The emotional impact of parenting a disabled child

The emotional impact of parenting a disabled child

Instead of writing my own post for Mental Health Week, I’d like to share my column today with Jo Griffin, a Counselling Psychologist and parent carer. I met Jo through online and we’ve worked together on this post about the emotional impact of caring on parents of disabled children. Jo has pulled together research that evidences the impact of parental caring while I have added some suggestions of how you can take care of yourself and what this means.

Jo founded www.affinityhub.uk to signpost parent carers to emotional support. She's also undertaking a Doctorate on emotional wellbeing in parent carers at Metanoia Institute and Middlesex University. 

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The vulnerability of parent carers by Jo Griffin

It won’t be a surprise to hear that there is an increased vulnerability to the emotional wellbeing of parent carers.  Fighting for services, feeling de-skilled, experiencing stigma and prejudice as well as coming to terms with life being different from how we expected can all take their toll.

What may surprise parents though, is that there is a plethora of research out there highlighting these risks, but the studies rarely get shared with parent carers themselves, the very people the research impacts. I would like to try and rectify that.

Research

Many studies highlight the risk to mental health, including increased stress and anxiety1, depression2 and other emotional strains3 There is also a growing literature on the potential positive aspects of parenting a disabled child, including increased meaning or growth4, finding benefit5 and positive perceptions6 given the right circumstances and when appropriate support is in place. Other studies look at the impact on the wider family, including grandparents7, and siblings8.

It may help you to know that this body of research exists particularly if you are having to argue for extra support or acknowledgement of difficulties. Our struggles cannot be dismissed as personal failings when the literature is so conclusive of the extra pressures we face.   Research can be power; it’s time that we as parent carers re-claim this as our own.

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A multitude of emotions

The emotional impact of parenting a disabled child is complex and this is reflected in studies.  We can feel a range of emotions, often all in one day, dependent on what is happening in our life.  Referred to as an ‘emotional rollercoaster’, it is beautifully summed up by the following parent carer quote:

‘My greatest joy and my greatest heartache’ 

Myers, B. J., Mackintosh, V. H. and Goin-Kochel, R. P. (2009)9

We have to embrace the paradox10 involved in special needs parenting. We are our child’s greatest advocate but this can have an impact on our wellbeing. No one can fight forever without there being a knock on effect.  Moving from worrier to warrior is not an easy journey and neither position is without its challenges. 

In a survey I conducted on the affinityhub.uk pages parents reported both positive and negative11 responses. The negatives included: Anxiety, stress or worry; feeling depressed or down; helplessness & frustration; anger; guilt; grief and loss; chronic sorrow and trauma.  There was also jealousy of ‘typical families’, confusion, fear of the future and concerns about the impact on the wider family. The reasons for this were multifaceted and included: isolation, inaccessibility of services and activities as well as lack of support and understanding from society.  The practical and the emotional factors overlapped and were bi-directional. 

Many parents also reported a positive impact, stating that they had: grown as a person; put life into perspective and appreciated what was really important; greater expertise, mastery, knowledge & awareness; made new friends who truly understood them; more determination, fight & strength as well as enjoyment and pride in their child.  Some reported that it had made them ‘a better person’ with greater understanding and empathy. Around half the respondents referred to hope and having a sense of purpose.

You are not alone, even when it feels like you are

I hope that by raising awareness of the studies that exist we can realise we are not alone.  When my son was growing up, despite the numerous professionals in our life, not one ever asked how I was doing or acknowledged that the situation, especially the behaviours that I found challenging, could be difficult for me and our wider family.  It left me with a feeling of failure, that in some way I was weak or not able to cope whereas others were.  I realise now that was not the case.   We all have our struggles, our times of despair or ‘failures’.  It is ok, we are ordinary human beings in an extraordinary situation for which nothing can really prepare us.     Sometimes hearing from others in a similar situation can be helpful, even empowering. I have included quotes from parent carers on the affinityhub.uk website about their experiences that may well resonate with your experience.  https://www.affinityhub.uk/2/Words-of-wisdom.html

Angela’s own therapeutic support strategies

I really relate to all of what Jo has written, but specifically to Jo’s last paragraph where she writes about not one professional asking her how she was. It is assumed that we ‘just get on with it’ or if it is clear the we need support, there often isn’t any funding or anyone who can provide that support outside of friends or family.

In addition any suggestion that we may need help can feel like a personal failure; surely we can manage to exist on two hours sleep a night, hold down a full-time job, support a home, often with other children, manage challenging situations or behaviour, fight for services and education and have no mental scarring!  Knowing and feeling are two very different things. I knew I wasn’t a failure, but I couldn’t shift the feeling that I was. Whatever I tried never felt enough. As a result, I began to develop many strategies to help me, many of which I share with parents who may be in a similar situation to myself.

Be realistic: Are you trying to cope with everything alone? Do you stop people from helping in case they don’t help in the way you want them too? I used to do this and it isn’t helpful, it can actually build resentment and create further isolation.

Self-Care: This may not be what you think it is. It isn’t necessarily a trip to the nail salon or a spa day (although those are great too), but self-care is also grabbing 10 minutes to yourself, locking yourself in the loo with your phone or a book. Sitting down with a coffee. Asking a neighbour to come in and sit with your children for 15 minutes. Joining a support group, whether in person or online. Exploring what's available in your local area – is there a carer support group, most areas have at least one. Contact the Short Breaks team at the local authority, look up charities and most of all speak to other parents.

Become aware of unhelpful feelings: We all experience them, for example, guilt or anger. Use them instead to drive you to act on why you are feeling that way. Guilt can really trap your mind and make you believe what you are feeling is truth, so having awareness of it can help deal with it when you need to. 

Remember that feelings pass: They come but they also go again – how you feel now is very different to how you felt last year, last month or last week and will be different again next week, next month, next year.

If adopting a strategy like mindfulness remember that you can do as little or as much as you need to and it doesn’t have to be the whole 45 minutes – 10 minutes ‘being in the moment’ while you go for a walk will help calm a fractious mind. YouTube or Podcasts are great for finding relaxation strategies too, especially if leaving the house is difficult.

Good nutrition: Eat and drink healthily and lots of water (even flavoured with sugar-free squash or a little fruit juice) helps keep you hydrated.

Trust your parenting: Know that you know your children and their needs and be confident knowing you don’t have to justify them to anyone. You may have to evidence their difficulties if you're seeking help and support, but that is very different to justifying their behaviours to family or peers.

Quiet the inner critic: Above all don’t be your own worse critic. If negative thoughts automatically spring to mind, or you have a tendency to be self-critical, remind yourself how disempowering this is, not just to you, but to everyone you're trying to support. Be kind to yourself – remind yourself that when you've had a difficult day or needed a daytime nap that it was OK to do so – it was what your body needed during a difficult day. Tomorrow will be different. Today I ate unhealthily, but that is OK, tomorrow I will try to eat more healthily. I became frustrated due to outside factors, but that’s OK, tomorrow I will try a different approach. Adopting self-tolerance and understanding is one of the best strategies of all!

Also Read

References

  1. Keenan, B.M., Newman, L.K., Gray, K.M. & Rinehard, N. J. (2016) Parents of Children with ASD Experience More Psychological Distress, Parenting Stress and Attachment-Related Anxiety, Journal of Autism & Developmental Disorders, 46:2979-2991, Doi 10.1007/s10803-016-2836-z
  2. Totsika, V., Hastings, R. P., Emerson, E., Lancaster, G.A. & Berridge, D.M. (2011) A population-based investigation of behavioural and emotional problems and maternal mental health: associations with autism spectrum disorder and intellectual disability, The Journal of Child Psychology and Psychiatry, 52:1 (2011), pp.91-99 doi: 10/1111/j.1469-7610.2010.02295.x
  3. Turk, J. (1996) Working with Parents of Children Who have Severe Learning Disabilities, Clinical Child Psychology and Psychiatry, SAGE: London, p. 581-596
  4. Konrad, S. (2006) Posttraumatic growth in mothers of children with acquired disabilities. Journal of Loss & Trauma [serial online]. January 2006; 11(1): 101-113 Available from: Education Research Complete, Ipswich, MA. Accessed May 11 2018
  5. Pakenham, K.I. Sofronoff, K., Samios, C. (2004) Finding meaning in parenting a child with Asperger syndrome: Correlates of sense making and benefit finding. Research in Developmental Disabilities, 25, 245-264
  6. Hastings, R.P., Allen, R., McDermott, K, et al. (2002) Factors related to positive perceptions in mothers of children with intellectual disabilities, Journal of Applied Research in Intellectual Disabilities, 15 (3): 269-275
  7. Hastings, R. P. (1997) Grandparents of Children with Disabilities: a review, International Journal of Disablity, Development and Education, 44:4, 329-340
  8. Petalas, M. A. et al. (2009) ‘I Like That He Always Shows Who He Is’: The perceptions and experiences of siblings with a brother with autism specturm disorder, International Journal of Disabilty, Development and Education, 56:4, 381-399
  9. Myers, B. J., Mackintosh, V. H. and Goin-Kochel, R. P. (2009) ‘“My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives’, Research in Autism Spectrum Disorders, 3(3), pp. 670–684. doi: 10.1016/j.rasd.2009.01.004.
  10. Larson, E. (1998) ‘Reframing the meaning of disability to families: The embrace of paradox’, Social Science and Medicine, 47(7), pp. 865–875. doi: 10.1016/S0277-9536(98)00113-0.
  11. Griffin, J. (2019) ‘A report into the Emotional impact of parenting a disabled child’, March 2019, Researchgate, DOI: 10.13140/RG.2.2.15565.08169

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Angela Kelly

Psychotherapist & SEND parent at Emotions Counselling & Psychotherapy
Angela Kelly is a practising psychotherapist in Surrey. She is the parent of two sons who have autism and ADHD. Angela is Special Needs Jungle's Mental Health Editor
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