Future Reflections Convention Issue 2013
by Mary Jo Hartle
From the Editor: Mary Jo Hartle is a teacher of blind students and the mother of two young children. The following article is based upon a presentation she gave to a group of parents during the NOPBC conference. You can visit her blog at <makingitontheplayground.com>.
I became blind at the age of twelve. As far as the doctors could figure out, I had an allergic reaction to some medication. I am legally blind, with vision that is probably like that of somebody with Stargardt's or macular degeneration or optic nerve hypoplasia--something that affects the optic nerve. I was one of those kids who grew up on the fence between being blind and sighted, trying to do things as a sighted person but not being very successful.
I became acquainted with the National Federation of the Blind in 1999, when I attended my first convention. (I'm so active with the NFB now, I sometimes joke that I should have said no to that first phone call!) Through the NFB I learned to deal with my blindness, and I ended up becoming a teacher of blind kids.
Through the program at Louisiana Tech I got my certification as a teacher of blind students. I also got national certification as an orientation and mobility specialist. After I graduated, I went to work for the national office of the NFB in Baltimore, where I served as director of education. My husband is Jesse Hartle, who is a governmental affairs specialist with the Federation. We've now entered the new world of being parents. This is our daughter, Kayla, on my lap, and we're expecting our second child in September. So this is a very fun time for us.
I want to start today by talking about cane travel for young blind children. Often parents are told, "Your child has some vision, so he doesn't really need a cane." My mom was told that I didn't need a cane when I went blind, because I could still see a little bit. I would argue that anyone who has a visual impairment can benefit from having a cane, even if they don't use it all the time. The cane provides a tremendous amount of information, and this is especially important to children with visual impairments. Children don't realize how much they're not seeing. They think they can see, but they're missing drop-offs and steps, and they're bumping into obstacles that are just slightly outside their field of vision.
It takes time for people to go through the emotional process of accepting a cane. A person has to adjust to the social perceptions that go along with cane use. The earlier a child starts to use a cane, the better off she or he will be in the long run. The child will get used to the cane, and it will become part of who she is. She won't experience the social stigma that kids feel when they adopt the cane at a later age.
Most blind people have some degree of vision, whether it's light perception or a bit more. But our vision is like Swiss cheese--there are gaps in it. If you have a little bit of vision, it might be useful in some circumstances but not in others. Lighting can make a big difference. Some people can't see in the bright sun because there's too much glare. Some people can't see in a dark theater. The cane is a tool that fills in the holes where our vision doesn't work. Providing this tool is a way you can help your children, equipping them to make up for the gaps they may have.
It's amazing how easily little kids take to using a cane! It's only as they get older that they take in society's perceptions: "Don't use the cane! It makes you look blind!" In the NFB we promote using the long white cane, and using the straight cane, especially with kids. It's more rigid than a folding cane, and it doesn't collapse unexpectedly like the telescoping canes tend to do. The NFB canes have a metal tip; that's a big difference between our canes and many others. The metal tip gives a lot of good feedback. You can feel various textures with it, such as asphalt versus pavement. Another great benefit is the sound quality for auditory feedback. When I cross a street I can hear my cane tapping, echoing off the curb on the other side. If I'm in a shopping mall and pass an opening, I can hear the change in the echoes. These subtle things are important. Children start to notice them when they're very young, and they build upon them as they get older.
Another advantage of the NFB canes is that they're very lightweight. When the cane is heavier, the child may drag it rather than tapping it, because his arm is getting tired. The NFB has a program to provide free white canes, and you can get a new free cane for your child every six months. Kids outgrow everything else, and they outgrow their canes, too. You can send your old cane back or pass it along to another child.
Movement is the key to independence. Movement permits exploration by touch, and it is through touch that a blind child learns about the world. As a sighted person, when you walk into a room, you instantly take in the layout. When we, as blind people, walk into a room, we gather information by listening to the echoes and sounds and by walking around and exploring to find out what's around us.
As you know, babies and toddlers take in a lot of information visually, but they also learn by exploration. They reach, they touch, they grab things. Sighted kids want to touch everything. Blind kids have the same need to explore and put together the pieces of the puzzle.
I started a blog a couple of years ago. It's called Making It on the Playground. You're welcome to check it out. It's intended to be a resource for parents and teachers. I post various ideas for activities with kids in different age ranges. I got the idea for the title because I started thinking about how our children visit all sorts of playgrounds. Play is their form of work. From the time your child is born, he experiences all sorts of playgrounds. For an infant, the playground is your lap. You hold him, talk to him, play hand games with him, make faces. If the child is blind, you need to expose him to the same things. Talk to him, bring things to his hands that you would show a sighted child visually.
