Navigating Chronic stress or how to survive Survival mode
Over the last couple of weeks, we’ve looked at stress and stress responses in the moment. This blog looks at what happens when stress becomes part of the fabric of our everyday life.
In situations extreme stress the brain’s amygdala senses threat and takes over, initiating a whole-body automatic nervous system response (Van der Kolk, 2014). Our Zebra from last week, running away from a lion, will have this huge stress response whilst fleeing, with the nervous system kicking in to protect the Zebra from threat. However, Sapolsky points out that Zebras can regulate this threat efficiently. Once the lion is out of sight and the threat has dissipated, the Zebra will quickly return to grazing and a normal state (homeostasis). In humans the threat response is not always so easily resolved. For Sapolsky, whilst Zebras are only upset about acute physical crises, humans have a psychology that multiplies and sustains our stressors. And if recovery is unresolved, then the body is unable to return to its normal state. Living in a state of threat in the long-term is ‘survival mode’.
Kastrinos (2021) describes that for carers, dealing with multiple/immense daily stressors, ‘survival mode’ is an adaptive state of ‘trying to get by’. In ‘survival mode’ the body in a defensive state, secreting stress hormones so the person is constantly reacting to danger.
Survival mode for carers might look like:
- Heighted vigilance (feeling like there is a threat constantly)
- Social isolation (‘hunkering down’ and focusing on the person being cared for)
- Prioritising caring for the other person over the carer’s own needs
- Living moment-by-moment – not thinking long term so much as ‘getting through’ the day and ‘surviving’
- Focus zooms in to what is going on ‘right now’ – it’s hard to concentrate, its hard to remember stuff
- Tiny stressors, because they come on top of everything else, feel overwhelming
- Extreme tiredness
People describe this as surviving not living. Whilst this is a psychological state it is also a physical one. Long-term stress and adversity create biological impacts. Lupien et al (2018) describe this as a domino effect, where the long-term release of stress hormones dysregulates independent biological systems (cardiac, immune, metabolic, neurological), creating illness. Yet often these caring obligations are unmovable, so what can be done to relieve stress in these circumstances?
Below are some ideas (not an exhaustive list!)
Sleep
Whilst stress can impact on the quality of sleep, creating the conditions for us to have good sleep means that we can more effectively cope with stress. To help us get better sleep (see Abbo Bacia (2024)) we can:
- Make a bedtime routine relaxing to help you ‘wind down’ and get ready for sleep. Examples might include any of the following: limit blue light exposure, use relaxation or mindfulness techniques if you know them, read a book, listen to relaxing music, avoid stimulants such as caffeine and nicotine, don’t eat too close to bedtime.
- Create a consistent bedtime routine, so we are training our body to be ready for sleep. (This also means going to sleep and waking up at the same time each day)
- Create a good sleep environment: make sure your sleeping space is dark and not too hot, and preferably quiet (ear plugs can help here)
According to the NHS it’s best not to force sleep. If you can’t sleep then get up and do something relaxing until you feel sleepy.
Social support
Social support is an important buffer in reducing the impact of chronic stress for carers (George et al, 2020). Social support helps because it can provide carers with a way to share or offload some of the demands of caring: this might be practically or emotionally. If survival mode takes us into a withdrawal state, social support shows us that we do not have to do it all alone. This support might look like support groups, it could look like coaching or counselling: where people find social support and perceive it useful, such support significantly reduces carer stress and psychological distress.
Finding your Agency and finding Acceptance
When I use acceptance here I’m borrowing from Hill and Oliver (2019) who say that acceptance means ‘reducing unworkable strategies’. What I’m getting at is, where you can, to take control of the things that you can, and find your agency here. Where there are things that you cannot control, or strategies that are not working, let them go. Acceptance then is about taking positive actions towards improving things, whilst also managing any uncomfortable feelings that might come along with deciding to change something.
Hill and Oliver suggest that we can make lots of decisions where we try to control our environment in ways that ultimately do not help us (‘unworkable strategies’) – we might distract ourselves, ‘opt out’ (hunkering down), adopt unhelpful thinking strategies (e.g. worrying, self-criticism, over-analysing), or even use substances (e.g. food etc.) to help us control things that are difficult. This might work in the short term, but they don’t ultimately help us and can end up reinforcing our stress. Acceptance here would look like asking what we would want to be different, and what alternative ways can we use to get there that are in our control. We can’t control that our child has been refused and EHCP, but we can control how we approach this going forwards (e.g. research, social support).
