MEANINGFUL ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 73 3 How I feel about being helped Children experienced receiving assistance differently: it even varied by activity for each individual. There were many situations in which children did not mind getting help, and they noted that getting help could be nice because it would make performing the activity easier. In other situations, children did not like to ask for help. They wanted to be able to do it on their own. The following quotations demonstrate the complexity and differences between experiences in being helped: Boy (school age): “I do not like showering because someone has to help me. I want to do it by myself, but dad always wants to help me.” Girl (adolescent): “I need help cutting up my food when we go out for a meal. I still order meat and ask someone else to cut it up for me. But I do not like asking for help. I want to be able to do it on my own.” Boy (school age): “I do not mind that mum and dad helping me go to the bathroom. That is just the way it is.” Support was provided by the social context. Children mentioned several sources of social support. Support in the social context The support that children received could be professional or from peers, family or teachers. Boy (school age): “I watch television.” Interviewer: “And who switches the television on?” Boy (school age): “I do! Sister helps.” Interviewer: “What does your sister do?” Mother: “He can switch the television on, but his sister switches the TV to the right channel.” Boy (school age): “I switch it off.” The support varied from a little help to fully taking over the activity. Mostly, activities were taken over by parents and mainly comprised self-care activities, including getting dressed, combing hair, tying laces or brushing teeth.
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