What Every Therapist Should Know About RS
The girl with RS often appears non–compliant or uncooperative and disinterested. Actually, she knows quite well what she wants to do, but she is simply incapable of making it happen because of her severe apraxia. She knows what she wants to say, but cannot say it. Given proper support and encouragement, she can make active choices. Having control over what she does is powerful motivation, which leads to greater cooperation and success. The therapist must capture her attention and maintain emotional contact with her throughout the therapy session. If she feels too much pressure, she will withdraw and the benefits of therapy will be limited. Verbal input from the therapist is vital and can help her motor planning. Don’t talk down to her.
Therapists and parents should be realistic about treatment goals, but not hopeless. Too often, goals are based on outdated literature that refers to RS as a degenerative disorder. We have come a long way in realizing that RS is not degenerative, and girls can continue to learn and gain skills throughout their lives. RS is no longer seen as a disorder with a progressively downward turn. Therapies are essential for the development and maintenance of skills.
We know that the greatest handicap for the girl with RS is the enormity of her physical impairments. This often overshadows her ability to prove her knowledge and understanding. The girl with RS understands far more than what meets the eye. She is capable of taking in much more information than she can give out. Until recently, girls and women with RS have been classified as mentally retarded with little or no room for improvement. Intuition has always told us that she understands a lot. Recent scientific studies have illustrated this point.
With many disorders, repetition of the same activities over and over is reinforcing, and in time, will be learned. However, in RS, no amount of repetition will completely restore hand function. It is not a matter of learning; it is a matter of making the brain connection necessary to carry through the required movement. Providing a variety of activities can lessen boredom and motivate her.
It is important to recognize that girls and women with RS have a severe delay in processing information. Apraxia makes it impossible for her to both think about it and do it as well. She does far better when she acts instinctively, without trying to figure out the movement or action in her head. It will take her longer to respond, so be patient with her efforts.
Finding positive and motivating activities that appeal to her emotions works best. Be patient. Giving verbal directions that call for her to think before she acts, may interfere with her ability to do so.
Since she uses one sensory channel at a time, looking and touching at the same time are as difficult as doing math and calisthenics at the same time. Choosing one impression at a time can greatly enhance her ability to concentrate.
Therapists should know that many of the behaviors seen in RS, particularly hand movements and breathing irregularities, are not under her control. They are happening to her, not by her. She can no more stop her hand movements, tooth grinding or hyperventilation at will that we can stop our hearts from beating at will. These behaviors increase when she is stressed and under pressure to perform. Instead of making demands, a positive approach with strongly motivating materials can help her temporarily overcome the severe apraxia and succeed. This is one reason why she is so successful at picking up pieces of food when she is incapable of picking up other objects, and why she can scratch her nose or rub her eyes when they hurt.