Elizabeth J. Bruce. Ph.D. MAPS. MNALAG.

Abstract

Daunting is this parenting experience - for while fending for their children's optimum development, many parents themselves are operating in an emotional abyss. What is the reality of the family ? What are the realities of its members? Originally, my doctoral study in the early 90's confirmed the presence of a type of chronic grief which paralleled this parenting experience. But examination of the scores on an instrument commonly used to assess traumatic symptomatology convinced me that it was more complicated than this - some parents, particularly mothers were experiencing traumatic symptoms. Specifically, these mothers were unable to psychologically process this life experience. Fathers were sometimes experiencing the same dilemma but experiencing it differently. With some mothers and fathers at their emotional limits, it was not surprising that a child who was disabled would tell me that he or she could not tell their parents what was happening to them at school because "they [the parents] would get too upset". A similar story emerges for some siblings. Their parents did not know how frightened they were of their sibling who had all these strange behaviors. The title "Elite Parenting" is borne out of the need to recognize the enormous psychological challenge parents have - namely, to recover from their trauma and manage their chronic grief so that they are as able as possible to hone a skill base to parent their children. From this perspective, this lecture examines the realities of mothers, fathers and their children and introduces some possible important directions for early intervention.

Presentation

Before I started my Ph.D, I spent a long time with a large literature base devoted to stressand parenting a child with disability. Research on levels of stress in caregiving is one of my bugbears. One does not need to be Einstein to surmise the stress involved in parenting a child with disability. Of greater interest to me was a very small literature base to do with parental grief - a few parents, some - come academics wrote about grief "for the idealized normal child". This made sense. One might surmise this also. However the principles of grieving related to bereavement were being virtually translated indiscriminately across to this particular experience of grief. Parents emotions were being "jammed to fit" a stage model of grief which Kubler- Ross (1969) had extrapolated from observations with the terminally ill.

A paucity of academic study around grief as a construct allowed this practice to continue. The upshot was that parents who did not move sequentially through to a stage of "acceptance" were considered to have "unresolved grief" - an almost pathological connotation ! This was despite two important articles introducing the term "chronic sorrow" by Olshansky as far back as the 1960's. Basically, Olshansky argued that parents "should" endure a realistic sorrow - it would be a 'given' psychological undercurrent of parenting a child with disability.

My thesis was spawned from this fledgling field of literature. It emerged from a belief that grieving for parents of children with disability should be considered a 'normal' reaction to a "complicated loss" (Bruce & Schultz, 1992) and that notions of acceptance should be viewed as inappropriate - too tall an order. In fact I have never used the term acceptance with parents since a mother way back became extremely angry when I asked her about acceptance. Amidst her angry tears she asked me; " Why should I accept this ? It is unacceptable that this should happen to my child!" I agree - it almost feels disrespectful to accept such tragedy. And the same might follow for parents of children with disability. My work with parents centers around not having to accept- not having to "get over" their grief- instead we talk about what must be put into place if one is to "adapt" to this life experience. This shift seems important- but its timing is crucial- it must be an early rather than later shift in thinking.

Chronic grief- a normal condition

My PhD study was a monumental task. My husband formulated the study design - I would be out at night for three years interviewing families - I agreed ? What would I need to do to show that grief was a normal psychological condition for parents despite the age of their child. For 3 years I, with the help of a trusty colleague, Harry Zable revisited up to 60 families with varying ages of children (6 cohorts of children aged 3,6,9,12,15,18 - tracked over three years ) and talked to them about their lives - and they generously jammed into their unbelievably busy schedules, the filling out of the same set of measures each year ( Bruce, Schultz, Smyrnios, and Schultz, 1994; Bruce, Schultz, & Smyrnios, 1996) . What came out of this ? Grieving was academically shown to be an ongoing feature of rearing a child with intellectual disability - given the ongoing and dynamic nature of the loss - "entirely normal".

Partnerships at risk

Mothers scored higher than fathers on all measures to do with emotional distress in this study. This was not to say that fathers they did not cognitively take on board what had happened, for on a Wishing scale, there were no differences between mothers and fathers wishing for "what might have been". What seemed to be happening, although one could not clearly decipher whether this was about just about male grieving style, was that mothers were being 'forced 'to face their loss. It was symbolized in every normal child with whom they came in contact. But not so for the fathers. They were at work.

Mothers were being overdosed to their loss, and fathers under-dosed. In fact they were sharing different realities. Dad would come home at the end of the day, and Mum would drop the bombs which had been threatening and hurting her throughout the day. Needless to say, without aligning these parents realities, the Mum, herself, becomes the bomb which sometimes needs to be avoided. And along these lines, I have seen several men who do not want to go home purely because they have been under-dosed on the loss and have not incrementally learnt some psychological coping strategies. Marriages and partnerships at risk!

Trauma and grief

One of the instruments I employed in my study was the Impact of Event Scale (Horowitz, Wilner, & Alverez, 1979). It has been commonly used as an instrument to measure traumatic response, and in the assessment of Posttraumatic Stress Disorder. Essentially it measures intrusions, often re-enactments or images which represent the traumatic event, and avoidance- the need to ward off such images. At the time I had been writing copious Victims of Crime reports - teenagers in Pub brawls, assaults - even black eyes were being considered potential for this relatively new diagnosis of PTSD.

It had been staring me in the face - and it could have been surmised - but it was caught up, hiding behind all this focus on stress. There was trauma here. Putting together some of the parent's responses to diagnosis and their life, the scores on the Impact of Event scale and the criteria in the DSM-IV for the diagnosis of Posttraumatic Stress Disorder.... ["... Traumatic events that are experienced directly include serious injury experienced by a family member - or learning that one's child has a life-threatening disease. The likelihood of developing this disorder may increase as the intensity of and physical proximity to the stressor increase..."(p.424;DSM-IV)] , it became apparent that in some cases, parents had been traumatized by their child's condition.- grieving as a process had not even started.

