. It has given us strength when the road that we are on proves to be challenging and frustrating. It has secured my belief in the blessings of God.

Hope reminds me that no one is perfect, we all have challenges that we face. I am proud to be helping Olivia meet those challenges head on.

Hope drives me to find a way.

Hope doesn’t come without disappointments. I hope for her to see, talk, read and write like all the other kids. I hope for her to make lasting friendships. Hope-fully these accomplishments will just take a littlemore time.

Lastly, I need to mention what drives hope. What is the fuel that gives us hope? Only one word…LOVE

From September 2013 post A Whole New World

My occupation is an RN. Currently, I work as a course instructor at a school of nursing. My job is to educate future nurses. I spend hours preparing objectives, lectures, exams, quizzes and teaching on the clinical unit.

I admit that I feel guilty that I devote so many hours of the day educating others when I have a child at home in need of learning a basic function–sight.

I am concerned when I send her off to school will she be learning in an atmosphere and a way that CVI children need to learn.

I have to somehow learn to let go and entrust other people, other professionals, to do their job.

But do they really know about CVI and all that it entails? Are they good enough for my child? I believe every parent feels this way regardless of the situation.

I do understand how crucial these early years are in the development of her vision. It can improve. But how?

Traditional methods used for visually impaired children to learn do not work for children with cortical visual impairment. The educators need to realize this and be able…no, willing…to adapt her learning appropriately.

So my goal is to find that way. 

Bridging into Phase III on the CVI Range is a miraculous happening for my sweet Olivia. But the road through phase 3 seems to be a very complicated one. One that even the experts in the field don’t know how to conquer.

So I accept that challenge. I vow to find a way. My goal is for Olivia to reach a 10 on the CVI range. A 10 means that she functions as a child with no visual impairment would function. Why not? Why not attempt to reach for 10?

Remembering back to our NICU days about a week after Olivia was born, I remember one of the neonatologist saying to us, “Reach for the stars. If you miss, you have lost nothing.” This became our approach to Olivia and to her future.


Anna was instrumental in raising the funding that allowed the Pediatric CVI Society to achieve non-profit status.  Anna and Olivia have done some very creative fundraisers.  Even Olivia’s friends have risen to the challenge of supporting the PCVI Society.

In 2015, Anna’s efforts were recognized by the PCVI Society.  She was the first inductee to the PCVI Society Hall of Fame.

President Dr. Richard Legge said in his remarks, “Without ever being to a meeting, she dedicated herself heart and soul to making PCVIS a reality.”

I loved her speech about fundraising.  I think it resonates for many of us.

We fundraise for Olivia for a better future. I have a confession to make… The fundraising was completely self-serving.

I want better access to pertinent information about CVI. I want access to the professionals in the field. I want to know what the newest developments and research shows regarding CVI. I want to know the best interventions that can be used for children with CVI. I want it for myself and others in my place.

From the beginning of this journey I have been hungry. Hungry for knowledge, like most of you here. Parents, teachers of the visually impaired, speech therapists, occupational therapist, physicians, ophthalmologists… we are all want to be fed CVI knowledge. This society can feed us.
To start fundraising you first have to be willing to go out on a limb, get out of your comfort zone. Ask for donations. It can be scary, but jump in. We would jump into a pool to save our child if they are sinking to the bottom of the pool. We wouldn’t think twice. Jump in for our children. Save them.
Second; share your story, make a connection, and open up. Open up the dialogue with others about what CVI is. Keep your donors in the loop. Keep them informed of the ongoing fundraising, the intent and goals of the society, and the mission statement.
This past year, our supporters donated to our cause in good faith. I asked for donations to a Society, that wasn’t even a society…yet! And they did. The American Cancer Society started somewhere. This is our starting place.

Some of our examples of fundraising include a lemonade stand, an apple cider stand, thirty-one fundraiser, Jamberry fundraiser, Arbonne fundraiser. Other donations came from a fundraiser from Olivia’s elementary school, my co-workers that took up a collection for Christmas, other anonymous donations, and those that donated through the go fund me page. Don’t discount small fundraisers because they add up. If we all participate in fundraising, this society can grow even stronger and even bigger, helping more children with CVI.