From the lap the infant migrates to the floor. Again, our blind children need the same opportunities as children who are sighted. Think about what you would do with a sighted child, and then think about ways you can adapt that activity for a child without sight. As the child lies on the floor she feels new textures, touches things, listens to sounds and tries to figure out where they come from.
Parents sometimes hear from professionals, "Because your baby is blind, you can expect that there will be some delays." That doesn't have to be true. Blind children are capable of developing at the same rate as their sighted peers. Deficits happen because the child is missing out on experiences and opportunities that are present in the environment. A sighted baby lies on the floor and reaches for the toys she sees. A blind baby doesn't know those toys are there until you show her. Use toys that make noise, and bring them within her reach so she can touch them and explore them.
When the child is ten or eleven months old, she should start to cruise around. Again, you may need to introduce this concept to your blind child. Place her near a chair or couch and show her that she can pull herself up. Movement is definitely possible for blind children at this age, but they need a different trigger to get them started.
As soon as the child begins to walk, he should have a cane in his hands. You can model for him how to use it. Get a cane for yourself, called a teaching cane. As you move the cane back and forth, let the child touch your hand and feel what you're doing. She'll have her own little cane, and she'll try to copy you. At first she won't have the motor skills to move the cane correctly, in an arc from side to side, but she can start to get the idea about what needs to happen. Encourage her to hold the cane in the right position, cupping it with the hand and swinging it back and forth with the fingers. We recommend that the cane should come to the chin, or even to the bridge of the nose. A longer cane gives feedback sooner, so it allows more reaction time than a short cane.
Musical toys are great for blind toddlers. You can play hide and seek with your child, using a toy that makes sound. Hide the toy and have the child listen and go find it. It's a great way to encourage exploration and problem-solving.
Something I discovered accidentally is the bathroom as a learning environment. Acoustically it's wonderful--it has great echoes! You can improve upon the echoes if you take out the rugs and the towels. Go in there with your child and play with a variety of sounds. Tap a spoon on the floor, or bang wooden blocks together. Your child will begin to manipulate his toys in different ways to get new sounds from them. The toy will make a different noise close to the wall than it does out in the middle of the room. This is great training for later on, when he starts to pick up different sounds with the cane.
The kitchen is also a great environment for learning. Most toddlers are underfoot when you cook dinner, pulling pots and pans out of the cupboards. If your blind child isn't doing that, set her next to the cupboard and pull a few things out for her. Let her play with real-world objects such as spoons, measuring cups, metal bowls, and egg beaters.
Sometimes tactile defensiveness begins when the child touches something by accident that isn't friendly, or when she feels forced to touch something that she doesn't like. You have to work patiently with children to overcome this tendency. It can be done through a variety of activities. You can begin with a substance such as sand or gravel. Have the child dig, make piles, fill bowls, and find toys that are buried. Dried beans and rice are also great. Later you can introduce Play-Doh and clay. Finally, move on to messy play with cornstarch and water—it creates a great substance that stiffens up when you work with it and turns to liquid when you let it go.
Mannerisms, sometimes called blindisms, may begin with blind infants and toddlers. Children may do a lot of self-stimulating activities such as rocking or eye-rubbing. Like thumb-sucking or nail-biting, these can become entrenched habits. Try to distract the child with an activity that will occupy him. When he is a little older you can have a special code word to remind him to stop, so that you don't embarrass him. You can reward him for going a whole day without the behavior. You have to let children know that their sighted friends and relatives don't rock or eye-rub. Sometimes professionals just shrug off the behavior and say it's something blind kids do, but those behaviors set the child apart and make it harder for him to fit in socially.
I want to emphasize that our blind children have the same capabilities as their sighted peers. If you're not sure what sighted children of a particular age are doing, go out and observe. Watch your neighbor kids or your nieces and nephews. Ask yourself if your blind child of the same age is able to do the things those kids are doing. If your seven-year-old neighbor walks a block to get home from school, think about teaching your blind child to take that walk alone. You might start out walking with him, then let him walk on ahead of you. Then allow him to walk with a friend. By the time your child is a teenager and his friends are hanging out at the mall, he should be able to take the bus and hang out at the mall, too.
It can be hard for you, as the parent of a blind child, to separate your normal fear for your child, as a parent, from your fear because your child is blind. Are you reluctant to have her do something because you don't feel comfortable with it as a parent, or because you're afraid she can't do it because of her blindness? Think carefully about these things and try to sort them out.
The environment for people who are blind comes with many barriers. The more you can break down those barriers for your kids, the more they will learn to be self-advocates. They will use the movement they learn in order to gain independence.