Previous studies have found a big difference between teenagers and younger children in terms of the flexibility and choice afforded to teenagers with reference to sleep timings (Moran-Ellis and Venn, 2007). Irrespective of the child’s age parents, in the main, retained control and supervision of ‘bedtime’
and the ‘relocation’ to the bedroom but once in their bedroom the teenagers decided for themselves what they did and when to actually go to sleep. Moran-Ellis and Venn (2007) discuss how this often allowed the teenagers the opportunity and privacy to socially interact with friends through the use of mobile phones and the internet. This section will discuss the autonomy, choice and control of the children in my research with reference to sleep timings and practices and highlight the differences evident between children with severe CP and those without (siblings and children with mild CP). This supports the work of Watson et al. (1999) and illustrates the heterogeneity of children with CP. The differences raised are most evident when comparing the older children that took part in the research.
The degree of autonomy and choice reported by Moran-Ellis and Venn (2007) was not as evident for the teenage participants taking part in my research, but this may be because the oldest participants were only 13 years old so at the lower end of the teenage age range. However, the ways in which autonomy and control, with reference to sleep timings, is coveted and the possible process by which it develops and increases was apparent in some of the discussions with the children, specifically those with mild CP and the siblings. Often a move towards independence in choosing when to go to sleep was demonstrated by the young people asserting themselves by small acts of rebellion against their parents as described by Joseph (9 year old sibling).
169 Interviewer What’s your usual routine leading up to bedtime,
what do you do?
Joseph Um... play my DS, mum yells at me ‘Joseph, it’s 8 o’clock, go to bed’ so I go ‘OK’ and I get into my underwear, go into bed and read for 2 hours...
Interviewer Two hours?
Joseph Yeah, and I’m meant to go straight to sleep at 8.
Interviewer Right, so does mum or dad come and check on you?
Joseph No, because whenever they come up I just hide the book onto my chest.
(Joseph Cooper, 9 years old, younger sibling)
This provides an insight into how there is a real desire for mor e agency, independence and freedom of choice of when to go to sleep for siblings. This is further illustrated by Ellen (13 year old sibling), who describes how she sets about achieving the sleep time that, in her mind, is justified.
Interviewer Tell me what happens leading up to bedtime?
Ellen Ummm... usually I get ready and my parents tell me off as I am not in bed yet, and I say goodnight to Brian [older brother with CP], and I read for like an hour (laughs). My parents think I read for just a little bit but I use a torch afterwards.
Interviewer Do you?
Ellen Yeah.
Interviewer So there is a lights out time?
Ellen Yeah, it is usually bed at nine, and lights out at like half nine or something...
170 Interviewer Ok, so bed at 9, lights out at...
Ellen Between nine and half nine.
Interviewer OK, but then not actual sleep until a bit later?
Ellen Yeah, I am not tired at the time that my parents send me to bed, they don’t understand that teenagers at this age don’t go to bed that early anymore, they go to bed at half nine or ten.
(Ellen King, 12 years old, younger sibling)
Ellen justifies her secret torch use by claiming that she is not tired at the enforced ‘lights out’ time and by comparing (and thus identifying) herself with other teenagers, who she perceives, to stay up later. There are two points about Ellen’s justification that are interesting to note. Firstly, that at 12 years old Ellen already identifies herself as a teenager. Secondly, Ellen believes that other teenagers go to bed at half nine or 10 o’clock. This is only approximately half an hour later than Ellen herself is ‘sent’ to bed. Therefore, the difference between what Ellen believes to be an appropriate sleep time and what her parents
‘enforce’ is quite small.
It is less clear from the interviews how, and if at all, young people with severe CP could assert some independence in relation to their bedtime and night sleep. As discussed with reference to the ‘lie-in’ and morning time waking there is evidence of an age-based process whereby as children grow older their autonomy and choice about the timing of sleep increases. However, children with severe CP are unable to follow this path. In the same way that they are reliant on others to remove them from their beds, and thus dictate the start of the day they also have to fully rely on others (i.e. parents or carers) to facilitate getting ready for sleep whereby they are quite literally taken and ‘put to bed’.
This is irrespective of their age, including teenagers. Children with severe CP are physically unable to do the activities that non-disabled children do to delay and ultimately control when they go to sleep, e.g. read a book, go onto the internet, watch TV and switch their own light off. Therefore, they cannot assert
171 their autonomy and control their sleep in this way because of ‘impairment effects’ (Thomas, 1999).
Furthermore, they are not afforded the same privacy as children without disabilities in the time between going to bed and falling asleep. Five of the families of children with severe CP employed a carer to help during the time period leading up to bedtime so often children with severe CP are taken and put into bed by a parent or an employed carer after a structured schedule of pre-sleep time activities (i.e. brushing teeth, being read a story) and then the parent or carer may stay with the child until they fall asleep. The next section discusses the use of paid carers at bed time in more detail.