The Education Desert

As many of you know, and many do not, I am the mother of four children with special needs. Yes, that is correct, and not a typo. And yes, I am overworked, overwrought, and over scheduled. In the last eleven years, since we brought our first daughter home from China, until 6 years ago when we brought our son home, I have expanded my knowledge from working with children with visual impairments, to becoming a mom of four very special kids, in addition to four older children. Our children from China have almost every ‘special need’ on the books: our daughter is deaf, and has Cochlear implants; another daughter has Cerebral Palsy, walks with crutches, has limited mobility and significant learning and language issues; our son is blind, developmentally delayed, autistic, non-verbal, and has just about every psychiatric label in the DSM; our youngest is blind, is a cancer survivor, has ocular prosthetics, and is Gifted. Did I miss any area of special need? I don’t think so. We didn’t go about adopting children with every Special Ed area: these were our children, we went to China to get them. It’s kind of that simple and that complicated, but here we are.

I tell you the story of my family to illustrate my interesting position in the field of working with and advocating for children with Cortical Visual Impairment and their families. I am a teacher, like so many of you. I am a professional with knowledge and experience, wonderful stories of successes, and sometimes stories of mistakes and missteps that have taught me and shaped me into the teacher I am today. I am a mother, like so many of you, and as the mother of eight I have had countless experiences with education, advocacy, and school systems. In another life, when my older children were younger, we home schooled, (again, not a typo) so I also had my feet in the water of being the sole educator for my children. After working for more than 20 years in the field, I became not an educator at the IEP, but the Mom. The first IEP as a special needs mom in 2008 was my introduction into the world of what happens on the ‘other side’ of the table.

For the most part in my children’s IEPs, I have been pleased with the services, support and professionalism that greets me. I am an active participant, as you can well imagine, but I have been able to appreciate the skills and expertise that comes in the persons of Special Ed Teachers, Speech Therapists, Communication Experts, Vision Teachers, Physical Therapists, Behavioral Specialists, Teacher of the Gifted, Occupational Therapists, Orientation and Mobility Specialists…did I miss anyone? If I did, I’m sorry. But I deal with them all, listen carefully to their ideas, their expertise, debate the merits of the goals they propose, tweak their thoughts to match the child that I know, and in the end, trust that they have the best interest of my children in mind, and that they will leave the meeting and go forth and educate my child.

As a consultant to families of children with Cortical Visual Impairment across the country, I am constantly amazed at the number of families who face resistance and stonewalling from their children’s education teams. These are children with a diagnosed visual impairment (CVI), often parents come to the table with CVI Range evaluations completed by Dr. Christine Roman, or other CVI Endorsed Professionals. The parents have done their homework, and are often more knowledgeable about their child’s vision than anyone on the team.

These parents come to the table knowing that there is a huge difference between the interventions that the Vision teacher has recommended that are based on ocular principles, and those that are necessary to ensure visual access and improvement of visual functioning based on the CVI Guiding Principles established by Dr. Roman in 2007. Often these parents are bullied and intimidated into accepting mediocre services, are told that their team is ‘knowledgeable’ and that they have had ‘training’in CVI. The teams who welcome outside support and new information are fewer and further between than I would like to think about. It is more common for families to have to fight for the appropriate Assessment (The CVI Range (Roman, 2007)), goals that are based on the child’s valid CVI Range score, and interventions that match that same score, with the expectation that the child’s vision will improve. (Roman, 2007).

I use an analogy in the trainings I conduct across the country that families of children with Cortical Visual Impairment are in a desert, and their child is dying of thirst. They come to the IEP table begging for professionals to satiate their child and give them access to the Oasis that is their visual world. In my experience, too many teams have sat and withheld the water, keeping it far from the child’s reach, perhaps dolling out a drip or two while sometimes they are given a drink, but they thirst for more. Too often the Oasis, which is the appropriate assessment and interventions based on CVI Guiding Principles (Roman, 2017) is kept from them.

Across this country there is a wringing of the hands among professionals about which terms to use, and professional programs that defend their practices of inadequate education in the area of Cortical Visual Impairment. Resolutions have been written to defend the practice of withholding the Oasis to students, with insistence that first they, (the ones who know best), must determine in more than one evaluation that the child is indeed ‘thirsty’, and then then they, and only they, can decide what the child needs. They argue when outsiders draw them a detailed map to the Oasis, and insist that they first take the child through the desert on their terms. They shake their heads at the parents who clamor to open the Oasis to their children, all the while arguing that they have the child’s best interests in mind.