Attachment at risk

Grieving is a complex psychological process of adjusting to a new version of the world and one's place in that world. It is made more complex if parents must turn full circle to embrace a condition in their child which has been traditionally feared. This process of working through is actually constricted if one is traumatized. Individuals are generally 'lost' in this process. They operate on rote. Routines are a "can-do", but complex, emotionally demanding tasks are a "can't do". So how were these parents going to fare in their parenting. In most cases, parents had not even been debriefed. Mums and Dads returned home from diagnosis in an emotional abyss. How would an "attachment bond" suffer in the aftermath of this trauma.

At around this time, I began talking both individually and in groups with parents of children with disability. Groups of mainly mums and I, talked about grief, trauma and attachment.

For most mothers, their child represented a vague and frightening experience - a challenge like no other they had before. Some mums were suffering from the fear that they could not attach to their child, guilty that they could not "feel" for their child - and then overcompensating to try and hide a "numbness". Not surprisingly, a pall of silence would surround the mum who said that she sometimes wished her child would not make it through the night.

Parenting tasks at risk

Throughout this time I was seeing siblings of children with intellectual disability and autism. I was also seeing children with mild disability who were integrated into mainstream schools. Two things stood out. Both were being traumatized by their experiences and neither were able to debrief with their parents. Parents were emotionally overwhelmed and unable to take any more emotion on board. Not their fault - but lots of things were falling apart. Often I would be reeling off a number of things that could be put into place to a mother who was simply exhausted. Over time, optimism had incrementally seeped out of her. The fact that the sibling of the child with autism was traumatized by their brother was too much, too late.

The skill base of Block and Tackle Groups

Two years ago, I began my group skill- workshops for parents - 'Block and Tackle' groups. The skill base introduced in these groups gathered quite a bit of momentum from some work I did with elite athletes of the Victorian Institute of Sport. These athletes were being given a bucket-full of psychological skills to enable them to mount attacks on negativity, practice perfecting their approach to vaulting, debrief from losses on the running-track and grieve losses of identity should their athletic self have to retire from sport. All of this attention focused on the physical ability of one person.!

This skill-base should be given to parents. A notion of building a concept such as 'Elite Parenting" - actually respecting the extra distance involved for these parents seemed a useful building block. "Block and Tackle" groups turn attention to legitimating the psychological condition which parents will necessarily experience, and then offering them a bucket-load of education and re-framing skills. Naming the psychological context which surrounds this life experience - calling it what it is - 'It is trauma. There is chronic grief. This is normal" is an integral start.

In fact, it is this very realization which allows parents for the first time to let themselves off the hook of guilt. For when we talk about the serious psychological adaptation which is challenging them, the fact that they "are traumatized- that they should be grieving" - suddenly, this parenting experience can be reinterpreted. Specifically, it is reinterpreted from a personal failure in "embracing" this parenting experience, to a respect for what they have been, and are endeavouring to master.

In respecting the grief and its hold, the skill-base begins. How will they process their emotionally grueling experiences so that they can parent this child and their siblings ? What must they learn to parent this child? How will they get their child to a point where he or she is set up- should anything happen to them? .

Conclusion and some outcomes

Recently in one of my Block and Tackle groups, I had been talking about a 40 plus woman who had come to see me. A relationship with a male-friend had just finished up. Her life at forty-plus seemed to be "running out, tapering off". She was not married, had no children and was in a job she disliked. Like many people these days, she was on anti-depressants. I asked her if it was worth looking for another job ? She replied "What's the point, I'm too old?" I asked her whether she might seek a friendship with a man- whatever ?." She replied. "What's the point, I'm too old. No-one would want someone this old !" I spent a terribly laborious session trying to help her find a road which led into her future. A group of Mums, and one (as always!) Dad in the Block and Tackle group were discussing what this parenting experience had offered them. One of the young mums with two boys with autism had no problems finding a word. The word was "purpose". Block and Tackle groups are about the coaching and harnessing of this purpose.

From all of this, some mandates for early Intervention might be summarized :.

Thankyou for the opportunity of speaking with you about the important work that you do.

Bruce, E.J, & Schultz (1992). Complicated Loss: Considerations in counselling the parents of a child with an intellectual disability. The Australian Counselling Psychologist, 8, 8-20.

Bruce, E.J., Schultz, C.L., Smyrnios, K.X., & Schultz, N.C. (1993). Discrepancy and loss in parenting: A comparative study of mothers and fathers of children with and without intellectual disability. Children Australia, 18, 18-24.

Bruce ,E.J., Schultz, C.L., Smyrnios, K.X., & Schultz, N.C. (1994). Grieving related to development: A preliminary comparison of three age-cohorts of parents of children with intellectual disability. British Journal of Medical Psychology, 67, 37-52.

Bruce, E.J., Schultz, C.L., & Smyrnios, K.X. (1996). A longitudinal study of the grief of mothers and fathers of children with intellectual disability. British Journal of Medical Psychology, 69, 33-45.

Bruce, E.J. & Schultz, C.L. (1998). Grieving nonfinite loss. Journal of Family Studies, 4, 215-220.

Bruce,E.J. & Schultz (In process- to be published by Brookes. USA, 2000). Dealing with the Axeman: Grieving nonfinite loss.

stress. Psychosomatic Medicine, 41, 209-218.

Kubler-Ross. E. (1969). On death and dying. Macmillan: New York.

Olshansky, S. (1962). Chronic Sorrow: A response to having a mentally defective child. Social casework, 43, 190-193.