Parenting a child with special educational needs or disability (SEND) can elicit a variety of emotional responses from parents, wider family and indeed society. The charity Contact , for families with disabled children, say that there are around one million disabled children under the age of 16 in the UK, which equates to one in 20. They suggest that, ‘…72% of families with disabled children experience mental ill health such as anxiety, depression or breakdown due to isolation’.1 The focus of support is often on the child. However, parents and carers can be overloaded – physically and emotionally – and may need support or signposting to services in order to help them adapt to their new world. This provision is even more vital in the context of COVID-19.
Before I consider parents’ needs further, it is necessary to take a detour into the complex terminology around ‘disability’. There are differences in opinion over using identity-first language – I am autistic, or person-first language – I have autism. A survey by the National Autistic Society found that their members mostly preferred identity-first language.2 In other fields, person-first language is used more often, ie a person with learning disabilities. The Equality Act 20103 defines disability as a huge spectrum, which includes learning and developmental disabilities (eg autism). Many diagnoses commonly co-occur, illustrating the limitations of some categorisations. Yet services and support are often arranged around them being distinct entities.
By taking a helicopter view of the system around the child, more holistic emotional support can be provided which is family-centric, including parents, siblings and wider family, rather than just focused on the child. Practitioners who work with this client group benefit from not only understanding the complex nature of diagnoses (or where no diagnosis is made, but clear challenges are seen), but also from recognising the context in which families find themselves. There can be a sudden influx of professionals and services, sometimes disjointedly ‘treating’ different parts of the child. It can be overwhelming and disempowering.
Social model of disability
The social model of disability was developed by disabled people in response to the medical model’s focus on diagnosis and difference. The medical model ‘…looks at what is “wrong” with the person’.4
Next in this issue
In contrast, the social model of disability highlights that, while the impairment can be a challenge, it is often the environment that is disabling rather than the individual. For example, if a child who has sensory processing disorder may be overwhelmed by a busy classroom. If appropriate adaptations are made, for example they are placed in a smaller group, provided with clear visual prompts to help them focus or allowed to wear ear defenders, they are enabled to access the curriculum.
I am currently undertaking doctoral research into the emotional wellbeing of parents of children with a learning and/or developmental disability. Many of the reflections below have relevance across disabilities. By sharing an overview of the spectrum of parental emotional responses, I hope to raise awareness among professionals who work with families to support their practice. Sometimes parents are viewed as difficult, rather than taking time to understand the emotional toll of continuously fighting for services. Recent statistics released by the Disabled Children’s Partnership suggest that only 4% of parent carers feel they get the right support to safely care for their disabled child.5 This may, in part, explain why some parent carers feel angry and frustrated and direct their feelings towards professional services. Parents often do not know where to go for emotional support, which is why I created a website to signpost.6 I am now collaborating with Sibs , a charity supporting siblings of disabled children and adults, to include listing counsellors and therapists who have specific experience of supporting a sibling. Clare Kassa, CEO of Sibs, comments, ‘Being a sibling is a unique experience that extends across the lifespan – it needs specialist attention and care. Too often, siblings are overlooked by services, with many siblings feeling that their own emotional needs are less important than the needs of others’.
Adapting to a diagnosis
It can take time for parents to accept a diagnosis or fully understand what it means. Rather than adjustment being a single event, it can be experienced as an ebb and flow which may be triggered by milestones over many years of a child’s life. For example, during transition to secondary school, when it may become more apparent that your child struggles in a particular area, such as socialising with peers. Denial can allow parents to function in the early days and keep going. However, over time it can become problematic and may prevent the parent from accessing the support their child (and they) need.
A diagnosis can bring relief as well as shock. Where parents previously believed that their child’s difficulties were down to some failure on their part, a diagnosis can provide a framework of understanding and support to help the family and professionals. However, many parents report feeling left with little or no support and often turn to information online and seek out other parents of special needs children. There are some common parental experiences illustrated by academic studies, reflected in my own research. Many parent carers identify a negative impact on their wellbeing, including psychological distress, anxiety and depression as well as feeling angry, helpless and jealous of non-disabled families, and fearful of what the future holds for their child.7 Parents can feel guilt over their struggle to adhere to a daily therapy programme, their use of respite services, and the impact on the wider family. Some participants in my research referred to feeling a ‘genetic guilt’.
The grief analogy
The emotional process that accompanies diagnosis is often compared to grieving, and some parents may experience the ‘five stages of grief’ – denial, anger, bargaining, depression and acceptance.8 However, there are differences between the processes, and other models may better capture the complexity. Rather than a singular event, there may be many throughout a child’s life that disrupt the family unit and require adjustment. It may be a loss of work, spontaneity or independence that is mourned, rather than the ‘imagined’ child per se. Something that does seem pertinent for parent carers is a 6th stage, suggested by Kessler, of making meaning.9 He raises the point that, even when something shocking or unexpected happens in our life, we can go on to make sense of it in some way. This came out clearly in my research with parent carers who were experiencing a process of adjustment and adaptation, but were managing to find new ways to make meaning in their lives. For some, this was through campaigning to make services better, setting up local support groups or embarking on a new career in special needs. Sometimes it was through something totally unrelated. What mattered was that they had something meaningful, as often the child’s needs are so all encompassing, there is no space for parents. There are many parents who do not identify with grief or loss at all. This is powerfully expressed in the Wouldn’t change a thing10 campaign to challenge negative perceptions of Down Syndrome. With this in mind, professionals should be wary of making assumptions about parental responses to their child’s diagnosis and remain open to what their client brings. Some parents report having grown as a person, learning to put life into perspective and appreciating what is important. They develop greater expertise and awareness, become more solution focused and confident in their ability to support their own child, and also help others in a similar situation.
There are several aspects to emotional support which parents report finding helpful; acknowledging that the practical and emotional aspects of wellbeing are often inevitably intertwined. Support should ideally be holistic, and at times this may involve helping parents to navigate professional systems, ensuring appointments are flexible or offering different types of support, dependent on their specific needs. It can also involve helping parents to understand how education, health and social care work together (or not) and recognising (and helping protect against) stigma and discrimination in society. Being context-aware may also involve the recognition that parts of the system actually add to the parent carer’s emotional load.
Jane Steeples, an NHS counsellor who specialises in working with parent carers, told me that, ‘Waiting lists have increased dramatically in recent times (especially for autism diagnoses). I have worked increasingly with parents who have a complex child yet to be diagnosed. It is noticeable how this uncertainty increases parental anxiety, lowers confidence in their own ability to parent, damages couple relationships and the child’s behaviour becomes more and more challenging. No interventions are offered until there is diagnosis. Then, after diagnosis, due to years of austerity it has become increasingly hard to get respite and outreach support.’
Parent carers may need flexibility in how they access emotional support. Some parents told me they had been discharged from counselling services because they’d missed sessions due to their child being in hospital for major surgery. The fixed same time every week counselling slot may not work for this client group due to the numerous other appointments they need for their child. It is a personal choice whether a parent wants to access a protocol-based counselling service, such as Improving Access to Psychological Therapies (IAPT), but for many, this approach does not meet their needs. Jane Steeples comments, ‘Quite a few parents have been through this process, often not being offered a service, and some have been directly told things along the lines of, ‘We cannot help you… you have the wrong type of anxiety’. The system is symptom and medical model focused, whereas parent carers seem to need something rather more existentially focused. It really is about finding a new way of living, and rethinking one’s meaning of life now that disability or autism are a part of it. Depression and anxiety may or may not feature, but the distress this adjustment process causes is palpable.’
Working online, considering behavioural interventions for the child, recognising the impact on the wider family, or seeing different members of the family at different times were all examples of flexible working demonstrated by counsellors that parent carers reported finding helpful in my research. School counsellors, Child and Adolescent Mental Health Services (CAMHS) and private practitioners can support families by offering adaptable, personalised services which ensure meaningful outcomes that fit the needs of the whole family. This may involve being able to dip in and out of counselling at key transition points. It may also be useful to access mindfulness training or acceptance and commitment therapy principles that parents can utilise as new challenges arise. These approaches have been evidenced to benefit parent carers.
For some parents, there will be an element of trauma, either in their early history or their child’s disability journey. Dr Emma Johnston, clinical psychologist, comments on the importance of, ‘…validating and bearing witness to our client’s emotional pain. I have found this to be particularly pertinent when there has been a traumatic birth, or when the child has a life limiting illness.’ Emerson says that, ‘UK services are not designed to support traumatised parents, and health practice may serve to compound distress.’11 Services can benefit from working in a trauma-informed way, recognising that traumatised individuals have two main requisites: the need for physical, psychological and emotional safety through trustworthiness and transparency; and opportunities to build a sense of control and empowerment through choice, collaboration and equality. At times, it can be overwhelming for professionals to work with distressed families, so supervision and continued professional development (CPD) are vital.
1 Contact. Three quarters of families with disabled children feel so isolated that it has caused anxiety, depression and breakdown. [Online.] www. contact.org.uk/news-and-blogs/ three-quarters-of-families-with-disabled-children-feel-so-isolated-that-it-has-caused-anxiety-depression-and-breakdown/ (accessed 1 October 2020).
2 National Autistic Society. How to talk and write about autism. [Online.] www.autism.org.uk/what-we-do/ help-and-support/how-to-talk-about-autism/ (accessed 25 September 2020).
3 UK Government. Equality Act 2010: guidance. [Online.] www.gov.uk/ guidance/equality-act-2010guidance/ (accessed 1 October 2020).
4 Scope. Social model of disability. [Online.] www.scope.org.uk/ about-us/social-model-ofdisability/ (accessed 20 September 2020).
5 Contact. Give it back. [Online.] www.contact.org.uk/get-involved/ campaigns-research/the-disabledchildrens-partnership/ (accessed 22 September 2020).
6 Affinity Hub. Parent carer wellbeing. [Online.] www.affinityhub. uk (accessed 1 October 2020).
7 Griffin J. A report into the emotional impact of parenting a disabled child. Researchgate; 2019.
8 Kubler-Ross E. On grief and grieving: finding the meaning of grief through the five stages of loss. UK: Simon and Schuster; 2014.
9 Kessler D. Finding meaning: the sixth stage of grief. London: Rider Books; 2019.
10 #wouldntchangeatthing Twitter campaign.
11 Emerson A. Room of gloom: reconceptualising mothers of children with disabilities as experiencing trauma. Journal of Loss and Trauma 2019. 25(2): 124–140.