A final thought on agency. Agency might look different for everyone, but a key thing I have witnessed in talking to carers is it’s so important that you have something for you. This might be a walk, knitting, swimming, something that is yours alone, a space and a time to replenish and reconnect with yourself.
If you think you are in survival mode and you would like support, please reach out to us at info@careforyoucoaching.co.uk. We support you to support your families.
Navigating stress
Last week’s blog explored stress as ‘overload’ (when things are too much, our capacity to cope becomes diminished). It also considered how our own perceptions shape stress: one person’s stressor may not impact on another person; and how we identify the stressor will impact on how we adapt to it.
In this blog we’ll look at a few things that can help deal with stress in the moment.
Notice your breathing
If you are taking short, quick breaths, then make a conscious effort to slow your breathing down.
One technique for this is called box-breathing:
- As you breathe in – through your nose – count from 1 to 4
- Hold your breath as you count from 1 to 4
- Breathe out – through your mouth – counting from 1 to 4
- Hold your breath as you count from 1 to 4
- Repeat
Research has shown that slow breathing can reduce psychological stress (Birdee et al, 2023) and there’s evidence it can also impact on stress in the body (Hopper et al, 2019), because it lowers our pulse rate and cortisol levels. It’s effectively a way of telling our body to ‘stand down’ from ‘stress’ alert.
On the warpath? Pause and count!
When we are stressed out, we can be on the ‘war path’. We’re focused, determined, angry – and we feel that we need to confront whomever is creating the stress so we can stop it. (This is the ‘fight’ response of stress).
If we can introduce a pause as we march into confrontation, in this pause we can ask ourselves:
- Is this confrontation worth it? Will I achieve what I set out to achieve (if I am having this argument/conversation from a place of stress)?
Something to consider here: if we are trying to control someone else, it’s probably not going to work. Or at least it’s not going to work in the way that we hope. People often recoil when they feel controlled. Forcing compliance can generate resentment.
From the perspective of parenting, Dr Naomi Fisher and Eliza Fricker (2024) argue being in control of our children has become ingrained as a model of good parenting. This can look like enforcement of roles, ensuring behavioural conformity, and sweating the small stuff like getting children to look smart, sit still, and eat properly. However, they highlight that many studies show that the impact of removing choices is that children become demotivated, and some exhibit children downright resistance. This is tough because as they point out, what ‘good parenting’ looks like is based on social pressure. So where children do not adhere to how they are expected to behave, it can feel like the whole weight of societal judgment comes crashing down on the parent. Their book When the Naughty Step Makes Things Worse (2024) works through an alternative model of parenting by eliciting the child’s consent and recognizing children’s agency. They challenge the weight of social pressure (whilst acknowledging it is hard to do so). Returning to our confrontation then, we might feel that we are ‘socially obliged’ to confront our children to set things right and avoid being judged. Stress emerges where we feel the weight of social judgment and we judge ourselves as ‘bad parents’ because of it. But will confronting and/or disciplining our children from a place of stress get us where we want to go? This is where a pause can be important to downgrade from ‘warpath’ to ‘standby’. A good way to do this is firstly to recognise ‘Uh-oh, I’m on the warpath!’ and then count. This could be from 1-10. Maybe it’s 1-100 if we are feeling especially stressed and angry. But this counting gives you that pause to enable you to take a perspective on your situation.
Think like a Zebra!
“What?” I hear you say. Bear with me. Sapolsky’s book Why Zebras Don’t get Ulcers points out that for Zebras stress responses come from immediate environmental circumstances – the sight of a lion in the distance, running for its life, hiding from said hungry lion. Zebras don’t get stressed about things that they anticipate, or social circumstances. In humans the stress response has evolved to encompass social and psychological elements. Sapolsky’s point is that if we look at what is stressing us out, and then ‘think like a Zebra’, we’ll recognise the role of social and psychological perception in creating our stressors. It doesn’t make these stressors go away, but it creates another pause. Another key point he makes is that animals (including humans) experience stress as a short-term crisis, if we experience this long-term stress can make us sick (hence the titular ulcers – more on this soon). Thus, there’s something important here in ‘thinking like a Zebra’ and recognising the ‘in the moment’ quality of our experience: trying not to get sucked into the past (ruminating), or the future (anticipating) and piling on more stress. To be ‘in the present’ is to recognize that this is happening ‘now’ but not necessarily ‘forever’: tempers may be heightened now, or things may feel stressful now, but it will pass, it is not ‘everything’.
