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.