Discussing MD with Children – for Parents & Caregivers
This relates particularly to Duchenne Muscular Dystrophy, and to discussions involving the affected child, siblings, friends and interested / responsible adults
1. When parents find that a child has a severe illness they experience a sense of shock. When the illness is severe, prolonged, debilitating and associated with a restricted life expectancy as with M.D. the shock is most likely to be severe.
Shock reactions include a sense of unreality, numbness, disbelief, denial, and grief. These become associated quite rapidly with feelings of guilt, anger and frustration, depression, rapid mood swings, intense searching for a cause or cure, and heightened feelings of protectiveness towards the child. There may also be feelings of hopelessness and total helplessness. Questioning of the purpose of life and the value of going on living for both parent and child are common. From feelings of desolation and destructiveness parents search for hope to cling onto. Goals for the future and optimism about possible opportunities can provide bases for structuring current living. Gradually, out of these phases parents evolve a more or less effective style of coping which suits themselves and their situation.
2. A major issue for parents, and a responsibility with which they must learn to cope, is what and how to tell other people including the child. In part this depends on the severity of the illness and the age of the child at the time of diagnosis. If the child is obviously unwell and has a restricted or decreasing level of physical functioning at the time of diagnosis then he/she requires clear direct responses to their questions about what is wrong with them. In some instances these may be appropriately provided by the medical personnel concerned. However, parents need to discuss the sort of information which medical personnel would give. Usually the initial discussion is best between parent and child, followed up by joint discussion with doctors and others. Because muscular dystrophy is uncommon it should not be assumed that medical personnel could engage in such discussion without an opportunity for thought and preparation. However, a caring and thoughtful doctor with an approachable manner is likely to be more helpful than one specialist who is remote and abrupt however well informed.
3. Often diagnosis occurs at a time when the child is physically weak but has not yet lost obvious functioning. Then as always explanations given will be affected by the child’s age, and stage of thinking.
4. Professionals associated with children and families affected by this disease recommend the following guidelines for discussion.
(i) Listen carefully to the child’s questions. If necessary ask further questions in order to respond clearly to what is being asked, and do not respond to what is not being asked. In general, it is best to create a situation in which the child feels free to ask what they need / want to know, rather than giving them information based on what you think they should ask or should know.
(ii) There are no right responses. Questions from children will vary substantially depending on their age, ability and emotional state. Responses should be directed by your knowledge of the individual child and the questions asked.
(iii) In the pre-school years most children with M.D. will need to understand that their muscles are not as strong as those of other children, and that whilst they can and should try hard there are some things that they may find more difficult to do than some other children. When they ask why they have muscle weakness it may be appropriate to say that the weakness is called Muscular Dystrophy. However, it may be appropriate especially initially to explain the muscle strength on the basis of individual differences, i.e. people are different, some are black, some are white, some are well, some are ill, some are strong, some are not so strong etc.
Using the words Muscular Dystrophy means that the child needs to be told something about the condition, or else he / she is likely to find out from others. If Muscular Dystrophy is present in other family members explanations about the difference between this child and others will be appropriate.
Physical skills and strength are very important to children at this age. They are becoming more independent emotionally, and often measure their relations with other children in terms of their ability to keep up. The most physically able children often are group leaders at this stage. It is very important to allow the children therefore the opportunity to keep trying, not to be too protective or negative.
(iv) In the pre-school or early primary years many children will become aware that they cannot do some things as easily as they could before. When they talk about this it should be confirmed, and the sorts of practical difficulties they are having must be discussed. This may lead to suggestions about other ways to do things to achieve what they want. Discussion about feeling frustrated and angry is likely to be appropriate at this stage. Helping the child to label their emotional reactions, to understand them and then to find ways to manage them is a major test for all parents and children in this age bracket.
(v) There is a need for a balance at all stages between practical realism and acceptance of what is happening, understanding and sharing the negative emotional reactions and still allowing everyone space for optimism, hope and encouragement. This can be built by encouraging the child to express emotional reactions, but also to build patience and perseverance with physical activities. Valuing these temperamental characteristics in these children is particularly important. At the same time, helping them to develop skills in sedentary activities and leisure pursuits from early in their lives is realistic forward planning, which enables them to build and maintain competence for as long as possible. These provide long term areas of self-reliance, and social and recreational outlets.
