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

 

Positive aspects of parenting a disabled child

Many parents raising a disabled child report positive changes in themselves and their family, whilst also acknowledging the potential additional stress.

A study in 2017 (1) found key themes:

  • Increased sense of personal strength and confidence
  • Changed priorities
  • Greater appreciation of life
  • Pleasure in the child’s accomplishments
  • Increased faith/spirituality
  • More meaningful relationship
  • Positive effect that the child has on the wider community

The definition of positive is sometimes hard to pin down and there are conflicting views over whether personal positive growth is actual long-term change or perceived as a coping strategy, such as cognitive re-appraisal.

Early after diagnosis parents may display positive coping strategies, such as finding a silver lining or saying that others are worse off (positive reappraisal).  Over time this can lead to a deeper meaning making process and positive perceptions of parenting, however, this is always framed within a broader reality that incorporates positive and negative, sometimes simultaneously (2).  In line with literature on posttraumatic growth ‘it is important to bear in mind that the experience of growth is not the same as the absence of personal distress’. (3)

An online survey by affinityhub.uk has also shown positive aspects reported by parents, such as:

  • 63% of respondents reported a greater tolerance of their own child’s difference as well as in society as a whole
  • 70% of respondents reported feeling a fighting spirit on behalf of their disabled child
  • 75% of respondents reported feeling pride when they thought of their child

The stresses and worries of parenting a disabled child are well documented.  Fighting for limited resources, stigma and lack of social support are all factors that may affect our mental health. However, it is important to remember both sides of this reality and with support from others, particularly parents in the same boat, hopefully we can recognise the increased tolerance, empathy and resilience we develop as parents. This can only have a beneficial impact on our children and society as a whole. We are great advocates for our children and making the world a more accepting and tolerant place.

  1. Beighton, C. & Wills, J. (2017) Are parents identifying positive aspects to parenting their child with an intellectual disability or are they just coping? A qualitative exploration, Journal of Intellectual Disabilities, Vol. 21(4), 325-345
  2. Hastings, R.P. & Taunt, H. (2002) Positive perceptions in families of children with developmental disabilities. American Journal on Mental Retardation. 107 (2):116-127
  3. Calhoun, L. & Tedeschi, R. (2010) Facilitating Posttraumatic Growth: A Clinician’s Guide, Routledge: Oxfordshire, p.20

Journey, Interrupted

There is a recognisable journey that families go on when they have a disabled child.  In its simplest form, the early years can be challenging, yet shock, anger and denial can evolve into a new acceptance and adaptation of a new life. It may take time, years even, but it is possible.

Once support and education are put in place and like-minded families found, a plateau can be reached where the family take stock, often realising that although life is different there can be a new-found wisdom, expertise and putting things into perspective.  Many parents also report increased empathy, patience and tolerance.

The challenges don’t dissipate – transitions to secondary school and adulthood, the uncertainty of puberty and jostling for appropriate services come along. It becomes clearer whether your child will live independently and realising that certain milestones may be very hard to achieve, or not met at all, again challenge a family’s capacity to adapt, grow and accept difference.  Miraculously most families do manage this, sanity and relationships mainly still intact. This is a testament to human strength, endurance and capacity to tolerate adversity.

The journey or emotional arc is very finely balanced. We, as parents, know there’ll be hiccups along the way. Having children is never plain sailing. At the moment though, it seems that the odds are stacked against parents making it through to a satisfying and fulfilling place of acceptance.  Cuts to services, lack of understanding, long waiting lists.  No space or time to acknowledge how daily living takes its toll on our mental well-being and that of our child.    There are only so many battles humans can endure before we give into helplessness.   Ironically this is when parents most need the state’s support and the damage and costs are higher.  With a more co-ordinated support package, including early intervention and signposting for help, the scenario in which many find themselves could be avoided.

The increased battles that parents are having to undertake are seen in recent news: Nascot Lawns, Short Breaks petition to Downing Street, Exclusions review.  Parents become activists and will fight for their young.  Whilst positive that action is happening, it shouldn’t have to be this way; the role of lobbyist and campaigner added to already over-worked parent-carers. There is the risk  of a pyrrhic victory if the toll on the parents’ emotional well-being is too great.  As the charity Contact states ‘families want to put their energy into enjoying life with their disabled child rather than fighting the system to get services’. [1]

 

[1] Contact A Family: What makes my family stronger? May 2009

 

www.affinityhub.uk

Emotional support for parents of disabled children

Self care for Parent Carers

As a parent of a disabled child, it can be hard to take care of yourself when there are so many other demands on your time.  Fighting for services, dealing with your own emotional fallout as well as lack of sleep or downtime can take its toll.  Here I look at some simple tips for you to develop your own ‘Carer care package’.

