7.4 C ATEGORIES DISCLOSING THE CHARACTERISTICS OF BEING THE PARENT OF AN
7.4.2 ADHD and family life
7.4.2.1 Parenting issues
Research on the larger domain of family functioning has shown that parents of children with ADHD children commonly experience considerable stress in their parenting roles (Anastopoulos, Guevremont, Shelton, & DuPaul, 1992; Fischer, 1990). This was evident in the lives of all the participants.
Learning to be a parent
The general consensus among participants was that being a parent means making it up as you go along. Brenda feels that you can’t learn to be a parent: “there are no books on being a parent. We do the best thing we think we can at that time in life.”
Brenda feels that the available books present you with “the perfect child, the perfect life. And then we hit problems and nobody can tell you how to handle it”.
Linda has a grown up daughter from a previous marriage, so she feels she had some experience by the time she had Ruth. For Angela, however, it’s been a case of learning to be a parent by trial and error.
Marie too believes that “you just learn to be a parent as you go along; there’s no one to teach you – unfortunately (Marie’s emphasis).” Marie feels her own mother is the model she has for being a mother and she is grateful that her mother “enjoyed being a mother”, and “mothered intensely”, and “gave a lot for her children”. It is, however, a difficult model to “measure up to”, especially with Johan “ being so difficult”.
Mia feels the girls “didn’t come with manuals” and for her being a parent means taking each day “as it comes” and dealing with it. Pat also feels that when it comes to being a parent, you “definitely learn as you go along”. Pat feels that parents need to be educated about being a parent, but admits that she doesn’t know who would take on the task: “the government, the schools? You know it’s a hell of a dilemma.”
Ultimately, Pat feels that parenting “all comes back to your values and your morals and how you were brought up” (Pat’s emphasis).
Samantha feels that being a parent is a “day-to-day handling of every situation as it comes”. Sandy believes nobody can teach you to be a parent and that you can only
“follow your natural instincts”. Sandy believes you do the best you can and try not to make the mistakes your parents made, although you still “make mistakes every single day”.
Carrie believes that you learn to be a parent “by trial and error”. “Nobody teaches you how to do this.” More importantly, Carrie feels that “nobody teaches you what to do when you have got children that are not the same as everybody else”. In some ways, Carrie feels you are also determined “not to do what your parents did”. For Rose it was a conscious decision that she did not want to parent the way her parents did.
Some parents felt the need to learn appropriate parenting behaviours to assist them with raising the ADHD child. These are changes beyond those they would need to make for a child without ADHD. Belinda and Rob went for parental counselling for a year after Evan was diagnosed so that they could learn to put boundaries in place.
Marie started studying again to try to “get answers” about Johan. Beth, Sandy, Michelle and Rose all attended some form of parent’s course.
Modifying daily routine
Daily routine often has to be adapted in the family with an ADHD child. Children with ADHD typically require more of the parent’s time to manage behaviour and help with homework than non-disabled siblings.
Brenda knows her older son is okay when she goes away, but she worries that she’s not there to see that Conor eats and drinks, and to help him with his homework –
“you know he needs that little bit more time”. Belinda found Evan “very (Belinda’s emphasis) demanding” as a little child, although he is getting better now. Marie feels it was fortunate for Johan that she didn’t work, because he “took up so much attention”. Mia has always had to put in “a lot of time” with the girls, especially with Lynn and homework.
Samantha will often sit with Claudia doing schoolwork till late at night. Sandy too spends a lot of time with Aidan doing homework. She can’t leave him to work on his own because then he does nothing. It can take Sandy up to two hours to do two readers with Aidan. Michelle has to sit with the children every afternoon and do homework or it doesn’t get done. “I have to sit and monitor every, every afternoon (Michelle’s emphasis).”
Carrie spends a lot of time working with the boys and feels they are lucky that she does not work and has always been there to do homework with them. Carrie feels they would be “lost” otherwise.
Michelle finds trying to break the daily routine is a problem. If she and her husband take the children for an ice cream on the odd occasion, the reaction will be: “But you said we can’t do this and now look we’re doing it.”
