by Barbara Pierce
When a blind child enters a family, be it by birth, accident, vision disorder, or adoption, parents and the others close to the youngster face the challenge of supplying the information and concepts that sighted children naturally acquire by visual observation. The statement seems obvious but identifying such issues and recognizing when peculiarities in the blind child’s behaviour stem from a simple lack of information are not always easy to do. And knowing how to provide the missing data can be difficult to work out.
If the blind child has other disabilities as well, the situation becomes still more complicated.
Every multiple disabled blind child is unique, so very little can be said in general about the resulting individual challenges. But the assessment of whether a blind child is behaving appropriately is the same whether or not multiple disabilities are involved: begin by determining whether the child is functioning at the same level as a sighted youngster with the same set of other abilities. For this reason, the following discussion will address only blindness and matters associated with this disability.
The existence of early–intervention services for blind children zero to three has undoubtedly benefited children and parents alike, but we have paid an inevitable price for introducing perceived experts into the lives of these families. Parents raising children with no identifiable disabilities
assume from the beginning that they are primarily responsible for carrying out the daunting task of civilizing their children and teaching them the skills they will need to get along in the world and with other people. All of us who have raised youngsters recognize how huge and humbling a job
parenting is. When professionals enter the picture to assist parents and work with the blind child, it is not surprising that many parents are eager to relinquish their personal responsibility for the task of ensuring that their blind child progresses at grade level. After all, they know nothing about
blindness, and a professional on the subject is now on hand to take over.
It is fair to say that very few of these professionals actually believe that they have been charged with completely taking over from parents. After all, the parents spend much more time with their blind child and therefore know a lot that the expert can never know about this particular youngster, given the time and attention he or she has for observing and working with the child. So, don’t make the mistake of assuming that the usual set of parental responsibilities is no longer yours just because your child is blind. You will have to modify some of the standard teaching techniques employed by parents in order to use them with a blind child, and the professionals working with your child may well be able to give you some tips about how best to demonstrate the way to do various things. But parents who wait around for the expert to show their children how to blow their noses, make a sandwich, recognize print and Braille letters and numbers, and take themselves to the bathroom independently will wait for a long time, and meanwhile they are placing their children at a painful disadvantage.
Raising a blind child, like raising any other child, is both a frightening challenge and a profound blessing. You have resources: members of organisations for and of blind people, parents of other blind children, and the professionals who work with your family. But you are always the primary expert on your child, particularly on his or her abilities and strengths. I hope that you will advocate for your son or daughter and teach him or her the art and science of self–advocacy. You are the one who can most effectively teach the skills and train the habits that will enable your youngster to fit into the family and make friends in the school and community.
Don’t make the mistake of assuming that, just because your child is blind, he or she is incapable of noticing the gestures that others use or is unable to use them appropriately. When a person uses gestures close to blind people, we can hear them—not exactly what they are, but certainly that hand, arm, and shoulder motions are taking place. By the way, plenty of facial expressions also make their way into the voice. The admonition to smile before picking up the telephone demonstrates this truth. Sighted people are often oblivious of the impact their expressions have on their voices. It is hard for most people to realize how easy it is with a bit of practice to read moods by listening to a voice. But back to gestures. Blind children should learn all they can about gestures. Come here, okay, thumbs up, even high five are all easy to learn gestures and should be taught as early as possible.
A good way of beginning such lessons is to teach the child to sing songs with gestures. You should keep an eye on the gestures to make sure that they don’t decay in the days and weeks after they are learned. But using any hand motions helps a blind child prepare to incorporate
gestures into his or her personal repertoire.
As the child grows, however, be sure that gestures mature along with him or her. I learned to wave good–bye as a small child. As the years passed, I continued to waggle my entire hand up and down when I waved. I was a teen before my friends showed me that waving at a carload of boys required one to wiggle the fingers only, not the entire hand. I was mortified to have been doing it wrong, but I was also motivated to make the change.
Encouraging your blind child to use facial expressions is also helpful. Learning to make faces early, like learning to roughhouse and generally move in unusual and unexpected ways, is a critical skill if the blind child is to fit in with the children in the neighbourhood or classroom. You can place the child’s hands on your face while you demonstrate scrunching your nose; twisting your mouth into smiles, grins, and frowns; furrowing your brow; squinting; or raising your eyebrows. These are all easy expressions to perceive tactilely, and with a bit of practice most children can reproduce them on demand. Try working on facial expressions while you are reading stories in which the emotions of the characters can be acted out by you and your child. Speaking expressively and encouraging your child to do so as well will nurture the capacity to be dramatic.
Putting away toys is a valuable skill for all children to learn.
It always takes my breath away when I hear about blind school age kids who cannot put on or zip a coat, tie their shoes, or button their own clothes. I know of blind teens who cannot put on their own pierced ear earrings or wash and style their hair. But the problem reaches beyond personal care. Many blind children have no idea how to make a bed, polish shoes, pour a glass of milk, or unlock a door. One teacher calls this the magic fairy syndrome. It is all too easy for a blind child who is handed everything ready to use to assume that things just come that way.
In the short run, of course, doing things for the blind child is quicker and much easier for a parent. But blind people almost always learn best by doing things with their own hands. When trying to decide how best to help a blind child approach mastering a new task, try doing it yourself without looking. Pay particular attention to which characteristics of the task are most recognizable by touch. That may well give you a good idea about how to begin instructing your child. You can also talk to a competent blind adult to get ideas about where to start. The more experience you and your child have in working out these challenges, the easier you will find it to talk him or her through each new task.
I will put in a word here in favour of teaching blind children to pick up their messes, be they toys, dirty clothes, or spilled milk. One of the hard facts of blindness is that being organized makes life more pleasant and more efficient. We learn the virtues of noticing where things are and putting them back where they belong only when we tire of having to cope with the consequences of not doing so. Some people are just better at remembering where they left things, but even those who come equipped with a wide streak of disorganization will be grateful in the long run to parents who did not let them get away with waiting for other people to dress, feed, and pick up after them in their early years.
Here is one final tip for parents of children with a little residual sight. Your youngster will often prefer to learn to do things while watching themselves doing the task. Allowing them to get close enough to observe what they are doing is fine as long as doing so is safe. You don’t want blind children using scissors near their eyes or lighting candles when their hair could go up in flames. So, learning to tie shoes should not be done with the shoe on a table, under a strong lamp. Once the shoe is on the foot, getting it up at that level is a bit hard to accomplish and will result in strange looks from the other kids in gym class.
Blind children do not or should not live their lives in a social vacuum. It’s important that they learn from the beginning to get along with other people, especially other kids, and to pull their own weight in the family. Siblings should not be recruited to help protect the blind child or to shield him or her from the consequences of inappropriate actions. At the same time siblings should be discouraged from teasing or taking advantage of a child’s blindness. Keeping siblings from killing each other is one of the eternal burdens of parenthood. When a blind child is part of the family the aim should be to include the child in as many activities as possible. When Dad is roughhousing with the sighted brothers and sisters, he should encourage the blind child to join the fun.
When everybody else is playing on the monkey bars, the blind child should be swinging from his or her hands as well. Nothing inherent in blindness causes weak hands, but many, many blind children need help building hand strength because they have been discouraged from the kind of play that builds it naturally.
Future Reflections Winter/Spring 2006