(vi) Feelings of the child’s physical vulnerability, as well as the parent’s emotional vulnerability can lead to protectiveness towards both. The parents may feel unable to discuss some topics or aspects of a topic with the child or siblings. If this is the case they should seek counselling to help them build their ability to handle such situations.
Feelings of protectiveness towards the child may be a natural consequence of concern about the extreme effects of possible injury but it adds to the child’s burden. The child needs to be as independent as possible, and able to engage in activities for as long as possible. Parents need to help children to decide what acceptable and unacceptable risks are in some situations. Excessive or unnecessary restrictions on activities will be likely to produce feelings of frustration, anger and depression in the child.
However very young children don’t know / or want to be told of restrictions or risks. Parents may find themselves being sees as excessively protective by the child possible other adults, as they attempt to defend them against falls etc.
(vii) The two key issues which children with M.D. need to understand gradually are the;
1, the reduction in physical functioning with age; and
2, the probable restricted life span.
Concepts of death alter throughout childhood. Between the ages of 10 – 13 children begin to develop something like an adult concept of death. Awareness of death is dependent on experiences and on discussions with other people. Whilst TV represents evidence of death daily many children do not experience death at close quarters through awareness of the death of relatives or friends. The death of animals or pets can be helpful time to foster discussion of this topic which adults may otherwise tend to avoid.
Children aged 2 – 5 years become aware of death and tend to have a magical notion of it as a temporary state which involves coming alive again. It’s seen somewhat like sleeping and waking. Younger school age children tend to regard death as more permanent but as something which happens to others, especially the elderly, rather than themselves.
Response to questions about mortality and MD are most likely to be required by school age children. In response to a question about M.D. and death a parent may find a reply along the lines below helpful. “Everyone dies. People who had M.D. in the past used to live very short lives, but that’s not so much the case now. Your life is likely to be shorter than some other peoples, but we don’t know how much shorter. People with M.D. now live into their thirties. Medical science is finding more ways to prevent the restrictions that affect people with M.D., and there are likely to me more.”
Acknowledge of distress and sadness as appropriate reactions to such news is important. Discussions might then gradually move to accidental death and the advantage of knowing that your life span may be short in enabling planning to occur. Parents should react naturally when telling a child of these matters. Parents should feel free to express some sadness and to weep. Whilst, they may hide from the child the full burden of their own distress, they should not hide it completely. Sharing tears and cuddles provide comfort for both the closeness to pursue the discussion further later.
(viii) If a child is suddenly very ill and death is imminent then little discussion if required, usually. Confirmation of what is happening is mostly all that’s required. Children may hesitate to discuss topics if they feel that adults cannot cope with the discussion or will be too upset. They usually show relief when discussion is out in the open. This is quite different from the contention required in management of M.D. and has been fully covered elsewhere.
See for example :- R.W. Buckingham “A Special Kind of Love – Care of the Dying Child.” Continuum, N.Y., 1983.
It is important to point out to other people that children with M.D. have a right to learn about MD at their own pace without others forcing the realisation on them. If parents are following something like the principles outlined above they will need to consider restricting the number of people that they tell about the child’s condition in order to give the child time to find out gradually. This does mean that the number of responsible adults learn of the condition as the child does. It will be necessary to explain to each person being told who they can discuss the matter with, and why few people know. Otherwise they are likely to discreetly go against parent’s wishes in order to unburden themselves, and out of feelings that the parents are being excessively secretive.
As adults are told of the condition they will need also to be briefly informed about the parent’s plans for helping the child to realise the nature of the condition. They have to be asked specifically not to discuss the subject with others, or the child until the parents indicate it is appropriate to do so. This may necessitate the parents holding a discussion with some or all of the child’s teachers to outline what is occurring and what judgment is appropriate. It will be helpful to have a school medical officer or the child’s doctor present at such a discussion.
