It should have been a day of celebration. It turned out to be a day of trauma that changed our lives and our expectations of family life so utterly that we are only just recovering.
Our son was born early on a Sunday morning. Following a long, protracted and difficult labour, he was delivered in a very poor condition and it took 23 minutes to resuscitate him. We were told he might not live, and, if he did, he might not smile, walk or talk.
Nine years on and our son does walk, talk and smile but he has many difficulties, and different diagnoses, due to his traumatic birth.
It has been a long, hard road for us through the world of special needs. I have experienced anger, denial, defiance, bargaining and depression, as well as overwhelming love, pride and elation at every small (to others but huge to us) step forward along the way.
I’ve learnt a lot on the way about many things: my attitude and society’s attitude to disability, huge frustration with the lack of resources in the NHS and social services, and how to cope with complete and utter heartbreak. An understanding, caring professional, someone who can acknowledge that attending so many appointments is draining for both my son and me, or who shows my son some genuine affection, can make such a big difference. I have also found ways to celebrate my son’s differences and accept that he does certain things in an unusual way and that’s OK, although it is sometimes more of a challenge for the rest of society – but that’s a work in progress. Hidden disabilities often take a bit more explaining to the casual onlooker.
My acceptance of his disability does not mean that I have given up fighting for my son, or that I do not feel sad that his full potential was taken away from him, but it no longer dominates our family life. We love him as the child he is; we realise that all of us are different, and that is what makes us human. In turn, we are more able to model how to manage his disability, promote his self-esteem and develop his own sense of his difficulties. I think it will also help his siblings, in time, to become more tolerant and accepting individuals.
There is the issue of terminology. The social model of disability1 was developed in response to the medical model of disability, which originally viewed the person as a problem to be ‘fixed’. In the social model, people are seen as disabled not by their impairment or difference but by the barriers society places in their way and the inflexibility of the systems around them. This is why the social model uses the term ‘disabled person’, rather than ‘person with disabilities’.
For some parents, however, the term ‘disabled’ can be too much before they are ready to accept it; they may prefer the term ‘child with special or additional needs’. It is important that we, as professionals, are aware of where the parent is on their disability journey. Sometimes our role may be to educate someone about appropriate terminology, and at other times it is important that we meet the client where they are.
I remember a time when well-meaning therapists were suggesting that my son would be ‘better off’ at a special school, without realising how much this horrified me. Further down the line I am fine with the fact he is at a special school, but I was not ready to hear it back then.
I want to share some of the lessons I’ve learnt, to help counsellors who may be working with a parent in my situation. Many of the lessons may be relevant to other situations and life events, such as recovery from trauma, or when someone’s whole existence has been changed and they are forced into a new, unknown world.
I have worked for several years for Hemihelp, a charity that supports families who have a child with hemiplegia. This is a lifelong condition caused by injury to the brain that affects the movement of one side of the body and can also cause other associated learning and emotional difficulties. I see the struggles that families go through: the emotional adaptation and acceptance, their grief for the lost healthy or idealised child while they fight for the limited services available. Those who shout loudest often get the most out of services, but there is a fine balance to be struck here: if parents are perceived as ‘demanding’, services may withdraw or become less accommodating.
The common feelings I outline here are drawn from the experiences of the families I have worked with, and from a pilot research study I have been undertaking. This is an open-ended online survey, completed by 39 parents to date. My findings are in line with anecdotal evidence from my three years working with families at Hemihelp and from research by Cerebra, a support charity for children with neurological problems and their parents.
Unsurprisingly, all the parents I have interviewed felt anxiety or stress about their child, ranging from day-to-day concerns to worries about what the future will hold and the impact on siblings. This mirrors research undertaken by Cerebra, which has produced an excellent booklet for carers and their families on managing stress.2 Nearly two thirds felt anger about their child’s disability and 60 per cent felt depressed or down. Many expressed feelings of helplessness (52%) and some experienced denial (22%).
On a positive note, many parents reported feelings of pride (74%) and an inner strength or resilience (60%) that helped them get through their experiences. Half of the respondents also reported having a ‘fighting spirit’ (52%) to advocate on behalf of their child.
In the words of a mother of an 11-year-old daughter with global developmental delay: ‘Push for everything you can think of, especially a statement as early as possible. Ask for the moon on a stick; the worst they can do is say no. If they say no, find a different way of asking.’
However, while the battle can be motivating and energising, it can sometimes also become a problem in its own right, leading to fatigue and sometimes collapse.
Exactly half my respondents said having a disabled child had a negative impact on their own life, although many stressed that this could change, depending on the time and day (my survey only gave the option to respond in the positive or negative). Over 70 per cent felt there had been a negative impact on siblings and nearly 80 per cent said it had negatively affected their relationship with their partner.
Trauma and guilt
Half my respondents reported feelings of guilt – that they were somehow to blame and if they had done something different their child would not be disabled. This taps into our innate desire to keep our children from harm. It can lead to a fixation on the period just before the trauma, which I refer to as the ‘pre-articulus stage’ (pre-traumatic incident), and repeated thoughts that ‘if only I had done xxx, this wouldn’t have happened’, which can become all consuming.
Janoff-Bulman’s theory of shattered assumptions3 describes three implicit beliefs that many of us hold: first, that the world is benevolent; second, that the world is meaningful, controllable, predictable and just, and third, that we are worthy, decent people with the ability to control outcomes.
