DMD - A Guide for Parents
"I felt I was in a state of total shock at the time. I had never heard
of muscular dystrophy before. I also felt a lot of guilt because I thought
it must have been my fault."
This is a typical initial reaction of a parent who has just been told
that their son has Duchenne muscular dystrophy. It is possible, in time
to move beyond this emotional state to one of coping in a very positive
manner with everyday living. A booklet printed by the Muscular Dystrophy
Association called "Learning To Live With Neuromuscular Disease : A Message
for Parents" by Sylvia E. McGriff, addresses this subject. A copy of the
booklet can be obtained from the Muscular Dystrophy Association.
Your Feelings and Ways to Deal with Them
Firstly, people react to this diagnosis differently. All individuals are
unique. Each has his or her own strengths, resources, networks and ways
of coping. Some may take weeks or months to adjust to the diagnosis, hoping
that the terrible prognosis will go away. Others understandably react
with shock, anger and sadness. They may be angry with the doctor who gave
them the diagnosis, angry with their general practitioner for not making
the diagnosis earlier, angry with their spouse or with themselves or angry
with God. It may take some time before a family develops its own way of
living with a family member who has muscular dystrophy and is able to
deal with the issues this brings. The process of coping is continuous.
It will vary over time in response to the changes and needs of the situation.
There will be highs and lows. As long as the way used by the family is
not self destructive and does not hurt anyone then it is appropriate and
should be respected. There is no right or wrong way. Each family will
find what works for them. Drawing on their own resources and the support
and experience of others can be as useful as are other methods which will
If people can face these feelings with courage, they can reduce their
stress and anxiety and move towards coping positively and creatively.
Seeing yourself coping, in your own mind's eye, is an essential key to
this process. For example, a mental picture of your son enjoying himself
at school will help you find ways of making that possible and your eagerness
will be passed on to your child so that he too will be excited about going
Barriers to a Positive Approach
There can be understandable barriers to a positive approach. Often parents
blame themselves for their child's illness. They may feel they have been
punished for something they have done. A genetic disease is no one's fault.
By some unknown failure in the biological process an error occurs. However,
it is not uncommon for mothers to feel guilty, blaming themselves, although
incorrectly, for causing the disease.
Fathers too can have difficulty accepting that they have a disabled son
who will not be able to do things that they would like them to do.
Sharing Feelings With Your Spouse
Couples can overcome these painful feelings by recognising them and sharing
them with each other. Fathers may find this difficult because of society
expectations that they should be strong and not show their emotions. They
need time and perhaps the right situation to express their feelings. Every
person has their own way of resolving problems.
Significance of a Father's Role
Normally children become more independent as they grow older. However
for boys with Duchenne muscular dystrophy, just as this independence begins
to develop, the progression of the disease makes them physically dependent
again. A father has an important part to play at this time and can make
a wonderful contribution to a boy's life. Although it is not always possible
to give lots of time, given the need to earn a living, any time available
is valuable and constructive. Other male figures close to the family can
also provide support and guidance.
Every Family Member Counts
Parents must remember that each member of the family has needs that must
be recognised. Although the child affected with Duchenne muscular dystrophy
has needs that are great and obvious, brothers, sisters and spouses can
become upset if all of the attention is focused on one child. Try to strike
a balance in meeting all of the families needs.
Role of Outside Activities
Another opportunity for gaining independence and confidence, particularly
in coping with a variety of people and situations, is for your child to
participate in activities outside the home. Not only does participation
develop independence and a positive self image but the activities themselves
provide a wonderful source of pleasure and enjoyment. Scouting activities
and electric wheelchair sports, such as hockey, balloon soccer, and blow
darts, are specifically for boys with Duchenne muscular dystrophy. There
is also a wide range of community programs available.
Given the demands and challenges of situations that they meet, at times
a family may find it useful to seek professional counselling and assistance.
This should be thought of as a positive and constructive action rather
than a failure or weakness.
Parents Of A Child Who Had Duchenne Muscular Dystrophy
would go through it again. We consider it a honour to have shared our
lives with our son."
The following section describes some of the ways a family shared their
lives with a son having Duchenne muscular dystrophy. It includes both
practical advice and ways of dealing with issues of an emotional nature.
The Morrisons are sharing their experiences with you in hope that you
too can live with hope and provide a positive environment for your son.
They have wonderful memories of happy times shared with their son. They
developed a very positive, loving, and practical approach to dealing with
the many problems they encountered. This does not mean that you should
live your life exactly as they did. This is one approach which was appropriate
to their situation. It may help you in some way.
The Morrisons' eldest son, Peter, died of Duchenne muscular dystrophy
when he was seventeen. They have two other children, a boy who does not
have muscular dystrophy, and a girl for whom it is not yet established
whether she is a carrier. Mrs Morrison took the role as primary carer
of their son. During his son's adolescence Mr Morrison had the opportunity
to change his job. He took on a position which had greater flexibility
in the hours he worked, enabling him to offer more support to his wife.
to tell your child?
Mrs Morrison's experience suggests that your child's questions are a good
indicator of what he is ready to hear. Questions about life expectancy
are more likely to arise when a child reaches secondary school age although
it could be sooner.
