Parents often struggle to find the right way to help their shy child with a neuromuscular disease
Parents often struggle to find the right way to help their shy child with a neuromuscular disease
James — a hypothetical boy — is 14 and has Duchenne muscular dystrophy (DMD). James has always been a little reserved around strangers, but over the past several years — especially since he lost the ability to feed himself — he has become increasingly resistant about going out in public, to the point that his mother practically has to beg him to go to a movie.
He refuses to attend MDA summer camp (never has gone), won't participate in school activities and has no friends outside of immediate family members.
At home, James likes to play video and computer games and watch sports on TV. His only social outings are to occasional sporting events. On the whole, James appears to be quite content in the little cocoon he's created for himself.
His parents, however, feel concerned and confused about the situation. On the one hand, they rationalize that if James is happy, shouldn't they be happy, too? After all, James has little control over most areas of his life. Whenever possible, shouldn't he be able to do what makes him happy and avoid things he doesn't like?
On the other hand, James' parents have always wanted to make his life "as normal as possible." Doesn't "normal" include having at least one outside friend? Isn't there value in taking risks and creating a life separate from that of your parents?
James' mother wonders if she should force him to join a school club or go to MDA summer camp, but she's somewhat resigned to leaving things alone. "This is what he wants," she sighs.
James may be made up, but his situation isn't. Parents of shy children with neuromuscular diseases frequently struggle with the same question: To push or not to push?
American society has a preference for extroverts: people who enjoy the external world of things, people and activities. In a culture in which 75 percent of the population tests out as extroverted on personality tests, there is a certain wariness toward the 25 percent who are introverts: people who prefer the internal world of thoughts and feelings. Is there something wrong with these people?
Of course not. Almost everybody feels shy and wants to withdraw from the world sometimes. And for some people, such as 12-year-old Jessica Hollinger, being reserved around new people and social situations is simply part of their natural dispositions.
Jessica has "always been shy around strangers," recalls her mother, Evelyn, of Leroy, N.Y. "After she sees an individual for a while she starts to open up but it takes quite a while. Usually when people come over, she sticks close to Mom and won't talk."
An only child and one of the rare girls with DMD, Jessica doesn't get together with any friends outside of school. She's happy hanging out with her mom, grandparents, Nintendo, computer games, TV and hobbies, and has never gone to MDA summer camp.
"I tried to talk to her about it, but she doesn't want to be far away from me," Evelyn says.
Evelyn isn't worried about her daughter's shyness.
"I believe this is a good situation. She's happy in what she does. We go out shopping and to dinner, and we've gone to Disney World twice. It's not a problem."
Shyness and neuromuscular disease
The problem begins when parents fear that their child's introversion has gone too far and is negatively affecting his or her life.
Besides having a natural disposition, there are a variety of reasons why a child might act shy and withdrawn, from being nervous in a new situation to being the victim of abuse. Some children lack good social skills for making and keeping friends. In extreme cases, a child might have social anxiety disorder (SAD), a psychological disorder.
The conditions around having a neuromuscular disease also can cause reclusive behavior in children who aren't naturally reserved — and aggravate it in those who are.
Children may feel alienated and shy around their classmates as a result of frequent absences from school. They may fear taking risks, or they may have lacked opportunities to mix with peers.
When children have learning disabilities or attention deficit disorder (a potential effect of some neuromuscular diseases), they often can have more trouble making friends, resulting in social isolation.
Being teased or bullied is another big factor that can cause a child to withdraw. Thirteen-year-old Tim, who has Becker muscular dystrophy, endures endless harassment during gym class because he can't keep up with the others. A bright kid who has difficulty verbalizing his thoughts, Tim has few friends and a lot of anger.
"He has his days when he doesn't want to be with anybody. He just wants to be left alone," says Sherry, his great-aunt and guardian. (Sherry asked that only first names be used in this article.) The family and local MDA health care services coordinator are working with the school to reduce the teasing, andTim's therapists are helping him develop coping strategies.
The 'coddled child'
As contradictory as it may seem, another possible cause of social isolation in children with neuromuscular diseases is coddling — parental overindulgence and weak discipline. Parents who are coping with their own grief and guilt sometimes inadvertently fall into this trap.
"Children who are coddled are given the message (totally unintentionally) that they are the center of the universe and everyone should revolve around them. Not a great way to make friends," observes Joan Fleitas, an associate professor of nursing at Fairfield University in Fairfield, Conn., and founder of Band-aides and Blackboards, a Web site for chronically ill children who go to school.
Discipline means setting and enforcing a consistent set of rules and expectations for your child, and is an essential part of making a child's life "as normal as possible," says Arden Peters, a psychologist who runs MDA family support groups in Wichita, Kan.
"Good, loving discipline is vital to the development of self-esteem and self-confidence, and having courage and stamina in the face of hardship. The child learns behavior that helps them be accepted by others."
Coddling produces kids who are "self-centered and demanding, who don't have good boundaries and who tend to feel a little unsettled and insecure," Peters says. "They don't have good fortitude in facing other hardships."