 

Did she smile?  Yes!  And she hasn’t stopped!

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Moms on Monday #11 / Cheyanne from NV

This morning’s Moms on Monday is Archer’s mom, Cheyanne, a passionate parent advocate and fellow blogger.  Cheyanne started a blog about life with her beautiful boy  Archer at http://www.sparkingtheneurons.blogspot.com.

 

Hello, my name is Cheyanne.   I am a mother of a stunning, recently turned 4-year-old boy. His name is Archer. We reside in northeastern Nevada, with the ever important dad, and supportive husband Brandon.

Today I will be sharing some experiences to shed light upon advocacy for Cortical Visual Impairment. But first you need to learn a little more about what is so stunning about Arch!

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He loves to be outside, even when it’s below freezing! Some of the things he loves are finding and throwing rocks, digging in the sand and dirt, and catching rays of sunlight.  While doing all these fun things, his eyes are often closed, held at half mast, or his head is turned away from the actual action occurring.

The exhilaration of sounds, be that animals or vehicles provide a rich auditory experience sometimes creating little giggles or a deep focus, searching for understanding of the origin. Did I mention all the tactile opportunities an outdoor experience provides?

He enjoys sitting at the edge of a door and being a “gate master” opening and closing the door. Now there are many sensory needs he is meeting here. Including the need for movement, a CVI characteristic!

Recently over holiday break, he was frequently requesting to go outside. We began giving him the prompt of “stand-up and look for the round, gold, door knob.” By golly, there he went up on his own, standing against the door looking for the gold, door knob to twist, and open the door so he can go OUTSIDE! His treasures being with his peers, be that at weekly music class, preschool, or going on playdates.

What makes him laugh the most, deep into his belly is his DAD! Whether they are playing with balls, particularly his soccer ball, Elmo, snuggling and singing songs, or on the ground wrestling, his dad is the one to bring out a true authentic laughing session.

As a family we enjoy our down time together. We find it important in keeping a routine for Archer. Music, friends, school and the red garland lining his babysitters hallway are all important to him. After you finished reading this blog post, I invite you to jump over to his blog and read more stories about him growing into life, by visiting http://www.sparkingtheneurons.blogspot.com.

The day I learned about CVI will be frozen in my memory forever, at least in this lifetime. After months of neurology appointments, weekly EEG’s, and daily steroid shots to get infantile spasms controlled, it came time for our 3 month follow-up Ophthalmology appointment.

It was set to be the second time meeting with this particular doctor. At our first appointment he instantly gained Archer’s attention by making bird sounds! Connecting with our little one meant the world to us and made way for us as parents to relax, slightly! He took time to review the big, scary words that had been entering our life, as label after label kept adding up to be included on intake paperwork.

As parents we decided, that I could handle the “routine follow-up” on my own, and daddy went off to work. Archer and I stopped by the jobsite before the appointment and got a good luck hug and kiss from daddy, then off we went.

After asking some questions I thought were routine…

Does your son like to look at ceiling fans? Does he like to look out the window?  Does he ever cover his eyes as if to block out what’s going on around him?

I answered yes to all of these questions.

I added that the red crab on his mobile seemed to catch his eye and make him smile. I explained how we thought it was cute that he blocked his eyes, and joked that was him showing he wasn’t interested in the person trying to “goo-goo-ga-ga” over him.

If you have some knowledge of CVI your light bulb is glowing right now.

And NOW, I know what those questions were leading to.

The delivery of a one-page fact sheet on Cortical Visual Impairment and a referral to the state school of the deaf and blind.

I didn’t understand and was having a hard time letting this information be processed. The doctor re-assured me I would be contacted shortly to get further assistance from the deafblind school. I was in shock, so much shock that emotions were not even present.

I was blank.

I thanked the doctor and assistant, walked out into the lobby to make the routine follow-up and exited the building. Once getting to the car, I slipped into the back seat to breastfeed, my now hungry, fussy baby.

Feeling was coming back to my brain and body.  The hollow pit in my stomach started to burn, to pound, and to get tight all at the same time. I knew this was something big, but didn’t quite know the capacity this “new” label would have on our lives.

