Parenting preadolescent children in any family — in my family or in your family- in families with parental disability and families without parental disability — presents a challenge to us all!

In this paper I present findings from a recently completed study conducted by the Family Support and Services Project at the University of Sydney. This research and development project about parents with intellectual disability and preadolescent children was commissioned by the Department of Human Services Victoria with the aim of developing a resource manual for frontline workers. The project comprised a qualitative interview study with a small number (12) parents in NSW and multiple interviews and focus groups with care and protection workers, family support workers and disability specialists in NSW and Victoria. I draw on the views of parents and workers in this study to illustrate my points today. A full report of the study is available and a resource book with practical strategies for human service workers will be available later this year from the Department of Human Services.

I plan to address four areas of interest that arose out of this study. The first is a brief review of the changes that take place prior to adolescence to set the context for parenting challenges at this time. Second, I plan to briefly present what we know from the international literature about the life situations of parents with intellectual disability. Third, I plan to talk about the particular challenges that parents with intellectual disability face when raising their preadolescent children. And, lastly to discuss the challenges that all parents have in common at this life stage — whether or not they are parents with a disability

First to the changes that take place in preadolescence. Between nine and twelve years of age children make the transition between childhood and adolescence. Their physical bodies change dramatically. They begin to develop their own sexuality - this is often uncomfortable for parents (Gorzka et al., 1991; Walters & Kennedy, 1993). They ask difficult questions about sex, giggle about sexual innuendo, and compare and compete for boyfriends and girlfriends. Children at this age have regular emotional outbursts or moody behaviour. These are due to hormonal changes, as well as social pressure and their own insecurities. Older children need to assert their independence and rebellious behaviour is one sign of this (Bennett, 1987; Waters & Kennedy, 1993). The tone of the family home may be very different as changes in children's behaviour affect their parents' behaviour and vice versa (Kendziora & O'Leary, 1993; Coates et al, 1985).

At this time, cognitive ability is developing rapidly. Children become more curious about their world and are keen to solve problems (Berlin, 1990). They develop abstract reasoning skills, learn to see meanings and intentions, and to express their emotions and feelings (Waters & Kennedy, 1993). Children at this stage also develop socially. As well as having at least one best friend it becomes very important to be accepted by ones' peers (Berlin, 1990; Bennett, 1987).

Given all these changes it is no wonder that pre-adolescence is often confusing and challenging for both parents and children. Many parents do not know what to expect of their children and many pre-adolescent children do not know what to expect from themselves. At this time parents’ concerns — whether or not the parent has a disability — typically focus on issues such as promoting independence, helping around the house, child self-esteem, discipline, sibling rivalry, personal hygiene and on children's schooling.

Now to turn to the particular situations of parents with intellectual disability. Generally speaking, these parents live in different circumstances to most other parents in the community. They usually suffer profound socio-economic disadvantage; they are frequently socially isolated or in situations which are not socially supportive; and, their lives are on public view: frequently observed, monitored and/or invaded by multiple service agencies. For many families, poverty and isolation are not temporary but enduring features of their lives. Survival and maintenance issues of housing, food, adequate clothing and bills have to be addressed before mothers can attend to parenting and health issues (Hardy & Streett, 1989). Practicing good communication and self-esteem boosting strategies come a long way down on any priority list when mothers are struggling to keep their family fed and clothed. Clearly, these circumstances need to be addressed prior to, or alongside, parents’ childrearing practices.

The first concern is around housing and money matters. Most families live in public housing. Social security benefits are often their only source of income. With such limited resources, it is a difficult task ensuring that children are fed and clothed, and the bills paid. This is especially so in middle childhood when children are perpetually hungry, growing rapidly and 'rough on clothing'. Parents with intellectual disability may be stretched providing for their family's basic needs. As children get older and become more aware of what their friends have and they don't, they may pressure their parents for the latest craze, expensive items such as a Sony playstation or roller blades. Not surprisingly, many parents with intellectual disability are faced with rising debt.

In our study, more commonly than not, parents reported difficulty with managing money and making it stretch far enough. Dealing with banks, social security and the Housing Department were seen to be daunting tasks particularly when parents could not read or fill in forms.

Parents also voiced concerns about their type of housing, about needing more space for their children to play, as they grew older. There was a long wait for alternative accommodation, to move from an apartment to a house. Lack of heating, leaky taps, faulty (or non-existent) appliances and vermin made parents’ lives uncomfortable. Their neighbourhoods were often unsafe. Verbal and physical harassment were common experiences.

