MS causes many concerns for a family. A major one for a parent has to do with the question of when to tell children about the diagnosis, and how to explain MS so that they can understand.
When parents are troubled, children sense this and need to understand what is happening. Parents may be reluctant to talk about MS in order not to worry the children. This, however, may cause uncertainty and fear, and may also discourage children from asking questions and talking about delicate, important matters that may be bothering them. By contrast, open communication will encourage an honest and shared approach to facing the challenges of MS as a family, which can, in turn, help the child to cope.
Every child and every family is unique. Accordingly, there is no one simple recipe for how to talk to children about MS. However, a few general guidelines and good advice can be of use and inspiration to parents.
Before the diagnosis
Even when there are no visible symptoms, children are sensitive to physical and emotional changes in their parent. They sense that something is going on, or that something is not right or normal. It can be reassuring for the child to be told that the parent is being helped by excellent doctors to help figure out why mum or dad is not feeling well.
Explaining MS
For some families it may be helpful to have all of the family together when talking about MS with the children. A shared experience may make it easier for the child to confide in other family members with whatever thoughts and worries may arise in the future. Other parents may prefer to speak individually with each child.
Facts about MS should be presented a little bit at a time without too many details, and without talking about possible, future consequences – as they are, in fact, unpredictable. It is not negative for the child to witness the parent’s feelings. On the contrary, this may help the child feel more comfortable about sharing his or her own feelings.
Children may not ask questions spontaneously or talk about their thoughts and feelings. If this is the case, questions from the parent can be helpful in better understanding what the child is thinking, as well as whether he or she has understood the explanation about MS. However, it is important not to push too hard. Children typically do not need long explanations, and often respond and ask questions gradually when they feel the need to know something.
A number of MS societies offer age-appropriate booklets about MS that may be helpful in accompanying a parent’s explanation about MS.
“When mum told us she had MS we became very scared. Then papa told us that you do not die from MS. We wonder if they are honest.”
Siblings, 9 and 11 years |
Age and ability to understand
Generally, children are quite capable of coping with stressful events as long as they understand what is happening at their own level, and they feel that the problem is being dealt with. Their reactions and what they need to know will depend on their age and ability to understand. Children younger than four years are influenced primarily by changes and disturbances in their everyday life. Typically, they are not comforted by explanations and do not comprehend the implications of MS. Their well-being depends on a safe and familiar daily life where their needs are attended to. Physical contact and care are more reassuring than words.
“Mum went to hospital when I was five years old. I thought she was going to die because grandmum died there. I was afraid but I did not tell anyone.”
Christoffer, 10 years |
The same applies for pre-school children (four to six years), but at this age children also benefit from brief and simple explanations and examples. As smaller children are active with vivid imaginations, they may believe that they are to blame when their parent is tired, or when the disease seems to worsen. Children at this age need to be reassured that their actions do not influence the disease.
Children from the age of approximately six are able to understand, and perhaps notice more. They may become very insecure about their role in the family, and may have a tendency to take on too much responsibility within the home. They regularly need to be reminded that they are not to blame, and that they are not the adults in the family. Like younger children, children in this age group need attention and care, but also benefit from helping to give care and to feel useful. Parents should encourage children to help with smaller, practical chores, but never let them take on the adult’s role.
It is well known that teenagers in families with MS are at risk of taking on too much care-giving and too many practical responsibilities. The teenage years are a time for seeking one’s own identity and independence from the family. However, it may be difficult to focus on one’s own interests and relationships, if the family’s situation requires that the teenager takes on responsibilities within the home, and even for the parent with MS. In this situation, the best support is given by showing that the parent can manage without the teenager taking on too much responsibility, and by encouraging them to engage in their own lives. For this to occur families need to be informed about available resources that can help them organise care and household tasks in a way that will not overly burden any one member of the family, especially a child.
 Children of any age may worry that their parent could die from MS. Also, older children may worry about getting it themselves. These concerns may come up in situations where the child did not receive appropriate information at the beginning. In order to confront these fears, it helps if the child feels that he or she can express them to the parent or to another person who is available to listen. MS society websites, support groups and informative literature may be helpful resources for older children with these types of concerns.
“I realised that I can have fun and be happy at the same time as all the serious things.”
Lisa, 14 years |
Importance of having a confidant
Children often spare the ill parent their more difficult questions and negative feelings, such as anger or shame. Often such feelings are taboo and encumbered with guilt. Therefore, it can be of great importance for children to have a relationship with another adult, for example, another family member or a teacher who is close to the child. Having the parent suggest this kind of contact may encourage the child to take advantage of having another person outside of the “MS situation” as a confidant.
School and spare time
The children of a parent with MS may feel that their life is so very different that others will not be able to understand them and know how they feel.
One way to help the child in talking openly to others about MS is to present simple explanations about the disease and life with MS so that the child has information to use when peers ask questions or make comments. It is also helpful for parents to inform and educate teachers about MS so that they can better understand a child’s home situation.
Open communication – on a long-term basis
Over time, the disease may increasingly affect more aspects of family life, requiring additional effort to maintain the well-being and quality of life of all members in a family. Keeping communications open can help a family deal with the emotional pressure of living with MS. Family meetings on a regular basis can help to identify the practical, as well as personal and social, needs of the family as a whole, as well as of each individual member. Families should be encouraged to enlist help from outside if at all possible, so that no one family member is overly burdened with either personal assistance or household duties.
An essential element for communicating with children about MS is acknowledging that each child has his or her own needs and capacity for understanding, based on age, among other factors. It is important to talk honestly about MS, from the beginning, at a level appropriate for the child’s age.
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