Social support

Turn to friends, family or your partner for help. Tell them if you need a chat, time out or just a hug.  People generally want to help.  Research suggests that those parents who receive more, or more helpful, social support also report higher levels of well being. (1)

Just breathe

A simple breathing exercise can help us deal with stress when challenges or frustrations are pushing us to the edge.  Try this:

Breathe in through the nose for the count of 3
Breathe out through your mouth for a count of 6
Repeat 5 times

Book in some ‘me-time’

Research shows that having some time where you lose yourself in the ‘flow’ of an activity can be really grounding and have relaxation benefits. Whether it is sitting down with a good book and a cup of tea, knitting, gardening or going for a jog.  Protect this time, mark it out in your diary, do not answer the telephone or the door.  It’s your time and it’s precious.

Identify your strengths

Sometimes the daily grind can get us down. It can be helpful to remember what is going well and what our strengths are.  Think about:

  • What is the best thing about you?
  • What is your most significant achievement?
  • Where have you shown resilience?
  • How can these strengths help you in the future?

Writing them down can help you to appreciate your achievements.

What doesn’t kill you makes you stronger…

Whilst Nietzsche’s motto is rather simplified, research has shown a correlation between those who have been through a difficult or traumatic experience and those that show something called ‘post-traumatic growth’ (3). In my survey at affinityhub.uk around three-quarters of parents of disabled children reported an increase in fighting spirit, sense of expertise and putting life in perspective.  Recognise what you have achieved and do so on a daily basis.  You are an advocate on behalf of your child. You are an ambassador to help society become more inclusive and accepting.

Basic self-care

We all know what they are:

  • Get enough sleep
  • Exercise
  • Eat well
  • Avoid alcohol, drugs or smoking as a way of coping

They may seem simple but can make the world of difference. A 20 minute walk around the block can help put things into perspective.  Going to bed half an hour earlier can make you feel more refreshed.

For more tips on wellbeing click here

Speak to a professional

There may be times in your life when despite doing all the above you feel you need to speak to someone like a counsellor or psychologist about how you are feeling.  If so, you can talk to your GP for a referral or there is a list of organisations and private professionals who have personal or professional experience of supporting parents carers on the affinityhub.uk website.

Survey

If you would like to take part in a survey on ‘The emotional impact of parenting a disabled child’ please go to the website affinityhub.uk

For updates on affinityhub.uk and disability news please follow us on facebook and twitter.

References

  1. White and Hastings, ‘Social and Professional support for Parents of Adolescents with Severe Intellectual Disabilities’ (2004) in Journal of Applied Research in Intellectual Disabilities
  2. Csikszentmihalyi, M. Flow: The Classic work on how to achieve happiness(2002)
  3. Joseph, S. What Doesn’t Kill Us: A guide to overcoming adversity and moving forward (2011)

 

5 things every parent of a disabled child should know

  1. It’s not your fault
    Parents often feel an illogical guilt about their disabled child.  It’s part of the parenting instinct to protect your child.  However, sometimes guilt can get in the way of looking after yourself and your child.  Give yourself a break.
  2. Sometimes you fight, sometimes you rest
    There are lots of battles involved in parenting a disabled child.  Know when to fight, and when to save your energy for another time.
  3. Your child is still a child
    Remember that your child still needs cuddles, play, interaction as any other child. It can be hard as a parent when it feels like the demands of things such as physiotherapy or speech therapy take away from the precious time of just being with your child.
  4. Make contact with other parents of children with special needs
    You are not alone. Speaking to others who have similar concerns and frustrations can really help you feel less isolated.
  5. Look after yourself
    You are a carer and you need to be nurtured.   That may involve respite, time with others, keeping up hobbies or time spent without appointments and other pressures.  Give yourself permission to take time for yourself.

    www.affinityhub.uk
    Emotional support for parents of children with special needs