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Versión Español de este artículo (Spanish Version)
By Victoria Juskie, IPVI Treasurer
Reprinted with permission from IPVI Outlook
Illinois Association for Parents of Children with Visual Impairments <www.geocities.com/ipvi2002/>
Abstract: A parent shares her personal journey in understanding her son's visual impairment and being reminded of children's wonderful ability to be resilient and independent.
Keywords: Family, blind, deafblind, personal story
Author's note: Each child's vision, physical and mental issues vary so this is solely from my perspective as a mother of an 8-year-old with aniridia, nystagmus, and foveal hypoplasia. In layman's terms this means he sees at 10 feet what someone with 20/20 vision would see at 200 feet; he has a perpetual eye motion; and he's extremely light sensitive. He has poor depth perception but other than this is not physically or mentally challenged. He is currently learning Braille but can see print which is 14 pitch or higher by reading the print about two inches from his face.
For a long time after our child was born we felt we were living under a dark cloud because of the many unknowns yet to come. For example, will he develop tumors in his kidneys, too? Does over use and strain deteriorate what vision he has? Will he lose his vision altogether? Besides direct pain while in bright sunlight, must he avoid going outside because it could have adverse effects on his vision? Will dark glasses and caps sufficiently protect the eyesight he has remaining? All these things still aren't answered, but we do the best we can.
As you know, for the first three years or so of a child's life, they really don't grasp what is being asked of them regarding the professional-posed vision questions. Articulating medical information about the concept of vision is hard enough for me to understand let alone a toddler. All a child knows is you're upset and worried. It's something about his eyes. Until he talks and conceptualizes vision to tell you, you just do your best at guessing for him. When I responded to the ophthalmologist's questions, my answers were based on my observations on how he reacted in every day life to objects and/or things in print. So you patiently wait for your child to talk to you and convey how things are. Then you find out that eyes usually continue developing until a child is seven or so, sometimes you really won't have a definite long-term prognosis until then, during which time your over-protectiveness may kick in.
For me, during the first three years of his life, I kept all twenty-three windows in our home covered with dark curtains and blinds. I only opened them for cleaning. Since my son is very light sensitive, I tried to protect him as much as possible. He wore lightly darkened glasses indoors and the darkest glasses we could find outside since he was six months old.
He went through 0-3 intervention commencing at six months old and entered preschool at 36 months with itinerant vision services on a weekly basis. We learned all we could about his issues and struggled through it all. Our goal was to keep whatever vision he had.
But one day I found out I was going overboard. He came home from a regular preschool day and I was cleaning windows. He said, "You should keep the blinds open. I like the sunlight coming through the windows." At that moment, the cloud lifted. I no longer felt I had to physically live in darkness for my son. He was three and he told me that sunshine was good. From that moment I began to heal from the inside out emotionally. My son was going to go to a regular school on the bus with the other neighborhood kids, and he liked sunshine. Yes, he's going to have some rough time, but he was enjoying his life to the fullest.
So my tip for today is: In each situation try to first treat your child like any other one. Then if vision plays a part in the scenario, consider it into the equation and let him compensate. Children are very adept at finding ways to compensate. Don't let vision issues rule your life. Put them in perspective. Let your child be a kid. He's going to run, fall, get bruises, and cry. However, if you don't give him a chance to try things, no one will know how far in life he'll get. They are resilient and love being independent. Teach them independence; everyone will be better off.
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