Having a Daughter With a Disability: Is it Different For Girls?

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Steps Towards Independence: Beginning at Home

What can parents do, in practical terms, to foster greater independence and self-sufficiency in their child? Perhaps the single, most important thing parents can do to help their child is to expect her to aspire. If parents truly want their daughter to realize her potential for independence, they must make this their expectation from day one. From infancy on, they should allow her as much autonomy as possible, stretching her vision rather than limiting it. She should be encouraged to go out and meet the world. This is a common thread running through the stories of women with disabilities who have strived for and gained independence and self-sufficiency, their parents expected and encouraged them to aspire and achieve (Harrison & Rousso, 1989).

Here are some ideas that parents can put to use in their home and in their parenting style.

• Start early. Don't wait until your daughter is sixteen. Independence and self-determination are built one day at a time. Encouraging a child's learning, growth, and achievement should be a part of the daily consciousness and activities of the household.
  
  
• Recognize that your behavior, as a family, may need to change. It may need to change because you have come from a different culture with societal expectations that place limitations on women's achievement and self-determination. Or perhaps change is indicated because you do not know, or have not considered, the options available to your daughter in today's society due to new education programs and work opportunities.
  
  
• Take a personal assessment. Identify the expectations you have, the assistance you routinely offer your daughter, and the motivation she has or is given to develop her capabilities. For example, if she is in a family with all female siblings, do you expect as much from your daughter with a disability? If she is in a family with male siblings, how are your expectations for her different? Families need to have the same expectations for their female and male children, and provide their daughters with the same opportunities they would give a male child with the same disabilities.
  
  

The following suggestions are limited by the great variety of disabilities to be addressed. Probably the most beneficial advice is to really assess your daughter's abilities, and examine your thoughts about what you expect of your other children and of her. Think of ways she can become a more integral and contributing member of the family.

Expectations. How much do you expect your daughter to do for herself? Take a look at your girl's day: Where can you expect her to do more for herself? Where can you expect her to do more within the household? Eve expects her daughter, Carol, who has a physical disability, to be a fully contributing member of the family. Duties and roles are assigned to 11 year-old Carol, with consideration of her disability, but neither the task nor the expectation that it be done each week or day, and done well, are any less than for Eve's other children, Eve strongly believes that the more you expect from your children, the more you'll get. Carol presently is responsible for vacuuming the downstairs carpet and upholstery; she can do this from her wheelchair. Carol is also responsible for dusting the downstairs furniture and, of course, for keeping her own room tidy. Carol cleans every Saturday morning with the rest of her family.

Assistance. How much assistance do you offer your daughter? To achieve greater independence, she has to do things without constant help, reminders, and suggestions. And she can do these things, although it may take longer and be more difficult than if you do it for her. Your daughter may even tell you so, as Felicia, age 10, told her mother. Felicia, severely disabled by cerebral palsy, but with no cognitive disabilities, struggled to extract a pair of "cool" sunglasses from the small purse she carried. She fended off her mother's attempts to assist her, saying, "Mommy, I can do it, I can do it." While it was painful for the mother to watch the effort and the time it took Felicia to unzip her purse and extract the prized glasses, the mother forced herself to let Felicia accomplish her goal without help. This small task is only part of the family's ongoing efforts to allow Felicia to develop independence. Among other things, they have provided her with a motorized wheelchair, customized to compensate for her particular difficulties, and a communication board, both of which Felicia has mastered.

