Dowling Cindy - Lessons from my child: parents experiences of life with a disabled child

Recently I read a list of things that supposedly create stress in the lives of modern families. The usual suspects were there: getting married, moving house, changing jobs, having children, family breakdown or a family bereavement.

There is no doubt that all these things add dramatically to the pressure of family life, but in my experience, none of them compares in scale or scope to the life-changing event that occurs when you become the parent of a child with a disability.

Why? Well, perhaps it has something to do with expectations and empathy. Other people move house, change jobs and have children, and indeed we have an expectation that we will possibly do all of these at some time. There are books and articles written, and even lifestyle programs made to help us work through and cope with these various transitions. The stress and challenges are talked about openly, at work, with friends, even with strangers, and it seems that almost everyone is able to empathise in some way by sharing their own experiences and giving advice.

But you are never so alone as the time when you receive that diagnosis that changes your life, and that of all your family members, forever.

Our oldest son was diagnosed with autism just before he turned three, and he is now ten years old.

Before this occurred, I too was part of the other world, the one where you never contemplated a future that did not include fulfilling your expectations of job, family and career. Where you never thought for a moment that you might find yourself as a primary carer for a family member with high, unrelenting and totally exhausting special needs.

I was part of the people who might think, There but for the grace of God go I, and then say, How do you manage? I could never do it. But the truth is that you do manage, not because you have special skills and infinite patience, and not because you are a saintly figure prepared to sacrifice all and keep smiling. You manage because there is no choice, and because you love your child and your whole family unit as much or, indeed, more than any other parent.

Lessons from my Child is about the roller coaster ride that comes from caring for a child or adult with a disability. The roller coaster that you dont choose to get on, and that you cannot get off.

The authors and the parents who have contributed to this book have courageously and poignantly opened their lives in a way that is without parallel. They talk freely and candidly, without the pretence of having to tell the world that they are coping well, when they are in fact drowning in an ocean of seesawing emotions, uncertainty and fear.

Despite the differences in the ages, backgrounds and environments of the families that have contributed their stories, and despite the significant ranges of disabilities considered, there is indeed much that is common in the experience of raising a child with special needs. The cycle of events described in Lessons from my Child the grief, the denial, the anger, the depression, the acceptance, and finally the empowerment seems to occur in various ways in most of the families that I have met on the journey that is my new life.

The bigger picture is also here: the effect on the whole family, the siblings and the primary relationships; the search for meaning and, for many, a deepening spirituality. For some, there is the hope that their child will attain some level of independent living, but for the majority there is what one mother described as the recurrent nightmare the realisation that there can be no retirement from this carer role and that it will colour their lives forever.

Lessons from my Child is not a story of sadness, not at all. It is actually a story of personal growth and triumph! Triumph of the human spirit, triumph of love and the value of family, and a living testament to the capacity we all have within ourselves to overcome the obstacles and spikes in the road of life.

The authors talk about moments of clarity moments when you somehow realise that fate has actually allowed you to experience emotions beyond the normal range, moments when you feel that your heart just might burst. Moments when the exhaustion and pain are transcended by something far greater, and the sheer joy that little steps of progress and contact bring. It is these moments that keep us going and that we so love to share with others in the same situation, with whom we share a deep and abiding bond, and who we know will understand.

Lessons from my Child is such an important and timely set of stories. I know that it will provide great comfort and interest to those families and their friends who have taken the fork at the main road, and are travelling down this unfamiliar path. But, more importantly, it will also help to let others into our world and hopefully inspire them to share in the richness of life that comes through loving someone who is extra-special.

At some point in everyones life there exists a defining moment, a splinter of absolute clarity that takes us back from the edge and, at least momentarily, parts the fog of discontent and confusion that so often obscures our view of life.