Down Syndrome South Afica









Youth - Information for people with Down syndrome and other Intellectual delays


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Self Advocacy News

We held Self Advocacy training for a selected group of young adults with Down syndrome and other Intellectual delays on the 18 and 19 May 2013, this also gave us the opportunity to vote for a new Chairperson and Vice Chairperson of the Self Advocacy movement of Down Syndrome South Africa. We are pleased to announce that Thenjiwe Ndebele who has Down syndrome was elected as Chairperson and Kagiso Nwandula who has a Intellectual delay was elected Vice Chairperson. We congratulate you on your nominations and welcome you to the Down Syndrome South Africa board as well. Thank you to Hayley Rehbock past Chairperson and Ephraim Mohlakane past Vice Chairperson who served their term well! 

We at DSSA have several books and information for parents of teenagers and adults with Down Syndrome and other intellectual delays. Please contact us on 0861-DOWNSA (369-672)or email dssaoffice@icon.co.za if you need any information on our Self Advocacy prgrammes for young adults with Down syndrome and intellectual delays. 

For more information on the Self Advocacy Movement of South Africa SAMSA (a DSSA programme - Check out the menu bar on the left)


SELF TALK

The following article is an excerpt from the book “Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges. Written by Dennis McGuire Ph.D & Brian Chicoine, M.D.

DID YOU SAY SOMETHING ... or were you just talking to yourself?

Do you talk to yourself? We all do at different times and in various situations. Does this mean that we are demented or psychotic? No, usually talking to oneself, or self talk, is a sign of frustration about something that you are doing. In studies with people with Down syndrome parents are often heard saying that their children with Down syndrome talk to themselves. It seems that the parents and care givers reflect deep concern that this behaviour is “not normal” and symptomatic of severe psychological problems. Research tells us that people with Down syndrome experience a significant difference between what they understand and what they are able to communicate. without proper support - friends who make the time to listen and effective methods of communication - things that seem simple to you and me may create frustration and the need to discuss things with themselves, friends or imaginary friends - for someone with Down syndrome. What can we do to held? how can we be supportive? With the trend of having people with disabilities living in community settings it is important to pay attention to understanding their challenges and providing proper support so that they may best experience that community. The support in this instance is understanding that self talk may be a symptom of frustration rather than the beginning of a disease or psychotic condition. Self talk serves many adaptive purposes. Self talk is particularly useful to people with Down syndrome. It is a wonderful means to ponder ideas and think out loud. Self talk allows people to review events that occurred int he day and allows for problem solving. It can be used to plan for future situations. As many people with Down syndrome have a problem expressing their feelings to others - self talk allows them to express their frustrations and feelings in a private space without being seen as “not normal”. It does not seem to be widely known that people with Down syndrome self talk. For some parents and caregivers, the fact that “almost everyone with Down syndrome does it” is reassuring, but the content of these conversations, their frequency tone and context can be important in determining if treatment is warranted.

HELPFUL SELF TALK

Self talk is not only “normal” but also useful. Self talk plays an essential role in the cognitive development of all children. Self talk helps children coordinate their actions and thoughts and seems to be an important tool for learning new skills and higher level thinking. This self talk serves the same useful purpose of directing behaviour for people with Down syndrome. In children without identified learning problems, the use of self talk is progressively internalised with age. Moreover these children internalise their self talk earlier. As self talk is transformed into higher level thinking it becomes more abbreviated and the child begins to think rather than say the directions for his/her behaviour. The intellectual and speech difficulties of adults with Down syndrome may contribute to the high prevalence of audible self talk. As a person with Down syndrome gets older they start showing some sensitivity about the private nature of their self talk. Self talk often occurs behind closed doors or in settings where the person with Down syndrome think that they are alone. Having trouble judging what is supposed to be private and what is considered “socially appropriate” also may contribute to the high prevalance of easily observable self talk. In the general population, self talk among older persons is frequently notable and usually easily accepted, just as it is with children. Among the elderly, social isolation and the increasing difficulty of most tasks of daily living may be important explanations for this greater frequency of self talk. For adults with Down syndrome, these explanations also make sense. Adults with Down syndrome are at greater risk for social isolation and the challenges of daily living can be daunting. It has also been found that many adults with Down syndrome rely on self talk to vent feelings such as sadness or frustration. It makes processing daily life events, as their speech or cognitive impairments inhibit communication. Often se For children, the elderly and adults with Down syndrome, self talk may be the only entertainment available left alone for long periods of time. For example, a mother reported that her daughter “Mary” spent hours in her room talking to her “fantasy friends” after they moved to a new neighbourhood. Once May became more involved in social and work activities in her new neighbourhood, she did not have the time or the need to talk to her imaginary friends as often. That adults with Down syndrome use self talk to cope, to vent and to entertain themselves should not be viewed as a medical problem or mental illness. Indeed, self talk may be one of the few tools available to adults with Down syndrome for asserting control over their lives and improving their sense of well being.

WHEN TO WORRY

The difference between helpful and worrisome self talk is not easy to distinguish. In some cases, even loud and threatening self talk can be harmless. This type of self talk could be similar to someone who rarely swears but screams out a four letter word when hitting their thumb with a hammer. Such outbursts may simply be an immediate, almost reflexive outlet for some of life’s frustrations. When self talk becomes dominated by remarks for self disparagement and self devaluation, intervention may be warranted. For example it may be quite harmless if “Jenny” yells “ I am a dummy” once right after her failure to bake a cake from scratch. However, if Jenny continues telling herself over and over “I’m a dummy and can’t do anything right”, it may be time to worry and to do something. A marked increase in the frequency and a change in tone of the self talk also may signal a developing problem. For example, “Jim” showed a dramatic increase in self talk. Jim refused to go to his workshop and to participate in the social activities that he once enjoyed. It turned out that Jim’s change in behaviour was not due to depression but his family and staff discovered that Jim was being intimidated and harassed by a new co-worker. With the removal of the bully from his workshop, Jim gradually regained his sense of trust in the safety of the workshop. Jim gradually regained his sense of trust in the safety of the workshop. His self talk and interest in participating in activities returned to earlier levels.

CONCLUSION

Self talk is an important coping tool and only rarely should it be considered a symptom of severe mental illness or psychosis. A dramatic change in self talk may indicate a mental health or situational problem. Despite the odd or disturbing nature of the self talk. Self talk allows adults with Down syndrome to problem solve, to vent their feelings, to entertain themselves and to process the events of their daily lives.