American Action Fund for Blind Children and Adults
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       Fall 2023      GETTING STARTED

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Get in Your Child’s Shoes: Learn and Grow Together

by Sarah Kassim

Sarah KassimFrom the Editor: When parents learn that their child is blind, they need to think in new ways about how their child will learn and function in the world. In this article Sarah Kassim shares her journey of acceptance, growth, and discovery. She is a teacher of blind and visually-impaired (VI) students and a VI consultant. She serves on the boards of the Louisiana Parents of Blind Children and the National Organization of Parents of Blind Children (NOPBC). Sarah lives in New Orleans with her husband, Mohammad, and their children, Amir and Narjis.

Being a parent is a full-time job that requires love, nurture, attention, and care. It can be a bit of a roller coaster ride, sweeping you from fun and exciting moments to times that are highly stressful. Parenthood is a journey filled with ongoing requests, demands, and expectations.

I became a parent when my son, Amir, was born fifteen years ago. My husband and I adjusted our lives to parenthood, and we were excited at each milestone our son reached during his early stages of development. Teaching him was easy. Since he had full vision, it was just a matter of showing things to him and letting him learn and understand.

Four years later our daughter, Narjis, was born. Everything seemed the same as it had been with our son, except she was born with "dancing eyes." She could recognize the people around her, walk, and talk, but she constantly bumped into objects and fell down. We thought she was simply an active child who wasn't afraid of falling.

The Journey Begins

When Narjis turned two years old, the doctor told us that she was visually impaired and diagnosed her with optic nerve hypoplasia (ONH) and nystagmus. What did this mean? The doctor did not have any answers on how to deal with a low-vision child, other than recommending that we contact the Lighthouse for the Blind in Louisiana.

As a parent I was not satisfied with this doctor's recommendations. I started to get second and third opinions, since glasses were not the solution. Finally we went all the way to Irvine, California, to visit one of the few doctors who specialized in surgically correcting nystagmus.

It was our hope that surgery could give our daughter more useful vision. However, after a long visit with the doctor, we learned that Narjis would not benefit from surgery. The doctor told us politely that there was nothing wrong with our daughter; rather, we, as parents, had a problem. Instead of trying to find a cure for her, we should invest in ways to support her in her daily life. He recommended service providers such as Lighthouse for the Blind in San Francisco. He emphasized that low vision or blindness would not stop our daughter from reaching her dreams. He explained that he has had patients who have become successful in many fields, people who even have become physicians and lawyers.

My husband and I were exhausted after our visit to California, and we really felt lost. Countless questions flooded through our minds. How would we give Narjis the support she needed? Was she merely visually impaired, or was she blind? Would she be able to go to college and become successful? Could she learn to cook and to cut with a knife? Would she ever learn to read? Would she be able to travel independently? Why did she always make a mess and never clean it up herself? Why didn't she know such basic things as what a fire hydrant is?

When Narjis was in second grade, we met an advocate who helped support us in her IEP meeting. Our advocate highly recommended that we visit the Louisiana Center for the Blind (LCB) in Ruston, Louisiana, to meet a wonderful group of people who were part of the National Federation of the Blind. We took her advice and visited the LCB. After touring the training center and seeing all the things that a blind person can do independently, we got excited. I decided to connect with these blind individuals and learn from them as mentors. I learned Braille and participated in every webinar, Zoom session, and program where I could learn about blindness.

Getting involved with the NFB was one of the best decisions I have made. It opened the doors of opportunity for Narjis and for our whole family. I gained confidence, support, and knowledge.

As parents or family members, how can we support our blind children? We cannot expect them to learn everything on their own, nor can we expect the school system to be the sole gateway for our children. We can help our children by being their primary resource. We need to connect with blind mentors, to learn from them, and to have them serve as role models for our children. We need to ask them the questions we can't answer on our own. We need to set high expectations for our children and remove the fear and the barriers that may hold them back. We need to spread awareness about blindness and not to feel sorry because we have a blind child.

Ways and Means

I have learned not to tell my daughter no when she wants to try something new, but rather to have her explore and determine whether an activity is the right choice for her. Narjis is very competitive. She loves to copy her older brother in everything he does, from schoolwork to sports. Amir was on a competitive soccer team, and Narjis loves to play outside. She asked me to sign her up for soccer, too. I wondered, "How will she be able to see the soccer ball with the little vision she has? The ball moves so fast!" I knew that if I told her, "No, you can't play! It will be too hard for you to see the ball," she would be upset. I decided to sign her up, and I talked to the coach about her blindness.

The coach was very welcoming and tried to include Narjis as fully as possible. After a few weeks, however, Narjis came to me and expressed that soccer was not meant for her. She wanted to do gymnastics instead. She concluded that the soccer ball moves too fast, the players are all over the field, and it was very difficult for her to keep up with the game. The opportunity was given, and she was the one who decided whether soccer was the right choice for her.

As a family we all have learned to be more descriptive and precise when we speak so we can be understood fully. We don't limit our leisure time activities or stop ourselves from having fun because we have a blind daughter. Instead, we include her in all our activities. Together we think of ways we can adapt our activities and learn from each other. We love to play miniature golf and go bowling. Generally these are conducted as very visual activities. Narjis might not understand or like them unless they are adapted properly. We have learned to make golf and bowling engaging for the whole family. We have found that the best way to explain the golf course or the bowling lanes is to draw a replica on our daughter's back and explain the visual picture. She gets a good idea of the course and how she needs to hit or roll the ball. In golf, one of us usually stands near the hole and makes a sound so she can get an idea how far to hit the ball.

