4.8 PARENTING ABILITY IN RELATION TO MANAGING CHILD PRIOR TO
4.9.5 Parental emotions
Parents consistently reported experiencing a sense of guilt when reflecting on their behaviour and responses in frustration to their child, prior to diagnosis.
4.9.5.1 Guilt and parent emotions put aside
The quote in the table, epitomised the approach that many parents ultimately employed as they had little time to stop and process their own experiences or psychological needs while attempting to attend to their child with ASD and the multitude of stressors that came with this.
Parents reported renegotiating their expectations of parenting, of each their roles as parents and of their child. Parents also reported that acquiring a diagnosis didn’t fully exclude them from experiencing periods of frustrations. They also reported experiencing guilt when reflecting on their responses to frustrating experiences prior to a diagnosis.
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Table 4.9 Themes and their subthemes identified with supporting quotes regarding their parenting ability in relation to managing child after diagnosis
Secondary
theme Subtheme Supporting quote
Renegotiating Expectations Of Parenting
Approach I mean… you basically have to um turn everything you know about parenting upside down because that’s what it takes to parent a child with autism everything you think you know about good eating you end up doing a lot of the opposite, because good parenting for neurotypical and good parenting for autistic kids are very different. (Participant B)
Of Child We have a lot of conflict surrounding Child B 1 because he’s 22 already aaand um… husband still has expectations… that I know he cant meet. (Participant B)
What I see from observing… ya! And we don’t… sort of don’t expect him to be normal and we know hes never gonna get better! you know what I mean! This is what it is! So I think we’re just a bit more relaxed…
(Participant D)
Parenting Approach
Child As Priority I was like, it’s sort of my mission in life to to sort this little boy out and make sure he’s happy and he’s ok and I tried everything I could. So, I wasn’t really, if that what you asking so I wasn’t really a point that I felt sad and I could say I feel I failed him in anything. (Participant A)
Parenting Team This is the thing- Its always the two of us against them. When there is any form of um whats the word…if theres any issues in the, in the, or or conflict we always together on the same team against them. We never split up and I’m with one of the kids- we don’t do that. We, we stick together no matter what- even if we disagree, we stick together. We’ll afterwards have a fight but when… ya we always on the same team when it comes to any conflict in the family…because you have to be. So I think from that perspective we knew that from the get go. But um doesn’t matter what we need to be on the same…team. (Participant B)
Aiming For
Independence What I’m giving you is I’m going try make him as independent possibly so that you can one day have a life. So that he is not your person, gonna keep you here and if you decide wow I wanna go we gonna go on a tour or whatever you can take him with because he’s got the social skills to go with. It’s not that he’s gonna pull her back. (Participant E)
111 Overcompensating
Or Over-
Protecting
But it was also challenging all of a sudden you want to over- compensate. … But it was ya, a challenge to not over compensate. (Participant A)
… because I think to a certain extent we’ve raised him a bit in a bubble, but in a bubble in the sense of protecting him but also uhhh… fine-tuning the environment to suit autism and not necessarily forcing him to live in a world that’s not made for him- we decided to force ourselves to live in a world that’s not made for us. So, we’ve gone 50/50 on that. We force him sometimes to come to our world, but we indulge and enter his world very often as well, type of thing. So that’s basically our approach. (Participant B)
Ya and a bit over protective like I don’t know where to draw the line and how much to…[He’s] very sheltered… but I have thought: have I got him in this ivory tower where he’s so protected and… ya… I do notice as well that you cant help, it you compensate a lot… (Participant D)
yes there’s counter-arguments where people say I’m protecting him… but I say as long as I can protect him I’ll try do that. (Participant E)
Renegotiation Of Parent Roles
One Parent As More Prominent Care-Giver
So but because I spend the majority of the time I’m much better trained at dealing with them and becoming automatic response everything I did is in preparation and I lose it, but I obviously have more contact with the kids so it’s a lot it comes more naturally for me. (Participant B)
Trust In Spousal Care-Giving Role
...luckily we in the position where [my husband] one hundred percent trusts me as the expert and he takes my lead and we've got an agreement. He goes to work- that’s his level of expertise. I do not tell him how to run his company. He can ask my opinion and I'll tell him my opinion but I will not tell him how to run his company. Same way he trusts me as the expert on autism and raising our children and education therefore he will not try… he will give an opinion but... (Participant B)
Frustratio n
My husband still struggles and they still bump heads on a regular basis. He would like phone me and say you won’t believe what he did now again, and I would like… I’d listen hear him out and “but he’s autistic”
and he would like ya ya.. But did you warn him? did you do this? I do the checklist with my husband and then he’s like, “ya you right”. (Participant B)
112 Dealing With Well sometimes he talks incessantly well often… but he’ll talk to himself and sometimes when you tired-
ok it bothers my husband less- but sometimes when you tired and he’ll like pace… so having someone who never stops moving well sometimes he does but.. ywho doesn’t stop going, who paces sometimes like.. if im tired at the end of the day he wont stop talking he talks so himself. He doesn’t moderate his voice correct-like he’ll be telling me something in the car and his voice will be soft and then hell stand next to me and yell…. It’s the not moderating your voice,the moving all.. well not {feels like all the time} ya!
(Participant D)
Sometimes I do get fed up and sometimes I do feel like yes, I as a mom I have messed up. But then other times I have then feel that at that stage at that moment that was the best we could do as a family… um, that was the choice and we need to live up to it. (Participant E)
Parental Emotions
Guilt There’s a lot of guilt afterwards ‘cos you think back and your kid was so anxious and distressed and you know in such a state of horror And you just left him on the pavement and went to work. So um there was a lot of guilt to deal with… The guilt is always there. (Participant A)
The, the Child B 1’s story is a story of um guilt and, and, and um almost giving up and despair because you feel bad because you didn’t know better…and in general there’s so many misdiagnoses and I think to a certain extent instead um I suppose we there was no way we could have known. (Participant B)
Parent Emotions Put Aside
I think that um… you go through all these things and you manage and you survive, push through to do what’s best for your child and you just suppress emotions inside yourself. (Participant A)
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