Sticks and Stones

 

Parenting a Child with a Facial Difference

Many kids get ridiculed just for wearing glasses or being chubby. For a child with a significant facial difference, often the torment they endure from their peers is devastating.
On the other hand, some kids with dramatic bodily differences escape social ridicule. Why is this? And what can parents do to ensure that their child succeeds socially?

Not too long ago, a popular television talk show featured a panel of child guests with facial or bodily differences and their mothers. Here we go again, I thought, and made a prediction: The child who cried the most would have the mother who cried the most — and the MOTHER would initiate the crying. And the child with the highest self-confidence would have the mother who cried the least — if she cried at all.

Sure enough, not only did the child with the greatest resilience have the most level-headed mother, but this girl had the most dramatic physical deviations of all the guests: At 17, she was barely over three feet tall, and her face and arms were significantly scarred from burns she survived at a very young age.

She held her head high, laughed, and talked about her boyfriends. Before she came on stage, her proud, upbeat mother didn’t shed a single tear as she talked about the fire that had melted off her daughter’s skin.

The girl who cried the most, 11 years old, had a disfigured hand from an accident. She cried buckets. Her sobbing usually arose AFTER her mother became unhinged. The bawling mother just couldn’t get herself together as she described the years-old accident and her daughter’s “suffering.”

The daughter witnessed the one woman who should have been her pillar of strength dissolve into helplessness. As the scene unfolded, the roles began reversing: The 11 year old, tears streaming down her face, was becoming her mother’s mother, as she clutched the woman’s arms and attempted to console her!

The host asked the girl, “What makes you the saddest? Your hand?”

Through gobs of tears, the girl shook her head and said, “When my mom gets this way.” Imagine how defective that girl must have felt. Kids have an amazing capacity to internalize the way their parents feel about them.

Though talk shows usually choose guests who can evoke the most pity from viewers, it’s a fact that many parents — though meaning well — fail to instill in their kids an internal fuel source of high self-worth — the best deterrent to ridicule.

“Sadly, some parents seem unable to move past their own emotional pain; they end up training the child to feel responsible for the parents’ emotional health,” says Marjann Fletcher, a licensed psychologist and certified professional counsellor in Phoenix, Arizona, who has counselled many parents of kids with disabilities.

“Often, this phenomenon blocks the child from developing a self-image of being a lovable, acceptable human being.” All the hugs in the world from Mom won’t undo this phenomenon.

Fletcher, who is board vice president of the Arizona Bridge to Independent Living (ABIL), which provides services to people with disabilities, also points out that, “according to research on attitudes about disabilities facial disfigurement and skin conditions are the hardest conditions for so-called able-bodied people to accept in others.”

When Mom Keeps Cool, Child Keeps Cool
A stranger at a store once asked Kathy Hubbard of Fairfax, Vermont, if the dog that bit her young daughter’s face had been put to sleep.

Lizzie, only eight and a half years old, told the woman she had tumours.

“Lizzie was happy to tell her about her condition,” says Hubbard. “We talked about it in the car afterwards. She felt fine.” Hubbard was not stricken with grief over the incident. Nor did she lash out at the stranger. To do so would have sent a message to Lizzie that she was flawed. Hubbard kept her cool and, therefore, so did her daughter.

Fletcher says, “The way the parent handles it will teach the child how to perceive himself or herself, and what to do or not do in future encounters. A matter-of-fact but truthful answer usually will suffice. For example, ’I understand you’re curious. She got burned. She is doing well now. Will you excuse us — we’re on a tight schedule today.’ What is not helpful is to model behaviour that is as rude as the other person’s — for example, ’It’s none of your blankety-blank business.’”

A more forward response toward the stranger is suggested by Carleton Kendrick of Medfield, Massachusetts, resident family therapist for Familyeducation.com and a licensed certified social worker: “Bite your tongue, take a deep breath and offer a brief explanation, followed by a statement like, ’Perhaps you might consider a parent’s and child’s feelings a bit more before you assault someone else with a question like that again. I’m surprised you believe it’s your prerogative to ask me that question.’”

Fletcher suggests a follow-up chat about such public incidents at home. “But take care not to blow the incident out of proportion by making more conversation out of it than the child is ready for. Don’t push it, as the child may not see the incident as a big deal.”

Don’t ever ignore your child’s reaction to any public incidents involving strangers’ questions, says Kendrick. Children typically gaze up at their parents to size up their reaction to the stranger. It’s not smart to go on as though nothing happened. The youth needs appropriate feedback to enable her to process the situation in a healthy way.

Kendrick says the parent should ask the child what she thought of the incident and how it made her feel. Follow up with a caring — but not pitying — discussion.

Lizzie was born with neurofibromatosis Type 1, causing her face to be very swollen. “We don’t treat her any differently than any other child would be treated,” says Hubbard. “The left side of her lip is swollen-looking. She is adamant she does not want it fixed. She likes it that way. ’It’s what makes me me.’ I’m really proud of her!”