And across the country, children thirst.

I have been at IEP meetings both in person and virtually for the last few years, and have seen all of the above, and more. Parents beg, plead, and often have to resort to legal interventions to insist that their children receive appropriate services and accommodations. Parents spend hours upon hours working on goals and ideas, only to have teams summarily say ‘thanks but no thanks, we do not agree”.

That being said, I also know that there are countless professionals across the country who are seeing the need to give these children access to the Oasis, and in spite of the ‘powers that be’ they know that the only educational approach, or the Oasis, is the CVI Range and the CVI Guiding Principles. That’s it, folks. There are lots of websites and blogs out there that give you information about Cerebral diagnoses, and more and more people are pointing away from the Oasis, and back towards the desert, like wandering nomads with no purpose or intent. While information and research is gathered, the dust and sand swirls, making the journey more difficult, and leaving children and families behind.

Through the wonders of social media, parents are connecting and communicating. Often families are victims of the zip code they live in, and they journey out of the desert to move closer to the professionals who know the way to the Oasis, and who are more than happy to give the students the ‘water’ they need to have visual access to their world. Other families are finding out about the Oasis after years of settling for the drips of water, and many are scrambling to have access, desperate to help their children. They network, share maps, and clear the sand from their eyes as they seek relief for the children in the form of visual access and improvement in functional vision.

I have seen the 16 year old young woman who could not flush the toilet or wash her hands independently, accomplish both of these skills in one day when a dedicated OT followed my suggestion to use color to anchor her vision to the toilet handle and the faucet. She was diagnosed with CVI at a young age, and had vision services that handed her drops of water, and never told her parents how thirsty she truly was, nor that there was a supply of water in the Oasis to quench that thirst.

I have seen the 7 year old with Cerebral Palsy who was placed in a learning disabilities classroom and thought to have significant cognitive challenges learn to read when a special ed teacher believed in him and followed the strategies based on his CVI Range score. His ‘thirst’ was mistaken for delay, because team members had never seen a child like him, and vision professionals decided he was not ‘thirsty’ at all, and therefore needed nothing to drink. When given access to the Oasis, he began to thrive, and in one school year, has achieved two years of reading progress.

I have seen the infant, just weeks ago, whose parents were told is totally blind, and that there is no hope for her to see, turn her body purposefully towards a red lighted toy as she is learning to build visual skills. She is one of the lucky ones because her ‘thirst’ has been identified, and the Oasis of interventions in available to her through the CVI Guiding Principles of Dr. Roman.

There are professionals who seek out information on their own, who travel to conferences and seminars, and who actively work towards gaining more knowledge of Cortical Visual Impairment. These professionals are tired of the bickering and personality clashes that create dust storms and blur the way to the Oasis and support for the children. They conduct the Range (Roman 2007) and write goals and accommodations based on the child’s CVI Range score. They are the new vision teachers who have had less than a week’s study in CVI (not an exaggeration) and who enroll in classes at Perkins elearning ( https://www.perkinselearning.org/topics/cvi ), They are the seasoned veterans who attended college before Cortical Visual Impairment was a diagnosis, but who do the same to take their students out of the desert and into the Oasis. While the professional resolution writers and researchers argue that there shouldn’t be only one Oasis and that families should be satisfied with drops of water while they discover more, families and professionals leave them in the dust, and watch the children thrive.

For those families who are in the desert, and who are crying out for visual access for your children: continue to fight, and continue the journey. There are many out there, guiding the way. As the mother of 258 children (ok, it just feels that way), I know that your children deserve to be guided to the Oasis, as mine have been to their own, and to drink heavily from the water that will open the visual world to them.

For the educators or ‘powers-that-be’ who turn their backs on the valid and reliable source for satisfying the ‘thirst’ of children with CVI, the CVI Range, know this: While you research and resolve, families and educators are moving past you and doing the hard work to satisfy the thirst of these children. For the educators who take the children out of the desert and into the Oasis of visual access, thank you for your hard work and dedication.

As a Teacher of the Visually Impaired for 36 years, I have walked through the educational desert that is little to no appropriate services for children with Cortical Visual Impairment. Once I was shown the way to the Oasis, I never looked back, and have led countless children into the Oasis created in 2007 through the CVI Range Approach to Education and Assessment.

Education for a child with Cortical Visual Impairment doesn’t have to occur in a desert with children who thirst and parents who plead. The Oasis is well-established, with room for all.

Dive right in, the water is fine.

.

China Bound…Again

I am excited to let you know that I will once again be traveling to China this summer.. I never planned in my life to go once, and yet here I am setting up for my 5th trip in 11 years. I traveled to China in 2008 with my husband and son to adopt our Sophie, and then before we knew it, we were adopting Shane, then Maeleigh, then Vincent. I was honored last year to travel back, (with no extra passenger on the ride home!!!) to conduct a CVI training for Perkins International, through Perkins School for the Blind.

This summer I will be a part of a Forum that is hosted by Bethel China, an orphanage for the Blind that was started in 2003 by Guillaume and Delphine Gauvain as a foster home for blind children. Bethel conducts an educational outreach program each year for families who have kept their blind and visually impaired children, which is amazing in China, as well as for teachers, orphanage workers and medical professionals. Bethel has been near to my heart for more than a decade as we began the adoption process, and we sponsor Bethel children annually. We are currently sponsoring a beautiful little girl name Alice, who I was privileged to name after a dear friend, Alice Guarino, died of cancer. Little Alice had Retinoblastoma, the same diagnosis as our Vincent, and we are supporting her as she waits for her family to find her.

You can read about Bethel China here ( https://www.bethelchina.org/)

Bethel educates many blind children from all over China, and they have volunteers from around the world who come and dedicate their time and talent to teaching these little ones. They rely on sponsors and benefactors to continue to do their work, and are often in desperate need of supplies for the kids. Those of us who are work with children with special needs, and especially those with complex needs, know that the right materials can help to facilitate learning. In the case of children with Cortical Visual Impairment, the right materials and intentional interventions can facilitate improvements in functional vision.

Operation Bethel

As I prepare for my trip, I want to take much-needed supplies and materials that they cannot get in China. You are probably saying “But it’s China! Everything is made in China!” While this is true, China exports materials, and very few of the things we are used to getting at a store or ordering on Amazon are able to be purchased in China.

I have set up a wish list for anyone who is interested in purchasing toys and much-needed sensory and therapy materials. You can find the wish list here:
https://www.amazon.com/hz/wishlist/ls/WOARU7RI0KQF?ref_=wl_share

There are a number of inexpensive items, and others that are a bit more. Anything you feel you can help with would be greatly appreciated. I am asking for a number of items that are sensory-based as the children in an orphanage, especially those who are visually impaired, seek significant sensory input. Parents can understand how difficult it is to meet the needs of one child with complex needs, so imagine how it is in an orphanage with multiple children and limited caregivers. Giving the Ayis (Nannies) instruction on how to best use these sensory toys and devices could make the world of difference in the lives of these children.

Bethel is in desperate need of white canes, so if you have one your child has outgrown, or if you are a provider and have access to canes that are not too well used, please consider sending them to me. The cane sizes that are needed are:
: 9 of 60cm length,  10 of 130cm length, 8 of 40cm length, of 150cm length,

Thanks for your help and support. Feel free to message me if you have items to donate, or would like more information of how to support the children at Bethel. I will update the wish list as more ideas are added. Thanks!

MaryAnne

On Hope and Shame

By the Summer of 2010, I had been a TVI for more than 25 years and had worked with many infants in the early intervention system in my county who had CVI. Some of those babies had been diagnosed, some were not. I recognized CVI through the behavioral characteristics, but often the doctors had not given the families a clear diagnosis. Since I am not a medical doctor, I would sit back, certainly begin interventions, but would try to wait it out for the doctors to ‘see the light’ and finally give the child the diagnosis of Cortical Visual Impairment. Sometimes that happened, often it did not.

Frustrated with my lack of knowledge and comfort level working with these complex babies, I registered for the PA CVI Mentorship Program with Dr. Christine Roman-Lantzy in Pittsburgh, PA. The program required a commitment of two weeks during the summer of 2010, and two weeks the following summer. It was a huge commitment of time not only for myself, but for my my family, as we had recently adopted two children from China. With my husband’s support, (and pleas to return), I set off on what was to be the first step on an amazing, and ongoing quest to learn about CVI, and to better serve children with CVI and their families.

On the very first day of the training, at the Western PA School for Blind Children, Dr. Roman introduced us to the basics of CVI, the characteristics, Phases and Guiding Principles. She shared with us stories of children she had worked with through the years, and her work thus far. As the day wore on, I realized, with a sick feeling in my gut, that I had been doing it wrong. Wrong. So many times wrong. There were so many children I had missed, so many whose characteristics I had let be pushed to the background because of the complex needs that everyone, from team members to medical professionals told me were more important than their vision. I was sick. I was ashamed.

At the end of that first day, Dr. Roman asked if anyone has questions or comments. I raised my hand.

“I am so ashamed,” I told her. “I missed so many kids.”

The women in the room all nodded their heads and chimed in that they felt the same way. We were overwhelmed with the burden of what we had not done, when the information was there, published a few years before by Dr. Roman. We all knew that the children with CVI on our caseloads and in our schools had been steadily increasing, but we had not significantly changed our ways of meeting the needs of those children. We were all ashamed.

Dr. Roman nodded. She understood. She had been there as well. She too had felt ashamed and inadequate as a teacher who could not meet the needs of the growing number of children with CVI.  Like those of us in the room, she had never had instruction on working with these children in her university studies. There were no online classes or webinars, and none of the associations of educators across the country ever breathed a word of this new diagnosis. So, in her quest to learn more, and to better serve the children she was not serving well, she decided to do something about it: She dedicated her career, and her life to studying, researching, and developing the only educational approach and evaluation tool for children with CVI. She shared with us a quote from Maya Angelou “When you know better, you do better.”

‘Shame’ is defined as: a painful feeling of humiliation or distress caused by the consciousness of wrong or foolish behavior.” While we often think of ‘shame’ and ‘humiliation’ as clearly negatives to be avoided at all costs, the reality is that there is great growth and motivation in both. I was quite ashamed of my lack of knowledge and my lack of action in working with the children on my caseload who had CVI. While there were many reasons why I did not know what I did not know, there were no longer any excuses to continue to do what I had been doing. I used the ‘painful feeling of humiliation or distress’ to change my behavior and to accept with humility my lack of knowledge.  I made a deliberate decision to work to change that, and to never again, to the best of my ability, allow a child I worked with go without appropriate evaluation and interventions. While there was nothing I could do about the children I had served in the past, there was plenty I could do for the children I would serve from that moment forward.

It is now eight years, almost to the day, since the first day of the CVI Mentorship, and there continues to be much to learn about CVI.  We know more today about neuroplasticity, Dr. Roman has published a Second Edition to her book and a third book will be published any day.

Thanks to social media, parents from across the country, and across the world, are joining forces and raising their voices to demand change in the world of education for their children. The number of children with Cortical Visual Impairment continues to grow, but not so the number of university programs that dedicate full courses to preparing future teachers to serve children with CVI.

Professional organizations, University training programs, and agencies that serve the blind and visually impaired are wringing their hands and arguing over the semantics of ‘cerebral versus cortical’ and  ‘evidence based practices’ and generally defending their lack of urgency in changing the status quo to meet the needs of this very real public health crisis. Personalities are held above the needs of the children, with much pushing and shoving to have voices heard that are not willing to effect change. Some professionals are stamping their feet, complaining of large caseloads, and are resisting the need to learn new information. The CVI Range, which is the only educational approach for children with CVI, is being questioned and marginalized. So, instead of using the Range and developing a program based on the educational approach that has been shown to be  reliable  they insist that they need to learn more about ‘evidence based practices’ while children are sitting in classroom across the county, waiting visual access to their world.  Instead of using the ‘shame’ of not being prepared to work with these children, they are turning the blame on those who raise their voices in defense of them.

Their resistance is being matched by the resolve of parents and teachers across the country who are not waiting for the ‘powers-that-be’ to provide services to children with CVI that are ‘equal to those who are considered blind or visually impaired.’ (Statement on Cortical Visual Impairment, APH, 2008). Parents are organizing, and their numbers are growing. Teachers of the Visually Impaired, as well as professionals and therapists, are enrolling in the Pekins-Roman CVI Range Endorsement offered by Perkins School for the Blind. At the time of this writing, there are 70 Endorsed Professionals with over 200 in the queue. The CVI courses offered by Perkins are their most popular courses, with waiting lists needed for each semester. Teachers are asking for help, and parents are asking demanding their children receive the educational support and access to their curriculum they deserve.

