Unique experience of being a Parent Carer
chronic sorrow/vulnerability – ‘a living loss’
A parent carer is anyone who has parental responsibility for a child with any
additional need or disability and includes adoptive parents, foster parents,
grandparents and in some instances siblings and legal guardians. Where you read
parent or parent carer please think in this wider context of parental responsibility.
As a result of the introduction of the Children’s & Families Act Code of Practice 2014
professionals should be working more to offer quality support with a holistic view of
families with children/young people aged 0 – 25 years so that includes you as a
parent. However, parenthood is for life so please be mindful that parenting emotions
last a lifetime!
Having a child with any additional need or disability is more than likely come as a
shock to most parents; as one would expect from any ‘upset’ or unexpected life
event. The potential emergence of chronic sorrow or chronic vulnerability however
makes the parent carer ‘experience’ unique.
Carrie Britton (2001) carried out research as part of her PhD thesis looking at stress,
resilience and emotions of parenting a child with a disability. She described the
parent carer journey/experience as being in several definitive ‘stages’ (see below).
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Early Stage: anxiety and effort to secure diagnosis; shock and feelings of
helplessness; denial; guilt; crisis as life will now be different; eagerness to put
child in hands of expert; isolation
•
Middle Stage: coping with conflicting advice; realising things cannot always
be fixed; noticing unsustainable physical and emotional effort; emergence of
chronic sorrow/vulnerability; navigating service systems; exposure to disability
discrimination and lack of opportunities both for them, their child/young person
and family
•
Later Stage: reframing ‘normality’; drawing on a range of expertise;
developing confidence; connecting with other families; advocating for services
Key points to be aware of:
1. There is little to no link between a parents’ emotions and the diagnosis or
complexity of need for their child. For example parents whose children need
to wear glasses can also experience these stages of emotions. However,
West Sussex Parent Carer Forum/ G Saunders Oct 2016
having to wear glasses, is not uncommon, is usually easy to support and can
often be resolved faster thus parents move through the stages and ‘normalise’
their parenting more swiftly.
2. The Early Stage is in relation to the parent being told of the diagnosis and not
the age of the child/young person. Having a diagnosis when your child is
older can result in parents experiencing the same emotions as receiving a
diagnosis when their child is new-born.
3. The parent carer journey is linear but is influenced by many factors; parents
can get ‘stuck’ for different lengths of time at each emotional stage.
4. Trigger points can catapult a parent back to an earlier stage in their emotional
journey. A trigger point can be related to something that is happening in the
life of their child/young person such as going through any transition.
However, trigger points, may be completely unrelated to the child.
Regardless they are characterised by stirring up emotions of uncertainty,
anxiety and stress.
5. Chronic sorrow can be described as a ‘living loss’; a grieving that is different
to the normal process of mourning a loss of as there has been no death.
Susan Roos has written a beautiful and very insightful book describing her
own experience of parenting two disabled children, one of whom died in
infancy. Barry Carpenter describes this emotional stage as ‘chronic
vulnerability’ simply because as a parent of a disabled child you are always
emotionally vulnerable and many parents relate to this sentiment more than a
‘sorrow’ so the language around this unique experience is important. It is
important to remember that chronic sorrow/vulnerability can affect all family
members and not just parents (grandparents, aunts, uncles, siblings). Barry
Carpenters book details his personal experiences and coping strategies as
well as holistic professional support
Helpful strategies:
No two parents are the same but the complexity of navigating the service system
and not having a clear path to support for themselves or their child) are going to be
factors which can trigger chronic vulnerability. Recognising this and doing
something to support this will help. So the bottom line is look after yourself when
you are feeling vulnerable, and look after your fellow parent’s reps as stepping up
into this professional arena and potentially being in on a professional platform
directly related to your own personal experience, could make you especially
vulnerable.
Giving parents time and space to talk whilst providing active listening to support
them in validating their feelings and processing them for themselves is really
important. To form a strong effective team in a Forum, it’s important to understand
at some the circumstances around parent reps role as a parent carer. Remember
West Sussex Parent Carer Forum/ G Saunders Oct 2016
this is not about providing therapy but it is therapeutic and will help you form a strong
supportive team.
Signposting parents to appropriate local support and further reading.
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West Sussex Parent Carer Forum
Carer Support West Sussex
Relate (counselling for parents of disabled children)
Specific Support Group/source of information and learning.
Local Offer
Key active support- ‘finding your tribe’ or finding like-minded people who
share your life experiences can help.
There are loads of positive and supportive web forums and blogs that parents
can join around a particular condition or family circumstance. For example,
DownsSideUp; Firefly Community, Brain Pickings, etc.
References:
Carrie Britton (2002) Views from the Inside, Part 1: Routes to Diagnosis—
Families' Experience of Living with a Child with Arthritis
The British Journal of
Occupational Therapy, 2002
Susan Roos (2002). Chronic Sorrow; a living loss. #
Carpenter B (1997) Families in context - emerging trends in family
support and early intervention David Fulton
West Sussex Parent Carer Forum/ G Saunders Oct 2016