Hubbard’s attitude will surely impact how Lizzie carries herself in the years to come. “Of course, we went through the grief stages,” continues Hubbard. “But I think they passed fairly quickly. Not a lot of crying. I talk with anyone who asks, as does Lizzie. If I was upset about it at all, it would rub off on her, and she would not feel as good about herself. Nothing has been hidden from her.”

Names Do Hurt
Sometimes, a facial deviation can be so dramatic, there will always be ridicule. Stephen Wright of California’s bay area was born with Crouzon’s syndrome, a craniofacial anomaly characterized by excessively bulging eyes spaced far apart and an underdeveloped facial structure. The taunting at school was so intense that Wright “went through extreme anxiety attacks,” he says.

Kendrick says to parents, “I would not invoke the old adage, ’Sticks and stones may break my bones but names will never hurt me.’ Teasing and name-calling DO hurt, and asking a child to ignore the humiliating words is an unrealistic and unfair expectation.”

Telling your grade-schooler or teenager, “Oh, just ignore them! They’re immature and don’t know better!” is as worthless as someone telling YOU to “just ignore” a big-mouthed clod at your office who makes degrading remarks about your religious faith, culture or gender. Yes, just try to ignore it eight hours a day!

Also not very effective is explaining to your son or daughter the psychosocial dynamics behind why some kids are compelled to make fun of others. Sure, you can tell your eight year old or 14 year old that those cruel kids at school don’t get enough loving attention at home, so they take out their pain on someone who looks different. But don’t rely on this tactic to ease much of your child’s suffering. He still must face those kids daily! And surely your child has to wonder why those kids — especially if they are popular — choose to single him out!

Imagine a group of people at your workplace pelting you with jeering remarks on a daily basis about your weight, your receding hairline, the varicose veins in your legs, your big nose, or some other imperfection about your body. You just can’t ignore it.

Something must be done to minimize the ridicule, and that all begins with that internal fuel source of self-confidence — it must be stoked!

Ways to Bolster Self-Worth and Tame Ridicule
So what can a parent do? A good start, says Kendrick, would be to “talk with your child about how there will always be those who make fun of people because they look, talk, dress and behave differently than they do.” No child is too young to hear this if he is experiencing ridicule. Speak in a calm voice, not an impatient or irritated one; tone of voice is as important as the words you choose.

But, as mentioned previously, a parent must go beyond merely explaining to his child that some kids are just plain mean. Explanations need supplementation.

Within your budget, let your child choose a complete wardrobe. Let her wear her hair as she pleases, within reasonable parameters. Allow her to get her ears pierced, nails manicured or hair tinted or elaborately braided. These are elements of physical appearance that kids can have jurisdiction over, and thus they can feel less self-conscious about something beyond their control.

A girl with burn scars on her face, for instance, will be better able to withstand cruel remarks, if — along with those nasty remarks — comes an occasional compliment on her jewellery or hairstyle. “Cool outfit!” can easily smother the scorch of several mean comments.

“My parents insisted that I attend school with other children,” says Wright, author of several articles on craniofacial issues for “Parade” magazine. “They insisted I learn how to ride the bus [to middle school].” Wright’s parents refused to shield him from the world.

But he also points out: “They always used the fact that once I was an adult, looks would not matter, and therefore it was only temporary and I just needed to get through childhood! I found this to be very untrue.”

The fact is, physical appearance matters quite considerably in the adult world. Also, the child’s mind is unable to grasp the future; kids live in the present. Though they grow up very quickly before your eyes, in a child’s mind, a month of taunting at school seems like an eternity.

Just as you are protected by laws against workplace racial or gender slamming, your kids should be protected from schoolyard bullying and harassment. “Meet with the school’s principal and counselling staff,” says Kendrick. The Canadian Charter of Rights and Freedoms guarantees children the right to be educated in a harassment-free setting.

Yanking your kid out of school to home-school him or enroll him in a new school won’t teach him social survival skills; this teaches him only to run from problems. This can impair his ability to face obstacles as an adult.

Wright, who underwent 23 surgeries by age 19, gives this advice: “Teach your child life skills. Perhaps the children could be encouraged to participate in sports or be involved with the school music program. I played saxophone for seven years in middle and high school, and many of my friends were involved in music. I also ran cross-country and track. I was very involved in Boy Scouts.”

Had Wright not been involved in these activities, perhaps he never would have developed the self-assurance that got him voted into student government during high school. He is currently finishing his master’s program in business at San Francisco State University.

“I attribute a lot of my accomplishments to having those fundamental steps being established in my childhood,” he says. Today, Wright’s appearance is pretty near typical for a 30-year-old (after complete reconstruction at age 19). “An overreactive parent can hinder the child’s ability to cope,” he adds. “Sometimes it seems the parents are more distraught over the child’s condition than the child.”

If you are not comfortable about the idea of signing your shy boy or girl up on a sports team, then consider individual sports, such as youth mountaineering adventures, indoor wall climbing, archery, golf, dancing, swimming, wrestling, tennis, running, martial arts and weightlifting. Popularity with other kids has no bearing on success in these sports.

