I’m hoping you’ve had the chance to begin reading the Fall issue of VDR. Admittedly biased, I’ll tell you that every item in it is a gem. Here I want to call your attention to what we bookended in the journal, beginning with my editorial on growing the advocacy network and ending with Katie Johnson’s review of Wendy Rosen’s new book. One of the ongoing challenges that our field has is maintaining advocacy for vision beyond eyesight in the public eye. Wendy’s book title makes use of the concept of hidden vision problems, and this is clearly instructive and useful.
In a similar vein, I can across a Quora piece on raising a child with an invisible disability – in this instance by a mom who’s an OCD advocate. Here are some very powerful thoughts from Barbara Claypole White:
“Other people’s opinions are exhausting when you’re already close to breaking point. I remember one teacher who was determined to prove my son had food allergies, even though a child psychologist had diagnosed OCD. Another teacher called one night to demand I take my son off his new medication because he was hyper. He was, and the psychiatrist weaned him off one SSRI and on to another, but the teacher reprimanded me instead of offering constructive concern. She reduced me to tears even though she knew what a tough decision it had been to consider meds. You learn quickly that other people often have their own agenda with this stuff.
Fortunately we found an amazing school—a perfect match. The first question the admissions officer asked was, “What do we need to know about OCD?” I typed up a list called ‘OCD 101’ and kept staff updated about med. changes and shifts in our son’s anxiety. There’s no way around it: you have to become your child’s mental health advocate. Oh, and let’s not forget how little coverage most insurance companies offer for mental health treatments. At one point a friend of mine was spending more on meds than on the mortgage because her daughter’s psychiatrist had recommended a prescip. their insurance wouldn’t cover.
In addition to watching out for your marriage, you need to be mindful—sorry, couldn’t resist—of your own well-being. An exhausted caregiver is a useless caregiver. Never feel bad for walking away. That’s a much better option than punishing your child for behavior he or she can’t control.”
Think about it. Although the condition itself may be hidden or invisible, most strong advocacy networks revolve around the concept of “Disorder”. Autism Spectrum Disorder. Sensory Processing Disorder. Attention Deficit Disorder. Obsessive Compulsive Disorder. Central Auditory Processing Disorder.
So I’ll resurrect a thought I shared in writing a monograph on the parallels between auditory processing disorders and visual processing disorders. Parents and educators addressing auditory processing disorders understand that we’re not talking about the need for a hearing aid, medication, or surgery. They understand that there’s a distinction between how well your ear takes in sound, and how your brain processes sound, and that different practitioners in the field have different relative knowledge, strengths, and skill sets. Yet we’re still harping, after all these years, on getting people to understand the difference between eyesight and vision and to understand the difference between Optometry and Ophthalmology – and even different approaches within Optometry. Why is that?