A related issue is the degree of social isolation experienced by most parents with intellectual disability. An unusually high proportion of these parents are estranged not only from their immediate family but receive very little, if any, support from extended family, neighbours or other community members (Andron & Tymchuk, 1987; Llewellyn, 1995; Rosenberg & McTate, 1982; Whitman & Accardo, 1990). Even where other family members are on the scene, support cannot be assumed (Llewellyn, McConnell, Cant & Westbrook, in press; Llewellyn, 1995; Tucker & Johnson, 1989).

When parents are socially isolated so are their children. Opportunities for children to develop friends may be very limited. Parents may not know other parents with children of the same age. Families may live in neighbourhoods that are intolerant or inhospitable. Recreational activities for children may cost too much. Children may be reluctant to invite friends home due to the stigma associated with their parent's disability.

In our study, even when some support was available, parents talked about feeling isolated in coping with the challenges of parenting. Single parents - typically the most isolated of all — were often the most lonely and wished to have the help of a partner to back them up particularly when disciplining their child. Most parents mentioned few, if any friends. Some parents experienced rejection when they reached out in friendship. Others felt they had too many problems to offer reciprocal support and friendship. Some parents were wary of becoming too involved with their neighbours because they feared that if friendships turned sour they may "turn them in" to the welfare department.

A third concern is the role of service agencies in parents’ lives. Parents' needs for support services vary greatly. Yet most parents have numerous support workers from an array of service organisations (Booth & Booth, 1993). For these parents keeping track of 'who's who' is no mean feat. In contrast, other parents need support but are unable to identify and/or access community resources (Kaatz, 1992). Parents commonly speak of living under constant scrutiny and fear of 'welfare' taking their child away (Andron & Tymchuk, 1987; Booth & Booth, 1993; Llewellyn, 1997a; McConnell & Llewellyn, in press). Not surprisingly, these parents may be reluctant to seek out services and be resistant when services are offered. Parents can feel disempowered when services fail to consult them in decision-making.

For the parents in our study, there was clear evidence that they liked some aspects of the services they received. Parents talked about workers who could be relied upon to act as advocates for them at the school, at the doctor or in dealing with government services. Respite care was a highly valued service, particularly during school breaks. Some service workers were appreciated as teachers, as a source of good advice, and as good listeners. These workers made parents feel understood. For many parents, these service workers were the only people that they had to talk to.

Parents also disliked some aspects of the services they received. Support workers often changed without notifying the family. A new worker simply arrived and the parent had to start all over again, to tell their story and to learn to trust this new person. Workers were also inconsistent when they made promises and didn’t follow through. Some parents did not know when the worker was coming next. They may not see a worker for months, and then suddenly they showed up. Worse still, some workers tried to force their ideas and values on parents without consulting them about what they thought was best for their families.

Workers regarded this issue of formal support to parents somewhat differently. Many workers felt frustrated by parents' lack of initiative in seeking out and using services. They felt that parents needed to be informed about what services were available and then encouraged and actively prompted to go ahead and use these. Workers sometimes found it hard to get parents to cooperate and they became frustrated when parents failed to follow through with services.

When we turn to specific childrearing practices we need to recognise the challenges that all parents raising pre-adolescent children have in common. Sometimes these challenges play out in the same way for parents with a disability; sometimes parents with intellectual disability face particular challenges. I now want to address those challenges that are particularly emphasised for parents with intellectual disability.

One area where parents with intellectual disability face a particular challenge is in parent and child expectations. Many parents find it difficult to keep up with their rapidly developing child and changing demands in pre-adolescence. Clothes, especially shoes are quickly outgrown. Parental authority may be challenged, as children demand greater freedom and independence to explore their own interests. Many parents with intellectual disability adjust and adapt to meet their children's changing needs. Others need ongoing support to do so. Parents' life experiences - such as segregation, the absence of a role model, and low expectations from significant adults can leave them disadvantaged from the start.

Children of parents with intellectual disability also have to come to terms with their parent's 'difference' and disability. During middle childhood, they may discover that in reading, writing and maths, they are more capable than their parents and that they will not get help with their homework. They may need to help their parents complete forms, read letters and pay bills. Some children may be embarrassed by their parent's disability. Others may seek to protect their parents from jeers and harassment. Either way, children may be reluctant to invite friends home, or inform parents about social events at their school. Support workers may need to help children deal with negative feelings (e.g. resentment, anger, and burden) about their situation and help them understand the nature of their parent's disability.

Knowing what to expect of one's children at different stages is one of the most difficult things for all parents with intellectual disability. Parents we talked to asked questions like, 'Shouldn't he be old enough to control his bad temper?' and ' Isn't she too young to be interested in boys?' As children developed 'a mind of their own', and demanded more freedom and independence, the parents were often frightened for their child's safety and uncertain about where to draw the boundaries. At the same time, they were glad that their children were more able to entertain themselves. Increasing interest in the opposite sex evoked varying responses in parents. Some parents found it very hard to accept their developing child’s desire for privacy. Parents described crushes on peers as well as teachers, giggling on the phone, teasing, and a growing obsession with fads and teenage idols. Some parents accepted the situation and others turned a blind eye. Others were keen to ensure their children did not grow up in ignorance as they had done.

