'Helping Them Hold Up Their World'— Parents of Children with Complex Needs and the Beneficent Organisation

...preparation, organising yourself, identifying outcomes, what you want to get out of meetings or from the services, to empower parents to do it themselves or just be there in the background helping them hold up their world, you know (Manager, Amaze)

In a lovely article on many of the inherent contradictions of being a clinical psychologist, David Smail1 said that ‘we cannot escape the clinic’. When it comes to helping people experiencing mental distress, it would be a callous society that stood back and offered them nothing on the presumption that, as Charles Waldegrave points out, therapy is little more than making poor people feel a bit better about themselves.2 Perhaps the problem however is not with therapy per se but with what therapy has become. The therapeutic relationship, when understood as an instance of ordinary humanity and as a source of solidarity can be eminently valuable. When it is treated as a technology of change with a progressive emphasis on what’s inside people’s heads, and that culminates in people becoming patients schooled to bear responsibility for circumstances beyond their © The Author(s) 2017

C. Walker et al., Building a New Community Psychology of Mental Health, DOI 10.1057/978-1-137-36099-1_6

control, then it loses its value.1 If we pare back the therapeutic process to understand Roger’s unconditional positive regard and empathy, not as tools to achieve change, but as an end in and of themselves. We arrive at a position where compassion, rather than change, becomes the overriding impulse allowing us to see just how many other sites of social solidarity, compassion and humanity, can be understood within this broader care framework. This is because empathy, support, positive regard and compassion can be delivered in most places, by most people.

Just recently a local organisation that works to support the parents of children with complex needs asked one of us if we might be able to help out with some work that they were doing. Amaze, a Brighton-based charity, were hoping that they might explore the impact of their services on the parents who use them. Specifically they run a service called the Disability Living Allowance (DLA) project which they said contributed to a reduction in poverty in the local area. Believing that they would expect academic things from us, we duly did some academic things. We did a literature review of the experiences of parents of children with complex needs. The organisation had told us that by complex needs, they were referring to children with a range of physical and behavioural difficulties, diagnosed or undiagnosed. Sure enough we were confronted by an array of papers that appeared to indicate that the parents of children with chronic pain, developmental difficulties, physical disabilities and behavioural difficulties are more likely to experience a vast range of suffering and disadvantage, including depression, anxiety and illness.3,4 It also seemed to be pretty uncontested that if you have a child with some form of disability, the child will be more likely to grow up in poverty.5

They used to feed him at school, obviously I have him all the time now and that has an impact on how much food I’ve got and then there’s washing clothes and things like that because he’s been a bit incontinent and he has got better but sometimes he just can’t control things like that (Deborah, parent)

On top of this range of stresses and pressures, it also appears to be the case that parents often receive a poor deal from their interactions with health professionals. One of the problems with categorising people6 is that we then tend to assign more value to some people than to others. And when a system of knowledge assigns less value to someone, you can also be sure that those who subscribe to it—be they academic, medical or the public—go on to assign responsibility for this low value. Previous work seemed to suggest that, as with so many indicators of poor social performance, it was the parents who were routinely blamed by other people for their failure to produce and manage ‘typical’ children.3

Another potential problem frequently encountered by parents of children with complex needs is that they and their children find themselves becoming objects of intense observation and documentation—a process reserved for those who perform outside of the ‘typical’ range. The tools of objective science (e.g. questionnaires, categorisations and inspections) are generally agreed to be the best way forward to try to put in place support for these children and their families. One potential problem is that these tools privilege those with expert scientific and/or technical knowledge. So parents often find themselves encountering paediatricians, psychiatrists, psychologists, counsellors, nurses, teachers, SENcos (special educational needs coordinators), head teachers and other professionals who frequently discuss their children in inhospitable environments where parents’ knowledge—failing as it does to embody the authority of science—can be neglected, sidelined and disqualified.3 That parents spend almost every hour with their children, observing them, caring for them, devising ways to help them to develop, be content and comfortable, and have built up a huge reservoir of detailed knowledge of their children, is often lost or marginalised in this system. They are often deemed incapable of objectivity, and with less experience in the languages of medicine, law and education that are often used to describe their child, this means that their huge reservoirs of knowledge and understanding can be marginalised into bit-part roles that one may, at a (big) stretch, refer to as ‘Participation’.