When children cling excessively to their parents, Peters again blames well-intentioned permissiveness.
"Usually, the child has been given more control in their life than is good for them. The parents haven't expected as much from them as they are capable of doing. Mom or Dad needs to say: ‘This isn't a choice. You are going.'"
Children with neuromuscular diseases may also feel embarrassed about being different — being slow, using a wheelchair, wearing leg braces, needing help in the bathroom, etc. They can be especially sensitive during adolescence, when embarrassment can lead to avoiding social contact.
Brian Miller of Union, Ky., doesn't consider himself either shy or introverted, but his mom, Sharon, believes otherwise.
"Hard-headed, stubborn and somewhat of an introvert" is how she lovingly describes her 19-year-old son, who has DMD. When Brian became a virtual recluse in his early teens, Sharon and her husband, Jim, grew concerned.
"For several years he refused to go out of the house, only to school. He refused to go to any family functions," she recounts. "I believe it was because most places were not handicap-accessible and much commotion had to be made just to get into someone's home or a restaurant. He didn't, and still doesn't, like the attention he draws in such situations.
"Body image has been a huge issue with Brian. He is very self-conscious about the way he looks and the way he looks in his wheelchair. He refused to allow the doctors to modify his wheelchair for fear that it wouldn't look ‘cool.'"
Sharon felt that Brian's isolation was unhealthy and indicated an excessive self-consciousness. "I believe he amplifies the way he perceives that others see him," she explains. In addition, his refusal to participate wasn't fair to the rest of the family, who had to leave someone home with Brian while the others went out.
About this time, a few of his high school teachers encouraged Brian to become part of the football and basketball teams as a manager. Brian didn't want to try it, but Sharon insisted.
"We had to force the issue," she says. "We just made him go to the games and practices. We took him down on the field, and once he did it a few times he liked it."
This experience helped other students see Brian in a new light, and he began to make friends and participate in dances, games and extracurricular activities.
"It seemed like the kids weren't so cruel after they got to know Brian better," Sharon says. "It helped pull him out of his shell. He has become quite a different person socially because of the involvement he finally accepted at school."
Looking back, Sharon wishes she'd done some things differently. Although initially it seemed easier to let Brian stay home than to struggle with accommodations and his attitude, now she says, "I would push him a little harder to participate in family functions and school activities. You just live day to day with this disease, and at the time we just didn't realize what a problem it would become."
Determine the cause
How can a parent of a shy or isolated child tell when it's wise to push, when to gently tweak and when to leave well enough alone?
First of all, try to determine the cause of the reclusive behavior.
"If it is due to the child's natural disposition, you can't change that," Arden Peters says. "Instead, you can help the child learn how to compensate."
Working together with the school, parents can teach the child appropriate responses to different social situations, set up nonthreatening interactions and reward every risk their son or daughter takes, no matter how small. (This is also valuable for children with learning disabilities who lack intuitive social skills.) See "Tips for Making Friends" section below.
"But don't go too strongly against their nature," Peters advises. "There are a lot of shy people who are very happy and well adjusted. You need to determine if your son or daughter is suffering in some way or if they are basically OK. Parents should relax if they think their child is happy."
But what if the child isn't happy?
"Severe shyness and withdrawal can indicate other problems, such as lack of self-confidence and self-esteem, or even an abuse situation," says Mara Rubio, a therapist and clinical social worker in El Paso, Texas, who leads MDA parent support groups. "It may indicate an issue where the kid is struggling to fit in or there might be some teasing going on."
Communication is key in these circumstances. Listen to the child, don't talk at him, Rubio recommends. Resist the urge to try to fix all the child's problems with criticism and advice. Instead, during a quiet moment, throw out a question and give your child room to respond: "So how are things going during recess? What's up with your friends these days?"
Find out what the child wishes would happen in these situations, even if he says he doesn't care.
If all your questions are met with grunts and "I dunno's," at least let the child know you're available to talk if he or she chooses. And consider enlisting the help of a counselor, perhaps through your local MDA clinic.
It's all about balance
A few questions can help you assess your child's situation, suggests Kitty Moran, certified social worker, MDA parent support group leader, and high school counselor in Rochester, N.Y. (and the parent of a shy child). For example:
Does your child generally entertain himself or herself without your help?
Does he or she have at least one good friend? (Note: This friend doesn't necessarily have to be an age peer.)
Does he or she engage in at least one interest besides watching television or playing video/computer games?
Does your child show sensitivity to other people's feelings?
If the answers to these questions are "yes," relax, Moran says. "Your child just may not be a joiner and you need to leave him alone."
"No" answers indicate areas in which you may want to help your child expand. "If your child doesn't have empathy and is totally a loner and doesn't really interact with the world except through TV or a video game, then you need to start providing them with learning experiences," she says. "It's all about balance."
The root of the problem might lie in acute self-consciousness or harassment at school — or even depression, Moran says. Depression also may manifest itself as rudeness and anger, especially in teens. (See "Warning Signs of Teen Depression" section below.)