If you are stressed and you would like emotional support, please reach out to us at info@careforyoucoaching.co.uk. We support you to support your families.
Carer stress and how coaching can help
What is stress?
One way to understand stress is as ‘overload’. When things are too much, our capacity to cope becomes diminished. It’s also important to recognise that what might be a stressor for one person may not register as stressful for another. How we evaluate stress makes a difference to what we experience as stressful. For example, you might find a noisy crowded environment incredibly stressful and come home with a headache, another person might find it quite exciting.
If stress is about perception, it’s also about how we react to that perception. In a stressful situation the body releases adrenaline as an immediate stress reaction, and cortisol is released after a prolonged period of stress (Grief and Palmer, 2022). Prolonged stress has a profound impact on our psychological and physical wellbeing.
Mackey and Perrewé (2014) developed the AAA model to describe what happens during stress reactions (Appraisal, Attribution, Adaptation):
In this model the primary appraisal stage determines how individuals will react to stress, and the emotions that come with this appraisal impact on how well-placed a person feels to cope or emotionally self-regulate.
What Is carer stress?
Many stress models are based on work conditions and job demands. However, carers experience stress differently. For instance, Grief and Palmer talk about work stress being managed by detaching oneself from that stress (a bit like walking out of the office at the end of the day) – this is not possible for carers. Hastings’ study (2003) found that stress affected parents differently: mothers were more likely than fathers to be impacted by stress due to their child’s behaviour.
Mothers of autistic children are more likely to experience stress if a child is emotionally distressed or struggles with emotional regulation (Brown, 2021; Higgins, Mannion, Chen, Leader, 2023) (this is often framed as children’s behavioural problems within studies). Parental stress also impacts on the child too (Brown, 2021). This means that stress can become embedded in the family a feedback loop.
How can coaching help with stress?
As a helping space designed to focus on you, coaching can support you to manage stress in a number of ways:
Education and Health Care Plans: some stats and links
Families I have spoken with recently have described challenges with EHCPs. If you are in the midst of pursuing an Education and Health Care assessment, waiting for an EHCP (49% of cases took over 20 weeks in 2023), or appealing an EHCP decision, you are not alone. Between 2017 and 2023:
for 6% assessed for EHCPs, there was a decision not to issue
The number of appeals have gone up year on year, with 28% of appeals against refusal of Local Authorities to conduct an Education and Health Care assessment
The Children’s Commissioner report (Jan 2024) notes that while only 32% of pupils with EHCPs were autistic, 45% of appeals related to autistic children, suggesting that these families are finding it particularly challenging to access support.
If you or your family are waiting for or thinking of appealing a decision:
- Government advice is available here: https://www.gov.uk/appeal-ehc-plan-decision
- IPSEA (https://www.ipsea.org.uk/appeals-against-a-refusal-to-issue-an-ehc-plan) offers advice for appeals (with template letters).
- Local SENDIASS websites also have useful information
- Special Educational Needs and Disability Tribunal You Tube videos on the appeals process: https://councilfordisabledchildren.org.uk/resources/all-resources/filter/inclusion-send/guidelines-parent-carers-looking-support-tribunals-or
- Autism Central feature EHCP workshops: https://www.autismcentral.org.uk/events
- If you are thinking of getting help with the appeal, the Council for Disabled Children Guidelines has guidelines for seeking support with tribunals: https://councilfordisabledchildren.org.uk/resources/all-resources/filter/inclusion-send/guidelines-parent-carers-looking-support-tribunals-or or see https://www.specialneedsjungle.com/getting-help-with-ehcps-be-careful-out-there/
If you would like emotional support, please reach out to us at info@careforyoucoaching.co.uk. We support you to support your families.
