Counselling Parents of Disabled Children: What Helps?
For complex reasons, therapeutic support is often inaccessible or poorly attuned to the needs of parents caring for children with a disability. Joanna Griffin, author, counselling psychologist and parent carer, shares insights from her research – and her lived experience – of what counselling can be doing to help.
Parenting a disabled child can elicit complex emotional responses. But for many parents, the focus of those around them is solely on the child and their own needs become neglected. One study (Singer, 2006) suggested that mothers of children with a learning disability or autism were at a 1.5 times higher risk of depression. Despite this, therapeutic support for this group is sparse.
It’s not only at the point of their child’s diagnosis that help may be necessary. There may be different times in a parent’s journey, due to triggers such as transitions – for instance, starting school, puberty or reaching adulthood – when they might wish to turn to a counsellor.
As one parent carer with a child diagnosed with cerebral palsy told me, “I needed counselling at the very beginning, to get me past the shock. And then I think I needed it again. Because after you come to terms with what’s happened, there’s other feelings that you need to make sense of… because you’re almost grieving.”
My doctoral research focused on emotional wellbeing in parent carers of children with a learning and / or developmental disability. Through speaking with them, I identified some of the things that people had found most helpful in their experiences of counselling – which have relevance across disabilities.
The chance to talk it through
Being able to go over your story, sometimes many times, can be useful in processing difficult or unexpected news. Some parents may get this support from a family member or friend, but over time the need to share difficulties may require professional support.
An important aspect of counselling for some parents was to have some of their feelings of guilt assuaged, whether their guilt related to genetics, to feeling depressed or anxious, or to recognising the need for time off from their caring role. As one parent carer put it, “the therapist, she really opened my mind… I’ve realised I need time for myself, it’s not just him, him, him. So, yes, I just want to do little things, like, go out for dinner with friends and not feel guilty about it.”
Understanding of context
As the practical and emotional aspects of wellbeing are often deeply intertwined for parent carers, having someone who understands the context – for example, recognising the lack of joined-up working between different support systems, the time and energy spent chasing up reports or bureaucratic paperwork, and the resulting parental exhaustion – is important. Otherwise, parents felt they spent time explaining about their child’s condition, or the battle for services.
Many parents welcomed receiving advice or strategies as part of the counselling. This is not always how counsellors work and requires a certain level of expertise (for example, for counselling parents of children with autism, this might include behavioural strategies or an understanding of sensory overload). It might be necessary to refer parents onto other services to gain the appropriate advice.
Sometimes the system for referrals is inflexible and unhelpful. For example, some parents reported being discharged part way through their allotted number of sessions via Improving Access to Psychological Therapies (IAPT) because they missed a session when their child was in hospital due to illness or for major surgery. Ideally, the need for flexibility should be built into the contract, so that counselling responds to the practical reality of the client’s situation, as well as the feelings that go with it. For one parent carer whose child with complex needs was often in hospital, for instance, counselling felt much more sustainable when they re-contracted from weekly to monthly sessions.
Being trauma informed
Many parents of disabled children will have experienced trauma, such as a difficult birth or invasive medical interventions, and may show evidence of post-traumatic stress. Feeling like you are battling on a daily basis – with your child, services or society – can take its toll and lead to a cumulative trauma. The part of counselling that involves building trust, and a collaborative approach that empowers the client and offers them choice and control, can be especially helpful here.
… Do you work in this field?
I set up the website www.affinityhub.uk to signpost to emotional support for parents of disabled children, including organisations and private counsellors. If you are working in this field and would like to be listed, please contact me via the website.