I decided to comfort myself with some lunch at a local pizza place. Carrying my baby into the restaurant, I quickly ordered and headed to the bathroom to change Archer’s diaper. Now with a full belly and clean bottom he dozed off to sleep.

I slowly unwrapped the folded single piece of paper and began to read. Disbelief struck as I read the tell tale signs of this diagnosis. My throat went dry, paired with my lungs expanding with deep, wide breaths to keep it together in this public place, not wanting to wake my sleeping child. I asked for a to-go box and paid for my food in a cluster of oblivion.

Again, I sat in the backseat with my stunning boy, admiring the silence of his sleep. It was then time to make the hour long drive home. I called my mom to let her know the appointment was over and that we got some news, but that we could talk about it later. I got on the road. Continuing with the wide, deep breaths, I made it through town and onto the interstate.

This is when the floodgates overflowed. I had to pull off at the next exit and take some time to cry it out.

Cortical Visual Impairment joined the list of diagnoses on this dreary last day of July in 2014.
Archer was just shy of 7 months old. At this point his diagnosis list consisted of the following:   agenesis of the corpus callosum (ACC), uncontrollable seizure disorder, infantile spasms, periventricular grey matter heterotopia (affecting the occipital lobe), enlarged bi-lateral ventricles, hypotonia, and an undiagnosed genetic syndrome, now determined to be a duplication on his 11th chromosome.

Archer’s team began building in Montana beginning with his primary care doctor and LPN. They stood by our sides and listened to us when we came in for our routine 5-day, 2-week, 6-week checkups.   I lost count after that. We knew from the MRI that challenges would be in our future.  These two ladies supported us in hoping for our family to have normal, loving experiences with our newborn. They helped us cherish the newness of parenthood and celebrated with us our stunning little boy.

Quickly, within weeks of Arch’s life, the discussion of which specialist to start with arose.
Those dreaded developmental checklists began. I didn’t get to give many checks in those days, I resorted to drawing smiling faces and our doctor kindly accepted this display of grief.

I quickly stopped reading my “What to Expect the First Years” book, I think by 8 weeks in.
Vision began to be a question I’d say around 4-6 weeks, when my little boy just wouldn’t look me in the eyes while breastfeeding. Occupational Therapy started by 3-4 months of age. He seemed to like the solid red ball.  He would turn away with items displaying combinations of colors and patterns.  The typical over-stimulating newborn toys! Physical Therapy services also started during the Spring of 2014. Yet, there wasn’t emphasis on incorporating strategies to work with his lack of visual engagement.

In August of 2014, we were connected with the state school for deaf and blind and had our first home visit, Archer was 7 months old. APH materials started coming, including a light box. Our biggest struggle was figuring out how to position either Arch or the materials for the best visual access.

We sheeted parts of our home in black fabric, Grandma’s too. We built a little black room for Archer to “play looking” in! It felt as if everything was being forced and nothing came naturally. We lined his highchair tray with black and adhered red duct tape around the edges. We put up a black tri-fold board at the dinner table, or anywhere he was exploring to reduce complexity.

All of these supports had been set-up, before we even opened a case with the state early intervention program. We were ahead of the curve!

By this point there was a never-ending amount of tabs and bookmarks constantly open on my phone and laptop. My new “hobby” of researching was overtaking my mind. Once the official “Cortical Visual Impairment” diagnosis sank in, we began seeing CVI, learning the 10 characteristics. Surprisingly with CVI being the #1 leading pediatric visual impairment in first world countries, we felt like the experts. Even more knowledgeable than most of the service providers, including neurology and ophthalmology, besides our TVI!

Our TVI was calm, quiet, gave wait time, and slowly educated me.  She intervened with  Arch without overloading him. He began to look at the big yellow bird puppet as she slowly moved it to identify strong visual fields. He started to look at mylar on the light box! She had been asking me questions that I didn’t always have answers to. For some I had clear definitive answers! Over a few visits I found out this was her slowly conducting the parent interview questions from Dr. Roman’s CVI Range! It was overwhelming at the time, but set a solid foundation for us to grow from. We found a conference to attend with Dr. Roman and had his first CVI range conducted.

