Children with Facial Difference: A Parents' Guide by Hope Charkins

Library Journal

Woodbine House gives us another excellent volume in their "Special Needs Collection." Charkins, a social worker with the Vermont Division for Children with Special Health Care Needs and the parent of a child with facial difference, is a cofounder of the Treacher Collins Foundation. Covering medical, educational, legal, and social issues, as well as aspects of family life and self-esteem, she brings both technical and personal experience to this much-needed text on abnormalities of the bones and tissues of the head and neck. While much of the information on cleft lip and cleft palate can be readily found elsewhere, the information in lay terms on such conditions as Treacher Collins, Apert, and Crouzon fills a huge void. The chapters follow a format common to the series and, like other volumes, offers contributing editors who represent some of the best in the field. Recommended for all special-needs collections.KellyJo Houtz Griffin, Northwest Hosp., Auburn, Wash.

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• Table of Contents
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Table of Contents

Read an Excerpt

Building Your Child's Self-Esteem
At a very early age, your child will sense your attitude toward her appearance and the special issues involved in raising her. Her attitude toward her facial differences and herself will therefore reflect your abilities to cope with her appearance, any other physical differences she has, and the reconstructive surgical concerns, The first step, then, in building your child's self-esteem is to ensure that you don't inadvertently convey any negative attitudes about her condition. Chapter 2 should help guide you to the beginnings of acceptance of your child's facial differences. If you are finding the road to acceptance especially rocky, you may also want to follow the suggestions in the section " When to Seek Professional Help," below.

Just as there are many methods you can use to cope with feelings about your child's condition, there are also many methods she can use. If your child is old enough, she may have figured our some of these methods herself. Many children with facial differences do. Since some of these methods are more effective than others, however, it is important for you to determine which methods, if any your child is using. If necessary, you can then guide her to a more effective coping manner. The following sections review the most common methods used by children with facial differences.

EFFECTIVE AND INEFFECTIVE COPING STRATEGIES

Denial
Denial is the most common coping method used by children with facial differences. They may rate their appearances as less severe and more pleasing than a professional would. Although this is a form of denial, it is not an unhealthy denial. Is allows a child to acknowledge that she does have a differences, but keep it in perspective so that all of her energy is not concentrated on that one aspect of her life.

A good way to learn whether your child uses healthy or unhealthy forms of denial is to observe how she perceives her facial differences. Does she focus on her appearance as a reason for why she can't do things (unhealthy), or focus only on what she wants to do or participate in (healthy)?

Generally, children start noticing differences at around age five or six. They may notice that some part of their face looks different from that of others. Their awareness may be that the other person's face looks different ! Or, they may realize that their face looks different.

As your child gets older and starts understanding more, she will undoubtedly wonder why she needs to see so many medical professionals. There must truly be something wrong! At this point, it would not be helpful for you to deny your child's condition. Instead, either you, medical professionals, or both need to put the condition in perspective for your child. In this type of discussion, you need to emphasize your child's strengths and abilities, while realistically explaining her physical differences. Your child should be told the truth, but in a way that will still allow her to feel good about herself. If your child thinks of herself as a "freak," she may not want to participate socially; if she takes it in stride, social interactions should be easier.

You can expect the subject of your child's differences to come up many times over the course of her childhood. You and your child may need to re-visit certain topics many times. As your child matures and experiences life, she will probably want and request increasingly sophisticated information and support from you. Over the months and years, you will need to use trial and error to find out what approach to answering questions and dealing with concerns works best for your child. Your long-range goals should be to help your child understand that facial differences does not define the person.

Anger
Some children openly express their anger at having been born with facial difference, and others hold their anger inside in the form of depression or withdrawal. If your child is angry because of her facial differences, her anger needs to be dealt with, regardless of how she expresses it.

If your child is often angry, don't immediately assume it is because of her facial difference. Start by asking "why": "I notice you seem to be mad a lot. I saw you hit your brother yesterday for no reason. Why do you think you're mad so much? It doesn't seem like you can have much fun if you're mad all the time."

If your child indicates that her anger is related to her facial difference, or you deduce that it is, it is time to talk with your child. The psychologist or another professional on the craniofacial team who provides emotional support can prepare you for this discussion, or sit in on the discussion. You can start by asking your child how things are for her at school, with sports, etc. When the focus of the discussion comes to her facial differences and her anger, it is important to try to understand why she feels as she does. Unless you as a parent have a facial difference, you are not going to truly know what your child is feeling. However, you can validate her feelings and clear up any misunderstanding she may have.

