In families where child sleeplessness was a common and regular occurrence children and young people were asked about the possible impact on parents and other family members. This was particularly relevant for those families including a child with severe CP. Once again older children and girls were more aware and forthcoming of how it might feel for others in the family when they have had little sleep or are tired due to the child with severe CP waking during the night.
182 Interviewer ...how do you think mum and dad are?
Ellen They are pretty tired.
Interviewer How can you tell if they have had a particularly bad night?
Ellen ‘Cos they are grumpy and they are ratty with me.
Interviewer But you know why they are tired, I guess?
Ellen Yeah, I know why so I try not to get annoyed with them…
(Ellen King, 12 years old, younger sibling)
Ellen recognises the impact of her brother’s sleeplessness on her parents but it is also important for her to highlight how this then also impacts on her. Other siblings also discussed how their disabled brother or sister’s sleeplessness impacted on the family as a whole with specific reference to not being able to do activities together because of parental and child tiredness.
Willow Because it [her brother’s sleeplessness] makes us all tired, more tired, so we don’t go out much. We are so tired.
(Willow Edwards, 10 years old, older sibling)
Furthermore for Willow, her brother’s sleeplessness also impacted on her own social life and having friends to stay overnight at her house.
Willow And then I’m not that keen on letting anyone come to sleepovers at my house anymore, because of Stanley [brother with CP].
Interviewer Why’s that?
Willow I don’t want him to wake people up and I don’t, um…. if he does get to sleep, but then they are like a
183 bit like Izzy [a friend] and walk round waking everyone up, and if they open the door and wake Stanley... it will wake Alex [other brother] up and then I can’t get to sleep again.
(Willow Edwards, 10 years old, older sibling)
Some of the children with severe CP especially those who were older were able to recognise that their sleeplessness and requiring of parental assistance at night had a negative impact on their parents. Symbols chosen by some young people with severe CP in response to questioning about how their parents might feel when they have been awake in the night included ’tired’, ‘don’t like’,
‘worried’, ‘confused’, and ‘dream’. The symbol for ‘dream’ was chosen by Libby:
Interviewer So when thinking about how mum and dad feel when they’re tired, the last word you chose was
‘dream’, is that right?
Libby (Vocalisation and head movement upwards indicative of Libby’s Yes).
Sally [carer] Do you want the word ‘dream’ Libby?
Libby (Vocalisation and head movement upwards indicative of Libby’s Yes).
Interviewer OK, so you think when they’re tired they dream... the next day?
Libby (Vocalisation and head movement upwards indicative of L’s Yes).
Sally Oh, like daydreaming?
Libby (Vocalisation and head movement upwards indicative of Libby’s Yes).
(Libby Cooper, 12 years old, severe CP)
184 Other young people and children were less aware of how their parents felt during the day as a result of being woken regularly and persistently at night.
For those children whose parents get up in the night, every night, this is the norm and there may be no other situation with which to compare.
Interviewer Can you tell, Joseph, when they’ve [parents] had to get up a lot in the night [to Libby, his sister with severe CP], are they different in any way?
Joseph No, because they have to get up every night of all my life, so I can’t really see any difference.
Interviewer No, OK. Say they’ve had a really bad night, like they’ve had to get up loads does it affect them, do you see a difference then?
Joseph No
Interviewer No, ok, why do you think that is?
Joseph Because they’ve got use to it or sometimes I think different things. One thing is either they’ve got use to it or the other thing is they just fall asleep at work.
Interviewer (laughs)
(Joseph Cooper, 8 years old, younger sibling)
This also illustrates how Libby’s (child with CP) sleeplessness and the resulting sleeplessness for the parents has been long lasting and pervasive as Joseph cannot remember it being any different. This ties in with research, discussed in Chapter 2, that reports sleeplessness in disabled children as persistent over time (Quine, 1991; Wright et al., 2006; Wiggs, 2007). It also hints at the work parents do to protect their children from the reality of sleeplessness and the impact this has on daily life.
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7.7 Conclusion
This chapter has outlined the analysis of data that highlights the social context of children’s sleep. In line with existing research (Williams et al. 2007) it was found that children were able to talk ‘around’ their sleep rather than explicitly
‘about’ their sleep. The practices, actions and interactions leading up to and following night-time sleep emerged as significant. This focus, specifically on the bedtime routine, allowed for differences to be examined between children wit h severe CP and siblings/children with mild CP. Differences were also dependent on age. Older children with mild CP and older siblings were beginning to utilise the time leading up to sleep to assert their independence and autonomy and to attain periods of privacy within the household. They were able to have some, increasing with age, control over their own sleep practices, especially regarding the timing of their sleep. This was not evident for younger children or for children with severe CP, irrespective of their age.
The bedtime routine is conceptualised as a ‘family practice’ and, as such, this example of ‘doing’ sleeping (Taylor, 1993) provides a lens through which to view ‘doing’ family and leads to a greater understanding of how sleep is embedded within family life. The employment of paid carers to help ‘manage’
the bedtimes of children with severe CP was an interesting topic of discussion and also provided insight into the meanings of family. When carers had been employed for a number of years there seemed to be a widening of the definition of ‘family’ to include them. This was especially evident in the discussion with Catherine Cooper (mother) who referred to their long-term carer as ‘part of the furniture’. However, for others, for whom the presence of a carer to oversee bedtime was a new experience, the carer was not considered as part of the family. This was evident from Oliver Davis’ (child with severe CP) experience and illustrates that familiarity and time (i.e. how long the carer has been employed for) play a key role in the definition of family and ‘family practices’. As the employment of paid carers to ‘manage’ bedtime is specific to children with severe CP, differences are once again highlighted between children with severe CP and siblings/children with mild CP with reference to sleep practices.
186 An exploration of the data on the impact of sleeplessness emphasised the embodied nature of sleep, with children referring to how sleeplessness made them feel and function, both emotionally and physically. Discussions focussed on the impact of sleeplessness on others emphasised, once again, how sleep (or lack of) is embedded in family life and how the sleeplessness of the child with severe CP can affect the family as a whole. However, this was not evident for all the young people as some children did not seem to be aware of the effects of sleeplessness (because of regular night waking to attend to their child with severe CP) on their parents. This may indicate that due to the persistent and long lasting nature of sleeplessness for children with severe CP, the negative effects on the parents are not recognised by children as there is not a time, when sleeplessness did not occur, to compare with.
An exploration of the sleep practices and organisation of sleep among children with CP and siblings is further discussed in the next chapter which analyses the data from children that focussed on the actors, activities and artefacts that helped or hindered their sleep. This chapter will continue to emphasise the social context of sleep and how it is embedded in family life.
Furthermore, an analysis of the differences apparent between children with severe CP and those without, as well as differences based on age, will further highlight sleep practices as significant in the development of autonomy and independence.
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