Then we moved to Nevada, a state that is about 30 years behind the curve in vision supports. They have ocular VI knowledge, just not neurological CVI.  It wasn’t taught in their VI programs.

I was the solo expert of CVI on the team.  It felt like I was the solo expert of CVI in the state.

Goals and strategies were set and CVI remained at the forefront of services. There was consideration for most characteristics, besides the most in depth concept of complexity, especially sensory and auditory. He gained visual skills, but his auditory reactions were heavily out weighed. When items were presented with noise and banging he was sure to look.

I’ve heard Dr. Roman say over and over “vision must precede the action” and sadly this was not the case. The providers were open to learning, yet their caseloads were stacked so high it left little down time for “extra” learning outside of the home visits.

Archer transitioned out of EI in Jan 2017, we had the transition meeting, but his seizures returned and we choose to deny services until the Fall. This gave us time to get his health understood before adding more over stimulating situations.

Upon entrance to the early childhood center in Fall of 2017 I learned I was not doing enough to advocate for my child’s needs.
Advocacy begins in your home, with our family and friends. It is all too easy to clam up and keep quiet. Sometimes feeling like you are explaining things over and over, then these people are close to you so offense is taken. The challenge exists consistently.

Fear overtakes you when meeting the milestone of another person becoming the teacher of your child. And for most of us, the services list is long, and teams are big, making advocacy more daunting.  You can feel like you aren’t a part of a team but the outsider.

Mouths drop when I mention CVI accommodations, maybe because they can’t believe I’m requesting, or because the knowledge to understand CVI just isn’t there.

The team listens, it just takes awhile for the concepts to be put into practice. I initiated a CVI schedule built around his school day.  I requested a CVI endorsed team member and CVI Range assessments. They are all willing and open to learn, in fact 3 team members are expanding their knowledge by taking the Perkins 8-week CVI course! We must start somewhere and that is with our voice as our child’s advocate.

Looking back at our short journey of 3.5 years with CVI, in the beginning I wish I would have put more emphasis on latency. Waiting longer for him to visually engage.  NOT impatiently providing auditory cues just to get a reaction.

If your child has recently been identified as having CVI, first, just breathe. Then cry.  Then go outside and take a refreshing walk. Allow yourself to cycle through the grief.

Get connected. You may not understand the language, you will feel like you are studying to become a Ph.D. Your head will feel like it explodes, not on a daily basis, but possibly with each paragraph you read.

Keep going.  Ask the questions.

Ask service providers what their knowledge and understanding of cortical visual impairment is.  Ask if they have ever worked with a CVI student. You are not alone and your child has the right to receive appropriate CVI interventions.

For people that have never heard of CVI, may you know my child sees.

Cortical visual impairment creates challenges with the neurological visual processing of images. To help him understand his environment, use simple language to identify what is going on. He is always listening.  There is no need to be loud or make extra sounds. He will giggle at abrupt sounds.  Help him connect the sound with the visual components by explaining what he is hearing or seeing.

It is my hope you have read to the end!
It is my dream you will share this knowledge with others and keep the conversation going about this underserved population of children with CVI, the #1 pediatric visual impairment in 1st world countries.

Much Gratitude
-Cheyanne Sparks

Sharing a blessing… Help spread his soulful message
ARCHER’S JOURNEY

http://www.sparkingtheneurons.blogspot.com

Thank you Cheyanne for your courageous storytelling! 

 

Adventures in Advocacy / Anger & Courage

Hope has two beautiful daughters; their names are Anger and Courage.  

Anger at the way things are, and Courage to see that they do not remain as they are.  

-St. Augustine of Hippo

I heard this quote during a presentation a couple of weeks ago.  I really needed it this week.

It was a week of preparation for the next round of IEP meetings for my daughter.  As is the new (ab)normal at times like this, I feel overwhelmed, underprepared, and anxious about what comes next.  Every time we go over a new report, we have to compare it to the old reports and I am reminded of what I didn’t know then and then I wonder how much I just don’t know now.  It’s very busy in my head right now.  Reading over past notes and goals I disagreed with leave me frustrated.

I feel like a clenched fist with hair.

