From a Child’s Perspective
What do children see when a parent has MS? They see someone whom they love very much. They see a mother or father who is completely “normal” in their eyes. And they see that this very important person sometimes needs their help.

Cindy Richman is the director of client services at MSAA and oversees its Helpline Consultants. “When someone in the family is seriously ill, acknowledging that there will be permanent changes is important,” says Ms. Richman. “But keep in mind that there will be positive changes as well. As a family goes through the different seasons and transitions, the family reinvents itself.”

Having a parent with a chronic illness, particularly one as unpredictable as MS, can bring uncertainty and worry into a family. Smaller children may wonder if they can “catch” MS and wait for their mommy or daddy to get better – just as one would recover from a cold. They need to know that MS is not contagious, and that for those with MS, the illness does not go away. Young children may pretend to have the same symptoms and want to stay home from school to be with their parent when he or she is ill. They may worry that the parent will need help while they are gone.

Joseph McBride, MSW, is a clinical social worker with a private practice in Lawrenceville, New Jersey, specializing in families with chronic illness. He is also a part-time teacher at the University of Pennsylvania, School of Social Work. According to Mr. McBride, “MS changes can occur quickly, making it different from other illnesses. For younger children, perhaps under eight, this can be a very big issue. They will often have issues about separation and security, along with concern about the parent.”

Older children who have a clearer understanding of MS are concerned about their parent’s health and the future. They may worry about leaving their parent alone at home and feel a greater burden of responsibility. Another concern is whether or not they should leave an ill parent to go to college and if funds will be available for their education. Parents need to encourage their children’s independence and assure them that things will still be taken care of at home. Additionally, older children may wonder if their parent’s MS can be passed on to their children, but fortunately the risk of this is very low.

Mr. McBride continues, “For older kids and teens, their big issue is that they are trying to break away, but they see their parent going through a tough time. They will struggle with the fact that they don’t want to leave their parent alone, but they are looking for independence.

“Parents with MS are scared and often experience an inner tension. People are naturally worried about what’s going to happen to them. They have to live with that everyday. When a parent is seen struggling, this wears on the child and the entire family.
“Parents need to look for changes in their child’s behavior. Warning signs include: going from happy to sullen, drop in grades, nightmares, crying, use of drugs and/or alcohol, oppositional behavior, and/or a lack of interest. Any unexplained change in a child’s normal behavior pattern is a cause for concern.”

“With regards to teenagers,” says Ms. Richman, “they can be challenging, even when both parents are perfectly healthy. Doing little things that are special – such as asking a care partner to make the child’s favorite dessert on a day he or she is home for dinner – shows you are thinking of them, and this is something a child will always remember and appreciate.”

The Invisible Symptoms of MS
When a parent with MS has bouts with tremor, spasticity, or other “visible” symptoms, children can plainly see and understand why the parent is not feeling well. Other symptoms, such as fatigue or cognitive deficits, are among the “invisible” symptoms of MS – and these are more difficult for children to comprehend.

Invisible symptoms may be misinterpreted by children as a lack of interest. For instance, listening attentively to a child’s story can be difficult when fatigued. Nearby distractions (such as TV, music, or other people talking) can interfere with a parent’s ability to concentrate on what’s being said, especially if cognitive issues are involved. Memory problems are common and forgetting an upcoming activity or event with the child is very easy to do. Children take these things personally and can feel hurt or angry as a result.

At times a child may be upset about a situation, perhaps because he or she had to miss an activity or take care of some extra duties at home. To retaliate, the child may wrongly accuse the parent of being lazy and feigning these invisible symptoms to get out of doing work or taking part in an activity. This is a common reaction that is really anger at the MS. Family members need to be aware that the child is not really mad at the parent, but rather venting frustration about the situation MS has caused.

Explaining these “invisible” symptoms will help children understand their parent’s behavior, be more sensitive to their parent’s symptoms, and learn to not take inattention or forgetfulness personally. In addition, planning ahead to do activities in the morning when less fatigued, reducing distractions when talking, and keeping a calendar in a common area to remember events, are among the strategies that can help to minimize these types of problems. As with all MS symptoms, fatigue and cognitive issues should be evaluated by a physician, who may prescribe strategies and/or medications that can help.

