Your Rights as Parents
Many parents go through a series of emotional reactions when they learn of their child's visual impairment—ranging from anxiety and anger to acceptance. You may have, or have had, all these feelings. But you also have certain rights, and it is important that you recognize them.
1. The right to feel angry: No one anticipates having a child who is visually impaired. You couldn't prepare for it and need time to figure out how you can give your child the help she or he needs—now and in the future. Anger on behalf of your child is a natural reaction. And it can work for you if you use it to fuel your efforts to get the best services possible for your child.
2. The right to seek another opinion: It's common practice to seek a second opinion before having surgery or investing money—and the same is true when looking for medical care or an educational program for your child. If you learn of a new treatment or device that might help your child, find out more about it, even if your doctor is unaware of the new procedure and you have to go to another doctor.
3. The right to privacy: Many parents have experienced the unexpected effect that having a visually impaired child has on family members' privacy. This is because seeking help for your child often brings into the family circle a group of professionals who examine, give advice, and may seem intrusive. Keep in mind that some aspects of your life are simply no one else's business. If you do not want to discuss something or have your child's picture taken for study purposes, you have the right to say "No."
4. The right to keep trying: Parenting sometimes seems harder than necessary when well-meaning friends or professionals offer unwanted opinions. Perhaps someone has told you that you're setting goals that your child will not be able to reach. That doesn't mean you should give up. In the preschool years your child has the greatest potential for learning, and no one knows what circumstance or combination of circumstances might make a difference. If the others turn out to be right—so what! You and your child won't know unless you explore the possibilities.
5. The right to stop trying: Well-meaning friends and professionals may also tell parents that it would make such a difference if they worked more often or longer at home on a particular skill-training program with their child. The truth is that it could just as easily make no difference at all. You are the ones living with your child; you are the ones who somehow are expected to achieve at home what trained teachers have not been able to do at school. And you are the ones entitled to make the decision about when it's time to stop trying.
6. The right to set limits: There are limits to what one or both parents can do. Don't expect yourselves to think of your child all the time. And your child shouldn't expect to be the center of attention. You have limits and your child has limits. Learning to recognize both will help you avoid responding to demands in anger or fatigue.
7. The right to be parents: A lot of parenting involves teaching. But you are mommy and daddy first. You can't expect to be teachers all the time. You and your child need time to fool round, giggle, tickle, tell stories, laugh, and just do nothing. Those times are as much a part of your child's "education" as the time spent on training and learning activities.
8. The right to be unenthusiastic: No one is excited about a job every day; it can be tedious one day and fascinating the next. Accept the fact that there will be days when your child thrills you with joy and days when parenting seems exhausting or boring. You are entitled to be "up" sometimes and "down" others.
9. The right to be annoyed with your child: Children who are visually impaired are just as capable of being ornery as other children and should be disciplined. You may feel guilty about scolding, but appropriate discipline related to specific unacceptable behavior is an important part of learning. And your preschooler is not going to hold a grudge against a loving parent.
10. The right to time off: You need time to yourselves, time alone together, and with other adult family members and friends, and just plain time without kids. There are many parts to your life, and each deserves as much attention and nurturing as your visually impaired child does.
11. The right to be the expert-in-charge: You know your child better than anyone else. You two know what works and what doesn't. Teachers come and go, but you are the experts with experience and first-hand knowledge of your child. As the experts, you have the right to be in charge of your child's education, social, and medical decisions—at least until she or he is able to make them. Professionals don't live with the consequences of their decisions, so while you may want their opinions, remember that they are only opinions, not facts. And you have the right not to be pressured into a decision that you don't agree with. Parents are the most important resource that a child has.
12. The right to dignity: The rights of parents really boil down to the right to be respected and treated as an equal. It is not a matter of your being pitied or admired. What you do have a right to expect is to be listened to and supported in a nonjudgmental way. And you expect the truth—from doctors, teachers, social workers, and therapists, who are there to help you; from friends and neighbors, who owe you a chance to be someone other than "parents of a child with vision problems"; and from family members, who love you. You deserve the courtesy of having professionals who visit your home arrive promptly for appointments. If a teacher is repeatedly late and does not have a satisfactory excuse, call the program supervisor and ask why. You deserve to be talked to as adults; if you feel a teacher or therapist is talking down to you, tell that person so. You have the right to be assertive in your own and in your child's behalf.
Learn more in Reach Out and Teach: Meeting the Training Needs of Parents of Visually and Multiply Handicapped Young Children, by Kay Alicyn Ferrell, Ph.D.