(And, nothing else gets done.  Laundry?  Groceries?  You mean we still have to wear clothes and eat?  Haven’t you people done that enough already?  There are reports to read, questions to ask, and schools to visit, dang it!)  

Thankfully, it was also a week in which I was able to participate in a conversation with a group of mothers and a dynamic TVI.  These ladies are determined to make 2018 the year we DO something about CVI on a grand scale here in the U.S.  Listening to the passionate ideas coming from them made me smile and left me with more than a little more optimism than I had that morning.

Now, I feel like a clenched fist with hair and optimism.

This past week, while preparing for the uncertain transition facing my family, I also found myself impressed with the resolve of the CVI families’ growing efforts to raise awareness and to change the current systems of service for our children.

You could say I was living between Hope’s two beautiful daughters if you wanted to be particularly cheesy and need to find meaning in everything you read or hear.  I am particularly cheesy.  I do obsessively look for meaning in everything I read or hear (I wrote the St. Augustine quote on my hand so I wouldn’t forget it, for Pete’s sake.  Now I’m wondering – shouldn’t it be that “Hope has two beautiful parents”?  Wouldn’t that make more sense? That Hope is the result of Anger and Courage?  Will I be struck by lightning for questioning a saint?  Probably.  I warned you it gets busy in my head. My apologies to St. Augustine.)   

As the mother of child with multiple special needs and a vision processing disorder few people understand, I am familiar with anger.

The fundamentals we want for our children are that they are protected, capable, and educated to the best of their abilities.  Easy enough, right?  (Cue the hysterical laughter.  I’ll wait while you catch your breath.)

For parents like us, this includes the extra full time job of raising awareness and educating everyone we come into contact with that – say it with me – CVI is the #1 pediatric visual impairment in First World Countries.  

If you are familiar with anger as well, WELCOME.  You are in good company.

Anger is an energy.  (My apologies to Johnny Rotten.)  

Anger is a building block for Hope.


There is plenty to be hopeful about.

Conversations are happening between families and agencies in the blindness community.  These families are acting straight from the heart out of the all too common mixture of love and frustration we feel as we force  the world to recognize Cortical Visual Impairment and our children.

Soon, there will be a need to ask for more families to reach out, to ask questions, to make themselves and their stories known.

This growing group of parent advocates and TVI will be asking you to join us.  We will need you to reach out to agencies, legislators, and others to educate them about CVI, to let ourselves be counted, and to let them know that our children matter.

We will provide the information you need to feel well-equipped to share your stories.

I hope you will allow yourself to be included.

——————————————————————————————————————————-

This is where the courage part comes in.

You may not think that you want to be someone who will stand up and be counted.

I think that you already are.

Brene Brown, the author and  research professor widely known for her work studying courage, vulnerability, empathy, and shame, describes courage this way:

“Courage is a heart word.

The root of the word courage is cor – the Latin word for heart.

In one of its earliest forms, the word courage meant “To speak one’s mind by telling all one’s heart.”

“Speaking from our hearts is what I think of as ‘ordinary courage.’

As a CVI parent, you operate from the heart every. single. day.  

Every time you make the attempt to educate a doctor or a teacher about CVI, you are speaking from your heart,  You are being courageous.

And, you are making it easier for the mom who will come after you.

The actions you take from the heart are courageous actions.

Reading this post, researching online, following FB conversations, making D-I-Y materials to accommodate your child’s level of vision – all of these activities come straight from your heart.  Through love, you perform acts of courage every day.

Join us as we speak from our hearts, taking our ‘ordinary courage‘ to a wider audience.

ACT of COURAGE/ ACTION ITEM: 

Send your contact info – Name, Email Address, and State to info@cvimomifesto.com. 

Your information will go on a growing list of families facing the same challenges.  The information will not be given to any other agencies.  This is a mom fueled project.  We will use the information to keep you updated on future opportunities to advocate.  

 

 

 

Adventures in Advocacy / MaryAnne Roberto

Movements do not form out of the actions of one or two people.

When you study history you begin to see the patterns of how change occurs.  The frustrations of a relative few become the conversations and the questions that seek out others.

I thought it was just me

gets thrown by the wayside for

What are WE going to do about this?

CVI Moms, collectively WE have spent thousands of days, months, years knocking our heads on the brick wall that is the challenge of finding an appropriate education for a child with CVI.

For a long time, it thought it was just me.  I found out I was so wrong.  I wrote a blog post about Kate Keller.

MaryAnne Roberto, a CVI endorsed TVI and mother to 2 boys who are blind wrote a powerhouse of a letter using examples from history and her own story.

Read this letter.    Get ready to write your own.

MaryAnne Roberto
Envision CVI Consulting, LLC
envisioncvi@gmail.com

Craig Meador, President
American Printing House for the Blind
January 10, 2018
Dear Mr. Meador

I read your letter on the APH Facebook page about all the exciting things APH is doing in 2018 to “Make Big Things Happen”. As the mother of two boys who are blind, the information about advances in technology that will be highlighted and promoted in the new year was exciting. One of my sons is totally blind and gifted. He will benefit from the innovative technology that brings the written and graphic world quite literally to his fingertips so that he can access the same information as his peers.

Both of my sons are adopted, and spent their early years in orphanages in China where they were left to exist with no interventions, no education, no access to the world around them. The nannies in their orphanages loved them, I am sure, but had no ability to ‘break down the barriers of accessibility’ for them. They lived in a country where children who are blind are not educated, and are thought to be ‘less than’ the typical population of children.

People did not understand them, and gave them less than adequate tools to prepare them for learning and thriving. They were left out of most of what went on around them. And then, they were adopted, came home to a family with a mother who is a Teacher of the Visually Impaired, and father who is a former Health and Phys Ed teacher at a school for the blind. Their lives changed, and they are now thriving, learning, and in have great potential for success in their lives. Sounds like a fairy tale with a happy ending, right?

For the children with Cortical Visual Impairment in our country, there is no “happy ending.” 

Like my sons’ experiences in China they are often left to exist in classrooms and programs where there is little to no appropriate education and have no visual access to the world around them.

They are taught by teachers who have had inadequate instruction in their diagnosis, and treated by medical professionals who often do not understand this complex condition.

Their true potential cannot be known when they are not given a chance to experience it themselves.

‘Band aid’ programming is thrown at them, IEPs and strategies are guessed at and implemented, and team members are satisfied that they are ‘doing the best they can’ to serve the needs of the largest population of children with visual impairments in our country.

And so, when I read your post as a mother of two blind sons, I was of course excited about all APH had to offer for the future. But, to be honest with you, my sons’ needs are well-known to their teachers. They are registered for the Federal Quota, receive all the adaptive equipment they need, and are given appropriate services. Their needs are handled by professionals who write accurate goals, collect specific data, and order necessary materials for them.

At the same time, I read your post as a Teacher for the Visually Impaired, and a Perkins-Roman CVI Endorsed specialist, and I was quite disappointed. Nowhere in your post did you even mention the diagnosis that accounts for more than half of the children with visual impairments in our country. There was not a whisper of new advances in research and evaluations, no talk of new technology such as CVI Connect, no discussion of the growing need to reach the children who are learning to read in new and innovative ways.

Your post screamed of Braille access and instruction and was deafeningly silent on the children who are not taught to use their vision to learn, but are treated as if they have no vision at all.
I am privileged to work closely with many parents who are rallying to fight for appropriate services for their children with CVI. Much like Helen Keller’s parents, these parents are not willing to sit back and let the ‘powers that be’ provide inadequate services for their children. They fight long and hard and are met with resistance at every turn, and mostly from the world of educators of the visually impaired. Their voices are getting louder, and their cries are beginning to be heard. Unlike the Kellers, however, many of these families do not have the money or connections to affect real change, but slowly, surely, they are making changes in their children’s lives.
Yet, like Helen Keller and her family, who waited years to find an Annie Sullivan, these families are waiting as well. They are waiting for appropriate university programs that will educate future teachers on their children’s visual impairment, waiting for schools and programs to recognize the need for adequate services, and waiting for organizations like yours to put their children at the top of their priority list to ‘Make Big Things Happen’.
I write this letter to you as both an Annie Sullivan and a Kate Keller. As a mother of blind sons and a teacher of the visually impaired I know well the roads that both Annie and Kate walked, The road that Annie walked was paved with determination and fortitude. The road Kate walked was paved with tears and desperation for the little girl she loved so deeply. In our country today, there are far too many Kate Kellers whose roads are paved with tears and desperation, as they beg for appropriate services and materials for their children with CVI. The Annie Sullivans are ill-prepared to support those children or are not interested in learning new techniques.
And organizations like yours with national and international notability and resources have added to their frustrations and desperation by completely ignoring their children.

