A Guide to Our Parents
MISSION STATEMENT & Short History
The Muscular Dystrophy Foundation of South Africa is a non-profit organisation which supports people affected with muscular dystrophy and neuromuscular disorders and endeavours to improve the quality of lifestyle of its members.The Muscular Dystrophy Research Foundation of South Africa (MDRF) was founded in 1974 by Mr and Mrs Newton Walker of Potchefstroom who, at the time, had a son affected with Duchenne Muscular Dystrophy. They, together with Wally Gough, Chairman of the Rotary Club of Potchefstroom and representatives of Cripple Care Association formed the Foundation. They felt there was a need to reach out to other parents and families in a similar situation and also to support research into this disease with the ultimate goal of finding a cure.
Every new day holds promise for children everywhere, even for youngsters affected with muscular dystrophy. The only difference is that children with muscular dystrophy cannot do things they enjoy without your assistance, patience and understanding and an ever-present helping hand. They will be whatever you enable them to be. Your role will not be easy, but remember that you can find the strength and guidance to care for them. Parents’ natural grief upon learning that their child has muscular dystrophy can make it difficult to absorb all the implications at once. It is therefore important to visit the doctor, counsellor or social worker to discuss the matters of importance to you. Genetic counselling may also be discussed, especially after the initial implications of the diagnosis have sunk in.
WHAT DO YOU TELL YOUR CHILD?
Very young children will not understand any details of the diagnosis, but those who are already aware of their problem will welcome an opportunity to discuss what is happening to them. How much a child should be told depends on their own curiosity and emotional make-up. As a general rule, do not volunteer disturbing information needlessly. An opportunity might arise when they hear something relevant on the radio or television – many have a surprising understanding of the disorder. Do you need to prepare your child about needing a wheelchair? They will welcome it without explanation or ceremony when the time comes. It will offer them so much freedom and security that they will soon be showing it off with pride and delight.
WHAT ABOUT ME? (Brothers & Sisters)
Because special attention is given to the affected child, other children within the family may feel jealous. Obviously everyone wishes a disabled child to live the fullest life possible, and the nature of MD and the deterioration of strength make more attention and assistance necessary for the affected child. This is not favouritism but essential care, and this should be carefully explained to the child’s siblings. It is therefore important to help brothers and sisters to realise that they are equally loved and encourage them to have empathy with the affected child and behave lovingly towards them.
FAMILY & SOCIAL ASPECTS
The natural inclination of parents is to protect their disabled child from knowledge of the disorder and from the apparent cruelty of the outside world, but this could lead to overprotection. This may frustrate the child’s normal impulse towards independence, especially in early adolescence, and may hamper their ability to make friends. Friendship both within the family and outside is very important for the affected person. Parents should not be embarrassed about exposing their child within the community. In this respect, young disabled adolescents should be granted the space and independence to test their own emotions, creativity, social capability and be encouraged and supported to develop their leadership abilities.
Education is important to everyone, including disabled individuals, who have the same potential as anyone intellectually. Physical challenges at school such as moving from class to class, climbing stairs and carrying a suitcase should be overcome by arrangement with the headmaster, teacher and schoolmates. The presence of occasional pupils in wheelchairs in any ordinary school may in fact be an advantage to everyone, giving the affected children the opportunity to live in a regular environment, and their schoolmates the opportunity to recognise the problems of the disabled. Special schools for the disabled, however, give them opportunities to see themselves as only one of a great many disabled people. Another advantage of special schools could be the services available, such as physiotherapy, nursing supervision and a chance to learn to use special equipment and techniques to overcome physical difficulties. The best solution should be sought for each individual child. Often the child will first attend the so-called ‘normal’ (regular) school, but they should change to a special school before their needs become critical and result in an emergency situation.
GENERAL HEALTH MEASURES
Your child’s general health is not necessarily affected by their muscular dystrophy condition, but the following points should be noted: – Affected children will be very susceptible to colds, which could lead to bronchitis and pneumonia. This is dangerous as their muscle weakness makes them less able to cough effectively. If you are worried, call a doctor. Never neglect a cold. Act swiftly. – It is important to avoid unnecessary bed rest or other forms of immobility, as this could in fact speed up the weakening of the muscles. – Obesity is a common and very trying problem. Generally it is due to the combination of overeating with the inevitable lack of muscular activity to “burn up” the excess intake. Everybody feels sorry for affected children and too many people can think of no better way to express their feelings than to provide the child with sweets and luxuries. There could be no more misplaced kindness. Excess weight restricts mobility even more and puts further strain on the carers. Restrict carbohydrate foods and if possible improve protein intake. If these habits are followed from an early age, no sudden changes will need to be made during the early teen years when other frustrations are already occurring. – Normal routine immunisations should be carried out. Doctors recommend annual prophylaxis against influenza.
THE EMOTIONAL PICTURE - PARENT & CHILD
Looking after a disabled youngster is not an easy task and there are more than the normal share of problems. – One parent-made problem is the tendency to be too anxiously sympathetic, resulting in overprotectiveness. A feeling of self-sufficiency and independence is so necessary for the child’s mental health. The parent should institute a schedule of everyday activities – simple things that the child knows they can do with little or no help. They will learn self-respect that comes from achievement, which is so vital for maintaining an interest in life. – Television can be an enjoyable pastime but it can easily become an escape at which children spend most of their waking hours. There is nothing wrong with TV in moderation. – Naturally, at times, feelings of depression could occur within the family, but it is not common for children who have muscular dystrophy. Parental feelings of guilt and a tendency to blame oneself is often the reason for depression. The sooner you rid yourself of this blame the better. Nothing about the situation is your fault. – This brings us to the point of your own needs. In your devotion to looking after your disabled child, do not forget your own needs. Try to stay involved with social, community or other matters of interest to you. Allow yourself short breaks of a few hours every week. You need time off to retain perspective.
There cannot, of course, be a single right answer to every problem. Every child’s set of circumstances is different, and the advice given should be shaped to fit the individual. But remember that you are not alone with your problem. The Muscular Dystrophy Foundation of South Africa will give you as much support as it can. Join the Foundation and meet others with similar problems. Comfort and advise each other by telephone or through support group meetings.
The treatments and drugs mentioned in this fact sheet are for information purposes ONLY. Please consult your physician or other health care specialist for information regarding the use of any of the above. The MDF encourages duplication of this fact sheet, under the following condition: that it is duplicated in its entirety, including the MDF logo and full text. Only individuals authorised by the MDF may make changes to this fact sheet (the information “updated by” and “last update” should be completed). Alterations to this fact sheet by any other party are strictly prohibited.
The role of the MDF in South Africa
- Local Clinics: Please contact your local MDF branch for further information
- Independent Living Centre (ILC): 011 482-5476
- Disability Info and Care (DIC): 011 917-3284
- Parking concessions: Application to the Traffic Department of your local authority. Criteria: (a) if you need the extra width as provided by the special parking bays, or (b) if you have a problem with walking long distances.
- Special equipment: Phone either ILC or DIC for information on where to get special equipment.