When Emotions Run High
Children may also become the innocent targets of a parent’s misplaced frustration over his or her MS, or when he or she is experiencing emotional symptoms. Individuals with MS are also more prone to feeling depressed, which can affect their parenting skills. MS can cause parents to lose their temper more easily, experience mood changes, and quickly become agitated or irritable. Emotional problems are no exception; as with other symptoms, these too need to be evaluated and treated by a healthcare professional.

Emotional outbursts are difficult for children to understand. Younger ones can be startled, their feelings may be hurt, and they may blame themselves. Older children may feel insulted and become angry. Children of all ages need to be reminded frequently that their parent with MS may have trouble at times controlling emotions and temper. Parents may need to apologize for their outbursts. They should also remind their children about the parent’s fatigue, memory problems, and trouble concentrating. Parents need to express their appreciation regularly for the children’s extra help and understanding.

Life May Seem Unfair
Children of any age with a parent who has MS will have more to do: caring for the parent; caring for younger siblings or the family pet; helping with household duties; and learning to be more independent to take care of things on their own. Most children are with their parent everyday and able to see changes in symptoms as they occur. They learn early in life to be sympathetic toward one’s needs and to help others.

Care must be taken not to overwork a child and to make sure he or she still has time for school, activities, and friends. Duties such as personal care for the parent, i.e., dressing, bathing, or bladder and bowel care, should not be expected of the child. While emergencies may arise, all possible resources for help should be explored to avoid putting a child and parent in an uncomfortable position.

Children also learn flexibility as things can change at a moment’s notice. One day a parent may be feeling fine, and another day all plans may need to be canceled. Every trip out of the house, to the store or to a baseball game, can bring the unexpected. A child can feel anger and frustration at the unpredictability of MS. Parents can help by planning make-up days for any missed or interrupted activities, or by having a backup plan in case the unexpected occurs.

As children of a parent with MS get older and spend more time with friends, they observe how different life is for families without MS. Children in families without illness or disability typically have fewer chores to do and often take far more things for granted. Their parents may be able to take part in more activities, such as going out or participating in sports.

Families without illness may have more money to buy clothes, take trips, and do other things that are important to a child. Several issues can affect finances for a family with MS, including medical expenses, reduced income, and hiring outside help. While purchases and activities may be greatly limited, children will feel better about these limitations if they are involved with choosing which family purchases and activities the family can afford.

Children will often ask why their family has to deal with MS while their friends’ families do not. They know that having more work to do, having less money, having less free time, not being able to participate in certain activities, and especially having to see their mother or father sick, is not a fair situation. But people often find that many things in life are not fair, and this is just one of the many valuable lessons children may learn when MS enters the family.

Mr. McBride comments, “People look for an answer as to why they are affected by MS. There is no answer, and this is what makes it so difficult. They need to deal with the anger of having an illness.
“Acceptance of an illness does not come at one point in time. This is a process where an individual gets better at adapting, but still has good days and bad days. You need to be cautious about referring to ‘acceptance.’

“Denial is a defense mechanism and can be a friend. After the diagnosis of a chronic illness, it allows time to rally one’s defenses. It gives space so the person does not have to deal with the diagnosis right away, allowing him or her time to prepare. Denial is not a friend, however, when it prevents a person from following a treatment plan. People need to see both sides and use denial to their advantage.”

Medical Issues and Assistive Devices
Parents with MS will also visit the doctor more frequently. They may have to take medications and may experience side effects. During an exacerbation, a parent may need to spend time in a hospital. These health-related issues are upsetting to children.
Familiarizing children with the staff and equipment at doctors’ offices can take away some of the fear they may be experiencing. Showing them what medications are taken and how they are administered can also help to ease their anxiety.

Hospitals are often viewed by children as a place where people die, so they need to be reassured that the parent will be coming home. When a parent is in the hospital, the child’s schedule is disrupted, and those at home should try to stick to the normal routine. Staying in touch with the parent through letters, phone calls, and visits to the hospital, are important to help children through such times and reduce the separation anxiety they may be experiencing.

Children may watch as a parent uses a cane, walker, wheelchair, or scooter. Perhaps a brace is needed to steady a hand or a foot. These things can all be frightening or upsetting to children at the beginning. Having friends see their parent using a device, experiencing a spasm, or slurring speech, can even be embarrassing for children.

Parents need to recognize this natural reaction and talk about these types of situations with their children. Children need to know how to respond comfortably, without becoming angry or embarrassed, when someone acts inappropriately around their parent. Discussing what to say specifically will help them handle the situation and not become anxious. With younger children in early grades, a parent may come into the classroom to talk about MS and demonstrate a device, possibly allowing the children to try out a wheelchair or scooter.