And so one of the first things we learnt from carrying out interviews with many of the parent carers from Amaze was that their experiences agreed with the literature above. Many had experienced exclusion from decision-making and were struggling financially. For many, the marginalisation, isolation, stigmatisation, financial strain, loneliness and exhausting vigilance of complex regimes of care gets too much.7 Many had experienced periods of prolonged and debilitating distress, coupled with feelings of despair and helplessness.4,7 All of these parents had at some point found themselves sitting in their GP surgeries talking about ‘depression’ or about ‘anxiety’. At the end of this appointment, they would be referred to taking antidepressants or talking to a counsellor. These conversations about pills and therapy were thought necessary because it was often assumed that neurotransmitters and/or negative thoughts and feelings were the primary cause of their difficulties rather than, for instance, a consequence.

Yeah, I’ve been prescribed sleeping pills for probably about five years, and back and forth, and they’ve spoken to me about, well you know when are you going to come off of these, and I say well you know what I’ve got at home. They all know [child] at the GPs’. And you know, in some ways I’m just sort of thankful that I’m here and I can look after [child] and you know, if the price is sleeping pills, well so be it you know (Penny, parent)

Let’s at this stage engage in an (admittedly limited) thought experiment. Below is a table of the various experiences that many parents of children with complex needs often have. Under the assumption that most parents will be directed to psychotherapy or medication, let’s think through which of the following we think are most likely to cause the high mental distress, low mood, exhaustion, desperation and hopelessness that many experience.

Okay, it’s time to confess. These comparisons are silly because of course it isn’t an either/or. They are of course both intimately linked to the embodied, visceral distress that many people experience. But only one can really be understood as causal. Cognitive and biological aspects are secondary to the social, material and discursive relations that cause people to be distressed. All experience is enabled by biological capacities which constitute our embodiment in the material world. But these biological capacities do not cause these things. Distress is an acquired, embodied way of being in the world8 and it is one that means that every parent we talked to was taking, or had very recently taken, antidepressants.

When discussing the reasons behind their distress, there was certainty that the range of extreme challenges that they had experienced as a parent of a child with complex needs played a significant part. They were overwhelmingly of the opinion that the sadness, apathy, tearfulness and inability to sleep that the doctor had called depression might just be related to the range of traumas, social dislocations, oppressive relationships, isolations and strain of poverty and disadvantage that had gone on for so long. They described going to the doctors because they were at the end of their tether, running on empty, or having had enough. Of course as we all know, ‘being at the end of your tether’ isn’t technically an illness. But it can be converted into an ‘illness’ and an illness that needed treatment. Experiences of distress are often understood as symptoms, but they can be better understood as complex attempts to maintain survival, dignity and integrity in the face of past and current trauma.9

So does every parent of a child with complex needs end up distressed enough to visit their GP for treatment? No. But an awful lot of them do. These parents described repeated breakdowns and the seemingly inescapable need for medication to cope with their everyday lives. They saw medication as the cost of being able to look after their children and saw it as inevitable that if you have a child with complex needs, you will suffer from prolonged distress and will almost certainly be on antidepressants.

Of course, many of the parents, myself included, have serious depression. I was very depressed when my son was diagnosed and yes, when the school summer holidays and vacations are coming up all our parents from the support group say ‘OK, it’s time to be alone again.’ [Laughs] So it is a lot of stress, many antidepressants, it is normal to be on antidepressants (Donna, parent)

However, something else interesting transpired from these conversations. It turned out that there was another therapist in the midst and quite an odd one at that. As a therapist she was pretty disinterested in norepinephrine, serotonin and synaptic clefts. Okay, maybe no surprise there. But she was also pretty disinterested in cognitive distortions and cognitive behavioural therapy. This therapist hadn’t received any professional training in mental health and didn’t seem to know much about it. Now at this point some of you might be thinking about evidence-based practice and the National Institute of Clinical Excellence (NICE), wondering why this irresponsible person hasn’t been struck off.

Except it isn’t a person. This therapist is a community and voluntary sector group led by parent carers and they have struck upon the therapeutic approach of helping people with the things they are actually struggling with.

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