The elephant in the living room
Communication is crucial, especially if you suspect depression.
Moran says, "One issue that I see among parents of children with DMD is that they do not want to acknowledge that their child is getting worse, and they don't want to talk to their kids about it.
"The kids know it, but everybody is pretending it's not happening — it's the elephant in the living room. He has all these feelings and nobody to talk to about it. Be honest with your kids; acknowledge that this is happening.
"If they don't want to talk, leave the door open. Often they are afraid to talk about it because they're afraid they'll upset you."
Moran suggests saying: "You seem really depressed. I know you have a lot going on and it's hard to talk about. I just want you to know that we love you and we will make your life as fulfilling as it can be. You will always be a part of us. If you don't want to talk to us, maybe we could find a counselor or somebody else you can talk to."
"That's all you can do," she adds. "You can't force it, but don't pretend it's not there."
What about James?
So what should the parents of the hypothetical James do — push or not?
Start with talking, Peters says. "Tell him, ‘I'm sad about you missing out on most of the activities guys your age do. I want to understand where you're coming from in wanting to stay home most of the time.'"
Encourage a little more outside contact, Peters advises, adding that MDA summer camp is a safe choice. James' parents should kindly but firmly require that he go to camp, even if only for one day.
"A normal, healthy part of growing up is separating from your parents," Peters points out. "Camp is part of that. Not only is it good for social personality development, but it's also a good learning tool and a good support system. Kids at MDA camp open up to each other in ways they won't with anyone else."
Honor his personal care choices when you can, Moran says. If he's embarrassed about being fed in public, don't make him do it. "Why torture the kid?" If eating has to happen at a family event, make it as discreet and respectful as you can.
Try to be sensitive to his normal teen agony about having to be seen with and attended by his parents — maybe let Dad be the one to take him places instead of Mom. Structure social situations so they allow him the maximum physical independence with a minimum of fuss. Invite someone to accompany you to a baseball game — it's a low-pressure way to spend time together.
Strike a balance between acceding to his wishes and forcing him into new situations, Fleitas says. Otherwise, you deprive him of a chance to prove himself and build confidence.
"I know that many parents feel that life will be short, so let's ‘protect' the child from anything painful or distasteful if it is within our power to do so," she says.
"Though children may claim happiness by having only parents, sibs and video games to relate to, my sense is that their reference point is incredibly restricted and that they would be much happier with friends, responsibilities, other roles to play, the recognition and nurturing of their talents, etc.
"Making memories, I think, is so important!"
Warning Signs of Teen Depression
Under the word "moody" in the dictionary should be a picture of a teen-ager. The question for parents is: When are withdrawal and rudeness normal teen behaviors, and when do they signal the more serious condition of depression?
Unchecked, long-term depression is hard on both teens and their families. Studies show that depressed teens run a greater risk of becoming depressed adults with poor coping skills.
The National Mental Health Association says the following symptoms may indicate depression, especially if they last for more than two weeks:
- Poor school performance
- Withdrawal from friends and activities
- Sadness and hopelessness
- Lack of enthusiasm, energy or motivation
- Anger and rage
- Overreaction to criticism
- Feelings of being unable to satisfy ideals
- Poor self-esteem or guilt
- Indecision, lack of concentration or forgetfulness
- Restlessness and agitation
- Changes in eating or sleeping patterns
- Substance abuse
- Problems with authority
- Suicidal thought or actions
If you suspect your child is depressed, seek out professional counseling immediately, through your MDA office, school, community mental health center or general practitioner.
Tips for Making Friends
What if your child would like to have more friends, but isn't sure what steps to take? Here are a few tips, gathered from mental health experts and other parents, for fostering friendships:
Coach social skills. Does your child know how to take turns, be a team player and lose gracefully? Does he or she need to work on empathy or responding appropriately to others' cues?
Set up situations in which you can monitor your child's interactions with others (field trips, team practices, classroom activities, having kids over, etc.) and work with your child before and after the event, praising more than you criticize. A school counselor or teacher may be able to offer guidance as well.
Break the ice. Help other children and their parents see your child as Josh or Rebecca, not "the-child-in-the-wheelchair." One family hosted an ice cream social for selected children and their parents, and took the opportunity to explain their daughter's abilities and special needs. Invitations to sleepovers and birthday parties followed.
Find a group. Friends don't always have to be peers. Clubs that address your child's interests (magic tricks, remote-control airplanes, Beanie Baby collecting, etc.) are rich sources of friendship with people of all ages, as are organizations such as church or Scouts. Make time to go to events with your child and meet other parents.
Help them become indispensable. When children or teens assume positions of responsibility in which others depend on them (scorekeeper, theater makeup artist, team manager, etc.), peers begin to see the person rather than the disability.
Be the host. You may need to do the lion's share of inviting and hosting in order to facilitate your child's friendships. Open your house with a willing heart, because you'll be expanding your child's world.
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