Many caregivers speak of the pain of watching their child's laborious efforts to perform what, to most of society, are routine tasks. And while it is natural to want to step in and help, and to spare your child the struggle, it is often better to let her do the task in her own time and in her own way. Then the achievement is hers. So, look closely at the assistance you give, and decide when and how it can be faded over time. Parents too must let go at their own pace and in their own way; no one would say that letting go of any child is an easy task. It may involve taking risks that you find disquieting. One mother, Joan, told of her personal compromise in letting her daughter with mental retardation, age 15, ride the bus alone. Joan was afraid for her daughter's safety. After discussing her concerns, Joan and her daughter agreed that Joan would shadow her by following the bus in her car for the first month that her daughter rode solo. Joan observed the people who waited with her daughter at the bus stop, asking herself if any might be suspicious. She watched her daughter's interactions with the people and observed where her daughter sat on the bus. (Joan had told her daughter to sit directly behind the bus driver.) At home, Joan would discuss with her daughter "make believe" situations based on her observations. In this way, she could give her daughter suggestions on how to act, or what to do.

Roxanne, whose nine year old daughter has a learning disability, reported following her as she walked through a housing project alone to her after-school program. Roxanne hid behind trees and buildings so as not to be seen. She did this to assess her child's ability to make judgments in life situations, to avoid situations of potential danger, and to get to her destination without getting lost and in a timely manner.

Motivation. Your daughter may very well want no part of being self-sufficient. It's much more convenient to have you! So you need to develop a system of rewards, such as attention, praise, tokens, or permitting her to do something she likes once the task has been completed successfully. Focus on her positive behaviors and reinforce these.

Another vital component of independence is decision-making. How do parents teach this complex skill? First, consider how it feels when you are told what to do, instead of being allowed to act according to your own preferences and judgment. Also, ponder how you learned to make decisions and how you taught your nondisabled children to be good decision-makers. As much as possible, apply the same methods to your daughter with a disability.

The reasons we make decisions, of course, cover a spectrum of daily and life choices. Knowing when to put on a jacket is a decision that a child who is deaf will not long find difficult; it may be a much more complex decision for a child with severe disabilities to make. Much modeling and repetition may be necessary to help such a child learn to make decisions herself. Howard, whose five year old daughter has a number of severe disabilities, recounts the process by which he taught Jana to recognize when a jacket was needed, to get the jacket, and to put it on herself. "I would just do it myself, at first, getting her the jacket and putting it on her. Then I started telling her to get the jacket. Then, for a long time we worked methodically on her putting on the jacket by herself. After she could do that, I started saying, 'Gee, it's cold today. What do you need to put on, if you're going outside?' It took a long time before she knew the answer, but she was so proud of herself it was worth the time."

For children who have difficulty in learning to perform a task from beginning to end, you may need to break the task into its component parts and teach each part separately, Then, when your daughter can successfully perform each part, expect her to begin combining the parts. Foster her ability to make these decisions about sequence by asking her, "What's next?" Through your modeling and repetition, she will learn to ask herself "What's next?" Eventually she will be able to perform the task herself, from start to finish.

An essential part of good decision-making is self-awareness. Having insight into what your daughter's strengths and weaknesses are, given her disability and her motivation, will help you to help her in all facets of her life. Her ability, through your help, to assess herself: how she feels, what she believes about herself and others, what she wants in life provides a central point around which to make decisions. Realism, of course, is important in self-appraisal. You can foster your daughter's self-awareness and her ability to make honest self-appraisals by being honest yourself by allowing her to make decisions that require her to identify her preferences and desires, and by engaging her in conversations that lead her to examine herself. It is especially important that your daughter realize her strengths and learn to emphasize them. For example, Debbie, a mother of a six year old daughter with mild retardation, cranial disfigurement, and a speech impediment, replies to her daughter's statements of "I can't do that" by emphasizing what she can do. "Well, maybe now you do have a difficult time doing that, but let's look at what you could do," replies Debbie. Then Debbie proceeds to discuss with her daughter what she can do in that particular instance. Debbie believes it is most important to turn every "I can't" into a conversation of what "I can do."

Rita, whose teenage daughter, Beth, has a learning disability, often talks with her after school about how Beth's day has gone. At times, Rita's questions are quite probing: "Why did you do that?" "How did that make you feel?" "Are you sure you can't do that? Tell me why you think you can't." "Is it because you think you can't do it, or because you just don't want to?" Such questioning serves to make Beth examine her thoughts, feelings, beliefs, and capabilities. These discussions also confirm for Beth the importance and validity of her opinions and give both mother and daughter a greater awareness of what it means to, be Beth.