For more sources of statistics see:
Parental blame and how to start unblaming
According to Martyn Oliver, Head of Ofsted, ‘Work from Home parents ‘make children think school is optional’’ (The Times, 16/2/24 https://www.thetimes.com/uk/education/article/ofsted-head-wfh-parents-make-children-think-school-is-optional-qtrmqpw9z?msockid=34df726570726a120a9366d6716f6baa). Whilst this story mentions Oliver’s acknowledgement of the wider factors that underpin emotion-based school refusal, other news outlets leapt on the headline. In shifting blame onto parents, these stories conveniently ignore the reality of:
- increasing school exclusions: exclusions are up by sixty per cent in England since 2011 (Ambitious about Autism, 2018); nearly 90% of those excluded from schools over the past 5 years had special educational needs (https://www.bbc.co.uk/sounds/play/m0025bcf)
- chronic under-funding of SEND services, with English councils’ high-needs budgets in deficit by £3.3bn (Shttps://www.theguardian.com/uk-news/2024/dec/22/spiralling-demand-and-shrinking-budgets-why-englands-send-system-is-buckling).
- £100m spent on blocking parents efforts to get SEND support (https://www.theguardian.com/uk-news/2024/dec/22/spiralling-demand-and-shrinking-budgets-why-englands-send-system-is-buckling)
Many parents are forced to leave the workforce precisely to support their neurodiverse children. A survey of 900 parents by Ambitious about Autism (2019) showed that 30% of those surveyed gave up work due to school exclusions and 20% of respondents had reduced their working hours to part time. Thus;
- Flexible working is essential for parents to be able to support their children, attend appointments, school meetings, not a luxury that enables various parent and/or child skiving as Oliver suggests
- These same parents who work from home are exhausted from having to constantly fight for EHCPs (which are denied – see above), and support.
Of course, to blame parents enables deflection of scrutiny of OFSTED and underfunding of schools. Sadly, parent blame is as old as the first identification of autism, with Leo Kanner on the one hand distinguishing autism as a distinct affective condition and on the other hand blaming children’s affective differences on ‘refrigerator mothers’ who were unable to give adequate attention and affection to their offspring to support their development. Furthermore, it’s mothers who bear the brunt of the blame and social censure for their children. Mothers are also more likely to be blamed for school exclusion (Mallace, 2024). Ward (2014) speculates that the combination of mothers being out in public with their children more frequently than fathers, and because of society’s expectations around the mothering role, they encounter more overt criticism and stigma. Children are also blamed (see Potts, 2020), because they do not conform to ableist assumptions about how they should be at school, which again refracts back on parents.
So blame is out there and socially-legitimised as a way of not confronting other inconvenient truths. What can we (as the recipients of blame) do about this? It’s easy to feel angry, helpless, and defeated when people fail/refuse to see how hard and how much parents work to support and fight for the rights of their neurodiverse children/children with additional needs.
We can challenge the blame. I speak with many parents who contradict judgments and advice offered by (possibly well-meaning but ultimately stigmatising) people: they do this with varying degrees of success. Challenging on an individual basis can come with some risks, but broader support groups and forums can provide solace and support. National Campaigns such as the National Autistic Society’s #A constant fight challenge the narrative that pushing everything back onto parents is okay. Work by Dr Naomi Fisher; Eliza Fricker; Heidi Mavir, and Danielle Jata-Hall among many give support and advice for parenting differently to support children’s individual needs (rather than molding them to fit with social norms).
Alongside these campaigns, the challenge can also come from within us (and this is where coaching can help!). A study by Moses (2010) found that some parents were able to facilitate a process of “unblaming”. Through ‘unblaming’ perceptions of self-blame were reworked over time, and parents redefined how they saw themselves, and were able to be positive about their parenting. This process was underpinned by wider support (often family support). A key tool for this process it to have a perspective about ‘contribution’ to an issue. Stone and Heen say that one way to move from blame to a more neutral stance on a conflict is to look at what each factor ‘contributes’ to it. This is a shift from judging to understanding. Thus, rather than parents blaming themselves for a child’s non-attendance at school they can consider:
- What did I contribute to this situation? (“I put the needs of my child first.”)
- Who/What else has contributed to the situation – e.g. the school?, government underfunding?, the local authority?, etc.
- When I look at the different contributors and what they have contributed, what do I think now?
And ultimately:
- Does blaming myself help me in this situation?
- What can I tell myself instead?
This subtle shift in language gives a different perspective: it doesn’t bypass the larger stigmatising social narratives, but it doesn’t accept them either. Coaching can be a helpful space to support you to build this repertoire of self-affirmation and move away from self-blame.