Family activities, like outings and vacations, also have to be carefully planned and organised. Michelle finds family outings are a “nightmare” and they are kept to “few and far between”. Rose and Mark too found that the anxiety of a planned trip or outing seemed to “totally unsettle” Eugene.
Finances
Children with ADHD often require more of the family’s monetary resources for medical specialists, medications, supplements, psychologists, and special schools.
A number of parents admitted to feeling the pinch financially. Sandy is already paying for a private school for Aidan, but she has now heard of a woman who does assisted learning from home. Sandy would love to send Aidan to her, because she knows he
“would just excel”, but she can’t afford the R4 500 a month it will cost to send Aidan to her. Recently Sandy’s husband has questioned the amount of money being spent on Aidan’s treatment, which upsets Sandy. She feels she has to do these things for Aidan: “If I leave this, I feel I’m failing Aidan”.
Gill and Dylan found that they could not afford to go the full diet route with Doug, even though there was some improvement when he was on the diet. Gill and Dylan currently have Doug in a remedial school. Although they feel it is “the best thing” they could have done, they are “feeling it financially”. Pat too has her son, John, in a remedial school and, although it is a good school, she feels that financially it “kills”
her. The psychologist, however, said to Pat: “You know what, Pat, if you have to go out and get a waitressing job at night to get him into a decent school, you’ve got to do that in the beginning.”
Michelle finds that “financially it’s hellish with all the supplements and things”.
Michelle does not work, so “the burden of that responsibility falls on Matthew’s shoulders”. Michelle sometimes has to forgo the supplements because of finances.
“And it is hard because then they deteriorate, and then when we can afford to again it is this long road before they are back where they were.” Michelle was also taking all four children to a neuro-linguistic therapist, but eventually they stopped going because it “becomes extremely expensive”.
In Brenda’s case, she admits to buying peace and quiet. Conor will obsess about getting something to the point where “it’s easier to buy that tank on the shelf, so that I get five minutes of peace.” Brenda then feels guilty about buying Conor something and buys Brad something so he doesn’t feel left out.
Differences in parenting a child with ADHD as compared to a non-ADHD child A number of the participants felt there is a “big difference” between parenting an ADHD child and a non-ADHD child. Parenting strategies that were successful for a non-ADHD older child often do not work for the child with ADHD. Two of the participants mentioned the tension of having to be “two” parents in that they have to have a different parenting style for the ADHD child and the non-ADHD child.
Belinda’s two older children are both ADHD. Belinda sees “differences now, because Frank is different”. Frank will actually finish something that he’s working on. Belinda realises now that neither Evan, nor Cathy, ever finished something before moving on to something else. However, Belinda never thought it odd when Cathy didn’t finish things, because Evan had been the same. According to Santrock (2002), ADHD
children who display the characteristic of inattention display an inability to finish tasks, and often get bored with tasks after only a few minutes.
For Brenda the difference in parenting an ADHD child and a non-ADHD child is that she is more protective over Conor than Brad, because he has ADHD.
For Angela there is a big difference between parenting her children: “one’s a pleasure; one’s an absolute nightmare.” Angela feels she has had to be two parents.
Tina needed her to be really strict, but if she had been that harsh with Colin, he would have been “devastated” and it would have changed her “son’s perception” of her. And so she had to “be two parents”.
Linda’s two children are very different. Reese is very sweet and loving and forgiving.
Linda calls him “angel-like”. Ruth on the other hand can be “very nasty” and always wants to be the centre of attention. Luckily for Linda, Reese is content for Ruth to take the lead.
Marie feels it is “like Mars and Venus parenting these two – it’s like these children come from different planets”. Marie admits that the parenting style does vary from one child to the other and “at times it’s been very hard to hold that tension”. Marie sometimes feels she doesn’t know what to do. She doesn’t want to take sides, but sometimes she just knows that her “daughter is right and he (Johan) is wrong.” Marie admits it’s been emotionally hard and sometimes she just wants “to be left alone” and not to have “to take all that responsibility for them”.
Zelda too finds her two children very different to parent. Her daughter is very academic and comes home with distinctions and prizes and “does everything perfectly”. Karl, on the other hand really battles along. It is hard sometimes when her daughter comes home with a good report, because she feels she can’t “really be too happy”.
