American Action Fund for Blind Children and Adults
Future Reflections Convention 2018 CONFERENCE PRESENTATIONS
by Jeannie Massay
From the Editor: Jeannie Massay is a counselor based in Oklahoma City, working with people who have behavior and anxiety disorders. She has been active in the NFB ever since she won a national scholarship in 2009. She serves as president of the Oklahoma affiliate, and she is a member of the national board of directors. This article is based on a presentation she gave at the 2018 NOPBC Conference.
A lot of parents worry about their blind children when it comes to making friends. I hear them say things like, "My daughter will talk when she's around people she knows, but she won't talk to new kids," or, "My son has a hard time on the playground where the other kids are running around." One mother told me she's realizing that she should have talked to her daughter about dating a long time ago. Her daughter is nineteen, and she's only now starting to find out what kids her age are doing.
As the parent of a blind child, you may go through times when you feel you haven't gotten things right. You get upset with yourself because you feel you have made mistakes or missed important opportunities. Try to remember that you did the best you could at the time. I don't know of any set of rules for raising a blind child, or for raising any child, for that matter.
Think about your own experiences growing up. What were some of the things you found to be difficult around making friends? Maybe you were overweight, and kids teased you about being fat. Maybe you had a hearing impairment and couldn't follow conversations in a noisy room. Maybe your family moved around a lot, and as soon as you started to make friends you'd be uprooted and would have to begin all over again in a new school.
I didn't become blind until I was an adult, but I had horrible vision as a child. In first grade I got braces. Also, although I didn't know it at the time, I had ADHD. In first grade I would get in trouble with my teachers and my peers for humming, and I didn't even know I was doing it. I'd be reading a book or happily working on a project, and people would complain. So I was the weird kid with braces then the kid with really thick glasses. I was very shy.
My mother tried to help me feel good about myself. She would say, "You are intelligent, capable, beautiful, and lots of fun to be with." I would say, "Mom, you're supposed to say that! You're my mother! Other people don't think that!"
Blindness is an obvious way that our kids are different from most of their classmates. Any difference can create social challenges, whether it's being the blind kid or the new kid or the weird kid who hums. Most sighted people, whether they're kids or adults, don't know much about blindness. They have a lot of questions and uncertainty, and our blind kids have to deal with that. They have to answer questions like, "What's wrong with your eyes?" "How much can you see?" and "Why don't you just wear glasses?" You can talk to your kids about how to answer those kinds of questions. Help them understand that people want to learn, and that they don't mean to be hurtful. Your kids need to reach a place where they feel comfortable answering questions, even when they're thinking to themselves, Oh boy! Here we go again!
When I first lost vision as an adult, I found it awkward to talk about my blindness. I didn't know the Federation yet, and I'd say things like, "I have 23 degrees of central vision in my left eye. I have no peripheral vision. I can't see anything with my right eye. I have glaucoma." People would be silenced because they had no idea what any of that means. When I joined the Federation I finally found a group of people who told me, "You don't have to say all that. All you have to say is, I'm blind.” Regardless of how much vision you have, if you are making efforts to learn the skills of blindness it's okay to say, "I'm blind." I use a cane to get around, I use text-to-speech technology, and I use Braille to the best of my ability. I have a network of friends who can help if I don't know how to do something in a nonvisual way. All of that really helped me deal with what I think of as a loss of myself; I didn't know who I was as a blind person. The thing is, I'm still me.
We can help blind kids and blind transition-age youth by reminding them, "Your eyes don't work, but you don't necessarily need them to. Your brain, your heart, your soul—they're all there. You may do things a little differently, but you are you for a reason."
When I'm working with kids, sighted or blind, we often talk about their fears. We work on questions such as, "What are you afraid of? What are you afraid will happen to you if you were to go up to someone and talk to them?" When you ask your kids questions like that, what do they tell you? Why don't they talk to people? Why don't they want to try to make friends? Challenging anxious thoughts by confronting and disproving what they say will reduce anxiety overall. Teaching children to feel comfortable with themselves in a multitude of situations helps to prepare them for successfully living wherever they may go or whatever they may do.