It is important to inform the principal and the class room teacher of
your son's needs, so that you can control the situation. The school needs
to know how you want the situation dealt with. Education Department integration
officers can be extremely helpful at these times. They can also liaise
with the school on your behalf over the numerous problems that can arise.
An example of what a teacher or the parent themselves could say to primary
school children is: "Peter has a muscular problem. He has difficulty walking
and will eventually be in a wheelchair. There will be times when we would
like your help."
The Morrisons feel that attending an integrated school is better for skills
acquisition and if your child can cope in an integrated setting they feel
this is to be encouraged. In the latter stages they used a blend of some
time attending a special school and some time at an integrated school.
Some boys however do benefit from specialist education and the services
provided by paramedical staff. It becomes a case of assessing your son's
potential. Motivation becomes a significant factor in educational advancement
People live a different lifestyle when they know they have a reduced life
expectancy. However it is important that educational programs do focus
a person to find meaningful work once they have left school.
Many boys stay at school even though it no longer has anything to offer
them. This is an area of real concern, especially as many boys are living
longer. To find some meaningful part-time work is very difficult and it
requires an understanding employer. The Morrisons feel there is considerable
potential in computers and switchboard operation for Duchenne muscular
dystrophy boys and possible sources of employment in this area need investigating.
The Morrisons went through an intense grieving period for the two years
immediately following their son's diagnosis. They remained basically alone,
as a way of coming to terms with their challenge. Social work assistance
was offered, but they didn't feel this was appropriate for them. A trip
to Disneyland during this grieving period was the first of many annual
holidays for their family and it was during these holidays that many happy
memories were made. Thus followed a period of acceptance and a sense of
hope. What evolved then was a need to try to make life as normal as possible
and to develop some kind of plan to deal with things as they arose.
Support from other mothers with children with Duchenne muscular dystrophy
became very important and an essential part of the coping process. Support,
comfort and good friendship from others "in the same boat" became an important
part of their lives. They were no longer dealing with the issues alone.
Peter enjoyed social contact with a broad range of people. He maintained
friendships with boys from early primary school days, and also had friends
with Duchenne muscular dystrophy and other disabilities. This was very
important to his development. Contact with "normal kids" helped to take
away the feeling of being different, while contact with other Duchenne
muscular dystrophy boys gave him the opportunity to be just himself. Duchenne
muscular dystrophy boys together can talk about how they feel and how
they deal with certain situations in a way that is different from talking
with their parents. This peer support is invaluable, something which plays
a big role in the life of any teenager or young adult. Schooling (both
integrated and special), scouts, electric wheelchair sports, camps and
occasional respite care provided the arena for this broad social experience.
to nurture the caregivers
Mrs Morrison worked at various times through her son's life. This was
very important to her. At work she could be herself and found relief from
having to respond to the ever present needs of her family. Not everyone
is in the position to find flexible work, but the principle here is important:
the need to recognise your own needs and to make time for something that
is enjoyable for you. In her own words,
need to feel good about yourself and good about your child".
Person With Duchenne Muscular Dystrophy
At seventeen years of age Tim currently attends secondary school, completing
Year 11. He is a delightful person, typically struggling with the challenges
of any person of his age: school, making friends and thinking about what
he might do when he leaves school.
He was diagnosed as having the disease at the age of seven. He lives with
his parents who have encouraged him to lead as normal a life as possible.
All of his schooling has been at a regular school. He has asked for no
special treatment at school. He aims to earn respect and develop friendships
through his own maturity in relating to other people and through his own
efforts. Tim learnt that Duchenne muscular dystrophy imposed a reduced
life expectancy when he was 12. He does not seem to struggle with this
fact, but rather seems to have developed an acceptance with which he is
comfortable and has a way of making you feel comfortable too.
This does not mean that life is not without its hurt. For example, when
he excelled at school work, friends who had scored lower marks, claimed
his marks were higher because he had special treatment. This hurts Tim
to the core, as his results have been achieved solely due to his hard
effort. How he deals with this sort of hurt has matured. At one stage
he decided to put in less effort with his school work, to avoid dealing
with such comments. Now, he tries to put in as much effort as he can.
If he does get hurt, he likes to go off on his own, to cry or to release
his anger. Some days he does ask, "why me?". At these times he thinks
his family find him harder to get on with. Tim enjoys activities with
scouts, camps and spends occasional weekends at respite care. In the coming
year he has decided to take up hockey and to move out of home. His reason
for deciding to take up hostel living is partly due to the demands his
family face, and partly to experience more independent living.
His ultimate goal is to earn his own source of income. He wants to do
this in the field of computing. Tim believes the following points have
been valuable to him. Parental support is vital. His parents attitude
of encouraging independence and supporting him in making his own decisions
has contributed a great deal to his quality of life. Be as independent
as possible. For instance, for as long as he was able, Tim dressed himself.
It would have been quicker if his parents did it for him, but accepting
his slower pace has contributed significantly to the development of his
self worth. A small task with a big reward.
People say things that hurt your feelings. With maturity you will learn
when it is appropriate to assert yourself and tell them they are wrong.
When there is no point in saying anything, remove yourself from such people,
deal with the hurt, cry or scream, and then move on. Always try to do
your best. You may not always be successful, the important thing is knowing
that you tried.