Características dinámicas

The observation of their sons’ regression and fears of the possibility of the total disappearance of the sons they knew – along with the future they had hoped for - appears to have resulted in the parents’ engagement in desperate attempts to hold on to or search for ways of rescuing the “old” son. Memories and evidence of how their sons used to be appear to provide motivation for attempts to aid their sons’ recovery. Grace explains how she used her son, Carl’s, past school reports as proof to others, and perhaps herself, of the existence of the “old” Carl:

He was somebody you know as a child who liked that liked to do things and who was liked amongst his peers…even when he was at nursery school he would take other smaller children, maybe to the toilet and help, you know things like that, he liked going to church, Sunday school…when he was in trouble with the police the other time I took that folder, about his school reports, because I had to tell the social workers, to say “I don’t know what is happening to my son” (Grace, 8, 122-135).

Attempts to help their sons involve the parents making personal sacrifices in many areas of their own lives and subjugating their own needs and desires, as the following quotations demonstrate:

Grace: _{I was even losing my own circles of friends myself, keeping myself to} myself (Grace, 17, 276).

Grace: My own private life kept on hold…I’ve got to make sure that he’s alright

(Grace, 18, 299-301).

John: I had to just go sort of part time at work (John, 20, 319).

Their accounts also include evidence of the endurance of intense suffering. Use of words such as “distressing” (Pauline, 11, 166, 212, 271), “devastating” (Grace, 26, 430; Victoria, 11, 177) and “debilitating” (John, 20, 322) were frequent. Pauline’s account captures the pain involved in her struggle to try and rescue her son from his symptoms:

It’s a burden really, you’re burdened and distressed, like your heart is bleeding in your heart really, can’t cry outside, but you cry inside cos things haven’t worked out the way that you expected it really (Pauline, 10, 153-155).

The parents discuss attempts to use different strategies to encourage their sons’ recovery, often immersing themselves in the caring role. A commonly used strategy involved conversations with their sons, and there was a sense that, whilst they were communicating, they were holding on to a part of the “old” son and, even if only temporarily, preventing the loss of their sons to the “new” state. Dennis provides a

clear example of this, describing engaging in conversation with his son as a way of keeping him temporarily out of his “zombie” state:

Dennis: constantly talking, constantly talking to him you know what I mean?

Interviewer:What kind of thing would you talk to him about?

Dennis: Everything, anything and everything. Constantly, you know what I

mean, then it was like he would kind of snap out of it for half an hour (Dennis, 11, 238-241).

The parents also described attempts to motivate and encourage their sons in efforts to restore them to their “old” selves. The following extracts provide examples of different ways in which they tried to do this and the positive effects of such strategies, even if, as Dennis’ example suggests, they are only temporary:

Dennis: _{When he was playing the Wii he was like he can act like he’s normal.}

Then he finishes playing the Wii and then it’s back again (Dennis, 13, 275-277).

Karen: _{he’s got the baby, take the baby up try to motivate him that way, or}

sometimes if I’m going out and I’ve got the car I’ll say do you wanna come with me?” (Karen, 12, 194-196).

John: we tried to get him to to do things I mean I think physical exercise is important I mean at first he wouldn’t go out at all on his own but now he does go

out a bit for a walk or a jog, as I say I try to go out on bike rides with him (John, 22, 348-350).

Other efforts to promote their sons’ recovery included proactive strategies to reintegrate them into society and encourage them to take on adult roles. Victoria, for example, discussed having “joined him (Steve) the gym” (Victoria, 15, 252) and Karen talked about asking Adam’s friends to go and see him (Karen, 11 168-171). In attempts to encourage Carl’s return to education and future career prospects, Grace took a particularly active role:

Grace: I must think ahead and probably be financially secure in future in such a

way that we can even employ him Interviewer: Right

Grace: So that was my aim now to say “if I do that, if I do that, if I do that” like

now with the work I do, I do some freelance work whereby I need a PA, sometimes to record and do the reports, so if he if he knew about IT he would do the reports, you so I was now thinking ahead to say instead of me going back to him to say do this in the meantime you know let me go ahead and sort of equip myself in such a way that I can employ him (…) I’ve got all these contracts and I can take more contracts if if he can do the reports then I know that I’ve got a job for him until he wants to go out himself or actually does something (Grace, 27, 446-459).

The parents also discuss the use of personal coping strategies that, in contrast to their engagement in attempts to rescue their sons from their “new” state, include attempts to avoid and distract themselves from the pain involved in doing so. Grace, for example, talks at length about how she immersed herself in studying and working as a way of coping:

The study helped me cope as well because there was a time I was studying four degrees at one time…I would just bury myself in books thinking…these books are the ones that are going to help me through, so it did help me because I had other things to do…I could audit the 24 hours, what I am doing in the 24 hours, you know take account of everything what am I doing, what am I doing and that sort of helped me to cope (Grace, 22, 367-442).

A sense of movement is evoked by the parents’ descriptions of their fluctuating immersion in attempts to help their sons, and their need for relief and distraction from doing so. This movement in and out of focusing on their sons’ situations echoes their descriptions of the sons’ process of recovery, as they progress and regress, up and down, to and from, the “old” and “new” selves, both minute to minute, as Dennis describes, and over longer periods of time, illustrated by John:

John: He can have a real sort of like a downer…then in an hour’s time he’ll be

looking at something on the computer and he’ll be almost normal, so it’s a bit of an up and down rollercoaster thing (John, 25, 401-404).

Dennis: _{He was totally mouth open constantly, dribbling and then he’d look at} you and talk and I’d say “Ryan they’re talking to you” and he’d wake up and then look at you then he’d drop back again after 5, 10 seconds (Dennis, 12, 257- 259).