EDUCATION
For some families the diagnosis of Myotonic Dystrophy is made via their child who may have some learning disabilities. Myotonic Dystrophy affects learning and makes it more difficult for children to learn certain tasks. For some reason some tasks are more difficult for these children. Here is some additional information on Learning disabilities from the Netherlands
Its important to begin education at the earliest level. Birth-3 programs are available in the USA. This intensive help will optimize the educational structure for the child. Most children will begin in Special education classes before kindergarten. Because of the child’s ability to imitate, mainstreaming in regular school should be considered. Here is some specific information:
From the MDA USA: Dr. Ed Goldstein MDA Clinic Director Atlanta Georgia
Q: My child is in an integrated kindergarten. Are there any specific strategies for learning that the school should be aware of?
A: The Spectrum of mental development in children with CMD is quite different from that of the general population. In some studies, 2/3 of these children are mentally retarded (MR); meaning that they have a persistent, global delay in their cognitive development. In addition to varying degrees of mental retardation, many CMD have learning disabilities (LD). These are problems in selected areas of mental processing, which interfere with certain aspects of the educational process. Many of the patients that I follow have a component of Attention Deficit Hyperactivity Disorder (ADHD), which is typified by hyperactivity, impulsivity and distractibility. In the absence of significant heart disease, these ADHD symptoms can sometimes be treated with the use of stimulant medications like Ritalin or Dexedrine. Finally CMD patients are described who have elements of Pervasive Development Disorder (PDD) which is characterized by decreased reciprocal social interaction. What I typically recommend for children is the performance of psychometric testing by a developmental psychologist. This is a test of his mental capabilities and will define the elements of MR, LD, ADHD, PDD and provide insight into the nature of some behavioral problems. This type of testing is not inexpensive, often costing $1000 to $2000. However, good Psychometric Testing is the only way that you can gain appropriate insight into the nature of your child’s thought process, thereby permitting you to make informed decisions about school environments, rehabilitative therapies and behavioral interventions. Your local school system may provide this testing for you.
The variability juvenile and congenital forms of the disease will make management of the educational process unique to each child. Some of the important issues to deal with are the behavioral issues that arise. Things like incontinence, learning disability, speech problems need to be dealt with. We are still searching for more information on these subjects.
More information on education and learning strategies are needed. If you are an educator please write and send information about what you are doing in your classroom!
