Thank you: 5 people I’m grateful for

Sometimes it’s very easy for us parent carers to get caught up in the negatives of dealing with the various systems around us.

The fight for limited resources, constantly chasing up reports, equipment or appointments and even having our child’s needs denied can be disheartening and exhausting.

It can feel like we are demanding the moon on a stick merely by asking for what our child is legally entitled to. 

It can be like a big dark cloud over us.

But the cloud sometimes masks the positive moments when someone does connect with us, provides us with exactly what we require or ‘gets’ our child and their needs. 

So I’d like to take a moment to thank the people in our lives for whom I’m thankful:

  1. Thank you to the paediatrician who, in a recent appointment, asked me what I’d like to be called (‘I can’t just call you mum the whole time’), took time to speak to my son in a calm and non-rushed way, and responded promptly to all agreed actions.

  2. Thank you to the speech and language therapist who enjoys working with my son. Hearing the two of them laughing away during their sessions warms my heart. Her advice and expertise, particularly in the early years, helped me better understand the processing difficulties he experienced and the need to allow him time to respond.

  3. Thank you to the occupational therapist who taught me about proprioception (body awareness or sense of our body) and how important this is for children with cerebral palsy and other sensory needs.  This helped me understand how discombobulating it can be for my son when things suddenly appear in his personal space. I also appreciate her inventiveness when we need to troubleshoot a particular challenge that arises in family life. 

  4. Thank you to the teacher who took the time to check in on my son and us as a family while we were recently self-isolating at home with covid.

  5. Thank you to our carer who knows how to support each of my children recognising their individual needs.  Those people who realise that it can be invasive to have someone in your home and adjust their behaviour accordingly make life so much easier.

These things are often small and don’t cost extra money. 

The things I’m grateful for involve people being sensitive and empathic, able to relate as a human being and doing their job properly. Small, yes, but the rewards are significant to us and our family.

There is a free download for education, health and social care professionals on supporting parent carer wellbeing here.

We might not always notice these things in our everyday life but by stopping and reflecting once in a while we see there are many things to be grateful for. And this can have a positive effect on our emotional wellbeing.

What are you thankful for?

You can find more parent carer wellbeing tips at www.affinityhub.uk.

Five Quick and Easy Stress Busters

Having a toolkit of ‘go-to’ stressbusting strategies can be useful for our wellbeing.  Not only at times when things are overwhelming but also as part of our everyday lives.

There is considerable evidence for part of our nervous system called the vagus nerve – which connects the gut to the brain – playing a vital role in our wellbeing. 

The vagus nerve is an important part of the parasympathetic nervous system which is often referred to as the ‘rest and digest’ system.

This system carries signals to and from the brain and regulates the body when it is in a calm and relaxed state, such as when we connect to people with whom we feel safe. This has a stress-relieving effect on body and mind.

Here are five simple strategies that tone your vagus nerve:

  1. Movement – such as sitting on a gym ball or in a rocking chair
  2. Physical warmth – holding a hot drink, wrapping up in a warm blanket
  3. Singing, chanting or humming
  4. Physical touch – such as massaging the sides of your neck, a cuddle with your child or partner or even stroking your pet. A recent study suggested just ten minutes of interaction with cats and dogs showed a significant reduction in stress hormones.
  5. The most easily accessible relaxation exercise is to focus on our breath. Breathing techniques, particularly those which focus on extended exhalation, are key.

Here is a simple breathing exercise if you need help to calm your nervous system:

  • Sit or lie down in a comfortable position
  • Close your eyes
  • Exhale until you reach the bottom of your breath 
  • Inhale through your nose for the count of 4
  • Hold your breath for 7 counts
  • Exhale slowly and gently for the count of 8
  • Repeat for 4 open and full breaths

Obviously, none of these strategies make our problems disappear. But prioritising our own needs and wellbeing may help us to face difficulties with a little more energy and self-compassion.

I share many strategies for looking after your wellbeing at www.affinityhub.uk and in my book, Day by Day: Emotional Wellbeing in Parents of Disabled Children, which is available here. The book includes tips from other parent carers as well as research more widely.

Self-compassion: A vital ingredient for parent carer wellbeing

We may be familiar with the idea of being compassionate towards others but often we find this harder to apply to ourselves.  Yet self-compassion is key to helping parent carers who may feel overwhelmed by their caring role and the systems around them.

Dr Kristin Neff is a researcher in the field of self-compassion, who is also a mother of an autistic son.  She writes:

‘In a study on self-compassion in parents of autistic children the researchers found that those parents with more self-compassion perceived less stress when dealing with their children.  They were less likely to be depressed, and more likely to be hopeful and satisfied with their lives. 

In fact self-compassion was actually a stronger predictor of how they were doing than the severity of their children’s autism.  This suggests that what’s more important than the intensity of the challenges you face in life is how you relate to yourself in the midst of it.’

– Fierce Self-Compassion: How Women Can Harness Kindness to Speak Up, Claim Their Power, and Thrive

I think all parent carers (and parents in general) can learn from these findings. 

We may beat ourselves up for a perceived ‘failure’ or when we don’t have all the answers in relation to our child.  But self-compassion is where we treat ourselves with self-kindness instead of self-criticism.  It’s the opposite of shame.

Self-compassion means we accept that human beings are fallible and there is no such thing as a ‘perfect parent’.  It’s ok to be ‘good enough’.

If you struggle to be kind to yourself, try these statements to develop your self-compassion:

  • We’re only human and everyone makes mistakes
  • This is really hard. What do you need in this moment?
  • Of course this is difficult. Anyone would find this hard.
  • May I let go of that which no longer serves me

If something doesn’t go to plan, don’t generalise it to all other areas in your life. If you make a mistake replace any thoughts of ‘there you did it again, you always mess things up’ with ‘that didn’t go how I wanted but I’m now clear how to avoid that outcome in the future.’

Replacing self-criticism with self-compassion is a key ingredient in supporting your own emotional wellbeing.

You can find more parent carer wellbeing tips at www.affinityhub.uk.

Let go of Guilt!

In my research into parent carer emotional wellbeing, guilt frequently reared its ugly head. Parents reported feeling guilty that they hadn’t done enough therapy, guilt about siblings, guilt for taking time for themselves and even guilty about how they’re feeling in the first place. I talk about the many complex emotions parent carers can experience in my book Day by Day: Emotional Wellbeing in Parents of Disabled Children (Link in bio).

In an online survey I undertook on my website, www.affinityhub.uk, 66% of respondents reported feeling guilty about their child’s disability. Although this may seem irrational to an outside observer, there is a primal desire to protect our children at all costs.  On receiving unexpected news it can feel like we have failed to do this. Logically, that is out of our hands and not our responsibility.  

Most parents do everything they can to help their child and yet we can still take on the mantel of guilt.

We can often feel responsible for our child and the challenges they face. I believe this is partly in response to a helplessness that parents may experience when something happens that is out of their control.  By feeling guilty it takes back some control for the parent, however inappropriately.

‘People often use the strategy of blaming themselves to protect their cherished beliefs about the controllability, predictability and justice of the world.  By blaming themselves they are able to hang on to their beliefs.’ “After all, if I am to blame, I could have prevented the…event from happening. If I could have prevented it from happening, then my sense of control would be maintained” (Joseph, 2011).

It is hard to acknowledge that sometimes, despite all our best efforts, we cannot protect our children from difficulties. 

At times, when we don’t know how best to support our child, it can layer on the guilt again. But we can’t be expected to be trained doctors, health visitors, midwifes, social workers and psychologists all rolled into one.

Some of the behaviours or difficulties children face are also part of typical development. However, because for parents of disabled children they already have a heightened sensitivity to their child’s needs, they take on responsibility for any negativity. 

Barrett (2010) states: ‘Parents often assume responsibility for every additional problem their child suffers. If he is miserable it is because as parents they failed to make him happy and if their child is ill, it is because they failed to take adequate care of him. If any or all of these things were to happen to a [non-disabled] child you would, in all probability, simply accept them as things to be expected when you have children.’

Why should it be any different in the case of a disabled child?

Guilt may be exacerbated by society’s expectations and idealisations of the parent role; along with the judgement parents experience. This includes comments from others about their child’s behaviour or their parenting skills. Prejudice and stigma are still rife and negatively impact all aspects of life. 

If there was greater tolerance of difference and disability in society at large; there would be less of a pressure on us as parents to be ‘perfect’.  As the psychologist, Donald Winnicott, wrote in his seminal work, it would be ok for us to be ‘good enough’.

Guilt isn’t warranted, and it doesn’t help parent carer wellbeing. We’re all doing our best in an imperfect system and world; there is no need to add guilt to our mental load.  We deserve to treat ourselves with a little more self-compassion and understanding.

Let go of guilt!

References:

Barrett, M. (2010) You and Your Disabled Child: A practical guide for parents, West Sussex: Woodfield Publishing Ltd

Joseph, S. (2013) What doesn’t kill us: a guide to overcoming adversity and moving forward. London: Piatkus

Special needs parenting: No spare capacity

Often, as parent carers, our lives are full.

Being a therapist, social worker and advocate for our child as well as continual worries about the future can take up an inordinate amount of time and headspace.

Never mind already being a parent, looking after siblings, working and trying to keep on top of the household chores.

There isn’t much spare bandwidth for dealing with other things that pop up along the way. 

Furthermore, during the pandemic parent carers have found their (already limited) support disappear. 

Additional requests from schools, Parent Teacher Associations and social networks can sometimes feel overwhelming.

The expectation to provide a costume for a school play or world book day, attend meetings or remember to reply to messages and WhatsApp texts can be the straw that breaks the camel’s back.

Although I started writing my book Day by Day: Emotional Wellbeing in Parents of Disabled Children before the pandemic, its resonance and key messages remain the same.

In fact, the need to look after yourself is even more important than ever.

Part of this may entail saying ‘no’.

No to attempts to shoehorn our child into a world that wasn’t designed for them.

No to those who don’t understand our life and make unrealistic demands.

No to unimportant things that take up our time.

No to inner voices that tell us taking time for ourselves is selfish.

As someone commented on my Instagram feed recently:

‘No’ is a complete sentence.

It can be powerful and, at times, necessary. By using the word it may help us create the spare capacity we need, but rarely allow ourselves. 

I share many other tips from parent carers on looking after your emotional wellbeing in my book which was out on 7th May (link in my bio). 

Emotional wellbeing in parent carers: Natural health service

Joanna Griffin, a parent carer and Counselling Psychologist, writes about her new book on parent carer emotional wellbeing.

Given the additional pressures parents of disabled children experience it is not surprising that there can be a greater risk to our mental health.

This includes increased levels of depression and anxiety.

The Covid-19 pandemic has made it even more apparent that parent carers’ wellbeing is vitally important. 

We need to take active steps to maintain our emotional wellbeing on a daily basis.

When we think about ‘looking after ourselves’ it can conjure up an image of going for a massage or having a soak in the bath.

While these can be helpful it can also involve planning for longer term benefits, such as taking a course to learn a new skill, eating healthily or going to the doctor about a recurrent back pain.  

It can be investing time in applying for Short Breaks or other support services.

Our wellbeing needs to be regularly topped up. 

We may need different things at different times.  And we may have to remind ourselves to make time to do these activities. 

I describe many of the strategies parent carers find helpful in my new book: Day by Day: Emotional wellbeing in parents of disabled children.

Get out in nature

One recommendation is to regularly get out into nature. 

It is commonly shown that being in a green space (i.e. park or woods) is beneficial for wellbeing. We can call it a ‘Natural Health Service’.

Recent research suggests that even a small space, such as a tiny front garden or potted plants can have the same effect.  

The study found that over a period of one year there was a 6% drop in peoples’ stress levels.

Which they state is the equivalent to the long-term impact of eight weekly mindfulness sessions. Further details can be viewed here: https://theconversation.com/green-front-gardens-reduce-physiological-and-psychological-stress-149793

The mental health charity, Mind, recommend collecting natural materials, such as leaves, flowers, feathers, tree bark or seeds and using them to decorate your living space or in art projects.

Being out as a family also has benefits for our children so whether you choose to seek out nature on your own or with your children it can be a great stress-buster.

We can also feel part of something bigger than ourselves. Seeing the seasons change reflects the cycle of life and can help us re-set. 

How can you connect with nature today?

The Ongoing Battle (The Myth of Sisyphus)

It’s often believed that the early years of a child’s life are the most difficult.  Sleepless nights, toileting challenges or lack of communication can all add to the pressures.

Yet many of the special needs parents I speak to reflect that not only do many of these issues continue in their lives, but new challenges emerge as their child grows and develops.

Transitions such as puberty, secondary school, moving to adult services all bring periods of adjustment.  Society is less forgiving of an adult who displays behaviours that challenge in the supermarket than a child. The looks are more noticeable.

Even hard-won services feel precarious and we may have to continuously fight just to keep the status quo, such as at Annual Reviews for Education Health and Care Plans.  The fight goes on in perpetuity.

I am reminded of the Myth of Sisyphus.

In the Greek legend Sisyphus is condemned by the gods for eternity to repeatedly roll a boulder up to the top of a hill only for it to roll down again. It’s a metaphor for the individual’s struggle against life but it feels particularly pertinent for parent carers.

I felt like this recently when proposals were made to dramatically reduce my son’s therapies despite fighting for the provision last year.  All that fight and effort and here we are again.

So, what can we do?

As time has passed, I definitely feel more able to advocate for my son and my knowledge of our rights and the law have increased. I also realise that sometimes we need to let a battle go in order to win a war. I’ve learnt to pace myself so that I don’t burnout.

I’ve found that I can let others push the boulder up the hill with me, or for me, sometimes.  To rest at the bottom when necessary – the struggle can always wait a day or two. Also, to enjoy the view at the top for a while even knowing that it may be short lived.

So, we, as parent carers, continue to learn and develop.  Our landscape may stay the same but our capacity to cope grows.

Parent Carer Trauma

Many parents of disabled children will have been through a traumatic experience: seeing their child go through invasive medical interventions, difficult birth, or even day to day cumulative traumas and may show ‘evidence of post-traumatic stress’ [i].

As parent carers we usually come into contact with medical and other staff more often than parents of children who are typically developing.  Every experience of contact is potentially retraumatising and the quality of the interaction of utmost importance.  Emerson states ‘UK services are not designed to support traumatized parents, and health practice may serve to compound distress.’

Through my research into emotional wellbeing in Parent Carers, parents have reported how understanding, compassion and empathy can make a big difference.  Knowing that someone really ‘gets’ that you may be exhausted, overwhelmed and struggling rather than being faced with judgement or dismissal can have a positive impact on our wellbeing.

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

Opportunities to build a sense of control and empowerment through choice, collaboration and equality

Something simple like a recent blood test for my son brought up all sorts for me.  A potential long wait at the hospital + preparing him + my worries regarding how he’d react + bringing back upsetting memories of other times we’ve been at the hospital + no recognition from others than this was hard = I felt upset and on high alert.

In the end my son was fine, but I needed some time to recover afterwards that involved going for a nurturing coffee (me) and chocolate cake (my son) to create a positive ending to the event.  The feeling lingered though and made me think how often parent carers rush from one appointment to work, to another appointment and then back to the busyness of home without acknowledging the personal toll.

We need a safe space to re-charge.  We need compassionate, understanding and timely support from others to help us hold the emotional load that we carry.

Sometimes we just need someone to notice and ask how we are.

For more advice and tips on wellbeing please visit www.affinityhub.uk

[1] Emerson, A. (2019) ‘Room of Gloom’: Reconceptualising Mothers of Children with Disabilities as Experiencing Trauma, Journal of Loss and Trauma, DOI: 10.1080/15325024.2019.1658946

Please note:  Post traumatic stress is a common reaction to a shocking event or events in our lives. It only becomes a disorder when it goes on for a long time and affects our functioning.  If you are experiencing: flashbacks, intense memories of a traumatic event, heightened startle reflex or hypervigilance which are affecting your overall mood, making you avoid certain places or things, affecting sleep or your concentration for more than at least one month after the event please talk to your GP about a referral for psychological support – such as Trauma Focused Cognitive Behaviour Therapy (TF-CBT) or eye movement and desensitisation reprocessing (EMDR).

Parent Carers: On Call, On Edge

The theme for this year’s Carer’s week, from 8-14th Jun 2020, is ‘Making Caring Visible’.

This feels particularly relevant as during lockdown all parent carers have been quietly holding their families together in the privacy of their home with little, or no, outside support.

We are still largely hidden.

Our role is barely recognised by the limited carers allowance which is the smallest benefit of its kind (for those who can get it). It can even take time for us, as parents, to recognise that we are carers.  Yet is there anything more precious, and under-valued, than caring for another human being?

In my research into Emotional Wellbeing in Parents of Disabled children I found another largely hidden aspect of caring: that many parents live their life feeling constantly ‘on edge’.

This was illustrated by the parents who despite their child being away at respite couldn’t rest as they felt guilty, nervous and unable to enjoy the time for themselves. It takes time to adapt to this support.

It came out in the parents who even when their child is at school cannot engage in other activities in case, they get a call from school telling them to come and pick up their child.  It takes trust to relax when others care for our loved ones.

It was present in the parents who felt unheard or judged facing inadequate services or stigma and discrimination (ableism, racism, sexism and more).  Challenging bias and prejudice involves systemic as well as individual change.

Sleepless nights for parents worrying whether the service their child desperately needed would be provided.  Even hard-won support felt precarious and the battle continues in perpetuity. It requires a community to support a child with additional needs.

Add Covid-19 into the mix and many of us realise, yet again, that caring is up to us and us alone.

Therefore, part of what we need to make visible is that we are people with our own needs. Acknowledging that we are ‘on edge’ and making our anxiety visible to our self and others is an important first step.  No one can run on hypervigilance for a prolonged period of time without there being a cost to our own mental, and physical, health.

We want reassurance from society that others are there for us and will catch us when we, or loved ones, fall.  Indeed, this would be the biggest gift to carers. You can write to your MP by clicking on the link at the bottom asking them to show their support for Carers Week.

While we aren’t always valued by others, we can value ourselves.

Along with longer term goals of social change and recognition, what can help you in the immediate environment with these feelings of being on edge?

Time off

Even a small amount of time to ourselves is helpful in allowing us to re-calibrate and re-charge. I know it’s hard but it’s vital.  I realised early on in lockdown that I hadn’t had more than 10 minutes on my own during the day.  I noticed my irritability increase. I now make sure I have at least a 30-minute break in the morning and afternoon where I can put the television on for my children. Sometimes I just sit down with a cup of tea and take deep breaths and feel my shoulders relaxing.

Positive Others

Other people who you can talk to, share experiences or offload can provide a welcome distraction. You will know who these people are in your life – make the time to contact them for a chat or a socially distanced meet up.

Time away from online life

The news and social media can all become overwhelming, particularly with the current devastating news from around the world. I wonder whether we’ll all have an element of post-traumatic stress in response to the events of the last few months while we have had to hold it all together for our families. When things get back to normal (new normal?) will we have time to process what’s happened, to catch up with our psychological wellbeing and regain our balance?   Having time away from the constant flow of information provides a chance to digest what we have read and seen in our own time.

Having other things in our life

Caring for others is a noble life purpose but it is not all that defines us. We must have other interests, activities or passions in our life to maintain balance and emotional wellbeing. This means asserting our rights to a life outside caring and saying no to other less important demands on our time.

Tell people what you do and what you need from them, be proud of what you achieve and join together with all carers to make caring visible by adding your voice to the online network.

Add your voice www.carersweek.org

Ask your MP to show their support for Carers Week:  https://carersuk.e-activist.com/page/60558/action/1?ea.tracking.id=CUK-email&utm_source=Carers%20UK&utm_medium=email&utm_campaign=11572354_CW%202020%20Red%20EN%20action&utm_content=EN%20MP%20action&dm_i=74C,6W1AA,L800R3,RO2CE,1

Other wellbeing tips are available on the affinityhub.uk website www.affinityhub.uk/6/Wellbeing.html