Parents’ and childrens’ expectations are closely linked to parent and child communication, the second area where parents with intellectual disability face particular challenges. As children develop their capacity for reasoning, they may question their parents, demanding more from them in terms of explanation. At this time, children's interests increasingly extend beyond the home and family to peers and the opposite sex. Privacy is increasingly sought after, as children often prefer to be alone with their developing bodies, fragile egos and powerful feelings.

At times, parents may feel shut out. Communicating with children as they approach adolescence is difficult for most parents, and an area in which they may seek advice and support. Communicating with their preadolescent children may be particularly difficult for parents with intellectual disability. Their previously restricted life experiences and ongoing social isolation may mean they have poorly developed communication skills.

For some parents in our study, their relationship with their child had become more like one between adults. On the positive side, some parents were glad of someone to talk to. On the negative side, children may be competing with parents for the attention of adult friends or service workers. Some parents expressed concern that their children were becoming "little adults" too quickly. Others were unsure how to react to their "questioning" children.

Some parents were concerned that communication in their household was not all they would like it to be. Parents frequently mentioned the amount of yelling that went on. They reported among other things, children talking over the top of others, not waiting their turn, being impatient and demanding immediate attention. Sometimes parents felt that their children only spoke to them when they wanted to complain, or when they did not want to do things they were asked to do.

The workers in our study regarded communication between parent and child as a major issue for many parents with intellectual disability. They saw that parents did not always pick up on problems or things that needed talking about with their children. Children who were aware that their parent was different may be choosing not to communicate information to their parents. This is illustrated in the story told by one service worker about a boy who was continually in trouble at school for refusing to complete his spelling homework. The teacher began to see this child as obstinate and uncooperative. In truth, he did not want to ask his mother to test him because he knew that she could not. He wanted to protect himself and his mother from embarrassment and did not explain this difficulty to his teacher.

To turn now from the particular challenges faced by parents with intellectual disability to the typical concerns that affect all parents of pre-adolescent children. The first concern is around the child’s growing desire for independence. Children want to be more independent, to take on responsibilities and pursue their own interests. Parents may want their children to help more around the home. Children demanding more independence and not helping at home frequently lead to family conflict. Parents with intellectual disability may not manage negotiations in these areas very well. These parents are often accused, somewhat contradictorily, of both 'giving too much freedom and independence' and 'expecting too much from a child'.

Some parents to whom we talked did not expect their children to help at all. For some this was because they felt they could do a much better job themselves and so would rather just 'get on with it'. Other parents did allocate tasks to their children but found they argued, refused, and fought with their siblings about 'turns' or forgot to do the tasks. Often then, parents decided to avoid conflict by not enforcing assigned chores.

For several parents, the fear of 'welfare' and their power to remove a child overshadowed their interest in promoting their child's independence. These parents were frightened that neighbours may report them if, for example, they saw that they allowed their children to walk together to school without a parent. To combat any disapproval, one parent always phoned DOCS (child protection services) to request permission before granting her child any freedom at all.

Another typical concern for parents of pre-adolescent children is healthy self-esteem. Some parents with intellectual disability may have difficulty helping their children meet this goal. Indeed, many parents with intellectual have low self esteem themselves after years of experiencing failure, segregation and abuse (Llewellyn, 1997b). Several researchers have suggested that children of parents with intellectual disability will need other relationships, for example, an adult outside the home, or peers to assist in developing healthy self-esteem (Barnes, 1996; Coates et al., 1985; Booth & Booth, 1997; Tymchuk, 1992). Some parents in our study thought their children lacked self-confidence. Others appeared not to really notice their child's self esteem, except to say 'he/she seems happy enough'. Most however tried to help their children combat things that were damaging to their self-esteem, such as teasing from peers.

Discipline is always a "hot" topic. During middle childhood, parents have to redraw boundaries to keep pace with their child's development. For parents with intellectual disability, knowing where to set limits may be particularly problematic. As children grow physically bigger, disciplinary methods formerly used may be unproductive and difficult to enforce. Parents must adapt their methods. At the same time, sibling rivalry - a normal part of family life - can also become more ferocious (Bennett, 1987).

Most of the parents in our study listed fighting between children as a major issue - in some families - a daily issue. At these times, parents with intellectual disability - like other parents - often feel powerless. They may be uncertain where to set limits, and how to enforce them when children are defiant. The parents we consulted used a range of disciplinary methods. Some parents believed the best method was a good smack. Others felt like they constantly had to yell. Another popular parental strategy was sending children to their rooms. However, for many parents this became more difficult as the child got older and could no longer be physically forced to go. Several mothers said that their children listened more attentively to their father and so they relied on their husband or partner to discipline their child.