Despite any initial discomfort that a child may experience with a parent’s disability when outside of the home, this may be replaced with the happiness of having his or her parent attend an event. Many children feel proud of their parent who is able to make the extra effort and participate in spite of his or her physical limitations.

“Everyone has different issues and roles,” points out Ms. Richman. “For instance, a dad who was a coach and is no longer able to participate will experience a special loss. Another dad may not have participated in many physical activities with the child and so the loss may not be as severe. Sometimes a child might not be able to handle seeing the parent in a scooter, while another may appreciate the freedom it provides for the parent. Each family should be looked at individually, consider the issues unique to them, and work with what’s normal for that family.”

Seeing a parent have a fall can be particularly traumatic. Learning how to stay calm and assist the parent with getting back up will not only be helpful to the parent, but will also make such accidents easier for the child to handle. A physician, physical therapist, or visiting nurse can help with teaching children about falls.

Family Roles and Relationships
Roles and relationships change when MS enters the family. A parent diagnosed with MS who has an active career, may choose to switch positions with the spouse who, up to that point, may have stayed at home to care for the children and household. An older child may help to care for the house, younger siblings, and the parent, taking on some of the parents’ responsibilities. A grandparent may take over, suddenly acting more like a parent to the grandchildren, and returning to the former role of caring for the adult child.
Regarding grandparents, Mr. McBride points out, “Sometimes a parent’s mother or father tries to step in and take over for the parent who is sick. This makes the individual feel like the child again and can create resentment. The role of the parent’s mother or father needs to be discussed and worked through so everyone is comfortable with the situation.”

Ms. Richman continues, “Parents of an adult child with MS may feel guilty and think that they did something wrong to cause the MS. The family should not beat themselves up over a family member’s MS. They need to circle the wagons and do some family planning. Everyone needs to get on board with the family’s decisions on how to handle things. The family needs to protect itself, choosing whom to tell and when.”

Other family members, friends, neighbors, or hired help (such as a nurse, aid, babysitter, housekeeper, etc.) may come into the home as well to provide much-needed assistance. When asking for help or hiring someone to come into the home, parents need to be sure that the people they choose will have the family’s best interests at heart. They should not compete with the parents or go against their wishes. Additionally, parents must be sure that the children feel safe and comfortable with whomever they select. If not a family member or friend, an applicant’s credentials and references should be checked in advance.

Having new people become part of the household presents new roles and relationships for children. While this may present some challenges, this can often be a positive experience, providing relief from some of the children’s duties – freeing them up to just be a kid – and sometimes providing additional companionship for them too. An extra person in the household may create more time for the family to do some of the extra things, like driving the children to a friend’s house or store. An additional person can also free up the other parent’s time so he or she may join in an activity, such as going for a bike ride or watching a game.

What Research Shows
Studies show various results for how children are affected when a parent is chronically ill. For instance, children may experience more emotional stress, have less self-confidence, have more worries about health, and possibly exhibit behavioral problems. Other studies, however, have observed no significant psychological or behavioral differences, and found such children to be mentally healthy, more sensitive to others, independent, appreciative of life, and showing more concern over their parents’ health.

According to interviews, a parent’s mood swings and emotional upset are harder for children to cope with; they appear to adapt much better to a parent’s physical limitations. Children point out that parents with MS may lose their temper and direct anger toward them unjustly. This can make children uncomfortable and afraid to talk about the parent’s MS. Parents need to realize the extent to which their emotions are affecting their children, and take steps to prevent or control future emotional outbursts.

Despite having to deal with the emotional highs and lows experienced by a parent with MS, children do appear to cope very well overall. They tend to perform well in school, are emotionally stable, and have plenty of friends. Families dealing with chronic illness often become close as family members join forces to run a household. Children tend to be more sympathetic to the needs of people with disabilities, and learn early on to be responsible.

Reassuring children that their parent with MS will continue to be there for them is very important. Reassuring parents with MS that their condition will not negatively affect their children will greatly help promote everyone’s peace of mind.

When and What to Tell a Child
“Parents often don’t know how much to say to their kids about their MS,” Mr. McBride states. “A lot of people withhold information and not tell their kids, but it’s important to be straight-forward with them. Parents may feel that they are protecting their child, but doing so usually just causes the child to become confused and angry. A child can see that something is going on, and the worse thing is for him or her to hear about a parent’s illness from someone else. They would much rather be informed.