Samantha, however, does not “think there’s much of a difference at all” between parenting Claudia and parenting Ben. When Claudia was younger there was a difference, and Claudia would battle to follow instructions. Samantha believes there is not much difference now, because Claudia is on her diet. She does admit though that “Ben can carry on with stuff on his own and she (Claudia) might just need some directing”.
Parent’s feelings
Major themes with regard to parent’s feelings include (a) feelings of helplessness, (b) feelings of being blamed (c) feelings of guilt (d) feelings of resentment (e) feelings of
fatigue (f) feelings of embarrassment (e) feelings of isolation/loneliness (f) feelings of grief and disillusionment and (g) feelings of empathy.
Helplessness
Parents try a variety of techniques and strategies with their ADHD child and feel helpless when they don’t work. These parents seem to be constantly searching for an answer for their child.
Belinda and Rob felt helpless because they did not know how to deal with Evan: “We had no idea how to limit this gorgeous child and how to cope with him”. By the time Evan was diagnosed, Belinda “didn’t know what to do anymore for him” and all three of them “felt totally out of control”.
Angela feels helpless and has now “washed her hands” of Tina. Angela reached a point where she felt she could “only do so much”. Angela has now thrown her hands up and said, “I am not responsible anymore”.
Marie and Leon felt that they did “more than was expected of any parent” and “still nothing helped”: “It was very hard for us, because we did the best we could. We thought we were very good parents.” Marie felt particularly helpless when she asked the headmaster to keep Johan back at school and he said no, without any explanation. Marie had looked to him as someone who could give her an answer, but now she was “left in the middle of nowhere”. Marie felt it threw her “totally off balance for such a long time”.
Sandy too feels helpless because she does so much work with Aidan, but there is
“never any improvement”. Michelle felt helpless when Kenneth started screaming at 5 months. Michelle didn’t know what was wrong and she couldn’t get anything right with him. By the time Kenneth was 8 months old Michelle felt she “couldn’t take it anymore”. Michelle felt she had her “hands full”. Michelle’s feeling of helplessness is compounded because she has ADHD too. Michelle feels she can hardly cope with herself and “now I have got these four little people that really need me”.
Blame
A number of the parents received comments that varied from subtle suggestions of blame, to very direct comments that they were to blame for their child’s behaviour. In some cases there was complete denial by those who blamed them for their child’s behaviour that ADHD was a neurological disorder, and a belief that the parents were somehow promoting the behaviour. These messages came from a variety of people:
spouses, siblings, extended family members, community members, medical professionals, and school staff. In some cases, participants even blamed themselves.
How do parents cope when they are blamed? In most cases parents need to recognise that the child’s behaviour stemmed from a biological cause, and was not the result of bad parenting. They need to recognise that their parenting skills could influence their child positively or negatively, but there are some behaviours they are unable to control.
Angela was accused of being “dysfunctional” by Tina’s school guidance counsellor.
Angela’s older child, Colin, had had a very successful school career at the same school and is now in university. It angered Angela, who said to the counsellor: “I have another child who went through your school, and I was never accused of being dysfunctional with him, and he didn’t have a problem. Now that there’s a problem I’m dysfunctional. If there’s anybody who is dysfunctional it’s Tina, not me.”
However, Angela blamed herself too and used to feel a tremendous sense of guilt.
Angela felt she was going out of her mind and believed she must have “obviously done something wrong”.
“But after a number of years – I was going to drive myself insane – I actually then sat and looked at it and thought: ‘But Colin is brought up exactly the same way.’ And you cannot get two more opposite children in the same household. And, if it hadn’t been for him, I think I would definitely be blaming myself. And I got to the point where I said to myself: ‘I am actually not to blame.’”
Mia experienced implied blame from her husband. Dave’s attitude was: “There’s nothing wrong with my child; you (Mia) are looking for a problem.” Dave implied Mia was to blame by saying that she needed to “spend more time” with Lynn. Mia felt she couldn’t spend any more time with Lynn than she already was.
Pat used to blame herself until the psychologist said to her: “You can’t do any more.