Discussion with older siblings may be necessary before the child with MD is ready to hear the explanations. If this is the case it is likely to involve explanations along the lines described above with the proviso that they will need to keep their understanding secret between them and parents, until the younger child is ready to understand. this can prove very difficult to achieve as the older child is likely to be very upset and protective towards the sibling. Practical explanations to siblings may be all that is appropriate / practical until the child with MD is ready to understand.
Resilience, positivity, and optimism are characteristics of childhood which require particular nurturing in these circumstances. After the initial shock, parents should assert themselves to take an active informed role in dealing with the emotional as well as the physical of this illness. Recognition of this fact is a major step along the way.
These points are intended as a guide for people who may be coming into contact with newly diagnosed children or parents. This list is not exhaustive and people will vary widely in how they react to the diagnosis.
1. It is helpful to find as much as you can about the condition. It is not a condition that is well understood in the general community and many people have misconceptions about Muscular Dystrophy. Often the myths about M.D. are worse than the facts, so if you have a reasonably clear understanding of the condition you will be better able to provide support for those who need it.
Also remember that literature becomes out of date very quickly. Anything written more than about 10 years ago (particularly pre 1995) may not accurately reflect current knowledge of genetics, research or attitudes to people with disabilities. The Muscular Dystrophy Association has an extensive range of literature available and can answer questions you may have.
2. Be supportive but not pushy. Usually the diagnosis comes as a shock and surprise to families. Parents may show confusion, anger, shock or a range of other reactions. Allow them to respond in their own way and do not judge them for this. Their responses will change over time and each person in the family will react differently. There is no right or wrong way to respond to the diagnosis.
The best thing you can do is tell parents that you are there for them if they ever need support or someone to talk to.
3. Don’t try to give advice. There may be times when this is appropriate but it should be done sensitively. If they are talking to you about the condition parents may simply want to get things “off their chest”, in which case giving advice may stifle this and make them feel uncomfortable. Heavy handed advice may also make them defensive and reinforce their sense of failure.
It is easy for people outside the immediate family to see what should be done but we are not the ones who have to deal with it every day.
4. Try to encourage parents to keep their normal routine as much as possible. There may be a feeling of upheaval at first but the time after a child is diagnosed is not a good time to be making major lifestyle changes. It is unlikely there will be a dramatic change in a child’s condition simply because they have been diagnosed with this condition.
5. Be positive, but realistic. The outlook for a treatment or cure is much more positive than it used to be, so there is reason to be optimistic, but do not pretend that the future is all going to be easy.
6. Other young children may become aware that the child has something wrong. If children ask questions or make comments they can simply be told that X has a problem with his muscles which means that he may have trouble doing some things and may need help at times. They do not need to be told all the details about life expectancy etc. Also remind them that the condition is not contagious and that X is no different to them, apart from the problem with his muscles.
7. Treat the child as you did before you found out about the M.D. They still need to be disciplined and treated like other children. They are still able to take responsibility for their actions. Children with M.D. are not sick and do not need sympathy, just lots of encouragement.
8. The great majority of children with MD can still live positive, active lives. Most attend regular schools, enjoy music, games and sport just like other children.
9. Try not to let your own feelings become a burden to the child’s parents. You do not need to deny you are upset, but if you are feeling upset, the child’s parents are probably feeling ten times more so.
10. Beware of sensational stories of cures, media reports etc. From time to time these appear but usually they come to nothing.
11. Remember that parents do not simply become better parents because they have a child with M.D. Also, most parents are as uninformed about MD as everybody else. They still make mistakes, just as all parents do, but they should not be made to feel failures because of this.
12. Try to avoid comments like “there’s always someone worse off”. This may be true but it can sound like you are ignoring the significance of what the parents and family are dealing with.
There are numerous other issues that must be considered. If you have concerns please do not hesitate to contact Muscular Dystrophy Australia on +61 3 9320 9555 or Freecall 1 800 656 MDA (1 800 656 632) (Australia only) and discuss these with us.
Contact MDA Client Services via email for more information – ClientServices@mda.org.au