As Annie and Kate, I am writing to petition your organization to provide more comprehensive education and materials that will support children with CVI in our country. CVI Connect is one product that can be added to the Federal Quota program to give access to activities and much-needed data to support the students in programs to develop their visual potential. By promoting resources and education in CVI, you will quite literally ‘Make Big Things Happen’ for children, who like my own sons when they sat in orphanages half a world away, have little access to the world. We can do better for our CVI kids, and we can give hope to the thousands of Kate Kellers who cry in desperation for appropriate programming for their children.
Thank you for taking the time to read this letter. I would be more than happy to speak with you regarding your commitment to improve the lives of children with CVI through the American Printing House for the Blind’s resources and education.

Sincerely,
MaryAnne Roberto
Teacher of the Blind and Visually Impaired
Perkins-Roman CVI Endorsed Specialist

 

Thank you MaryAnne for this important lesson in advocacy!

Now, CVI Moms, what are we going to do about it?  

Moms on Monday #10 / Kate Keller from AL

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

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

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

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

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

It is a story of hope.

It is a story of determination.

It is a story of triumph over seemingly insurmountable odds.

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

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

Kate Keller

Image:  Kate Keller

Captain Keller

Image:  Arthur Keller

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

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

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

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

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

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

helen and annie

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

 

Kate, Annie, Helen

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


Helen herself once wrote,

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

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


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

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

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

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

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

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

I do.

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

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

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

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

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

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

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

We know the strength of the stream.

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

It is a right for every child.

The miracles are the children themselves.

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

————————————————————————————————————

 

 

 

 

 

Stone Walls and New Starts

Thank you to Ian Christy, Illustrator Extraordinaire, Designer,  & Cool Rockin’ Dad for the fantastic illustration in this post!

Imagine you were walking down the hallway of an elementary school.  As you walked, you saw brief glimpses through the slender window in each classroom door.  In one class, a teacher stands writing at a whiteboard, her students taking notes.  In another classroom, children gather on a rug for story time.

In the last classroom on the left, you see a similar scene.  Students sitting at their desks, raising their hands, doing their classwork.  You notice that one little girl’s desk is surrounded by a single layer of limestone bricks.

The next day, you walk down the hallway again to see the usual business of learning.  Some children are walking around their room going from station to station.  One class watches the teacher do a science experiment at the front of the class.

In the last classroom, however, you see the little girl’s desk is now surrounded by bricks stacked about 2 feet high.  She is sitting quietly. No one seems to notice them. The teacher stands at the front of the class continuing the lesson.  The students continue raising their hands.

You become concerned.  You return every day.  Every day you look into the last classroom on the left. Every day, the wall of blocks  gets taller and taller.  Every day, the little girl sits quietly, growing more isolated than the day before.  Every day, the classroom moves on around her.  You begin to feel anxious for the little girl.

She is being walled in, cut off from her teacher, her peers, her classroom, but no one seems to notice.  You stand at the window day after day and watch as she disappears behind cold, hard stone.  ian access

You knock on the door and ask the teacher why the little girl is being walled in.  She looks at you as though you have lost your mind.  She cannot see the wall.

You run to the principal’s office to tell him that the little girl is being enclosed in a kid sized stone tower.  The principal goes to look for himself.  He doesn’t see the wall either.

Every day the wall gets higher.

You demand a meeting with the principal, the teacher, and anyone else who works with this little girl.

You show them pictures of stone walls.  You bring them research about limestone.  You find articles from education experts who have studied children behind stone walls for decades, and, who have concluded  (surprise!)  that stone walls make learning very difficult.

Children cannot learn when they are cut off from everyone else.  Stone walls = bad for learning.