Another intrinsic part of decision-making is the ability to consider consequences (Clabby & Elias, 1986). Depending on your daughter's disability, this may be more or less difficult. Jose's daughter, who is eight and has been blind since birth, is easily frustrated and loses her temper frequently. When Paula has behaved badly at school, Jose reinforces the teacher's remarks to Paula by demonstrating the consequences of socially unacceptable behavior. Paula is not allowed to phone her friends or have anyone over after school. The consequence of poor behavior is social isolation. Gaye also discusses the consequences of decisions with her teenage daughter who uses a wheelchair. She doesn't tell her daughter what to do; rather, she asks her what options are available, what each option involves in terms of reward and consequence, and, perhaps most importantly, how she feels about each option (requiring that self-awareness discussed above). Based upon the factors involved, her daughter reaches her own decision. Through asking questions and exploring alternatives, Gaye models for her daughter an effective process for making decisions.

Sometimes, making decisions and acting upon them involves taking physical, emotional, or intellectual risks. For parents, allowing their much loved child to take risks is disquieting, even more so when that child is a daughter. "She might get hurt," "She can't protect herself," and "I can't stand to watch her try and fail," are reasons parents of girls commonly give for wanting their daughter to go slow, be careful, and hold back. The problem is, girls then learn to hold back and will "play it safe" in the kinds of decisions they make. This results in self-limiting thinking and behavior.

Teaching your daughter that it's okay to take risks may mean that you have to teach yourself as well, gritting your teeth and crossing your fingers as Roy did when his daughter, a seven year old with a hearing impairment, began negotiating their community alone. "I don't know who was more scared, Helen or me," Roy says. "But she really wanted to try on her own, and I knew it was the only way for her to learn. So l thought, 'Okay, Lord, watch over her.' " Roy laughs. "I have to admit that sometimes I still follow her, just to make sure she's okay." It is, never the less, important for parents to be honest about their concerns and to share them with their daughter. This will help you to confront your concerns and to develop trust in your relationship with your daughter.

Maria, whose 18 year old daughter has a physical disability, with speech and visual problems, needed to come home from a job-site by public transportation. The first day, as the family anxiously awaited her return, she did not. The police were finally called, but Leticia returned home on her own as the police reached the house. As it turned out, Leticia had missed her stop, even though her parents had traveled the route with her beforehand, and had to negotiate her way back on her own. The family was quite upset and Maria's first impulse was to say never again, but Tony, her husband, pointed out how very well Leticia had done on her own; she had shown that she could independently negotiate her way home, which, after all, was the point.

Teaching that it's okay to take a risk involves teaching that it's okay to try and fail. In fact in learning a new skill, even the most adept person generally has many failures on the road to mastery. This is an important message to give your daughter. Understanding that learning may involve repeated attempts to do something before one is successful places initial failures in their proper context and illustrates that immediate success is not essential, but the willingness to try and try again is.

Encourage your daughter to try new things, even if this means she has to struggle and swallow initial failure. Be understanding, too, if she shows a range of emotional reactions. We all have felt the fear, frustration, anger, and occasional despair that can accompany trying something new and difficult. Your daughter is as entitled to these human reactions as any other person. Praise her attempts and honor the courage it takes her to keep on trying. Your encouragement will be a powerful validation of her effort and will reinforce the message that only in striving do we achieve.

In short, whether the decision is a small one, such as what to wear or what to eat, or a far-reaching one, such as what career track to follow, encourage your daughter to identify her preferences and act upon them, even if this means taking a chance and risking failure. In this way, she develops her sense of self and the ability to take action that expresses that self. The skills of decision-making are learned in many ways: modeling, discussion, risk-taking, consideration of consequence, and practice. The more decisions you allow her to make, the better equipped she will be to determine her own way in the world outside your home.