[Njabs-talk] Parents Being Taught By Their Blind Kids

[Quintina M. Singleton]

Dear Students,

I think it's really great to see so many  new subscribers posting to the NJABS list.  I sincerely welcome you all.  You are now a part of a terrific network of information and of course we are all friends here.  

The following article was sent to me by our affiliate president, Joe Ruffalo,  about a week ago, and I would like to share it with all of you.  After you read it, please feel free to tell us your thoughts.  What kind of things have you taught your parents? 

Best,

Tina, NJABS VP 

P.S A gentleman by the name of David DeNotaris is the author of the following  article.  He is from New Jersey, but now lives in Pennsylvania.  

 

This Spring Dr. Maurer called me to see whether I could speak at the NFB convention.  With hesitation, I accepted his invitation.  However when he asked me what will be my title, I found myself responding right away.  "What have I learned from NFB, from my blind son?"

 

Our family's journey started 14 years ago.  It was January 1992, a cold and rainy day.  Coming out of the doctor's office, holding our first child in one arm and my wife with the other, I could not tell whether the falling drops were her tears or the sky's.  We had just been told that Andrew, our four-month old baby, had very limited vision, if any at all.  He had a flat electroretinogram and a diagnosis of Leber's Congenital Amaurosis.  Our hearts were dropping into an ever-growing abyss.

 

Dr Levin, the pediatric ophthalmologist gave us a small book with a very unique title, What color is the sun? published by National Federation of the Blind.  Yes, a Kernel book published 15 years ago.  There were two articles in this book that profoundly changed our life.  The first one is "Blind Faith" written by Mike Pearson about a group of seven students, from NFB Colorado Center for the Blind in Denver, climbing up the face of a 200-foot rock.  The second one is "Growing up Blind" by Jan Bailey on her father's efforts in breaking up all the unnecessary constraints imposed on his daughter.  I was impressed by these positive images and powerful words.  I wanted to learn from these inspiring models.  We contacted Mrs. Barbara Cheadle and joined the National Organization of Parents of Blind Children.

 

For the past 14 years, we learned a lot from members of this organization.  The most important thing we learned is setting Expectations.  This is applicable to most situations we have to deal with.  We expect Andrew to be learning at a level comparable to his peers of same age and ability.  We expect Andrew's teachers to deliver the objectives we agreed upon in the IEPs.  We expect Andrew to work hard.  We expect ourselves, as parents, to create the learning and supportive environment to make it possible.  No less.

To learn and achieve at comparable level, Andrew needs appropriate skills.  He had to learn Braille.  We were told that Andrew doesn't need Braille.  It is slow and would be replaced by other technology.  We emphatically disagreed.  Armed with facts we collected from NFB, we fought hard on this fundamental principle.  We won over the support of the special education supervisor in the school district.  We are very fortunate to have an excellent VI teacher, Mr. Joe Polzer.  To date Andrew's tool box is populated with Braille, BrailleNote, Braille embosser, Screen reader (JAWS), speaking calculator, etc.

 

Andrew is doing very well in school and is particularly interested in science and math.  Both my wife and I are scientists.  We know that these are visually demanding subjects and we were concerned about how Andrew will continue to excel.  Two years ago, Andrew had the opportunity to participate in the NFB Science Academy.  We trust that whatever NFB chooses to do, it will have a profound impact.  The camp lived up to our expectation and beyond.  Between the days we dropped Andrew off and picked him up, we witnessed a tremendous transformation.  NFB distilled its philosophy into this young man.  He demanded to be more independent.  For the first time, he whole heartedly accepted his tools: Braille, cane, and adaptive technology.  He learned to advocate.  Through doing dissection himself, he learned to trust his hands and fingers.  Through interacting with excellent blind scientists, he was inspired to nurture his dreams.  He no longer feels lonely, nor has any doubt about himself in his pursuit of academic excellence.  He has his dreams and he is determined.

 

Andrew just finished 9th grade.  I would like to report that Andrew received 8 academic awards.  Most importantly, these include Excellence in Science, in Algebra II, & a gold medal in the Continental Math League.  Thank you to the NFB Science Academy for the transforming experiences.  Thank you to Dr. Nemeth for your enabling Nemeth Code.  Andrew showed his teachers and his classmates that his visual impairment is a manageable hurdle.  His 300 classmates voted Andrew the most likely to succeed.  Andrew has changed the perception of blindness in his school.

Last summer, Andrew attended the NFB Colorado Center for the Blind summer camp.  He climbed up the rock face as described in the Kernel book I read when he was an infant.  For the last 14 years, Jenny and I modeled after Jan Bailey's father we came across in the Kernel book, we learned from other NFB parent members like Mr. Mike Wolk and Mrs. Lisa Mattioli.  We fought against every constraint imposed on our son.  Our experiences are not unique.  The efforts are replicated by families with blind children across the nation.  Our efforts benefit every blind child in our school district.  The better practices are spread to the neighboring school system.  The results are collective.  Like water droplet, channels through the spirit of NFB, roars into a mighty river.  We are getting closer to the dream that our children will develop to their full potentials, along with their sighted peers.

 

Last week, I was in a three days leadership training program.  One of the activities involved blind folding all twenty-five participants.  We were told to hold onto a 75 foot entangled rope.  We were then told to find a way to untangle it and make it into a perfect square.  Most of my colleagues were never blind-folded before.  They were uncomfortable with the situation.  For me, I have learned from NFB that one does not need to see to have vision, one does not need to see to lead, one does not need to see to accomplish.  I quickly formulated a plan, communicated to the team, and completed the task.

 

Finally, I would like to thank Dr. Maurer for offering me the honor to speak in this convention.  To Andrew, for changing my perspective of blindness, and teaching me what determination really means.  To NFB, for being the beacon in our life.  To my wonderful audiences, for your attention.  Thank you.