Jo Griffin looks at ways to help manage the stress of parenting a child with SEN and disabilities
Becoming a parent can be a demanding as well as a rewarding experience. For parents of a disabled child, the additional uncertainty and challenges they face can make them more vulnerable to increased stress and reduced emotional wellbeing.
A child comes with many associated dreams and aspirations in the minds of parents. The reality of having a disabled child may mean that some of those hopes and expectations are not realised, and a period of adaption and even mourning may be necessary. The emotional journey to a place of acceptance is possible and many parents report positives in relation to bringing up a disabled child, but it is not always an easy road and help may be necessary along the way. Additional pressures, such as fighting for support and limited resources, can exacerbate the feeling of being overwhelmed by a “pile-up of demands”1.
Through my own experience of having a son with complex needs, and my professional roles with a number of disability charities, I have spoken to many other parents who report the same challenges, stressors and sense of being alone. Often, what parent-carers need isn’t necessarily an answer (and there may be no easy answer) but an acknowledgement that the situation is difficult, and compassion and understanding from the professionals with whom they come into contact.
Over the last two years, I have been surveying parents online about the emotional impact of having a disabled child. I circulated the information via social media, Hemihelp conferences and parent contacts, as well as writing articles in journals. I have received 98 responses so far.
Some findings from the survey’s respondents to date are:
- 98 per cent said they had experienced anxiety, stress or worry in relation to their child’s disability or special needs
- 70 per cent said they felt anger regarding their child’s disability
- 73 per cent said they felt down or depressed with regards to their child’s special needs
- 66 per cent reported feeling guilty about their child’s disability.
Some parents reported positive themes, such as those listed below, that correspond with the idea of post traumatic growth, although “it is important to bear in mind that the experience of growth is not the same as the absence of personal distress”2:
- 70 per cent reported feeling a fighting spirit on behalf of their disabled child
- 75 per cent reported feeling pride when they thought of their child with special needs
- 57 per cent reported an inner strength or resilience with regards to their child’s disability.
To get to a place of acceptance and growth, however, is more challenging when you are caught up in practical and financial difficulties. It is already well documented that having a disabled child can have a detrimental effect on a parent’s ability and flexibility to work, find appropriate childcare and access leisure activities. There can also be heightened stressors with partners, wider family and social networks.
There are some key factors which can have a supportive influence on parents and nurture resilience. Finding other families in a similar situation can provide a shared understanding of their lived experience, which often feels slightly outside the mainstream world. This might be something that local charities provide, or sometimes schools may be able to organise coffee mornings. Unfortunately, depression and anxiety can make us more likely to withdraw at a time when we most need our social networks. There are many national charities, with expertise in different diagnoses, which can usually be found by searching online, as well as local charities listed in the local authority’s Local Offer. In my experience, there is still much confusion about the Local Offer and what it entails, so parents may benefit from someone sitting down with them and showing them where to look online and what might be appropriate to their needs.
My survey highlighted how useful many parents find online support, either through social media groups, blogs or forums. As with much of the online world, though, there can be pros and cons. The facility to find information needs to be balanced with the ability to discern what advice is relevant to your child. As parents become more confident and gain greater expertise in their own child’s needs, they can decide what information is applicable to their family. In the early days though, it can be a minefield.
Re-connecting with the things they enjoyed before parenthood is a useful tip for all parents. Making time for ourselves and acknowledging that this is important and valid can sometimes feel difficult without permission from someone else. Some parents reported a renewed connection to their faith or the support they receive via their church, although for some there can be a negative impact on their religious beliefs.
Many parents commented on what a difference it made to their lives when they were treated with compassion and thoughtfulness by the professionals with whom they had been in contact, be they school staff, medical staff or therapists. These caring qualities don’t cost money and they can be easily employed by everyone working in the special needs field. Good relationships increase the likelihood that joint strategies are consistently applied across settings and the home, making it clearer to the child what is expected of them.
Looking after yourself
Good mental health is supported by the basics, such as eating well, getting enough sleep and taking exercise, as well as access to regular breaks, including planned short breaks3. Other studies highlight the benefits of various relaxation techniques. Approaches such as acceptance and commitment therapy – which involves helping individuals accept “undesirable feelings and intense emotions” and building “awareness of their continuous stream of thoughts without judgmental reaction” – and expressive writing can be helpful4.
It can take time to implement self-care activities though, and that is one thing that is often in short supply for parent-carers. There are also different stages along the way of caring for yourself, dependent on age, behaviour, transitions and other factors. Choosing the right type of support may depend on where the family is in their journey and support should always be tailored to the family’s individual needs. For example, a parent who is sleep-deprived and fighting a local authority may need respite and advice on good sleep hygiene before they can fully access any self-help activities. If parents are really struggling, they can speak to their GP and may benefit from a carer’s assessment from social services. Schools can either make referrals or assist with referrals to a whole range of services, such as child and adolescent mental health services (CAHMS), occupational therapy, speech and language therapy, and physiotherapy, as well as specialist advisory teachers. Some schools may also have provision such as learning mentors who can offer support within school to parent-carers as well as children.
Being aware of the additional pressures parent-carers are under can help others to understand where they are coming from. Many parents will be under increased stress when they come to school and seeing things from their perspective can be invaluable. Even a simple acknowledgment that “this must be difficult for you” can go a long way towards heading off potential issues before they become problems.
Jo Griffin is a Chartered Counselling Psychologist and the Founder of Affinity Hub which provides emotional support to parents of children with special needs. She is currently researching the emotional impact of parenting a disabled child at Metanoia Institute:
- 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.
- Calhoun, L. and Tedeschi, R. (2010) Facilitating Posttraumatic Growth: A Clinician’s Guide, Routledge, Oxfordshire.
- www.cerebra.org.uk/help-and-information/guides-for-parents/factsheet-emotional-well/ (accessed 8/6/18).
- Da Paz, N. S. and Wallander, J. L. (2017) Interventions that target improvements in mental health for parents of children with autism spectrum disorders: A narrative review, Clinical Psychology Review, 51, 1-14.