The team considers your presentation.  They reluctantly admit that – maybe – they noticed the wall from time to time.  An aide admits she tripped over a brick once but didn’t want to make a fuss about it.

Someone suggests that the stone wall may not be the little’s girl’s only problem.

“Sure,” you reply, “ she may have other issues, BUT, that STONE WALL IS NOT HELPING.”

The educational team takes another couple of weeks to develop a learning plan for the little girl.

Every day, the wall gets higher.

At another meeting, the team tells you that a teacher who works with “stone wall children” will take the little girl out of the stone wall to another room for 30 minutes a week.

But, she’s sitting behind the wall for every other minute of the school day!”

Then, Rod Serling comes out of nowhere, pats you on the head, and, says, to no one in particular, ” Ladies and Gentlemen, you’re entering the wondrous dimension of imagination….Next stop, the Twilight Zone.”

And, scene.


This seems ridiculous, right?  Or, sadly, mind numblingly familiar?

I have spent sooooo much time trying to explain to people that my kid does not have easy access to the world with her visual system.

I have walked by “Library Time” (my personal pet peeve for children with vision loss in a traditional school setting) where I’ve seen children with CVI sitting passively at tables in the back of the library while the librarian reads a book the size of a magazine to the children grouped at the front.

I have found “art projects” in my daughter’s backpack that were clearly colored in by the well meaning aide who finished it while Eliza was self-stimming in the back of the room.  (I know this because I went to art time one day and found everyone – Eliza’s aide included- sitting at the table coloring, except my girl, who was laying on the floor, rocking. I cannot make this stuff up.)

How are these examples any more ridiculous than watching in panic as a child is enclosed in stone, a situation that no one else seems to find problematic?

They aren’t.


To my fellow CVI families,

2018 is a new start. 

There will be opportunities for us as a community to work together to raise awareness about Cortical Visual Impairment and to demand that our children be educated in a manner in which they can learn.

In this year and every year that follows, we must demand access and expertise.  

Stay tuned

and

Happy New Year!

 

 

 

 

Love is who we are and no season can contain it…

Our family is having a low key Christmas this year.  We are staying home.

For the first time in awhile, when December rolled around I wasn’t filling notepads with lists titled “Gifts,”  “Meds and Feeding,” and “Sensory Needs.”  I didn’t have to run to Walgreens three times last week to refill prescriptions that always seem to run out if I even think about taking Eliza past the state line.  I didn’t have to cram our Christmas magic in the back of the car around the wheelchair, feeding supplies, sensory toys, and our very patient, long suffering dog, Rosie.  We did not drive 18 hours this year.  Hallelujah, amen, and cue the choir.

And, still, I’m beat.  I wonder if you are too.

This week, I heard the song, “Love is Christmas” by Sara Bareilles for the first time.  This song just spoke to me.   I was compelled to stop and listen.  The lyrics felt like better written versions of my own thoughts.  Nicely played, Sara Bareilles.  It was a poignant reminder of what my priorities are. Stains on the carpet do not even make the list.

Love is who we are, and no season can contain it.  This brought to mind all of the parents of children with special needs who make holiday magic happen on top of the other daily responsibilities that don’t go away just because “it’s the most wonderful time of the year.”

Love is how we do, let no judgment overrule it.  You know how much effort goes into caring for, researching, advocating for the children who love us and who lead us to be the best parents we can be.

Love is who we are.  Yes, I think that sums it up nicely.

If you are feeling worn down this holiday season, I offer you “Love is Christmas” from one mom to another.  Sorry about the ads.  Totally worth waiting those extra 5 seconds.

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AND, if you are looking for something to watch during all of your down time in the next week (Ahahahahaha!  Whew, that was a good one.), may I suggest this video?

I still have a lot to learn about CVI.  So much information about CVI has to be pieced together like a puzzle for each individual child.  Every child is different. Every manifestation of CVI is unique to each child.

I always find Dr. Dutton’s presentations very educational.  It is good information to pass on to an early intervention or an education team.

Toward the end, he emphasizes the importance of being “radio parents.”  I had never heard this term before, but it made a lot of sense.

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From one mom to another, I wish you and your family love and joy this holiday season and into the new year.