The Story of Vision Beyond Sight – A Different Approach? – Part 2


I posed the quasi-rhetorical question in Part 1 as to how effective we’ve been in getting the message across to the public than vision is more than 20/20.  Or more pointedly, that eyesight is not synonymous with vision.  Make no mistake about it:  Public Awareness Campaigns such as those engaged in by COVD have been effective.  But every time we see something widely circulated that addresses “good vision” only in terms of “good eyesight”, it’s a stark reminder that we can do better.

While I don’t have a film documentary trailer for you yet on the subject, here is a sneak preview of my Editorial in the upcoming issue of Vision Development & Rehabilitation that speaks to the matter at hand:

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Sofia is a 14 year-old girl who came to our practice accompanied by her mother. Clearly bright and articulate, she is a straight “A” student who reportedly works very hard to achieve her grades in school. But at what cost? She sees a psychiatrist for counseling, and has been on several different medications for ADD, all with side effects that significantly increase her anxiety. She takes three different psychotropic medications at bedtime to help her sleep.

When Sofia was eight years old, she began experiencing panic attacks. Her trigger seemed to be visual stimuli, and she developed a sensitivity to light. At that time she was diagnosed as having a sensory processing disorder (SPD) and received a year of occupational therapy services. OT for SPD can be very successful, but Sofia noted that although it was fun it didn’t seem to be of help in her case.

Shortly thereafter, Sofia’s mother took her for an eye examination and while she could read the 20/20 line with either eye she made the comment that “I just wish the letters on the chart would stop wobbling”. Mother asked the doctor if that was normal, and his response was “some kids report that but it’s nothing really to be concerned about”. As time went on, Sofia’s mother obtained Section 504 accommodations for her in school, but had this nagging feeling that they were missing something.

When I examined Sofia she confirmed that words move around on the page when she reads, and agreed that this instability of print results in countless additional hours of work for her over the course of the school year. Last year she began to experience more difficulty in copying from the board. Examination revealed 10 prism diopters of esophoria at distance and 2 prism diopters of esophoria at near, poor fusional reserves and classic pseudo aniso-myopia with stress cylinder against the rule.

We scheduled a return visit for a conference with Sofia and her parents to review my findings and recommendations. I noticed on her history sheet that Sofia’s hobbies included drawing, painting, and sculpting. So I asked her if she could create a representation to depict what the instability of print looked like to her. She seemed genuinely delighted that someone was taking the time to listen to her visual complaints, and her mother had that ambivalent look of relief but with a sadness tinged by the remorse of not uncovering this sooner.  Here is what Sofia emailed to me:

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A month prior to examining Sofia I evaluated a teenager by the name of Elizabeth whose mother is a former school teacher. After years of searching she was finally diagnosed as having a tick borne infection and had associated visual sequelae. She exhibits many of the signs and symptoms experience by individuals with acquired brain injury. Until the diagnosis was finally made, Elizabeth’s mother was accused by prior professionals as perpetuating Munchausen by Proxy. What enabled Elizabeth to go on was that her father is a psychiatrist, and he sensed that her issues were real and not imagined.

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Every day, in practices around the world, scenarios like this occur. A new dawn is emerging, however. Parents of children like Sofia and Elizabeth are taking matters into their own hands and serving as forceful advocates. They often discover the world of vision development and rehabilitation by word of mouth, and impels them to take on a mission so that other families do not have to struggle the way they did.

This advocacy network is growing on wide scale. Consider the efforts of individuals such as Patty Lemer, Robin and Jilian Benoit, Michele Chigas Hillman, Katie Johnson, Wendy Rosen, Sue Barry, Cavin Balaster, Susanna Zayarsky, and Debbie Walhof – just to name a handful. What do these individuals have in common? None are employed by practices offering vision development or rehabilitation services and therefore have no vested interest in advocacy other than a passion for promoting awareness of what we do.

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The enthusiasm of advocates is infectious. Consider the story of Hayley Barber, competing in the Miss America contest this year. She uses her platform of “Sight for Young Eyes” to encourage eye examinations at a young age and raise funds to provide vision therapy for children with low vision. Ms. Barber helped pen a bill requiring comprehensive eye exams before kindergarten, and has been advocating for this bill to be passed by the Alabama legislature. Her platform has now expanded to include an interactive visual curriculum for the Boys & Girls Clubs of America.

A measure of the worth of what we do is the extent to which others promote our services. By nurturing these advocacy networks through social media, we help key individuals connect the dots. They will ultimately coalesce into a grass roots international movement, complementing the public awareness efforts of COVD.

 

6 thoughts on “The Story of Vision Beyond Sight – A Different Approach? – Part 2

  1. A well-written and hopeful post. Evidence-based medicine and patient’s efforts to help other patients are slowly but surely changing agreements and moving vision therapy into the mainstream of health care–where it belongs. We should all be grateful to the researchers and patients who are making this occur.

  2. I have been advocating vision rehab since WAY before those you mentioned…more than 25 years. I am teaching a lifelong learning class at Carnegie Mellon University this semester. My “students” are 25 grandparents of adults with autism. Not a one has seen a behavioral optometrist. We still have a LOT of work to do.

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