One of the things that can be tough for blind kids in a group of children is the difficulty around finding out who is where. Sighted kids just look around, and they know. Blind children have to find other ways to gather that information. They can ask, "Hey, who's here?" or an adult or another child can say, "Mary's over by the slide."
You can teach your blind children some coping strategies. You can teach them how to get the information they need about who is around them. The child might ask an adult who is there and where they're sitting. In a classroom situation the child can listen to where people are when they answer questions or when the teacher takes attendance. If there is alphabetical seating, the child can learn where classmates are sitting and learn to recognize their voices.
A lot of blind kids are more comfortable relating to adults than they are to peers. An adult may take the lead by asking questions to draw the child out. If there is an awkward moment, the adult may have the skills to work through it until things are okay again. Most kids haven't developed those skills yet, so things can get a little sketchy sometimes. It isn't necessarily due to blindness. It's mostly about people not quite knowing how to connect with each other.
If you notice that your child is developing a bond with another child, do what you can to encourage it. One parent told me that her blind son, Max, has a really good friend, and they always have lunch together. However, this friend's brother doesn't care for Max. Max's mother wanted to help him keep the friendship he has, but she didn't want to put him into a situation where the brother would torment him. She found that things worked well when the friend came over to play with Max at home, leaving his brother out of the equation.
One thing that can help blind kids build social skills is to have what I call organic conversations at home. What I mean by an organic conversation is a conversation about real things that are happening around you, things your child can be engaged in. For instance, when you go shopping, talk about where you are going and why you're going there. "We're going to the supermarket to buy meat to make hamburgers. We're going to grill hamburgers at the cookout this Saturday." When you're driving, talk about the roads you're on and the landmarks you're passing. Give your children lots of information about the world, and plenty of hands-on opportunities to explore. Through those organic conversations they will gain knowledge about the world that will help them when they relate to other kids their age. They will share the same basic knowledge that their peers have.
Many blind children develop behaviors such as rocking that can be a barrier between them and other people. There are several theories about why kids rock. I believe that rocking is a self-soothing behavior. It's something children do that they can control.
Hand-flapping is another behavior we see sometimes in blind kids. It seems to be related to sensory integration issues. Therapeutic intervention can help when you're dealing with behavior issues. Substitution is a strategy that can be very effective. You help the child extinguish a problem behavior by substituting a behavior that is socially appropriate.
Often kids aren't even aware that they are rocking or flapping or engaging in otherwise self-soothing or distracting behaviors. You don't want to embarrass them by reminding them all the time, "Jennifer, you're rocking again!" or "Jason, quit flapping!" Some parents find it helpful to use a pager that vibrates. The child can carry the pager in a pocket and feel it when it goes off. Nobody else will notice. Other strategies such as gently touching the child on the shoulder after having had a discussion about you using that as a reminder can be effective in creating awareness of the behavior without embarrassing the child.
If your kids have problematic behaviors, seek out a cognitive behavioral therapist who can teach some coping skills. If you feel your child could benefit from counseling, do it, please! It's far better to address an issue before it becomes a big problem. A good counselor can help your child learn some coping skills and process anything traumatic that has happened, such as vision loss. When you select a therapist, make sure you talk to them first. Make sure the therapist understands that your blind child is a child first, and that some of what your child is experiencing may not have anything to do with blindness.
I don't have all the answers, but it's great that you are here, networking with other parents. You are looking around you and seeing thousands of blind adults who are doing okay. I have friends who are blind and are living their lives just like everyone else. They have jobs such as attorneys, teachers, computer programmers, school counselors, therapists and more. They have families and homes, and they live their version of the American dream. I can tell you about countless blind people who have happy, successful and productive lives. Your kids are going to be okay. Vision is not a requirement for success.
Your kids have so many opportunities in life! I used to tell people I can do everything except drive, and now driving is a possibility, too! So remembering my mother, who long ago told me I am beautiful, intelligent, talented, and fun, I'll say good-bye to you, for now.