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Have you ever felt -

As if your judgment about your child is in some way inappropriate, subjective, clouded by emotional involvement perhaps? As if your opinion about your child is irrelevant or taken with scepticism? That your feelings are categorised as part of a grieving process, discounted as 'understandable'? That your actions are measured against some sort of ascending scale of acceptance of or adjustment to your child's disability? Guilt for seemingly being 'blind' to the difficulties your child has or apparently not recognising your, your child's and your family's 'true' needs? Judgment for not being happy with or accepting services, programs or carrying through therapies? Responsible for indulging your own fears, worries, and judgments to the apparent 'detriment' of fulfilling your child's needs?

When I was a professional working with families who had children with disabilities, I needed a way of interpreting the behaviour of children and the reactions from parents. Intellectualising what I saw in terms of knowledge of the disability, the grieving process and drawing similarities between families, gave me a framework for making sense of what I didn't understand. As a parent, including being a parent of a child with a disability, I don't have that same need.

The journey of parenting for me has been inter-woven with grief, hope, extreme stress, sensitivities, frustrations, joy, loneliness, adjustments, rationality, irrationality and a struggle to make sense of it all. No one feeling, action or decision is the sole result of having a child with a disability. There is more to me than being a parent of a child with a disability, despite the all encompassing nature of it at times. There is also more to my daughter than her disability. People, parents and families are complex and dynamic and it is my guess that no two people, parents or families are the same.

I heard, just recently, that emotional involvement can be a good thing. It struck me, that this is exactly what I had learnt from being a parent. I learnt that I wasn't restricted to a framework of disability or grief, and that my perception of my child is viewed in the much larger context of her personality, her family and her life. As her parent, I am the only one that is in the position to see the whole picture.

Emotional involvement is the only thing that enables me to: commit in the face of adversity; carry on when I have nothing left to give; fight despite the knock-backs; learn to live with fears; discover joy where others don't look; maintain hope when others are disillusioned and, above all, to hang in there for the long term.

As a professional I was fortunate. I never needed to confront these aspects of disability. I personally don't feel the need to have the obvious about my child's disability pointed out, or to be coached through the journey.

I feel disempowered by judgments, assumptions about my needs and 'well-intentioned' advice. As a parent, I do need services, and I do hear professional advice but most importantly, I need: -· unconditional support· to be heard· my knowledge valued· my opinions respected· trust that I have weighed the possibilities and· my feelings, actions and decisions validated and accepted!

Now, as a professional working with families who have children with disabilities I realise I don't know. Those who are emotionally involved know. They know their child, their needs and how services can best meet those needs. Services need to be clear about what they can provide, but ideally, also be brave enough to ask the question "Is our service meeting your needs?". Emotional involvement is not only a good thing, it is essential for insight, knowledge, development of services and management of the professionals that come in and out of our lives along the journey.

Heather Kirkhope
NoticeBoard
July 2001