Thankfully – when my two were born – everything was OK. I certainly spent a great deal of time when I was pregnant worrying whether that would be the case – and happily for me it was. But it’s not always the case – and that devastating moment when a new parent is told there is a problem – changes your life forever.
For the rest of your life – depending on the degree of that special need – parents will become the ultimate experts in whatever the disability or need their child has. They will take on a level of care above and beyond what other parents can even imagine. And they will almost certainly spend a lifetime fighting for their child (and later adult child) to get what they need from the State.
I cannot tell you how many times I have listened and literally wept to hear the awesome battles that parents have fought had to get what is rightfully their child’s due in our welfare state. It shouldn’t be that hard at every stage – whether it’s a new wheel chair, respite, occupational or speech therapy, transport to a day centre, a place in a suitable school for that child’s particular need – even to get statemented in the first place – but it almost always is that hard.
So I went to visit Celia – and the playgroup she has set up for disabled children and their parents at St James’s Church in Muswell Hill. It’s called The Challenge Group. Celia wanted me to come there because as she put it ‘I would love them to see your face and realise that they could have a voice. Many feel marginalised and are struggling in a way that is hard to imagine. Two of the mothers have two children with disabilities and life is relentless. I realise there are no quick fixes, but feeling your are heard is powerful’.
Celia has taken on this voluntary mission as a Christian – but her life experience as a child psychotherapist and her work at the medical foundation for victims of torture have clearly pulled her towards the vulnerable in society, fortunately for us.
So – I spent a couple of hours talking to each of the mothers who wanted to raise an issue with me and will take forward all of those cases. Celia is right – there are no quick fixes – but there is much that needs to be done to make sure that these children, whose needs are so profound, have their needs met, red tape cut through, barriers and obstructions removed and so on. It’s not so much that I heard their voices – it’s more that the real experts in what is needed and what is wrong with out system gave me of their time and their expertise – to inform me, rather than the other way around.
There are good people there volunteering their skills to support these children and their tired, emotionally and physically worn out parents. Not only do the babies and children have a safe place to meet and play – but there is massage on offer, tea and cake, company, advice and of course – others in the same situation. As one mother put it to me who has an autistic child there – it is so great when they are there because when her son does something ‘odd’ no one pays any attention whereas when they are out in public – people turn and stare and comment. Of course – she is happy to go out in public too – but has to kind of steel herself for those looks and comments.
A big thank you to Celia for inviting me in – and a to everyone who volunteers there. I have no doubt what a difference this few hours makes to each and every parent (and child) I met there.
Lynne Featherstone 