Although ALS is not primarily a disease of the young, it sometimes happens that the family of the person with ALS includes young children. It is easy to forget that they need to know how the
disease will affect you - a loved parent or grandparent and the whole family. It is important that your family members and counsellors helping your family take time to work through the problems
children may have in coming to terms with ALS in their family.
The feelings of adults and children in upsetting situations are quite similar. Anger, helplessness, fear, hope, and despair are commonly experienced. Children, however, have fewer ways of
expressing their emotions and dealing with them. Younger children tend not to express themselves in words and will act out their feelings. Older children can find it hard to talk about how they
feel, and teenagers often do not have friends with whom they can talk about serious situations. Contact your regional ALS Society to request an ALS Canada booklet prepared for young people
whose lives have been touched by ALS.
For children of all ages, feelings can be expressed through emotional and behavioural changes. Children may have questions that they may be afraid to ask because everyone is so upset, and
they do not know how to find things out by themselves. Although many people feel that children should be protected from sickness, this does not help the child. The child will know that
something is wrong and will get upset anyway.
Talking to Children
In dealing with children experiencing sickness and big changes in their families and lives, it is necessary to explain everything as fully as possible. Because adults tend not to explain to children
what is happening, children often blame themselves for the sadness in the house and feel very guilty. They may want to know what exactly it is that the sick person has, whether they can catch
it too, what will happen to the sick person, and whether that person will die. These questions should be answered as positively as possible. For example, instead of telling the child that a person
is very sick or dying, something like: “Well, they are not doing very well right now, but the doctors say that there's lots that we can do. We can.....” gives hope without being dishonest.
Children should know that they can ask questions and that someone will try to answer them. If their parents do not feel able to talk to them, then a relative, friend, or doctor should make sure that
the child knows that someone is always available to talk, not only about the illness but also about anything that is worrying the child.
A major concern of children is often what will happen if the sick person becomes very sick or dies. They may want to know if they will have to move, who will look after them, if they will have to
give up their favourite things, change schools, and so on. They may be afraid to ask about these things, so they should be reassured and told about any planned changes before a crisis
interrupts their normal routine.
Very young children may be upset by what is going on, but will probably not be able to understand your explanation. Giving them lots of hugs, love and attention helps until they are old enough to
understand the situation in more detail.
What the child knows
People should talk as openly as possible around children, as secrets make everyone uncomfortable. Children should be encouraged to talk about how they feel, to cry if they want to, and to
talk about the situation to anyone with whom they feel comfortable. Expressing feelings makes them easier to cope with and understand. Children may hide their feelings at times, but that does
not mean that they do not care, or are not feeling anything.
Children will often want to help, and this should be encouraged. Being useful will make them feel that they are involved and valuable. They do not have to help with medical care: Doing more
chores at home, getting a paper route, or just reading and spending time with the sick person are all possibilities.
Life Goes On
Life for the child should go on as normally as possible once they know what is happening. Neighbours and parents of the child's friends usually do not mind picking children up from school or
taking them to after-school activities. If money is a problem, many community centres and schools offer inexpensive programs for children. Children should be encouraged to spend time with
friends as well as at home. Allow the child to help in making plans for weekends and free time; this is another way for them to feel useful. Planning activities to include both the sick person and
children helps everyone to feel better about lifestyle changes.
Long-term ways to cope
Once the shock of sickness has worn off, children may begin to feel bored with all the changes and their new responsibilities, embarrassed by someone who is sick and different from everyone
else and frightened because they don't get the attention that they're used to. They may start to fight with family and friends and be rude and disobedient at home. Making sure that someone
will pay adequate attention to him or her is the best way to prevent this behaviour. If parents cannot do so, grandparents, neighbours, and friends of the family may be good choices to involve
in this area. Having someone there who understands how they are feeling helps.
Children can also find it hard to deal with the physical changes of sickness. Explain to children that a change in appearance does not mean that the person's feelings toward them have changed.
Serious illness can mean mood changes. If possible, children should be protected from the emotional swings of the sick person. Visiting at times when the sick person feels good should be
discussed. Children should also be allowed to go away with friends and family for a break.
Children, like adults, will continue to feel upset and unhappy for long periods of time in these situations. Not showing their feelings does not mean that they have none. They should not be
told to “get over it” or that they have been upset for too long. Children should be able to express their feelings for as long as they want to.