As the number of children with CVI diagnosed each day increases, so should the urgency to change the system that has been in place too long. There is real hope, not false hope, that a child diagnosed at an early age and given the appropriate evaluation and interventions will improve visual functioning and realize his or her unique potential. That is the goal for each child who is given the diagnosis of Cortical Visual Impairment.

We need to achieve that goal…or shame on us all.

 



 

 

Guiding Principles

My journey in the world of Cortical Visual Impairment began more than 26 years ago when, as a young teacher and mother of two children, I was given a referral for a fragile infant who had been born as a result of placenta previa. The anoxic event of her traumatic birth left her with cerebral palsy, significant brain damage, and an initial diagnosis of ‘possible blindness’. Her mother, already devastated that her beautiful child was so medically involved told me on the phone before our first visit: “I don’t know what I will do if she is blind.” I heard the desperation in her voice, and was determined to find any possible chance that this beautiful child could see.

Armed with all the tools a teacher of the visually impaired needs to conduct a Functional Visual Assessment, I went to see Sarah, and her mother Susan, and began to test her visual fields, how her muscles were moving her eyes, pupillary responses-everything an ocular assessment required me to do. And nothing made sense.

Sarah’s visual responses were confusing.. When light was presented to her visual fields, she did not look towards it, even in a dark room.  While her pupils clearly reacted to the light, she never once turned towards it. Her mother’s face was somber as her fears were realized. Her daughter could not see. So I did it again, this time paying acute attention to the tiny child, who was sucking contentedly on a pacifier.

Each time the bright red light moved into Sarah’s visual fields, the rhythmic movement of the pacifier halted. At first I thought it was an accident, so I moved the light away, and brought it back. She did it again. And again. Her mother and I exchanged a glance. We had both seen it, and we didn’t rust what we saw. How could she be responding without looking? But hope was born in that moment, and determined to find out what it meant, I began to research.

Unbeknownst to me, in my own state of Pennsylvania, Dr. Christine Roman-Lantzy was working on research that would answer the questions I had about this intriguing eye condition that affected the brain, and not the eyes. The condition had been named ‘Cortical Visual Impairment’ by Dr. James Jan in 1987 and in 2007, Dr. Roman’s published “Cortical Visual Impairment: An Approach to Intervention and Assessment”.  In the days before the internet information was not easily accessible, so Dr. Roman’s book was a treasure.  Workshops and articles satisfied some of the thirst for knowledge of what to do do with these complicated babies, but they were never enough.

In 2010, almost ten years after evaluating Sarah, I attended the PA CVI Mentorship with Christine Roman. The training, which spanned two weeks in one summer and two weeks the following summer, satisfied my thirst for information, and at the same time, made me hungry for more. With the training completed, I was determined to never stop learning, and to never again question what to do with the increasing number of children on my caseload.

Little Sarah would have been 26 years old this year. She passed away a few years ago, but I carry her memory with me every day. One tiny baby set me on a path to search for knowledge, to answer questions, and to help a mother face the fear and desperation of a devastating diagnosis, and find hope.

Today, I continue to search for new information, new ideas, and new techniques to help families search for answers and find hope in a diagnosis that is still not well known by medical professionals, and still not well learned by teachers in the field. As the numbers of children with Cortical Visual Impairment continue to rise, making it the leading cause of visual impairment across the world, the voices of the families are getting louder and stronger. Often the most knowledgeable members of their children’s teams, these families are advocating for their children with strength and resolve.

In her book, Dr. Roman sets out five CVI Guiding Principles: Precision, Intentionality, Reciprocity, Expectation of Change and Attention to the total Environment., which I will write about in future blogs, as they are so important to understand in our work with children with CVI.  For me, the principle of “Expectation of Change” translates into “Hope” for families across the country, and across the world.

Just as I looked into the hopeless face of Sarah’s mother more than 26 years ago, I continue to look into those same faces of families across the country, whose children receive the same diagnosis of Cortical Visual Impairment.  Today, however, the hopelessness turns into hope as families are given tools on the complicated journey of CVI. The CVI Range (Roman, 2007) is the valid assessment tool that begins the trip with precision, and with it, sets the child on the road to intentional interventions that affect real change in his or her vision, and map out a future full of hope.

Thanks for joining me on this hope-filled journey.

” I stand in awe of these parents who never give up and who trust the inner voice that tells them their instincts about their child are correct.” Christine Roman-Lantzy, 2018