Then, when something goes wrong, the foundations of life can disintegrate.
Many parents will have experienced and may still be experiencing trauma. Those who have seen their child nearly die or undergo numerous invasive medical interventions may take time to regain their faith and trust in the world. In parents who are still traumatised you may see an exaggerated startle response, constant concern for their child’s health and that of their other children, and heightened anxiety.
Roos refers to the ‘chronic sorrow’4 of having a disabled child: it is, she argues, unlike grief, as the child is alive. There may be constant upsets throughout a child’s life that bring up a surge of sadness, particularly if comparisons are made with other, non-disabled children: ‘An unexpected trigger was the high school graduation ceremony of my sister’s adopted daughter… at some point… I felt lightheaded and got a sudden lump in the throat. I realized… that this event would never happen for any child of mine.’4
Part of the healing comes from acceptance that life is not always in our control, that challenging things happen to good people but that does not mean that everything else in your life is inevitably going to go wrong. You don’t need to try to have absolute control over everything, in an obsessive compulsive way. Human beings can be remarkably resilient. Heidegger talks about how we are ‘thrown’ into the world and into a given situation and this is part of what it is to be human.5 Unfortunately, once you have looked into the existential abyss and realised how random life can be and that there isn’t always a safety net to save you and loved ones from harm, it can take some time to recover. Sartre’s response is that you must find meaning in life and it will be unique to every one of us.6 Frankl’s theory of logotherapy is founded on the same belief that it is important and possible to find meaning in life, however desperate your situation.7
For parents with a child with special needs, there is huge scope for hope, joy and delight in their ‘ordinariness’.8 Many parents see the lack of services and their experiences of injustice as a call to action, not just on behalf of their own child; they campaign, lobby and set up charities and show amazing resilience and strength. The potential for post-traumatic growth can be seen in the way many of them respond. The parents in my survey said that having a child with special needs had helped them put life into perspective (80%), grow as a person (70%), become more tolerant (65%) and be more resilient (65%). Many reported increased confidence in their ability to support their child as they became the expert and, at times, were able to challenge the views of professionals.
These are all strengths to celebrate and build on in therapy. By supporting the parent you are indirectly supporting the child to feel positive about their abilities and differences. As a counsellor, I too have been able to use my own experience of looking into the abyss to be able to hold the hope for them when working with clients in the depths of despair.
But not all feel able to take up the battle and fight the system. I have met parents who get up early in the morning to give their child physiotherapy before they go to school, as the input from community physiotherapy services is so limited. Some have gone through many tribunals to get the right school for their child. But I have met others who have given up, overwhelmed by their child’s needs and the constant battle to get help.
Individual personality, temperament and their own childhood experiences will all have an impact, and unprocessed feelings of anger or guilt can also get in the way. Divorce is common and sometimes parents can lose contact with friends, particularly if a friend’s child is reaching all of their milestones when their child is not. Some parents avoid playgroups because they don’t want to answer people’s questions about their child or because other parents find their child’s behaviour challenging. Isolation and withdrawal can be the enemy of mental wellbeing; finding support groups and other parents in a similar situation can be a lifeline. The irony is that, although there are many other families out there with children with additional needs, it can be hard to find them. As Andrew Solomon writes: ‘Difference unites us. While each of these experiences can isolate those who are affected, together they compose an aggregate of millions whose struggles connect them profoundly. The exceptional is ubiquitous; to be entirely typical is the rare and lonely state.’9
It can be helpful if the counsellor or psychotherapist has some understanding of child development. Most parents I meet are desperate to know how their child is performing in comparison with non-disabled children. All children are different and progress at different rates, but some knowledge of typical development and therefore atypical development can help identify when there is an issue that may need external professional input.
The reason for this article is to highlight the importance of access to expert emotional support from an experienced counsellor, psychotherapist or psychologist who understands the grieving and adjustment process through which many parents of disabled children will need to go. However, finding this expert support is not easy. I have established a website that offers advice and information to parents of disabled children, which includes a database of counsellors, psychotherapists and psychologists and organisations with relevant knowledge in the UK. The website can be viewed at www.affinityhub.uk and we are also on Facebook and Twitter.
If you have relevant experience and would like to be listed on the website, please email your CV to firstname.lastname@example.org, outlining your experience.
1. See www.scope.org.uk/about-us/our-brand/social-model-of-disability.
2. Cerebra. Managing stress for carers and their families. Carmarthen: Cerebra; 2005.
3. Janoff-Bulman R. Shattered assumptions. New York: Free Press; 1992.
4. Roos S. Chronic sorrow: a living loss. New York: Routledge; 2002.
5. Heidegger M. Being and time: a translation of ‘Sein und Zeit’. (First published 1953.) Joan Stambaugh trans. Albany, NY: SUNY Press; 1996.
6. Sartre JP. Existentialism is a humanism. (Lecture delivered 1945.) In: Sartre JP. Existentialism is a humanism. New York: Yale University Press; 2007.
7. Frankl V. Man’s search for meaning. (First published 1946.) London: Hodder & Stoughton; 1964.
8. Bartram P. Understanding your young child with special needs. London: Jessica Kingsley; 2007.
9. Solomon A. Far from the tree. London: Random House; 2012.