The issue of fairness will often enter into the discussion. Your child may say something like "It's not fair that I was born with little ears and I have to have all these operations." You can validate the unfairness of the situation while trying to help your child see things in a more positive light: "Yes , you're right-it's not fair. I'm sorry that you were born with little ears. But youwere born with strong legs, you can read, and you can make beautiful art projects. And, Dr. Jones is going to make ears that are just right for you." Of course, this may not be the end of the discussion, as your child may come back with something like, "But now I have to go to the hospital and have operations. It'll hurt." Your discussion could continue on like this, jumping from one topic to another that is making your child anxious (depending on her age and willingness to communicate). This discussion may need to occur many times over before your child is ready to focus on something besides the unfairness of it all. At the end, however, you will have a better insight into the roots of your child's anger.

If your child won't talk with you, is a threat to herself or others, or is out of control, professional counseling may be the safest option. If so, you should be willing to take part in it as well. You may have something to do with your child's anger-perhaps by being overprotective and holding her back because of your fears. If so, you need to know, so you can work on being on being more helpful to your child.

It may take a while, but at some point your child will feel more accepting of herself as a person with a facial difference. Ideally, she will learn to think of herself as a child like any other child who just so happens to have a facial differences. Remember, however, that it is not easy for any child to develop good self-esteem, and there are plenty of challenges along the way.

Discovering Talents and Abilities
Another way of coping is for a child to excel in an activity, such as a sport, drama, music, computer games, or academics. She is then recognized-at least in part-for her abilities, rather than her facial appearance. If your child doesn't find activities she enjoys on her own, provide her with opportunities to discover and develop her skills. Obtain a listing of activities and classes that are available in your community. Then let your child choose several that she might enjoy and which fit comfortably into your schedule. If your child is preschool age, you might want to take the lead in choosing, and in the beginning select "mom and me" classes so that you and your child can attend together. If your child is older, it is important not to convey any fears you have about activities she chooses. For example, a child with a hearing aid can play contact sports, and so can a child who has finished outer ear reconstruction. A child with a repaired cleft lip can sing in a choir or act in a play. A child with hand anomalies can take dancing lessons.

Like any child, your child may decide that she really doesn't like an activity after she tries it. Some children may find that they don't enjoy an activity if they don't seem to have any natural abilities in it, or if it is too difficult for them. In any case, you should never force your child to try or continue an activity that she doesn't like.

Group activities will provide your child with opportunities for socialization. These opportunities may include children (and parents) that you and your child don't already know. As your child grows older, she may want to avoid these situations if she has had negative experiences with strangers. It is important for you to encourage your child to pursue activities that she enjoys and to provide the support and encouragement she needs to feel comfortable with the social side of these activities. This might mean that you will need to educate the adult in charge, your child's peers, and possibly their parents. In addition, you need to educate your child and supply her with a range of answers for questions and comments, so that she feels comfortable when you're not there (See "Responding to Adults Reactions" and "Responding to Children's Reactions" later in the chapter.)

Although it might seem easiest to give your child private lessons for her interests, this would deny her "her place" in community activities such as girl scouts, theater productions. etc. Sometimes, however, private classes or activities in your neighborhood may seem like the best option or a good place to start. You and your child will know when it is time to move to activities outside of the safety of your home or neighborhood. Sometimes both parent and child need to gain confidence before venturing into typical childhood activities.

As your child participates in activities with her peers and becomes known to them, she will be better accepted in her community and in the places where she spends much of her time, such as at school. Identifying activities that make her feel proud, talented, and capable will therefore keep her in the mainstream of life where she belongs, and will help her focus on her abilities rather than on her differences.

Educating Peers
The more your child's peers understand about her facial difference, her experiences (such as surgery), and any assistive technology such as hearing aids, the more likely they are to accept her. In some families, a parent accompanies the child to school at the beginning of every school year to help educate classmates. With the help of the child and teacher, the parent talks to the class about the child's differences, similarities, and assistive devices.

If you choose to educate peers, your child should ideally be present and participate in some way. Take care that she feels comfortable with what is being said and proud of who she is. Use simple language and focus on information about your child that will increase her acceptance by peers.

