CHAPTER 3 72 Occasionally, parents or professionals arranged activity adaptations, such as adjustments to exam rules for a swimming degree or rest moments during the activity. Regular performance In the theme ‘I want to be able to…’, children also mentioned they performed several activities in the same way as their peers, a phenomenon we refer to as ‘regular performance’. Sometimes, this act meant that the children received support when performing these activities, but this support was age appropriate and therefore not experienced as support. Girl (school age): “I brush my teeth every morning and evening.” Interviewer: “Do you do that all on your own?” Girl (school age): “Yes! (...) Well, mom and dad help me sometimes.” Interviewer: “What do mum and dad do when they help?” Girl (school age): “They ‘after-brush’ my teeth.” Interviewer: “Do they think you didn’t do it properly?” Girl (school age): “Sometimes I skip a bit, that is why they do it.” I do not want to… The children were also outspoken about things they did not want. They did not want to experience discomfort caused by their disorder; for instance, they did not want to get tired or feel muscle pain. Also, some children did not want to use aids, because this use made them feel disabled. Girl (adolescent): “If I have to walk very far, I should really use a wheelchair. But I do not want to. It makes me feel like there is something wrong with me. And I do not want to feel like that.” In contrast, some children also said they were satisfied with the way things were. They did not want change, nor did they want to be able to do things better, even though their peers were better at performing the activity. Boy (school age): “I do not like playing soccer at school. I am not very good at it and the ball is too hard. But I do not mind. It is fine the way it is. I only play it at home with friends now. With a soft ball.” This wants/needs theme related with two experiences, both of which were also related to the theme ‘I want to be able to’: ‘how I feel about being helped’ and ‘things that happen when I am doing the activity make it worthwhile or unpleasant’. In both experiences, this feeling could lead to the child wanting to be able to perform the activity or not wanting something.
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