Guilt

Common feelings experienced by parents of disabled children

Jo Griffin of www.affinityhub.uk looks at the complex issue of guilt with  Rebecca Loo, Occupational Therapist.

Guilt

Many parents feel guilty over their child’s disability which can seem irrational to an outside observer.  There is a primal desire in most of us to protect our children at all costs.  On receiving negative news it can feel like we have failed to do this, however much we can see, logically, that it was out of our hands and not our responsibility.  In an online survey I have been undertaking via affinityhub.uk,  66% of respondents reported feeling guilty about their child’s disability

Most parents do everything they can to help their child and we can take on the mantel of guilt; feeling responsible for our child and the challenges they face. I believe this is partly in response to a helplessness that parents may experience when something happens that is out of their control.  By feeling guilty it takes back some control for the parent, however inappropriately:

‘People often use the strategy of blaming themselves to protect their cherished beliefs about the controllability, predictability and justice of the world.  By blaming themselves they are able to hang on to their beliefs. (After all, if I am to blame, I could have prevented the traumatic event from happening. If I could have prevented it from happening, then my sense of control is maintained) (Joseph, 2011, p. 117).

It is hard to acknowledge that sometimes, despite all our best efforts, we cannot protect our children from negative circumstances.  This is exacerbated with a disabled child as we do not want them to experience pain or suffering, but we don’t always know the best way to help them.  We therefore end up handing over our role of being the ‘expert’ to other professionals, such as doctors, physiotherapists and speech and language therapists.  The message is that we no longer know what is best for our child, or how to help them, which again layers on the guilt.

We are not expected to be trained doctors, health visitors, midwifes, social workers and psychologists all rolled into one. Guilt may be exacerbated by society’s expectations and idealisations of the parent role and the judgement on parents around their children. This can be seen in examples where parents have been blamed by the public for their disabled child having a tantrum in a supermarket or not conforming in school.   As Sartre (1943) states, there can be something threatening about the ‘look’ of the other.  If there was greater tolerance of difference and disability in society at large, there would be less of a pressure on us as parents to be ‘perfect’.  It would be ok for us to be ‘good enough’ (Winnicott, 1953).

Some behaviours that challenge, or the difficulties children face, can also be part of typical development, however, because parents of disabled children already have a heightened sensitivity to their child’s needs they take on responsibility for any negativity.  As Barrett (2010) states:

parents often assume responsibility for every additional problem their child suffers – if he is miserable it is because they failed to make him happy; if he is ill, it is because they failed to take adequate care of him…if any or all of these things were to happen to an able-bodied [sic] child you would, in all probability, simply accept them as things to be expected when you have children. Why should it be any different in the case of a disabled child?’ (p. 3)

At times it can be useful to focus on the ‘ordinariness and not the “special-ness” of the child’ (Bartram, 2009, p.11). Parents can find it confusing to think about what is the disability and what is the child and the way this becomes entangled.  They sometimes lose the sense of normalcy that parents of non-disabled children have, because they have often been through a traumatic time which triggers their sense of hypervigilance.

Rebecca Loo, Occupational Therapist and mum to a son with hemiplegia and medical needs shares her experience:

‘I often think about guilt: my own and that of the mothers that I work with. I can recall clearly how personally responsible I felt for my son’s disability in the early stages. I questioned every tiny decision I made during my pregnancy – should I have had that glass of wine?… was it because I clumsily tripped over that time?… did I pick up my toddler when I shouldn’t have? I even had thoughts that maybe a disabled child was punishment for me marrying a foreigner, which shows how distanced from rationality my thinking was. Even though in my logical, rational brain I knew that disabilities ‘just happen sometimes’ the emotional part of my brain just couldn’t shake off the feeling that I, as his mother, must be entirely responsible.

For me, the dawning came when I was working with other mothers of children with disabilities. On the occasions where I had developed trust and mothers opened up to me, I would find them expressing similar “what ifs” to my own. What if I’d not eaten that soft cheese?… maybe I should have rested more? I shouldn’t have missed that appointment that day. I then found my professional, rational self, reassuring them that they were in no way responsible for their child’s disability. I found it entirely obvious and fully believable that they carried no responsibility, whatsoever. On the one hand I truly believed it for them, and yet to apply that belief to myself was something else. So, one day I decided (and it was a decision) that I was going to show myself the same compassion as I gave the mothers I worked with. I would actively accept that I was no more responsible for my son’s disability than I was for his eye colour or gender.

I talk here about mothers. This is because the conversations I have had about guilt appear to me to be very specifically female-contextualised. I wish I had more chance to engage with fathers, but even in today’s times of gender-equality, the primary care-giver for disabled children still generally tends to be the mother. I do wonder how and whether guilt is such a factor for fathers, or whether guilt grows directly from the carrying of and delivering of the child, or even something deep within female psychology or the ways we are socialised as girls and women.

As an Occupational Therapist, it is my role to address the day to day difficulties children face with their ability to self-care, do their school work and engage in play and leisure. It strikes me as significant that when I begin to address some of these areas, I quite often end up having conversations about guilt. For example, a child may be referred to me because they cannot wipe their bottom themselves. When I begin to talk about what has been already tried, quite often mothers will sheepishly admit that they never really encouraged their child to wipe their own bottom. They provided care, over and above that needed, because their deeply held guilt demanded that they nurtured their child, or even compensated the child for the disability they somehow felt was of their making. I have seen a few families where the manifestation of maternal guilt presents in children who are allowed to fall asleep on sofas and be carried to bed, and hence don’t get chance to develop skills around bedtime self-soothing. I see it when children ‘get away with’ bad behaviour whilst siblings are corrected, because of how the parents frame themselves as responsible for their child’s disability. Of course, these situations are highly complex, with guilt being only one of many factors. However, I do really believe that guilt is a significant theme. Sometimes just by talking openly about guilt with a mother I can find that in a short time a child’s difficulty with an activity can resolve. Somehow acknowledging and being open about guilt, can dispel its hold over us and the way we parent.

The process of casting off guilt is also complex and requires time, reassurance and self-compassion. These things are at a premium when caring for a disabled child, of course. What we must try and avoid therefore is being made to feel guilty for feeling guilty! Or feeling guilty for any of the complex feelings we experience as parents of children with disabilities.’

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Affinityhub.uk aims to provide emotional support to parents of disabled children by signposting to organisations and private practitioners who have experience and knowledge of supporting parent-carers.  The site outlines common emotional responses and quotes from other parents. There is also a survey parents can complete to express their own emotional reactions and share with others on the website.

Rebecca leads the Orthotics Campaign, a group of disabled people and carers who together are pressing for better NHS provision of footwear, splints and other Orthotic devices. If you’d like to add your voice to theirs please visit www.orthoticscampaign.org.uk or email info@orthoticscampaign.org.uk

References

Barrett, (2010) You and Your Disabled Child: A practical guide for parents, West Sussex: Woodfield Publishing Ltd.

Bartram, P. (2010) Understanding your young child with special needs, London: Jessica Kingsley

Joseph, S. (2011) What Doesn’t Kill Us: A guide to overcoming adversity and moving forward, Piatkus: London

Sartre, J.P. (1943) Being and Nothingness, Paris: Routledge Classics

Winnicott, D. (1953)  Playing and Reality, Routledge