DMD - A Guide for Parents

Section 5

EVERYDAY LIVING & OCCUPATIONAL THERAPY :
SUPPORT, SERVICES AND AIDS

The information required to assist you with everyday needs depends on the age of your child and his mobility. However, some services are relevant irrespective of age or mobility and have been described in the first part of this section. they include:

Occupational Therapists
Royal Children's Hospital
Muscular Dystrophy Association
Respite Care
ndependent Living Centre
Learning and Living Centre

Occupational Therapists

Occupational therapists, along with physiotherapists, are skilled in assessing and solving the physical problems encountered in everyday living.

Everyone needs to be independent and the problems encountered by boys with Duchenne muscular dystrophy are shared by many people with physical disabilities. Stairs, rough or hilly school grounds, access to the toilet and bathroom facilities, are a few of the difficulties to be overcome. These problems are not only experienced by boys with Duchenne muscular dystrophy. They are shared by many people with physical disabilities.

For most families, the use of a few aids and some minor home modifications are all that are required to allow as much independence as possible. Occupational therapists can advise on ramps, handrails and equipment such as shower chairs, extended shower hoses, bottles for toileting, pick up tongs, levers on taps, height adjustable tables and other aids. They can offer advice on techniques for transferring and lifting and the availability of hoists. They can visit the school or home to assess what is required to promote access and independence.

Some families will find that their family home, in the long term, will be unsuitable for wheelchair access or will not be appropriate for things like bathing or toileting. If it is necessary to renovate or to move, it is vital that the advice of an appropriate occupational therapist be sought before proceeding.

The Royal Children's Hospital

In addition to medical services the hospital offers a wide range of paramedical and support services. These include social work and counselling services, physiotherapy (including wheelchair advice), occupational therapy (including advice on home modification and rehabilitation to achieve employment). The Royal Children's Hospital also has a Department of Child Development and Rehabilitation with staff experienced in the area of disability.

Muscular Dystrophy Association

As a result of ongoing contact with families, the Muscular Dystrophy Association has wide experience in dealing with problems that families encounter. The association often provides a good first point of contact. They can direct you to organisations offering different skills, information and support appropriate to your son's age and stage of development.

The MDA can put you in contact with other families. They have their own community support worker who provides support to families including home visits to country people. The association has its own Saturday Afternoon Group for boys and runs a number of camps each year. Regular parent groups are also held across the state.

Respite Care

Respite care provides families with a break from the pressure of caring for a child with a disability. It also allows the child contact with new friends and experiences. Respite care is available from a number of organisations.

Local Councils

This service varies between councils but it is possible to arrange respite care for part of the day and on a regular basis if required.

Interchange Family Program

Families are recruited from the community to provide weekend or overnight care. Contact can be frequent but a minimum monthly contact is encouraged. The program endeavours to offer respite care to families and social experience to the hosted child. Most regions in Victoria are covered by this program.

Respite Care

MDA provides, weekend and school holiday respite care through CampMDA, OperationMD! ShortBreak and OperationMD! SWAP..

Independent Living Centre

The Independent Living Centre, is an equipment and information service for people with disabilities. The centre has a telephone service staffed by therapists. It is also possible to visit the centre with a therapist from the Royal Children's Hospital.

The Microcomputer Applications Centre is also located at this centre. They offer a range of services aimed at assisting people with disabilities, firstly to select micro-electronic equipment that is appropriate for their specific skills and needs and then to use it effectively.

Learning and Living Centre provides a range of short courses designed to meet the needs of people with a disabilities. They include programs on recreation, personal development and pre-vocational development.

Benefits & Concessions

Federal and State governments provide a range of support, benefits and concessions. Some of these can be viewed here.

You are not alone

At the time when a child is diagnosed as having Duchenne muscular dystrophy his parents feel very alone, especially those who have never heard of muscular dystrophy. They feel that they are the only people in the world with a child with this disease. They worry about how they will cope, how they will tell other members of the family and how everyone will deal with the situation. Parents can find it very helpful to share these challenges with another parent who has a child with muscular dystrophy, particularly if that child is at the same stage as their child.

The Muscular Dystrophy Association can link parents with another family for this kind of support. Both the association and other families with a child with Duchenne muscular dystrophy, have a very good idea of how parents feel and will not impose themselves. Help is available when it is required.