Teenagers can be encouraged to join a health club or local recreational centre’s fitness classes (body sculpting, kickboxing, aerobics, yoga). Building a stronger, more physically fit body (relative to any physical disabilities) helps those facial deviations seem less significant.

“The important factor is for the child to feel capable and competent and gain a sense of belonging,” says Fletcher. Some kids will enjoy team activities, while others will thrive on solo activities such as writing, art or raising pets. “Parents have the opportunity to spend time with their child and expose him or her to sports and other activities, so they and the child can learn his or her interests and strengths.”

Kendrick says, “Involving kids in anything they show talent in will undoubtedly boost their morale and lift their spirit.” It’s up to the parent to scavenge the environment for the activity that will bring out the best in the child.

Don’t just stop at football, basketball, baseball, soccer or the school drama club if those don’t pan out. Introduce your son or daughter to ping-pong, roller-blading, bike racing, horseback riding, the local youth chess club, horticulture, even juggling.

Volunteer work is another option. Kendrick says, “This will afford them a chance to put their facial problems into a broader perspective, and give them more of a sense of self-worth at the same time.”

She Proudly Shows off Her Daughter in Public
Eight-year-old Elizabeth Sears, nicknamed “Teeter,” has Apert’s syndrome, a craniofacial birth condition characterized by a very distinct facial appearance.

Some parents become distressed whenever they must take their facially different child out into the community. Teeter’s mother, Cathie Sears, says, “I am very proud of her and show her off everywhere we go. She is the best thing that ever happened to us. I love taking her out in public.”

And maybe this is why Teeter doesn’t realize she’s different. Sears says, “We feel honoured to have a child like Teeter. I think having a ’typical’ child would be so boring after seeing the joy Teeter has brought to all the lives around her. I couldn’t imagine life without her. My friends with normal kids are missing out.”

Sears is apparently immune from rude questions from strangers, perhaps because when people stare, she and Teeter smile back. When Teeter asks her mother why people are staring, Sears replies, “Because you are so beautiful and cute.” Then she changes the subject.

Teeter’s classmates do not make fun of her. Always cheerful, she reaches out to people, rather than waiting for them to come to her. She enjoys making people laugh, and has no idea how to hang her head and feel sorry for herself.

Sears says, “If she saw me crying for her, then it would make her think it [her face] was something to worry about. Children are very attuned to their parents’ emotions. She was born like this and I accept it.” (Apert’s Syndrome includes some physical conditions such as fused fingers and toes.)

When Teeter inevitably begins asking questions about her syndrome, Sears intends to provide truthful answers. “Hopefully, with her self-esteem and support of her family and friends, she will think it’s cool to be different, just like I do!” Until then, Sears believes Teeter doesn’t need to know she is different. “I want her to just be a kid for as long as she can. I don’t want her to worry about anything, other than when’s the next time she’s getting a new toy!”

Teeter has been taught to be very polite, routinely saying “Please,” “May I have ” and “Thank you.” Sears adds, “There are so many times after dinner that she thanks me for a wonderful meal, even if it’s just hamburgers. She really loves her teachers and tells them, ’I love you.’ She always asks her grandparents on both sides if they are feeling okay. She is very well behaved in public and smiles and says hi to everyone.”

Teeter attracts more attention with what comes from inside than what’s on the outside.

If You’re Resilient, Your Child Will Be, Too
There was a pretty girl on that talk show who had a one-inch-long scar on her forehead. In tears, she said classmates called her “Frankenstein.” But they didn’t make fun of her because of her scar. They made fun of her scar because of HER. In fact, many of the bleak-faced kids on the show who claimed torment at school had only mild deviations.

It seems as though some kids are born to ridicule others, and they are masters at spotting kids who lack that internal furnace. And if the head-hanging kids just happen to look different — be it minor or dramatic — the bullies will zoom in on the difference.

But differing physical traits are not the cause of excessive ridicule and harassment; lack of self-appreciation is. (An exception might be a child who has, literally, a breathtaking physical deviation). Telling your dejected child, “But, honey, you are so beautiful!” does not address the problem. Even the most physically perfect kid can be the object of intense ridicule.

If your child is taunted at school, you must probe much deeper than his or her physical appearance; you must begin bone-deep. Spend more quality time just hanging out with her, enjoying her company playing Scrabble, baking goodies, visiting the ballpark, museum or planetarium — without feeling sorry for her!

Put all your tears, fears and pity in a safe, lock it up bolt-tight, throw out the key, then bury the safe deep. This is the best thing you can do for your child who looks different.

(Lorra Garrick is a freelance writer living in Denver, Colorado.)

RESOURCES

AboutFace
A support and information network concerned with facial difference.
Toll-free: 1-800-665-FACE
E-mail: info@aboutfaceinternational.org
Website: www.aboutface.ca

Canadian Organization for Rare Disorders
Toll-free: 1-877-302-7273
E-mail: office@cord.ca
Website: www.cord.ca

Canadian Burn Survivors Association
E-mail: cburnsa@hotmail.com
Website: www.canadianburnsurvivors.org

Teeter Sears’s Page
Website: www.apert.org

 

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