It’s almost 2019. What a year this has been. There have been so many things to reflect upon both personal and professional. I am going to indulge myself a bit.
The year started with the usual suspects. Promises to get fit (ish), to find more quiet time to knit, or walk in the woods, or watch the birds (yes, I am a nerd). But the little spiral book that is my calendar preempted many of those plans. I’m not sorry-I love my work…every bit of it. But, I do wonder about my inability to quiet my thoughts and to follow those occasional instincts for calm. Nevermind that, it’s been an interesting and challenging year.
There have been accomplishments. The revision of Cortical Visual Impairment: An Approach to Identification, Assessment & Intervention was released early in 2018. “Book 2” is done and if the stars align and the moon is in orbit with Jupiter, I hear it may even be released. I am so fortunate to have co-authors in this text and each of them is impressive. What an honor.
I still have Pediatric VIEW at West Penn Hospital even though the hospital loses money every day that I am there. The work I get to do at Pediatric VIEW is the hardest and most rewarding.
I have travelled to specialized schools, hospitals, family homes, public schools and therapeutic settings to teach adults and to evaluate children. That is an incredible gift and to this day I find it intriguing that others are interested in my points of view on CVI.
The CVI courses provided by Perkins eLearning have been wildly successful and thus, provide training to thousands of interested participants from all over the world. I continue to watch the list of Perkins-Roman CVI Endorsed professionals grow and it fills me with hope to realize that more students are being offered an education by those who are motivated to go the extra mile.
I had an opportunity to spend a rich afternoon with families of children who have a child with CVI. It was incredible to see the interactions of the siblings and parents in a non-structured event. I smiled so hard all day that I may have met my happiness quotient for the decade.
But, of course, 2018 has also had some worrisome events. In September my best friend/sister of 45 years died suddenly and unexpectedly. She was my Old Same and closest relationship (let’s face it there are things you share with your best girlfriend that you don’t necessarily even share with a spouse). I met her in the first months of my first year as a teacher of the visually impaired. It was at her urging that I began working with children who did not qualify for my caseload. She hated it when after 17 years teaching in the public schools, I resigned to work at The University of Pittsburgh but she knew that the interest she sparked in me about CVI had to be pursued. So, the loss of my friend is huge and constant. It has left a hole in my heart that will not be repaired but one that I will be forced to live with. I think it also makes me acutely aware of the urgency of each day and never missing the opportunity to do what is most authentically right.
In 2018 I felt another loss as well, this one in the field in which I have dedicated my life’s work. The CVI Resolution 2018-001 presented at AER International dashed the shred of optimism I had about the potential for leadership in the professional organization I belonged to for most of my adult life. I struggle to reconcile how this could be the same organization that presented me with The Bledsoe Award for “outstanding literature in the field of blindness and visual impairment”. The Resolution created confusion and division among the very professionals AER is charged with supporting. And parents of children with CVI seemed even more frustrated. Their voices were strong but often met with defensiveness or excuses. Shame on us.
Not unrelated to the frustrations described above, parents of children with CVI truly found their collective voice in 2018. On-line groups, tele-support groups, and face-to-face interactions have resulted in families crossing their arms, digging their heels in & drawing a line in the sand. They are demanding equal access to their child’s education and no longer tolerate CVI being a second-class citizen to the opportunities and services provided to children (who also deserve) with ocular conditions.
I am so impressed with their advocacy and the resource they are to each other. These parents are making history. They have no choice. After all, what would you do if your child had CVI and was 1) dismissed from a caseload because “vision was the least of her problems”, or, 2) seen by a vision professional 4 times a year as a consult, or, 3) scheduled for vision support based on the hours left over after the braille students were accounted for, or, 4) provided vision services by a person who thinks the only functional vision assessment is the one designed for individuals with ocular visual impairment, or, 5) believed to need little support once they were in Phase III, or, 6) inappropriately diagnosed with a behavior problem or other condition when in fact the interfering difficulties were all intrinsic to CVI, or, 7)…..1000)? Really, ask yourself, what would you do? So, I applaud these busiest of all parents for the momentum they are creating and from which all children with CVI will benefit.
So, I sit at my laptop on a sunny winter day wondering what will come in 2019. I am hopeful but not foolish. I will continue to conjure my inner gut and make the professional choices that benefit children. Here’s what I hope:
- Parents of children with CVI will continue to strengthen their voices and that their children’s needs will be met from diagnosis through adulthood. I recognize that this “wish” may need more than the 12 months assigned to 2019.
- CVI strategies will be an occasional approach used only to support a solid, effective METHODOLOGY for teaching students who have CVI. It is my belief that a deep knowledge of CVI, child development, and learning theory are mandatory prerequisites to effective approaches for students with CVI.
- The number of Perkins-Roman CVI Range Endorsed individuals will continue to grow thus demonstrating the dedication of professionals who serve students with CVI.
- That the CVI Infant Screening protocol will be implemented in numerous settings. We have had tremendous success at West Penn Hospital where every at-risk child in our NICU is screened and followed for potential CVI. No child with CVI slips through the cracks.
- That evidence of the reliability and validity of The CVI Range will be replicated
- That the study currently being conducted by The Bridge School will support the efficacy of interventions based on The CVI Range
- That those who seem to have opposing outlooks regarding CVI will have more opportunity to collaborate and develop mutual respect based on a genuine understanding of each other’s work
- That university programs will teach CVI content in a rigorous and meaningful way to their pre-service students.
- That the Perkins eLearning Phase III course is completed and launched.
There are more, actually, many more wishes on my CVI list but I commit to the ones described above for now. The rest of them can be discussed any night between 2-5 AM when I am sorting them out.
Happy New Year and best wishes to all.