If you want somewhere to talk about a child’s school exclusion, to disentangle this from self-blame, and to start doing some ‘unblaming’, I’m here to hold this for you. Care for You Coaching offers a safe non-judgmental space where you will be listened to. We will support you to support your loved ones. If any of this resonates with you, reach out to me on info@careforyoucoaching.co.uk
Fierce self-compassion: how coaching can help us sustain our support for our loved ones
The National Autistic Society recently reported that autistic people and their carers face #a constant fight: for assessment for diagnosis (with an estimated 400,000 waiting over a year for their first contact with a health service, (Children’s Commissioner Report, 2024: 36)), for school support, for EHCPs. Parents and carers I speak to tell me how exhausted they are. Exhausted from having to take time off work to take children to appointments; having meetings with schools; chasing people for support; form-filling; from constant advocacy for their young people, and weathering judgments from people who cannot understand or empathise with their situations. The fight is compounded by a system that deflects the problem back to the parent/child/family rather than looking at the system itself (see Running and Jata-Hall’s report, 2023 – 87.8% of parent / carers respondents said they felt blamed for some aspect of their autistic child’s presentation). As Heidi Mavir so eloquently describes in Your Child is not Broken (2023), this constant ‘fight work’ can be really triggering for neurodiverse parents who find that their neurodiversity is positioned as a problem.
For wearied parents and carers every day is continually filled with fighting battles on a number of fronts. So how can the fight be sustained?
Whilst it’s not a complete answer, I really like Kristen Neff’s concept of fierce self-compassion as a foundation to build principles to support the #constant fight. Neff, herself the mum of an autistic son, developed this concept after reflecting on an exchange with a judgmental parent. Neff’s response to the parent ‘shushing’ her autistic son was a mixture of fierce defence of her child and subsequent self-compassion. She reflected afterwards that both components are totally necessary and valid: to legitimately exhibit a fierce protective anger to mitigate suffering/social judgment on behalf of those who are misunderstood (‘the fight’) and self-compassion, so we are a good friend to ourselves when we are in the midst of a struggle (Fierce Self-Compassion, 2021). That’s the first reason that this concept is useful – it gives permission to legitimately be angry at injustice and actively and outwardly express that anger (there’s more to say here about the how – but that’s another blog post!), and alongside the permission to not beat ourselves up or carry the weight of social judgment, but recognise that we need to be a best friend to ourselves (and not just in times of adversity).
For Neff there are three key components of self-compassion:
Kindness: within self-compassion is a drive to alleviate suffering. Sometimes this can be easier to do for others than for ourselves. We pour so much into supporting others we often have no more kindness to extend to ourselves when things haven’t gone as we had hoped. Kindness gives us the capacity to extend understanding and acceptance to ourselves; to say ‘this has been rough’ and ask ‘how can I best support myself?’.
Common humanity: this is where we are aware that others may be suffering too. We can often become isolated and feel like the anger and the fight is ours alone. It’s also a reminder that we are as Neff says ‘worthy of humane treatment’ (2021: 23). Here self-compassion is being aware that we ourselves, and others, are worthy of compassion.
Mindfulness: what Neff means here is really the capacity to sit with discomfort – to acknowledge that what we are doing is difficult or hard, and be aware that we may need support during difficult times. This mindfulness is ‘being aware of’
Self-compassion can be a challenge when you are exhausted from advocating and supporting others. It might not feel that you have enough energy left to support yourself.
This is where coaching can help. As you’ll see on our Care for You website, coaching is a talking space, where you bring whatever you need and you have an empathetic supportive listener to share your story with. Coaching is more than listening: coachees have said it can provide ‘containment’, a safe place to put stories and troubles so they don’t leak out into other areas of life; and it can help (if you want it to), with thinking through what will come next for you. In essence, coaching is great space for scaffolding parents and carers to build self-compassion:
Kindness: Coaching is a space that is dedicated to you. It can be a first step in helping you to recognise and articulate your needs, followed by supporting you to plan to meet your needs. If you find being your own best friend difficult, you can be confident that your coach
will hold you in high regard to help you to begin to do this work.
Mindfulness: we can’t take away the frustrations and depletions of these battles, but if you need it, coaching can give you a place to unpack how you are feeling and think through how you might face these battles, what steps you’ll take first, and what steps will follow those.
So coaching might be one way that you can be supported to keep going, or it can help you to build strategies, coping mechanisms, and support to help you get to where you need to go. If you want to talk, please get in touch with us info@careforyoucoaching.co.uk. We’re here for you as parents and carers, to support you to support your loved ones, and to support yourselves.