Other activities we enjoy include, but are not limited to, basketball and swimming. We take it step by step. Let's start out with basketball. First, we explain the court layout and how far our daughter is from the basketball hoop. Second, we look at how high the basketball needs to be thrown, and at which angle. One of us stands close by the hoop and bangs the rim with a pole so Narjis can get a sense of how far and hard the basketball needs to be thrown.

Throwing the ball can be a challenge. If we find that we need to do a better job of explaining, we stop and put on sleepshades to take away our visual sense. That way we get a better idea how to fill in the missing information. We may need to repeat instructions in different ways to get the main idea across.

As sighted people we get a great deal of information through our vision. No one needs to explain to us what the layout of a basketball court is like, how high the basketball net is, or in which direction to shoot the basketball. We must try to imagine the world nonvisually to understand how to benefit our blind children. Helping our children requires patience and commitment.

How is swimming approached? Narjis loves the water, and she never feared getting into the pool. We were the ones with the fears! We feared she would drown! After she learned to swim, she expressed that she would like to join a swim team. We encouraged the idea and signed her up.

Joining a swim team did not just require knowing how to float, but learning to swim many laps across the pool. The kids swam freestyle, breaststroke, butterfly, and backstroke. How could these strokes be taught to a blind child, and how would she learn to swim in the middle of the lane?

When the coach explained a new swim stroke visually, we asked him to repeat the explanation for Narjis. He guided her arms and legs while he explained the stroke verbally so she could understand. It took concentration, repeated explanation, and one-on-one guidance before she became proficient in the stroke.

Not only does Narjis need to learn particular strokes. While swimming she needs to have spatial awareness of how wide her lane is and how many strokes it takes to complete one lap of twenty-five yards. After she was on the swim team for a while, Narjis expressed to us that she couldn't swim at her full speed due to her fear of hitting the wall when she reached the end of the lane.

We did some brainstorming and researched how other blind swimmers swim competitively. We learned that a person can stand at each end of the lane and use a "tapper," a pool noodle on a pole. They tap the blind swimmer as they approach the wall, letting them know either to slow down or to do their flip turn. I hand-made our "swim tappers," and I have officially been designated as swim tapper for Narjis. At swim meets two of our family members make sure to attend so we can give her the signals she needs.

Critical Skills

Even though Narjis has a good amount of residual vision, we realized that Braille was the reading medium that would benefit her the most. At first we struggled to get the necessary support from the school. After we learned Braille and got involved with the school to make sure the proper accommodations were made, materials were adapted and Braille instructional minutes were provided. Narjis excelled in Braille proficiency. She has participated in many regional Braille Challenge competitions, where she placed first. She was even among the 2022 National Braille Challenge finalists! She also has participated in the annual Braille Readers Are Leaders competitions, and she always reaches first, second, or third place in her grade category. Narjis loves to participate in STEM activities, and she enjoys anything involving Braille reading.

Let's turn to travel and independence. For a long time I didn't believe in the long white cane, and I did not appreciate its significance. I thought Narjis had enough residual vision to walk without using a cane, and I did not want her blindness to be noticeable. She learned to use her shoes for guidance while she walked. Let me tell you, we had to invest in a new pair of shoes almost every month! She always ended up with a hole by her toes from scraping her feet along the ground.

Not until I took courses at Louisiana Tech did I recognize the significance and value of the long white cane. One of the courses I took was Orientation and Mobility. As students we had to spend three days traveling with a cane under sleepshades. After my training I realized that the white cane is a valuable tool. I encouraged Narjis to use her white cane and be proud to travel independently.

The NFB believes in the philosophy behind "Structured Discovery." Using the white cane not only allows a blind person to travel independently, but to explore the environment. Students are not guided, but learn to explore the obstacles they encounter, using the cane to create an understanding of the environment around them. During COVID I was able to join my daughter in her orientation and mobility lessons. I learned so much from each lesson, and we tried to follow up on our own. When we drive in the car, we discuss the road, the traffic, the types of lines and their purposes. We point out cardinal directions and street names so Narjis will understand where we are going. We have learned to create tactile maps so she can understand what a street block is and grasp concepts such as parallel and perpendicular.

When we join Narjis in her orientation and mobility lesson, we see that the teacher makes sure she gets a full description of the street. She allows our daughter to explore objects along the way—a light pole, a stop sign, a fire hydrant. They talk about the object and why it is there. At first I did not understand why this extra step was being taken. Then I imagined myself walking with my eyes closed. I would not get any visual information. All of my information would come through my senses of hearing, smell, and touch.

Our instructor is amazing in allowing us all to walk under sleepshades, using white canes. This experience is very enriching, and I highly recommend it to everyone reading this article. Each year during the NFB National Convention there is a Cane Walk session. Children and family members put on sleepshades and explore the convention hotel, using long white canes. Experienced mobility instructors ask leading questions and provide generous guidance.

The Next Steps

How can we as parents help our blind children? We have to understand their needs. We need to set high standards and expectations. Blindness should not be a barrier to what we do with our kids, but an enlightenment.

We need to get in our children's shoes and imagine the world as they perceive it. If they have an interest in science, let us bring science to them. Let us create a tactile experience through which they can understand scientific concepts and theories. If our children are into cars and means of transportation such as trains, trucks, and planes, take a field trip with them to explore each of these modes hands on. If our child loves food and the joy of cooking, get in the kitchen together and explain the materials used in cooking. Show your child how to hold a knife safely and what to look out for when cutting. Show them how to use the oven and to cook on top of the stove.

The world is filled with possibilities, and the only way we can achieve is by trying. We need to raise our expectations and believe in our children. As my daughter always says, "Blindness is not a disability, but a different ability." Learn to love, nurture, and grow together.

I have gained and grown so much from my daughter, and from being surrounded by successful, enthusiastic blind people who are happy to share what they have learned along the way.

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