MEANINGFUL ACTIVITIES OF CHILDREN WITH MITOCHONDRIAL DISORDER 75 3 In some cases, disabilities resulted in personal struggles or challenges. Girl (adolescent): “Next week we are going to a theme park (…) Then we will have to walk a lot. I do not know if I will be able to keep up (…) Actually, I do not think I will be able to walk for that long.” Interviewer: “Have you ever had to walk that much before?” Girl (adolescent): “Yes, when I go shopping with my mom or my friends (…) I always get very tired at some point. Then all I want to do is sit down, and I cannot stand up any more. Then I get very tired and my legs start to give way.” Interviewer: “And what do you do in that situation?” Girl (adolescent): “I do not know (…) I do not want to be in a wheelchair because it makes me look stupid (…) like there is something wrong with me (…)” Interviewer: “But what do you do when you are very tired?” Girl (adolescent): “I do not know.” Performance versus avoidance In some situations, children did not (want to) perform an activity due to their disabilities and the experience when they performed the activity. A mother mentioned that her child avoided activities that were too tiring or difficult for her, such as cycling or crafting. Children also mentioned that they did not perform activities that were too difficult or not allowed due to their disabilities. Interviewer: “Are there things you cannot do that you would like to be able to do?” Boy (adolescent): “Drive a car, I cannot do that at all, I am not allowed to take my driving test.” Interviewer: “Not at all?” Mother: “No, he is only allowed to drive at 6 km/h, so that is the electric wheelchair. The problem is that he... , multitasking is very difficult for him. If he has to do two things at once. He cannot even ride a bike because of his balance. At least not a normal one. He can ride a three-wheeler, but not a two-wheeler. No, that is just too dangerous. He cannot ride a two-wheeler anyway because of his balance. He can manage a three-wheeler, but he cannot watch out for the traffic yet. He has had three, four situations with a bike... they were really...” Boy (adolescent): “The last one was the one with the suitcase when I took the bend too tightly on the three-wheeler. I got a nosebleed too.”
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