Over the past couple of weeks there have been a number of articles and a t.v programme about parenting children with special needs. In the main I have found these articles to be deeply depressing and unbalanced. One such article appeared in the Daily Mail and can be read on-line at http://www.dailymail.co.uk/femail/article-1227080/Do-I-love-disabled-daughter-With-heart-Will-relief-dies-Without-question.html.
It was written by a lady who has devoted 18 years of her life in caring for her disabled daughter. She has now decided that they will only provide pallitative care for the daughter, which means no more intevention. Reading this, horrified me, but then I asked myself was I just horrified because this woman had bravely spoken about things that you bury deep inside of yourself. Was she right to suggest that because her daughter was profoundly disabled that she had no quality of life? Yes it would be a release for her when her daughter dies and undoubtedly she loves her dearly, but, how can we judge a quality of life? Will I be able to say Zack has a good quality of life if he depends on me for all of his?
I am only at the beginning of my journey but I know that even though Zack might never, walk or talk or do things you or I do, his quality of life for him is good. He is loved. He is cared for. He is wanted. He is content. Isn't that enough?
I also watched a TV programme on BBC 1 last week called When a Mother's love is not enough. Rosa Monkton, herself a mother of two daughters, one with Down Syndrome, met with parents of disabled children and discovered or rather voiced her utter despair at the lack of support given to these families. The programme showed families and single parents in dire circumstances in which life is terribly difficult, consuming and full of hardship. After watching this programme I felt that anyone who has no experience of raising a child with special needs would only pity us more. I found the programme to be very unbalanced. It gave nothing of the positive side of loving a chid with a disability. It made us out to be parents who are so desparing and so desperate that we could take our own lives and the lives of our children at any given minute.
I do believe that there is still a lot of work to be done in order to change the system in order to make it easier for parents to access support and help. But come on, let's have some programmes and articles showing the positive side of our lives. Show the families that go through both the ups and the downs, show all of the journey not just the walk through the dark tunnel.
And so here endeth the rant.
Zack is much better but is still very naughty and staying up until 11pm. Surely this can't carry on.