Recently I had the privilege of interviewing mothers with disabled children on behalf of Scope, to inform an evaluation of their Face 2 Face befriending service. Face 2 Face schemes provide trained parent befrienders to offer emotional support for other parents of disabled children. Rather than a skew towards physical disability, it emerged that among our sample there was a high incidence of parenting a child with extreme ADHD and/or Autistic Spectrum Disorder.
One by one, these women opened my eyes to the reality of life with, and for, a child with ADHD or ASD. A picture was painted of unrelenting vigilance and a mother’s relentless drive to keep her child safe from harm and to protect the family unit. There was self-consciousness of being stared at in public, the ready response of shame, or anticipation of a situation which would draw unwanted attention. One mother called it ‘the silent disease’ - there are no visual cues, just to outsiders a child who looks like they should know how to behave better, or a parent who should know how to parent better.
Extremes of emotions were experienced, from grief and bewilderment to guilt, shame and resentment and frustration with health and social care systems. It was dispiriting to hear of their experiences with local authorities, mainstream education and health or social care professionals, with all too many examples of incompetence and a lack of understanding and compassion.
Sometimes incompetence was the best response - at worst, there was a sense of being deliberately driven into the ground in a battle to get a diagnosis or secure a place in a special education needs school. Survival was the day-to-day challenge, but of course these mothers also aspired to achieving the best possible quality of life and education for their children.
Frequently a family had become very isolated, it being a significant enough achievement just to get through the day. The home perhaps represented the only place of relative safety in comparison to the wider world. What we heard was a kind of ‘pressure cooker’ scenario, in which the mother was physically and emotionally exhausted, sometimes describing feeling literally ‘on her knees’. The only thing keeping her going was this overwhelming desire to do the best for her child and her whole family, because if she didn’t do it, who would?
Scope’s Face 2 Face befriending service provides the emotional and practical support that is so often sorely lacking. The befriender is responsive, compassionate, and above all, has first-hand experience of the disability, listening without any judgement or agenda. This interaction represented the first time the parent felt listened to and understood.
Through the relationship and the Face 2 Face sessions (at a time and place of the parent’s choosing), a process began in which the parent became able to let go of months, years or even decades of accumulated anxiety, strain, guilt and fear and began to rebuild trust in her own parenting ability and in the intentions of those around her. This service is invaluable to its users. One mother described how the process of befriending had lifted the strain of coping to such an extent she realised she was able to focus on her love for her child again.
The sheer relief of being understood by the befriender and being able to admit, for the first time, the darkest places that have been reached, and to realise that it was ok to feel that way, was life-changing overnight. Not just life-changing, but perhaps even life-saving. And by supporting the parent, the positive benefits rippled out to the child and the whole family. The process facilitated well-being and engagement with the outside world and more effective interactions with the health and social care professionals on which the child’s potential is so dependent.
It would seem as though society has come to some level of understanding of physical disability. When we see the wheelchair, we can in some small way relate to what it might be like to be without the ability to move ourselves independently. But we have no such visual cues for ADHD and ASD and the symptoms sound as mysterious and complex as with any kind of brain trauma or disease. The women I spoke to were emphatic – if you haven’t had this experience, you have no idea what life is like for us. Don’t try to tell me that all 13 year olds are like that, or undermine what I am telling you by giving me ‘the bright side’. Unless you have been here, you cannot know how to walk in my shoes.
During the process, I too felt a loss of faith with funding-focussed local authorities and un-empathetic paediatricians. But seeing these women’s strength and their unstinting commitment to do the best for their child and give him or her the best possible life, no matter what, and the befrienders that came into their world to take the strain, gave me a welcome appreciation of a world I had never had to understand before. It also gave me a welcome new perspective on what that overused 21st century word ‘stress’ really means.
A recent newspaper article touched on this topic. The author, Will Hutton, wrote that living well and with dignity was every human being’s aim and one that law and government should support. He expressed it as, “Tolerance of other people’s differences is a core element of a liberal order, but a good society is one where we go beyond just shrugging our shoulders at someone’s sexual preferences, religious beliefs or ethnicity. It is one in which we engage with each other, create law and justice as a moral system enshrining human dignity and accept mutual responsibilities. The aim is to live with dignity, to be able to make the best of one’s capabilities and to expect that the consequences of undeserved bad luck would be compensated by society in a mutual compact”.
Without explicitly mentioning disability, it is the perfect example of his point. Scope’s Face 2 Face befriending goes a long way towards restoring both dignity and a life lived with more ease for the families affected by disability. Funding this service is a vital part of establishing the mutual compact with society to share the responsibility.
I want to thank the parents we spoke to for sharing their stories and I want to pass on this message:
Scope offers Face 2 Face befriending. It’s free. It’s on your terms. It understands you.
It could change your life.
If you've been affected by the issues raised here, or have some experiences to share, leave us a comment below.