American Action Fund for Blind Children and Adults
Future Reflections Winter 2017 PERSPECTIVES
by Haley M. Dare
From the Editor: When a child has some usable vision, professionals and parents sometimes hesitate to identify him or her as blind. The journey toward accepting blindness can be long and tortuous. However, it can open the way to new tools, new skills, and a growing sense of confidence and power. In this article, Haley Dare reflects upon her journey and that of her son, Aron. Haley Dare is president of Michigan Parents of Blind Children.
Again and again I heard the clinical words that were used to describe my ten-year-old son's eye condition. The ophthalmologists told me he had severe amblyopia, strabismus, hyperopia, accommodative esotropia, monocular, and high refractive error. Later some phrases were added to the mix, phrases such as no depth perception, suppression of the right eye, and visual processing disorder.
I did my research. I learned what all those words and phrases meant. The list was formidable, but it didn't add up to blindness.
Nevertheless, the words used by the doctors didn't jive with the behavior I was seeing in my son at home. Aron showed signs that he couldn't see. Oh, not all the time . . . just when it got dark (and in Michigan, during the winter, it gets dark at 5:00 p.m. every day) . . . or when the print in his third-grade chapter books got smaller. I noticed that he didn't want to go outside anymore (especially on bright, sunny days), and he tried to avoid unfamiliar stores. At his brother's cross-country meets, Aron clung to my hand and complained that he wanted to go home, while all of the other kids ran around freely in those wide-open spaces. All of a sudden, Aron didn't want to play in the snow—because of the glare, I learned later.
So I did what any normal, slightly panicky mother would do. I got online and tried to piece together what was happening with my son. I discovered that all those medical words and phrases I had been given amounted to functional blindness. Boy, did it offend the optometrists and ophthalmologists when I came in looking for answers for a kid who was functionally blind! Wow, were they annoyed when I went in with knowledge that challenged and/or downright rejected their tried-and-true remedies!
Aron has a visual acuity of 20/400 with suppression of his right eye. With very strong bifocals, his left eye can be corrected to 20/30. His acuity itself is pretty good. However, he struggles to see objects in his periphery. Of course, that isn't confirmed. After he took a fields test three times on two different machines recently, the ophthalmologist told me that Aron passed "with flying colors." He said that, physically, Aron's eyes are healthy.
I fail to see how either statement can be true. Aron's vision blurs in crowds; I believe the clinical term is visual cluttering. The playground, the lunchroom, the crowded hallways, and Christmas at the mall make him feel very anxious because, he says he cannot clearly see faces or details. His experience has not been validated by an expert, but it is definitely noticed by the parent and voiced by Aron himself.
So, against this background of confusion, our frustrating and never-ending fight for school-based services begins. You know the old adage about mama bears and cubs, right? If you mess with a cub, you'd better get ready to deal with an angry mama bear! I had never been a mama bear before. I was raised always to be respectful, kind, and polite. I am very patient, and I tend to think that everyone is looking out for me and for my children's best interests. Well, that is not always the case. What a reality check!
As I tried, kindly, to advocate for Aron at IEP meetings, I heard the word no so often that I started to dread going. I began to think that this narrow-minded attitude was normal for teachers of the visually impaired. Perhaps I was wrong, I thought—until I found the National Federation of the Blind.
The NFB convinced me that I was right! After five years of feeling confused, frustrated, and beaten down, of wondering whether I were crazy, I found this wonderful, shining organization that said, "You are right about your son!"
Even though I now knew the right things to do, my fight with the school district didn't end. The school was upset when I gave Aron a long white cane. The cane didn't solve all of his mobility and anxiety problems. However, he stood up straighter and walked with greater confidence, especially on those bright sunny days . . . or in the snow when glare was especially bad . . . or at night when the total blackness scared him to pieces. I also started teaching him uncontracted Braille. Then, just to be rotten and upset the school even more, I insisted that the school provide Aron with Braille instruction. Furthermore, once the National Reading Media Assessment (NRMA) revealed that Aron should be a dual media reader, my efforts intensified.
As of this writing, Aron has received Braille instruction on a six-week trial basis. The results will be assessed at his IEP meeting. Already Aron is knocking the TVI's socks off with how well he reads in Braille! (Yes, Mother knows best!)
This past summer, Aron and I traveled to as many NFB events as we could manage—by trains, planes, and automobiles! We attended the STEM2U program and visited BLIND, Inc., in Minneapolis. We attended the NFB national convention in Orlando on a first-timers' scholarship. We drove five hours to take part in an Illinois BELL Academy, and then we went to the Illinois and Michigan state conventions. At each venue I learned a little bit more about how nonvisual skills could empower Aron. I grew more and more confident in my decision that my partially sighted child could use both the skills of blindness and his remaining sight to accomplish whatever it is that he wants to do in life.
But I got something else from these experiences with the NFB. I gained friendships, support, and a passion to help other parents and their partially sighted children. I met so many lovely moms and dads! Some of them already were strong advocates for the NFB and for their children; others, like me, were still confused and frustrated. And here's the awesome part—all that research I did, that I thought was so useless because it didn't fit my situation or answer my questions, fit the situations of some of these other families perfectly and answered their questions in a profound way. When our state president appointed me to serve as president of the Michigan Parents of Blind Children (MIPOBC), I knew I had found a way to give back.
This short article cannot nearly encompass our entire story. We are still advocating strongly for our partially sighted child to be trained in nonvisual skills. To other parents who may have partially sighted children and who may feel frustrated, lonely, and confused, it is important that you trust your instincts. Oh my, how many times did I hear that? Apparently, I needed to hear it many times before I finally acted on my instincts!
If your child complains about glare or panics in unfamiliar environments, you may have a partially sighted child. If your child tells you that he can see clearly "sometimes," "sort of," or "only if the light is perfect," you may have a partially sighted child. If glasses don't seem to fix the problem, even if the acuity is good, you may have a partially sighted child. If your optometrist's or ophthalmologist's diagnosis doesn't jive with your child's behavior, you may have a partially sighted child.
At a counseling session this past fall, I confessed to the therapist that I was angry because no one else seemed to notice the behaviors that I was seeing in my son. I was always being told that I was wrong—not outright, mind you, but in subtle ways. She said something that I will never forget. "You are the parent," she reminded me. "Perhaps you are the only one seeing the truth. Perhaps you are the only one who is right."
Be encouraged, my friends! May these words be the ones that penetrate your heart and become your mantra.
Please feel free to contact me at email@example.com if you think I can be of help.