“Knowing how much to say is important too. For younger children, the parent should answer their questions but not ‘over-answer’ them. Keep things on a level they can understand. I use the analogy of talking about sex; the parent needs to keep it ‘age appropriate.’ With older children, they need to know more information. Additionally, if a parent thinks symptoms may be getting worse, talking to the children about what to expect will help them to be better prepared for whatever changes may occur.”

Ms. Richman adds, “When breaking the news to a child, it’s important to know how and what to say; to talk in the right setting without distractions; and to give him or her information in small doses so not to be overwhelming. Younger children may be encouraged to draw pictures to illustrate how they are feeling. Children need to feel protected and safe. Handling things this way will encourage them to want to talk again about the parent’s MS.

“Parents with MS often don’t want to tell their kids about their MS, but children know when something is wrong. They can think of so many other things if not told the truth, and this creates more of a division. Parents need to teach their children that life is hard, and children need to see parents cry and go through the process.

“Similar to talking about sex, you want the child to hear from those who understand… and not other kids who may tell them something scary. Parents should talk about MS while doing fun things, like going to the beach or to a fast-food restaurant; incorporate it into normal activities, when enjoying each other.”

Younger children may benefit from descriptions and demonstrations of some symptoms so they can understand what the parent may be experiencing. Various ideas include putting weights on the child’s arms and legs to illustrate fatigue; having the child look through something blurry, such as a screen, or look at a picture with a hole in the middle, to understand visual symptoms; and elastic bandages wrapped around a leg can give the impression of spasticity.

Older children may not be as comfortable talking about MS. Other options include books or videos that may be read or viewed alone or with the parent. Talking with the parents’ healthcare team is another good option. Asking an older child what he or she prefers will help the child feel more comfortable with learning about MS.

“Communication is the mainstay,” concludes Ms. Richman. “While parents may not be able to participate in all of the physical activities with their children, communication is something a family can have for life. Trust and honesty are always needed.”

Getting Support and Counseling
Attending support groups and workshops can be very helpful to the emotional health of family members. Some are set up just for teens who have a parent with MS. Talking about problems and sharing common experiences assist with relieving tension and providing positive outlets for emotions. These types of meetings can also be educational.

Seeing a family therapist can help families cope with the effects of MS. Mr. McBride points out, “Some families may do okay without counseling, but if concerns arise, a family should get an assessment. When a parent experiences a change in functioning or is not happy with him or herself, seeing someone is a good idea.

“Individual or family therapy can help family members to better deal with the different issues that arise when a parent has MS. Some social workers may even come to the house, but often family members will need to go to an office to see a social worker or psychologist. Having everyone in the family attend is the ideal plan.

“Families always need to consider the issue of physical and mental distance. As people become physically and mentally distanced from others, they stop going out and calling friends and family. As their access to a social system or network is reduced, they lose their outside connections, and the family network becomes exhausted.

“Dealing with grief about the diagnosis of an illness is a major issue as well, and should not get in the way of daily life. Talking about grief and processing one’s feelings can improve the situation. Getting resources is important, and this may include emotional support (through activities and support groups), therapy (counseling), delegating work to others, or bringing in outside help for assistance.”
Ms. Richman agrees. “Over time, a child may feel rage underneath. Parents need to be aware of the resources available to them before anyone in the family reaches a ‘dark place.’ Seeking help early-on helps to keep everything under control.

“Parents may be dealing with guilt, shame, or loss issues; they need to seek counseling so they can be more comfortable and have a place to put everything emotionally. They can try to be the best person possible, but they may not know how changes are affecting them. Seeing an outside person one time a week or even one time a month is helpful. Spouses tend to protect one another; they don’t want to voice all the scary things going through their minds.

“Seeing a counselor is a preventative measure to avoid problems before they start. Families should know that there’s a lot of support out there and they can go for help as soon as they wish.”

For More Information
A great deal of written information is available on MS and family issues. Family therapists, support groups, parenting workshops and other resources are available throughout the country. Please call MSAA’s Helpline at (800) 532-7667 for more information.

References
Many thanks to Joseph McBride and Cindy Richman for their time and contributions to this article. Their help and expertise are greatly appreciated.

Printed references include: