Jo Griffin

@griffinpsychology | contributor
Parent Carer, Chartered Counselling Psychologist and Author of new book - Day by Day: Emotional Wellbeing in Parents of Disabled Children (www.amazon.co.uk/Day-Emotional-Wellbeing-Disabled-Children/dp/1911383531). Founder of www.affinityhub.uk - emotional support for parents of disabled children.
Community Voices

Emotional Wellbeing in Parent Caregivers

<p>Emotional Wellbeing in Parent Caregivers</p>
4 people are talking about this
Jo Griffin

Finding Emotional Well-Being as Parents of Children With Disabilities

Life always involves adversity and challenges. We cannot escape that. What we do have in our control, though, is how we respond, including developing strategies to deal with challenges and how we look after ourselves. Through my research into emotional well-being in parents of children with special educational needs and disabilities (SEND), I realized it can be helpful to think of wellbeing as a form of achieving balance. At times there will be more stressors, or difficulties in life (e.g. fighting for services or behaviors that challenge), so it’s important we regain balance by engaging in more replenishing activities. For example, after a difficult hospital appointment or meeting in your child’s school, taking time to talk to a good friend, take a walk in nature or just sit and read a book with a hot drink can allow us to gain equilibrium. Related to balance is the concept of hedonic adaptation. This is the tendency human beings have to return to their usual set-point after highs and lows in life. It is an amazing reflection of our adaptability and flexibility. The return path can be hard and take longer for some than others, depending on the context. The ability to bounce back following adversity is often referred to as resilience. It can involve recovering as well as flourishing. This is a bit of a buzzword at the moment. But it does depend on many factors and requires sufficient inner and external resources to cope with whatever life throws at us. A number of parent carers I spoke to have expressed a strong negative reaction to the word resilience. I think in part due to how it is sometimes used to suggest a personal failure on behalf of the parent, i.e. if only they were more resilient then the situation wouldn’t be a problem. When used like this it can be deeply shaming. It also places responsibility on an individual rather than acknowledging the system around the individual or family is failing. Individuals need community and social support in order to develop resilience in the face of continuous stressors. This can be referred to as “community resilience.” Supporting our emotional well-being as parent carers is an ongoing process. Being aware of our own emotions, including knowing in advance that something may be difficult, can ensure we build in a protective cushion around ourselves at these times. It’s vital that we learn how to identify and implement strategies that help — day by day.

Jo Griffin

Finding Emotional Well-Being as Parents of Children With Disabilities

Life always involves adversity and challenges. We cannot escape that. What we do have in our control, though, is how we respond, including developing strategies to deal with challenges and how we look after ourselves. Through my research into emotional well-being in parents of children with special educational needs and disabilities (SEND), I realized it can be helpful to think of wellbeing as a form of achieving balance. At times there will be more stressors, or difficulties in life (e.g. fighting for services or behaviors that challenge), so it’s important we regain balance by engaging in more replenishing activities. For example, after a difficult hospital appointment or meeting in your child’s school, taking time to talk to a good friend, take a walk in nature or just sit and read a book with a hot drink can allow us to gain equilibrium. Related to balance is the concept of hedonic adaptation. This is the tendency human beings have to return to their usual set-point after highs and lows in life. It is an amazing reflection of our adaptability and flexibility. The return path can be hard and take longer for some than others, depending on the context. The ability to bounce back following adversity is often referred to as resilience. It can involve recovering as well as flourishing. This is a bit of a buzzword at the moment. But it does depend on many factors and requires sufficient inner and external resources to cope with whatever life throws at us. A number of parent carers I spoke to have expressed a strong negative reaction to the word resilience. I think in part due to how it is sometimes used to suggest a personal failure on behalf of the parent, i.e. if only they were more resilient then the situation wouldn’t be a problem. When used like this it can be deeply shaming. It also places responsibility on an individual rather than acknowledging the system around the individual or family is failing. Individuals need community and social support in order to develop resilience in the face of continuous stressors. This can be referred to as “community resilience.” Supporting our emotional well-being as parent carers is an ongoing process. Being aware of our own emotions, including knowing in advance that something may be difficult, can ensure we build in a protective cushion around ourselves at these times. It’s vital that we learn how to identify and implement strategies that help — day by day.

Community Voices

Emotional Wellbeing in Parent Caregivers

<p>Emotional Wellbeing in Parent Caregivers</p>
4 people are talking about this
Community Voices

Emotional Wellbeing in Parent Caregivers

<p>Emotional Wellbeing in Parent Caregivers</p>
4 people are talking about this
Jo Griffin

Tips to Cope With Helplessness as the Parent of a Kid With Disability

We all need a sense of mastery or control in our lives; this is key for emotional well-being. It is particularly important in the life of a parent who’s a caregiver. We are subject to more ‘experts,’ appointments and advice than most other parents and this can be de-skilling and disempowering. Our parenting suddenly becomes public, observed and judged. It can sometimes feel like we do not know what is best for our child, or that others are in a better position to know what they need. Not a nice feeling. We also come up against more brick walls than other parents as part of the system with which we have to deal — whether it’s education, health or social care. Emails unanswered, EHCPs delayed or not actioned, trying, and failing, to get hold of someone in the NHS or local authority. The frustration can bring you to tears of helplessness. It can feel like you’re engaging in battle with a great big faceless behemoth. ‘Learned helplessness’ Ever since the psychologist, Martin Seligman, undertook unpleasant experiments using electric shocks on dogs the term ‘learned helplessness’ has referred to that feeling when, despite your best efforts, nothing you do changes the situation. By the end of his experiment, the dogs just lay down and submitted themselves to the shocks. They had learned there was nothing they could do to escape them, they just had to roll over and accept it. The studies led to a recognition that helplessness can lead to depression and feeling like future efforts to change things are unlikely to work. It is no wonder if sometimes we as caregivers feel like giving up… or we fight. Activism One outcome for parents is becoming a warrior or activist. Recent statistics released by the Disabled Children’s Partnership show that only 4 percent of parent caregivers feel they receive the right support to care for their child with a disability safely. If this is the only way to get what your child needs, no wonder parents feel like they have to go into combative mode. This can mean fighting the system, resisting the system or refusing to engage in the system. Where usual routes of complaints or collaboration for improving the situation fail, it may be that taking to social media is the only way to have an impact. While this approach is vital for improving services — and powerful — it is also draining and all-consuming. I wonder about the cost, on a personal level, to this. The importance of finding balance and other things to nurture you in life are so important. Acceptance Acceptance is often portrayed as the opposite of denial and maybe this is particularly important in circumstances when the cause of the stress cannot easily be changed. It is sometimes interpreted as defeat, but it doesn’t always mean passive acceptance – it can be an active and functional coping response, given the circumstance. What’s the point of continually banging your head against a brick wall about something that won’t change? It may be better to divert your attention and energy onto something else or being more creative about a different way around the wall. Regaining control There may be times when we cannot fight the system and patience is the only response we can have. (I’m not a patient person, but having a child with a disability has taught me patience, tolerance and so much more). In this instance, some people report little things that help: tidying up, doing the washing, having clean sheets and a duvet, or my personal favorite, organizing the tins in the kitchen cupboard. Small, yes, but significant because it gives that sense of control and achievement that maybe are lacking in other areas. I also find it helpful to write, whether it’s journaling, blogging or scribbles in my notebook. Recent studies suggest that handwritten journaling is often the best method, we process as we write and our whole body is engaged. Sometimes consciously thinking about the positives can change our frame of mind, recognizing the victories, the things we’re grateful for and proud of. I find some annual appointments with my son useful for this as I’m reminded how far we have all come. Loneliness as caregivers is also a challenge, and I’ve found the little things can often help: coffee with a friend, a cathartic splurge on a supportive social media group (if you know the response will be supportive), or a chat on the phone. Growth through adversity is relevant to parents of kids with disabilities. Parents report becoming a better person, recognizing how much they’ve learned along the way and the strength they’ve gained. Different strategies work for different people. It’s important to find what grabs your interest and passion. The key factors for emotional well-being (for me) are: enjoyment, engagement and meaning. These things can help you get into the flow of the activity, like coloring, baking, or gardening. They can take your mind off things and give your brain a chance to re-set after stress. In it for the long haul I’m sure we all know these strategies, but putting them into place is hard at times and keeping them going over a long period of time can be challenging. We need reminding to think of ourselves and our own emotional needs. And you never know what is around the corner. Having recently stepped back a bit from micro-managing my son’s life, as I felt like everything was going swimmingly and I could afford to relax and leave them to it, things suddenly unraveled again. Support wasn’t in place that I had previously believed was. Phone calls ensued, I become the liaison between different groups again and my brain had to hold so much information and conversations that there was little space for anything else. I started to wonder if this meant I could never relax again – do I always need to be on guard, hyper-vigilant, ready for the next fight? I realized it’s better to think of it as rallying to do battle when called for, but in between needing to take a breath, re-group, reconnect with who I am and my own interests. I wanted to be able to prioritize when to focus all my attention on a problem to get the outcome we need. So this meant learning when to fight and when to step back. I recognize this as something that has grown out of being a parent caregiver and it’s something I’m sure most other parents can relate to. We are an amazingly skilled cohort of individuals who have so much expertise and resilience. Recognizing that is one way to counter the helplessness. Studies suggest that approach and avoidance coping strategies (i.e. doing battle, then retreating to re-energize) can be synergistic. We need the avoidance to re-charge to then approach the problem again. Life needs the balance of both. There’s a time to fight for change and time for acceptance. Learned optimism and emotional well-being Interestingly, Seligman, who had coined the phrase ‘learned helplessness’ went onto discuss ‘learned optimism’ and played a key part in the development of ‘positive psychology.’ We can learn resilience, strength and optimism by acknowledging the positives in life and building up our personal resources. For example, undertaking small acts of kindness, acknowledging things you’re grateful for each day, and finding long-term meaning in life rather than seeking out the short-term happiness and pleasure. It’s important to recognize that unpredictability and uncontrollability are challenges to our own psychological wellbeing. In order to feel like the ‘architects of our own destiny,’ being engaged and feeling purposeful and valued are key. Our fight for a better life for our children often offers us this purpose. But there are times when the battles for our child are all-consuming, overwhelming and seemingly unsurmountable. At these times, we need to find a sense of control and autonomy in other aspects of our life, however small, in order to keep helplessness at bay. Seligman, M. (2003) Authentic Happiness: Using the NewPositive Psychology to Realize your Potential for Lasting Fulfillment,Nicolas Brealey: London

Community Voices

Parent Carers and Guilt

Jo Griffin of www.affinityhub.uk looks at the complex issue of guilt with Rebecca Loo, Occupational Therapist.

Many parents feel guilty over their child’s disability which can seem irrational to an outside observer.  There is a primal desire in most of us to protect our children at all costs.  On receiving negative news it can feel like we have failed to do this, however much we can see, logically, that it was out of our hands and not our responsibility.

In an online survey via www.affinityhub.uk,  66% of respondents reported feeling guilty about their child’s disability.  Most parents do everything they can to help their child and we can take on the mantel of guilt; feeling 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 traumatic event from happening. If I could have prevented it from happening, then my sense of control is maintained)’ (Joseph, 2011, p. 117).

It is hard to acknowledge that sometimes, despite all our best efforts, we cannot protect our children from negative circumstances.  This is exacerbated with a disabled child as we do not want them to experience pain or suffering, but we don’t always know the best way to help them.  We therefore end up handing over our role of being the ‘expert’ to other professionals, such as doctors, physiotherapists and speech and language therapists.  The message is that we no longer know what is best for our child, or how to help them, which again layers on the guilt.We are not expected to be trained doctors, health visitors, midwifes, social workers and psychologists all rolled into one.

Guilt may be exacerbated by society’s expectations and idealisations of the parent role and the judgement on parents around their children. This can be seen in examples where parents have been blamed by the public for their disabled child having a tantrum in a supermarket or not conforming in school.   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’.  It would be ok for us to be ‘good enough’ (Winnicott, 1953).

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

As Barrett (2010) states:‘parents often assume responsibility for every additional problem their child suffers – if he is miserable it is because they failed to make him happy; if he is ill, it is because they failed to take adequate care of him…if any or all of these things were to happen to an able-bodied [sic] 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?’ (p. 3).

At times it can be useful to focus on the ‘ordinariness and not the “special-ness” of the child’ (Bartram, 2009, p.11).

Parents can find it confusing to think about what is the disability and what is the child and the way this becomes entangled.  They sometimes lose the sense of normalcy that parents of non-disabled children have, because they have often been through a traumatic time which triggers their sense of hypervigilance.

Rebecca Loo, Occupational Therapist and mum to a son with hemiplegia and medical needs shares her experience:

‘I often think about guilt: my own and that of the mothers that I work with. I can recall clearly how personally responsible I felt for my son’s disability in the early stages. I questioned every tiny decision I made during my pregnancy – should I have had that glass of wine?… was it because I clumsily tripped over that time?… did I pick up my toddler when I shouldn’t have? I even had thoughts that maybe a disabled child was punishment for me marrying a foreigner, which shows how distanced from rationality my thinking was. Even though in my logical, rational brain I knew that disabilities ‘just happen sometimes’ the emotional part of my brain just couldn’t shake off the feeling that I, as his mother, must be entirely responsible.

For me, the dawning came when I was working with other mothers of children with disabilities. On the occasions where I had developed trust and mothers opened up to me, I would find them expressing similar “what ifs” to my own. What if I’d not eaten that soft cheese?… maybe I should have rested more? I shouldn’t have missed that appointment that day. I then found my professional, rational self, reassuring them that they were in no way responsible for their child’s disability. I found it entirely obvious and fully believable that they carried no responsibility, whatsoever. On the one hand I truly believed it for them, and yet to apply that belief to myself was something else.

So, one day I decided (and it was a decision) that I was going to show myself the same compassion as I gave the mothers I worked with. I would actively accept that I was no more responsible for my son’s disability than I was for his eye colour or gender.I talk here about mothers. This is because the conversations I have had about guilt appear to me to be very specifically female-contextualised. I wish I had more chance to engage with fathers, but even in today’s times of gender-equality, the primary care-giver for disabled children still generally tends to be the mother. I do wonder how and whether guilt is such a factor for fathers, or whether guilt grows directly from the carrying of and delivering of the child, or even something deep within female psychology or the ways we are socialised as girls and women.

As an Occupational Therapist, it is my role to address the day to day difficulties children face with their ability to self-care, do their school work and engage in play and leisure. It strikes me as significant that when I begin to address some of these areas, I quite often end up having conversations about guilt. For example, a child may be referred to me because they cannot wipe their bottom themselves. When I begin to talk about what has been already tried, quite often mothers will sheepishly admit that they never really encouraged their child to wipe their own bottom. They provided care, over and above that needed, because their deeply held guilt demanded that they nurtured their child, or even compensated the child for the disability they somehow felt was of their making.

I have seen a few families where the manifestation of maternal guilt presents in children who are allowed to fall asleep on sofas and be carried to bed, and hence don’t get chance to develop skills around bedtime self-soothing. I see it when children ‘get away with’ bad behaviour whilst siblings are corrected, because of how the parents frame themselves as responsible for their child’s disability. Of course, these situations are highly complex, with guilt being only one of many factors. However, I do really believe that guilt is a significant theme. Sometimes just by talking openly about guilt with a mother I can find that in a short time a child’s difficulty with an activity can resolve. Somehow acknowledging and being open about guilt, can dispel its hold over us and the way we parent.

The process of casting off guilt is also complex and requires time, reassurance and self-compassion. These things are at a premium when caring for a disabled child, of course. What we must try and avoid therefore is being made to feel guilty for feeling guilty! Or feeling guilty for any of the complex feelings we experience as parents of children with disabilities.’

www.affinityhub.uk aims to provide emotional support to parents of disabled children by signposting to organisations and private practitioners who have experience and knowledge of supporting parent-carers.  The site outlines common emotional responses and quotes from other parents. There is also a survey parents can complete to express their own emotional reactions and share with others on the website.

Rebecca leads the Orthotics Campaign, a group of disabled people and carers who together are pressing for better NHS provision of footwear, splints and other Orthotic devices. If you’d like to add your voice to theirs please visit www.orthoticscampaign.org.uk or email
References:

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

Bartram, P. (2010) Understanding your young child with special needs, London: Jessica Kingsley

Joseph, S. (2011) What Doesn’t Kill Us: A guide to overcoming adversity and moving forward, Piatkus: London

Winnicott, D. (1953)  Playing and Reality, Routledge

2 people are talking about this
Community Voices

Parent Carers and Guilt

Jo Griffin of www.affinityhub.uk looks at the complex issue of guilt with Rebecca Loo, Occupational Therapist.

Many parents feel guilty over their child’s disability which can seem irrational to an outside observer.  There is a primal desire in most of us to protect our children at all costs.  On receiving negative news it can feel like we have failed to do this, however much we can see, logically, that it was out of our hands and not our responsibility.

In an online survey via www.affinityhub.uk,  66% of respondents reported feeling guilty about their child’s disability.  Most parents do everything they can to help their child and we can take on the mantel of guilt; feeling 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 traumatic event from happening. If I could have prevented it from happening, then my sense of control is maintained)’ (Joseph, 2011, p. 117).

It is hard to acknowledge that sometimes, despite all our best efforts, we cannot protect our children from negative circumstances.  This is exacerbated with a disabled child as we do not want them to experience pain or suffering, but we don’t always know the best way to help them.  We therefore end up handing over our role of being the ‘expert’ to other professionals, such as doctors, physiotherapists and speech and language therapists.  The message is that we no longer know what is best for our child, or how to help them, which again layers on the guilt.We are not expected to be trained doctors, health visitors, midwifes, social workers and psychologists all rolled into one.

Guilt may be exacerbated by society’s expectations and idealisations of the parent role and the judgement on parents around their children. This can be seen in examples where parents have been blamed by the public for their disabled child having a tantrum in a supermarket or not conforming in school.   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’.  It would be ok for us to be ‘good enough’ (Winnicott, 1953).

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

As Barrett (2010) states:‘parents often assume responsibility for every additional problem their child suffers – if he is miserable it is because they failed to make him happy; if he is ill, it is because they failed to take adequate care of him…if any or all of these things were to happen to an able-bodied [sic] 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?’ (p. 3).

At times it can be useful to focus on the ‘ordinariness and not the “special-ness” of the child’ (Bartram, 2009, p.11).

Parents can find it confusing to think about what is the disability and what is the child and the way this becomes entangled.  They sometimes lose the sense of normalcy that parents of non-disabled children have, because they have often been through a traumatic time which triggers their sense of hypervigilance.

Rebecca Loo, Occupational Therapist and mum to a son with hemiplegia and medical needs shares her experience:

‘I often think about guilt: my own and that of the mothers that I work with. I can recall clearly how personally responsible I felt for my son’s disability in the early stages. I questioned every tiny decision I made during my pregnancy – should I have had that glass of wine?… was it because I clumsily tripped over that time?… did I pick up my toddler when I shouldn’t have? I even had thoughts that maybe a disabled child was punishment for me marrying a foreigner, which shows how distanced from rationality my thinking was. Even though in my logical, rational brain I knew that disabilities ‘just happen sometimes’ the emotional part of my brain just couldn’t shake off the feeling that I, as his mother, must be entirely responsible.

For me, the dawning came when I was working with other mothers of children with disabilities. On the occasions where I had developed trust and mothers opened up to me, I would find them expressing similar “what ifs” to my own. What if I’d not eaten that soft cheese?… maybe I should have rested more? I shouldn’t have missed that appointment that day. I then found my professional, rational self, reassuring them that they were in no way responsible for their child’s disability. I found it entirely obvious and fully believable that they carried no responsibility, whatsoever. On the one hand I truly believed it for them, and yet to apply that belief to myself was something else.

So, one day I decided (and it was a decision) that I was going to show myself the same compassion as I gave the mothers I worked with. I would actively accept that I was no more responsible for my son’s disability than I was for his eye colour or gender.I talk here about mothers. This is because the conversations I have had about guilt appear to me to be very specifically female-contextualised. I wish I had more chance to engage with fathers, but even in today’s times of gender-equality, the primary care-giver for disabled children still generally tends to be the mother. I do wonder how and whether guilt is such a factor for fathers, or whether guilt grows directly from the carrying of and delivering of the child, or even something deep within female psychology or the ways we are socialised as girls and women.

As an Occupational Therapist, it is my role to address the day to day difficulties children face with their ability to self-care, do their school work and engage in play and leisure. It strikes me as significant that when I begin to address some of these areas, I quite often end up having conversations about guilt. For example, a child may be referred to me because they cannot wipe their bottom themselves. When I begin to talk about what has been already tried, quite often mothers will sheepishly admit that they never really encouraged their child to wipe their own bottom. They provided care, over and above that needed, because their deeply held guilt demanded that they nurtured their child, or even compensated the child for the disability they somehow felt was of their making.

I have seen a few families where the manifestation of maternal guilt presents in children who are allowed to fall asleep on sofas and be carried to bed, and hence don’t get chance to develop skills around bedtime self-soothing. I see it when children ‘get away with’ bad behaviour whilst siblings are corrected, because of how the parents frame themselves as responsible for their child’s disability. Of course, these situations are highly complex, with guilt being only one of many factors. However, I do really believe that guilt is a significant theme. Sometimes just by talking openly about guilt with a mother I can find that in a short time a child’s difficulty with an activity can resolve. Somehow acknowledging and being open about guilt, can dispel its hold over us and the way we parent.

The process of casting off guilt is also complex and requires time, reassurance and self-compassion. These things are at a premium when caring for a disabled child, of course. What we must try and avoid therefore is being made to feel guilty for feeling guilty! Or feeling guilty for any of the complex feelings we experience as parents of children with disabilities.’

www.affinityhub.uk aims to provide emotional support to parents of disabled children by signposting to organisations and private practitioners who have experience and knowledge of supporting parent-carers.  The site outlines common emotional responses and quotes from other parents. There is also a survey parents can complete to express their own emotional reactions and share with others on the website.

Rebecca leads the Orthotics Campaign, a group of disabled people and carers who together are pressing for better NHS provision of footwear, splints and other Orthotic devices. If you’d like to add your voice to theirs please visit www.orthoticscampaign.org.uk or email
References:

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

Bartram, P. (2010) Understanding your young child with special needs, London: Jessica Kingsley

Joseph, S. (2011) What Doesn’t Kill Us: A guide to overcoming adversity and moving forward, Piatkus: London

Winnicott, D. (1953)  Playing and Reality, Routledge

2 people are talking about this
Community Voices

Disability Journey, Interrupted

At its simplest (and life isn’t always simple) there is a recognisable journey that families go through when they have a disabled child.  The early years can be challenging – shock, anger and confusion can take time to evolve into acceptance and adaptation to a new life, one that is different from that expected, but rewarding, surprising and sometimes transformational.

Once support and education are put in place and like-minded families found, a plateau can be reached where the family take stock, often realising that although life is unexpected there can be a new-found wisdom, expertise and putting things into perspective. Increased empathy, patience and tolerance are positives reported by many.

The challenges don’t dissipate – transitions to secondary school and adulthood, the uncertainty of puberty and fighting for services come along. It becomes clearer whether your child will live independently and realising that certain milestones may be very hard to achieve, or not come at all, again challenge a family’s capacity to adapt, grow and accept difference. Miraculously most families do manage this, sanity and relationships mainly still intact. This is a testament to human love, strength and capacity to tolerate adversity.

The problem is that this journey or emotional arc is a very finely balanced pathway. We, as parents, accept there’ll be hiccups along the way. Having children is never plain sailing. At the moment though, it seems that the odds are stacked against parents making it through at all to a satisfying and fulfilling place of acceptance.  Cuts to services, lack of understanding, long waiting lists and no space or time for acknowledging the impact on our emotional well-being takes its toll on parent and child. There are only so many fights humans can endure before we give into burnout or helplessness. Ironically this is when we most need the state to support us and the costs and damages are higher.  With a more co-ordinated support package including early intervention, signposting for appropriate help with well-trained professionals and finding the right community (i.e. support groups with similar families) the scenario in which many find themselves could be avoided.

The increasing battles that parents are having to undertake

are seen in recent events: SEND crisis march www.specialneedsjungle.com/send-national-crisis-marching-dis...,

the Disabled Children’s Partnership campaign #giveitback,  as well as #HumanToo and #HomesnotHospitals www.youtube.com/watch.

Parents become activists and will fight for their children.  Whilst positive that action is happening, it shouldn’t be so hard. Add lobbyist and political player into the already over-worked parent-carer list of roles and the danger is that any victory is pyrrhic if the toll on the parents’ emotional well-being is too great. Furthermore, our children get caught up in this storm.  As the charity Contact states ‘families want to put their energy into enjoying life with their disabled child rather than fighting the system to get services’. [1]

I’m interested to hear how parents are managing.

I’m undertaking research into emotional wellbeing in parents

of disabled children (aged between 2-11). If you would like to be involved please find out more details here www.affinityhub.uk/8/Research.html

[1] Contact A Family: What makes my family stronger? May

2009

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Community Voices

Emotional Journey, Interrupted

There is a recognisable journey that families go on when they have a disabled child. In its simplest form, the early years can be challenging, yet shock, anger and denial can evolve into a new acceptance and adaptation of a new life. It may take time, years even, but it is possible.

Once support and education are put in place and like-minded families found, a plateau can be reached where the family take stock, often realising that although life is different there can be a new-found wisdom, expertise and putting things into perspective. Many parents also report increased empathy, patience and tolerance.

The challenges don’t dissipate – transitions to secondary school and adulthood, the uncertainty of puberty and jostling for appropriate services come along. It becomes clearer whether your child will live independently and realising that certain milestones may be very hard to achieve, or not met at all, again challenge a family’s capacity to adapt, grow and accept difference. Miraculously most families do manage this, sanity and relationships mainly still intact. This is a testament to human strength, endurance and capacity to tolerate adversity.

The journey or emotional arc is very finely balanced. We, as parents, know there’ll be hiccups along the way. Having children is never plain sailing. At the moment though, it seems that the odds are stacked against parents making it through to a satisfying and fulfilling place of acceptance. Cuts to services, lack of understanding, long waiting lists. No space or time to acknowledge how daily living takes its toll on our mental well-being and that of our child. There are only so many battles humans can endure before we give into helplessness. Ironically this is when parents most need the state’s support and the damage and costs are higher. With a more co-ordinated support package, including early intervention and signposting for help, the scenario in which many find themselves could be avoided.

The increased battles that parents are having to undertake are seen in recent news: Nascot Lawns, Short Breaks petition to Downing Street, Exclusions review. Parents become activists and will fight for their young. Whilst positive that action is happening, it shouldn’t have to be this way; the role of lobbyist and campaigner added to already over-worked parent-carers. There is the risk of a pyrrhic victory if the toll on the parents’ emotional well-being is too great. As the charity Contact states ‘families want to put their energy into enjoying life with their disabled child rather than fighting the system to get services’. [1]

[1] Contact A Family: What makes my family stronger? May 2009

www.affinityhub.uk

Emotional support for parents of disabled children