Looking at Differences Objectively
Another method of coping is for your child to be able to step outside herself-that is, to create a comfortable emotional distance between herself and her condition. This allows your child to talk about her differences in an "objective," rather than overly emotional way.

If your child is unable to be objective, she might refuse to talk about her facial difference, or talk about it only with an outpouring of tears, shame, or other emotions. Being able to objectify is something children generally learn over time for themselves. It helps, though, if parents can model this behavior. If parents are usually low-key about their child's facial difference, the child will probably also learn to be low-key.

Social Skills
Your child should not have to feel like a victim of facial difference, or be ashamed to show her face. She will need to learn how to rebound from being teased or stared at and still maintain her sense of integrity and humor in social situations. Supporting her and helping her learn to recognize her strengths, as described under "Discovering Talents and Abilities" will help. But your child must also have a repertoire of social responses available to her so that she feels secure and proud of who she is. She should know how and whether to respond to hostile, curious, and ignorant questions from both children and adults. The section on "Community Life" later in the chapter offers guidance on this important subject.

Making Choices/Taking Risks
Another important key to building self-esteem is allowing your child to make choices and take risks and then learn from her mistakes. Any child who is overprotected and not allowed to do things for herself gets the message that she isn't capable of doing these things.

Although you may think you are doing your child a favor by shielding her from staring or the like, this can actually do more harm than good in the long run. You will not always be there to protect your child. Therefore, she needs to learn how to handle situations on her own. She has a right to do and be anything anybody else does-to walk to the grocery store by herself, to play in a soccer league, to shovel neighbors' walks to earn some pocket money, to act in a school play, but she needs the confidence to follow through with the "doing" and "being." It is largely up to you to give her this confidence by letting her see your confidence in her.

Reconstructive Plastic Surgery
Some parents and their children look upon reconstructive plastic surgery as the miracle that will "take away" the child's facial differences. Reconstructive plastic surgery is certainly a scientific miracle. It will not however, take away your child's condition. It is only one part, albeit an important part, to the enhancement of self-esteem in your child.

Although operations may make a difference in your child's appearance and how she feels about herself, it "does not guarantee a 'new' or normal face, but rather a transformation from less presentable to more presentable" (1990,p.256). As a parent, you need to understand and anticipate, and help your child understand and anticipate, that there are realistic limits to plastic surgery. These limits include how much of a physical difference the surgeries can make in your child's appearance, and at what point surgery may no longer be possible or make a difference.

There are several ways to help your child understand what to expect from surgery, as you and your child discuss an operation with the surgeon and craniofacial team, ask them to give you an idea of what to expect. Looking at before and after photos of other children will help you and your child know what to expect, but bear in mind that surgeons always show photos of their most successful surgeries! In addition each child is unique-is affected to a different degree and may respond differently to surgeries. Again, be prepared to discuss any and all issues related to upcoming operations as many times as your child needs. As a parent, it is your job to understand what the surgeon is really saying if he says something like "This surgery will make her appearance more acceptable, but she won't look like a fashion model." Then you must explain your understanding of things to your child. The team psychologist can help you understand and share this knowledge with your child.

Some parents go "surgeon hopping" to find the one who will offer the best prognosis. This is dangerous. Although a second or third opinion is always a good idea, you should be cautions about any surgeon who offers miracles-especially instantly. At the point when surgery may no longer be possible or make a difference, you need to help your child understand that things may change in the future. New technology and surgical techniques are always being developed , so it is possible that what is impossible today may be possible in ten years. You should never let your child feel as if she is at the end of the road-there should always be a glimmer of hope.

Sometimes parents are reluctant for their child to have surgeries that would only enhance her appearance, not improve how she functions. They may feel that they are losing the child they love by changing her appearance. Or they may not feel that their child has any significant facial differences, and is accepted 100 percent by everyone. Or they may not want their child to miss more school for surgeries. Or they feel as if the surgeon views their child as an experiment on which to try out what he's been reading in journals or learning at conferences.

While it is always important to include your child when planning surgeries, in this situation it is especially important. Your interest in surgeries for your child needs to mesh with your child's desires. Listen to what she says about what pleases her or bothers her appearance. Then try to reconcile it with what the reconstructive plastic surgeon and psychologist say about your child's need for surgeries and the importance of enhancing her physical appearance.