New Study on Social Integration 5/00 This is a neat study and gives some insight on what kind of support people with myotonic dystrophy need!

Many researchers comment on the Cheerfulness and lack of initiative in CMD patients.

Roig Reports that "The behavior profile of this group is characterize by marked emotional lability and social withdrawal with relatively preserved ability to imitate and maintain elementary social interaction".

In standard Myotonic Dystrophy one of the main characteristics of the disorder are "reduced initiative", "inactivity", and "apathetic temperament" and social deterioration of the families through generations has been stressed (Caughey 1963)

"While in the country in search of certain "myotonic's" homes , it was often possible to identify a residence by its neglected appearance, the obvious need of repairs, the unkempt yard and garden choked with overgrown grass and weeds, which provided a vivid contrast with the surrounding well-kept homes"

(Caughey 1963) "We have often found that affected individuals, when just mildly incapacitated, were often content to sit or lie idly for hours"

This above information is for standard Myotonic Dystrophy but does bear on CMD. Children with this disease needed to be given a push. They will tend to stay within the scope of their environment unless pushed. All means of doing so should be employed. Birth-3 programs are available in the USA. Extensive pushing is required. Because in most cases the mother has involvement with the disease they may have this "reduced initiative".

Other resources may be needed to assist in helping both mother and child with levels of activity. Important to realize is that the patients themselves do not themselves point out the inactivity. For example: "Hypersomnia (excessive sleeping) is a prominent feature of many patients with (standard) myotonic dystrophy although it is more often remarked on by relatives than the patient himself". (Harper 1972)

Even so children may not interact much with peers. They may stay at the parallel play level and not come into a true "play" area. However, children with CMD will imitate others. For such a reason mainstreaming in schools should be considered