Some parents preferred to deal with child management problems 'on the spot'. Others focused more on positive preventive methods. For example, one parent used a star chart to reward good behaviour. Food treats, verbal praise and money were also widely used. Parents' reported how difficult it was to stay one step ahead, not knowing what to expect as their children got older.

Developing healthy bodies and minds - teaching children good eating habits and personal hygiene - are all parental responsibilities in the pre-adolescent years. Older children also need to learn the importance of exercise and fitness (Bennett, 1987). Parents must also take good care of their health to cope with the physical and emotional demands of raising children. Being healthy can be difficult when money is in short supply and parents feel isolated and lonely and are unable to take 'time out' for themselves.

Some parents with intellectual disability will be concerned to make sure that their children eat well. Others will not and appear not to care what kinds of food their children eat. Some do not appear to care too much about their own health. Others are well aware of the need to look after themselves both physically and emotionally. For example, one mother we spoke to enjoyed taking walks and talking to her support worker as stress reducing strategies. Another mother found shopping helped her to 'escape' and was calming when she was upset.

The final topic of concern to parents of pre-adolescent children and one frequently addressed in parenting classes is the child’s learning and the school environment. In middle childhood, children move from primary school to junior high school. Primary school is a highly structured, predictable and low-pressure environment. In contrast, high school means new subjects, many teachers, frequent moving between classrooms and a change in status from senior student back to the most junior. Some children make the transition smoothly; others do not. Children can become bored and disruptive or make an extra effort only to 'fail', lose their confidence and their self-esteem (Bennett, 1987). Bullying which is frequent at this time (around one in ten children are bullied) can add a further pressure.

Most of the parents in our study wanted their children to do their best, and better than they did at school. Parents expected that if their children finished school they would be able to get a good job. They wanted to know when their children were doing well at school as well as when there were problems yet most parents reported difficulties in communicating with their children's schools. For example, reading school reports or notes sent home by their child's teacher. On the other hand some parents did have very positive interactions with their children's schools. Some liked to go and help out at the school. One mother went every week to help in the craft class where she loved helping the children and seeing her own child with the others.

Getting children to do their homework was nearly always a struggle. Parents were often unsure how to make children do homework particularly if they simply refused or demanded to do other activities such as playing Sega games. For many parents, their child's academic ability outstripped their own. One mother knew that other mums went to the library to get books to help with their children's projects but she did not know how to look up the right books. Other mothers found different ways to help their children. One mother told her daughter's teacher when the homework seemed too hard so that the teacher would explain it again. Another mother who reads, but with difficulty, began reading classes. Her son's teacher helped out by setting homework tasks that they could work on together.

I have touched briefly on areas of concern to all parents with preadolescent children, some of which give rise to particular challenges for parents with intellectual disability. In doing so, we need to remind ourselves that community expectations of parents of preadolescent children are high. We expect parents to enforce discipline, stimulate learning, help their children develop friendships, communicate with their children, help develop self-esteem, keep their children healthy and prevent anti-social activities such as drug taking, gambling and criminal behaviour. This is a tall order for all parents. For parents who rarely have appropriate past or current role models, few financial resources and friends and limited work opportunities undertaking these tasks alone may overwhelm them. All parents need some support with parenting; parents with intellectual disability will almost certainly need some support to meet community expectations.

For some parents their living situation has been an across generations experience of being a "welfare" family. By definition, being on welfare places parents in a subordinate and passive role and shapes others attitudes to the extent that parents are given less information and receive poorer quality services or none at all on the grounds that they are non-compliant or unlikely to benefit. Advocating for and empowering parents with intellectual disability is therefore a fundamental task for service providers. Putting yourself in their shoes to identify how you would like to be treated is a powerful strategy to ensure that parents are not disenfranchised.

In concluding I hope that this presentation has brought parents with intellectual disability to the forefront as parents first — and as parents of developing children, faced with the same challenges and rewards as all parents of preadolescent children. Parents with intellectual disability also face additional challenges — many of which stem from socio-economic disadvantage, unsatisfactory life experiences, social isolation and the intimate involvement of service agencies in some many aspects of their lives. Our primary task must be to work with parents to strengthen their family relationships and build their family resources in spite of their situations. In so doing we help parents to engage in more positive ways with their communities which, in turn, assists their children to develop in healthy and satisfying ways as they meet the challenges of the preadolescent years. Thank you.

Andron, L., & Tymchuk, A. (1987). Parents who are mentally retarded. In A. Craft (Ed.), Mental handicap and sexuality: Issues and perspectives (pp. 238-262). Tunbridge Wells: Costello.