Future Reflections Fall, 2003
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Finding a New Path: Guidance for Parents of Young Children Who Are Visually Impaired or Blind
Review by Barbara Mathews
Cover of the CNIB handbook for parents.
Finding a New Path: Guidance for Parents of Young Children Who Are Visually Impaired or Blind is a handbook published by the Canadian National Institute for the Blind. The “Forward” explains that it was prepared as a result of a survey identifying parental concerns and needs, and that it is intended to provide parents information about blindness in general, how to help their children develop needed skills, and how to deal with medical professionals, schools, and others.
As the title indicates, the book is targeted to parents of babies and young children who have recently received a diagnosis of blindness or visual impairment. However, parents of early school-age children may also find several sections interesting. The book includes chapters on diagnosis, blindness in general, family life, early development and learning, education, and advocacy.
A generally positive attitude toward blindness and parenting a blind child is reflected in most of the book. For example, one section is entitled, “You Will Have All the Rewards of Parenting.” It reassures parents that, “You, too, will talk proudly about your child, his sense of humor, his intellect, his talents, and his accomplishments.” Similarly, the chapter on family life starts out, “While having a child who is blind can change a family, your family remains like any other in most fundamental ways.” I still remember when I wondered about such things, and I know that honest yet realistic encouragement can help families start down the right path.
There are several other valuable themes in the book. One is the promotion of the parents’ role as advocate for their child. I know some school administrators and program directors try to convince parents otherwise, so it is refreshing to see the encouragement in the chapter entitled, “You are Your Child’s Advocate.” It includes statements like, “You are in control,” “Try to be the captain of the team,” and “You may be the most important professional on your child’s team.” (Preferably, it would have said, “You are the most important professional…”)
Another excellent message is the encouragement of interaction with other parents. Because blindness is a low incidence disability, finding other similarly situated parents can be a challenge. I was pleased to see the book direct parents to the Internet as a valuable tool to communicate with other parents. I was also pleased, of course, to see references to the National Organization of Parents of Blind Children and Future Reflections, in spite of the book’s difficulty in getting the names of both exactly right.
The book contains some important nuggets of information about social development. One is what the book calls “the power of the invitation.” Experienced parents of blind children know that they have to do most of the initiating of social interaction at first. The book has an excellent page devoted to suggestions for fostering friendships at different age levels, which is very helpful for parents trying to figure out how to do this.
On the other hand, some sections of the book appear to be written by someone who lacked much actual, everyday experience with a blind child. A prime example is the section on mannerisms. I laughed out loud at the suggestion for eye-poking, “You can trying saying, ‘poking your eye doesn’t look nice.’”
Some of the other suggestions are a bit silly, such as labeling drawers with pieces of cloth so the child knows which clothes go where. Children, of course, remember which drawer is for pajamas, etc., without labeling. The statement that a blind child won’t be interested in how toys “look” seems to come from someone who hasn’t been around a blind child with her siblings or peers. Many blind children care very much about how their toys look to others.
The section on toys generally falls into the common trap of assuming that complicated electronic toys that talk and make a lot of noise are best for blind kids. In truth, they use a lot of batteries and break down, and kids usually prefer simpler toys and their own imaginations.
The sections on financial hardships and emotional strain unfortunately overstate the difficulties. Under “Financial Hardships,” it states that some families “have to move,” and “some parents have to change jobs.” Parents should not be led to think it is typical to have to move or change jobs because a child is blind, especially soon after receiving a diagnosis.
The section entitled “Emotional Strain” states, “Having a child with a severe disability can put a strain on family relationships, significantly alter lifestyles, and limit a family’s ability to take part in group activities.” Perhaps it can, but in my experience and those of other parents I know, blindness alone does not have such an impact, and much of the rest of the book is devoted to making that point. Not surprisingly, according to the “Acknowledgements,” this section reflects the input of a psychotherapist, rather than the parent of a blind child.
There are other lapses that a critical reader will notice. For example, in describing how a blind child is different from a sighted child, it says, “He needs help getting around.” I wish the author had phrased this heading differently. The text following that statement—“He needs to learn how to move about safely and confidently”—is fine. The statement that note-takers are appropriate starting in “late elementary” school is misleading. Many children start using note-takers such as the BrailleNote much earlier.
Overall, the book’s positive tone, helpful information, and advice for parents substantially outweigh its negatives, and I would recommend it for the target audience. It is most useful to Canadian families because it includes descriptions of Canadian laws, school systems, and programs. However, American families will also find many parts of the book useful as long as they recognize that education laws, practices, and some resources are different in the United States.
Finding a New Path: Guidance for Parents of Young Children Who Are Visually Impaired or Blind. Edited by Deborah Gold, Ph.D., published by The Canadian National Institute, copyright 2002. 200 pages. Illustrated, black & white photos, bibliography, and appendices. ISBN 0-921122-38-1
To obtain copies, contact The Canadian National Institute for the Blind, 1929 Bayview Avenue, Toronto, Ontario, Canada M4G 3E8. Phone: (416) 480-7295. Fax: (416) 480-7677. Web site: <www.cnib.ca>.
Barbara Mathews is a regular contributor to Future Reflections. She is a member of the national board of the National Organization of Parents of Blind Children, and the mother of two children, including seven-year-old Kyra, who is blind.
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