Just relax; there’s nothing more you can do. Stop blaming yourself.” Pat now realises that assigning blame is not useful. Knowing who or what is to blame will not change the situation:
“I don’t care if it’s when he fell out of his bed on the tile floor, or if there was something in the birthing. It’s not going to help; it’s not going to go away; it’s not going to make anything better. Just deal with it and make the best of it.”
Gill too used to blame herself. She would say to herself: “I’ve got to be the worst parent in the world. How come everybody else can do it and I can’t?” It’s only now that Gill realises it was “really stupid” to think that way, because there was actually something wrong with Dylan.
Beth felt blamed by the children’s Clinic. They even sent her for therapy. Beth also feels she was too intense a parent initially, and she would “beat herself up when she wasn’t perfect”. Beth believes she has now “grown out of that”.
Michelle feels other people would imply she was to blame for her children’s behaviour. Helen would have such bad tantrums that people would ask Michelle what she was doing to her child. Michelle “developed such a complex about it”. The same thing happened when Kenneth used to scream and they lived in flats. Michelle regularly had people come up to her and ask her what she was doing to her child.
Carrie had her husband tell her she was “a terrible mother” because she had managed to get it right with their first child, so why not this one. The educational psychologists also “blamed it on the parents” and suggested therapy for Carrie and her husband. Carrie feels that it’s hard when “you look at the other parents and their perfect kids”. It makes her ask: “What am I doing wrong?” Besides blaming herself, Carrie also feels other people are quick to blame the parents, making comments like:
“They just need discipline”.
Rose was called a “useless mother” by a principal and a paediatrician, and an “over- possessive older mother” by the educational psychologist. This fed Rose’s own fears.
She is an older mother and she questioned what it was that she might have done wrong. Rose’s family also thought she and Mark were to blame for Eugene’s behaviour because they were simply not strict enough.
Belinda has come to accept that she is not to blame and “just because the children have got a problem; it’s not my (Belinda’s emphasis) problem.
“But it was the kind of thing that you felt was something to do with your parenting, initially. Now I just know that it might have been the parenting (and I wouldn’t admit that many years ago) because we didn’t set limits, but it didn’t cause it.” (Belinda’s emphasis)
Guilt
Zelda is a perfectionist and feels that makes it hard to be Karl’s mother. Zelda worries that she will transmit a feeling of “you’re not good enough” to Karl: “without meaning to, but it will still be transmitted”.
“Sometimes in your mind you have a picture of somebody who doesn’t succeed, or who doesn’t do well or something, and sometimes you see that in your son. (Sighs) And I feel so guilty.”
Even though Sandy tries to cover all the bases with Aidan, she still feels guilty about things she has not done. The psychiatrist suggested that Aidan go for socialising, but Sandy feels they couldn’t afford it. Sandy feels “guilty about it. Maybe it would have helped.”
Before Doug went on Ritalin, Gill found it difficult to deal with “a child who is out of control”. She would reach the point where she had enough, and would lash out at Doug. That would cause Gill to “spend the next three hours wallowing in guilt”:
“Terrible, it’s the worst feeling in the world.”
Resentment
Sandy used to feel “tremendous resentment” toward Aidan, because as a parent she felt she was failing: “I felt, no matter what I did, it was never right. I could never make this child happy. And I just did what I needed (Sandy’s emphasis) to do. And I felt that I couldn’t get close to him.” It took going on the parent’s course, and learning to understand Aidan more, for that feeling of resentment to change.
Fatigue
Coping with the ADHD child’s disorder and the frustrations that accompany it is exhausting. Many of the parents feel the need for a change or a rest.
Marie feels Johan was fortunate that she could stay at home with him, because he needed the extra attention. It was, however, sometimes “very bad” for her “because there was no me time”. Marie was “so busy rearing these children” and trying to divide attention between her daughter and a son who “took up so much attention”, that she “was lost within that”. At times she felt, “I just don’t want these children;
please take them away. I just don’t want them.”
Mia “had gotten to the point” where she “was very low” by the time Lynn was diagnosed. Mia “was very tearful all the time because trying to get Lynn to cope was