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早療文章報導

 
每位治療師應該瞭解的雷特氏症相關問題 黃雅君 翻譯

雷特氏症的女孩經常顯現出不服從不合作以及對任何事不感興趣。事實上,她相當清楚她想做什麼,但由於她嚴重的失用症使她就是無法表現出來;她知道她想說什麼, 可是就是無法說出來。給予適當的支持和鼓勵, 她就能主動做出選擇;讓她能夠自己決定她想做什麼是一種有力的動機,更能因此產生有效及成功的合作關係。在治療的過程中治療師必須獲得她的注意以及與她保持情感上的互動如果感到太多壓力,她會退縮,並且治療效果有限。治療師的口頭提示十分重要,並且能幫助她計畫行動。不要對她口出惡言。

 

治療方面 

治療師和父母對於治療目標應抱持不絕望且實際的態度。我們太常依過時的文獻指稱雷特氏症是一種退化的疾病,。走過一段長久的路,我們終於了解雷特氏症並非是退化性症狀,雷特氏症的女孩能在生活中學習與獲取新技能。雷特氏症不再被視為一種持續退化的病症而各種治療法對於其技能發展與維持是很重要的。

我們知道,患有雷特氏症女孩最大的障礙就是她的生理上受到大量的損傷,這經常讓她難以證明自己的知識和所了解的。患有雷特氏症的女孩所理解的遠比我們所看到的還要多,她能吸收的資訊遠比她展現出來的要豐富。一直以來,患有雷特氏症的女孩和婦女被視為是幾乎沒有或完全沒有進步空間的心智障礙者但是直覺總告訴我們,她其實知道很多。最近的科學研究說明了這個觀點。

和許多障礙一樣,一再重複相同的活動能增強動機,並且常常學得起來。但是,對雷特氏症者而言,大量的重複動作也將不能完全地恢復手功能,這和學習無關;這和必要的腦部連結以帶動所需的運動有關。提供多樣化的活動可以減輕乏味感並給予刺激。 

認知到雷特氏症女孩與婦女在處理資訊的能力有嚴重的遲緩是很重要的,失用症造成她無法同時思考及做事。當她不需要試著在腦裡尋求運動或行動模式而能夠依本能做事時,她會做得更好。當她需要花較久的時間做出反應,所以對她的努力要有耐心等待。

找到正向而且具能引起動機的活動看起來能夠使她情緒表現最好。要有耐性,在她行動之前給予口頭指示要她先想一想,可能會干擾到她做這件事情的能力。

因為她一次只能使用一種知覺管道,所以同時看與觸摸就像要求她同時做算術和女子柔軟體操一樣困難。一次選擇一個感官輸入可以大大地提高她的注意力。

治療師應該知道,雷特氏症的許多行為,尤其是手部動作和不規則性的呼吸,都是她無法控制的。這些是不由自主的行為,她不能停止她的手部動作,磨牙或過度換氣,就像我們也無法隨心所欲停止我們的心跳。當她在被要求表現的壓力下,這些行為將會增加。不要使用命令,相反的使用具強烈引發動機的材料的正向方式,能夠幫助她短暫地克服嚴重的失用症以及締造成功經驗。這就是為什麼她能夠很成功的撿起一片片食物而無法成功的撿拾起其他物品,而同時這也是當鼻子或眼睛受傷時,她能夠抓鼻子或摩擦眼睛的原因。


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.

 

Treatment Aspects

 

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 Too often, goals are based on outdated literature that refers to RS as a degenerative disorder.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.
 
相關連結:www.terc.tp.edu.tw/netdoc/3.doc
發佈時間:2008/2/22 上午 09:29:07
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