As a special needs parent you become an army commander fighting battles on many fronts at the same time. But you usually have to do this with no troops, no weapons, and little understanding of opposition tactics. Because the State and the organisations that are supposed to provide services often seem to be the enemy, withholding information, refusing to engage, and denying the help that you believe is needed. So you may be ignored, patronised, discussed behind your back, punished and accused. And your children may suffer as a result.
About ten percent cent of the population have some kind of disability or special need so you would think that such a large army of people would have clout, that politicians would care about the issues involved and would listen. Far too often they don’t.
But sometimes you do find allies.
And you know all those people who knock social media? Well they mostly don’t appreciate the opportunities it offers. Like the chance to help your family and explain the issues that affect your children. I got such a chance on Thursday, when myself and my disabled daughter went to meet Senator John Dolan in Leinster House (the location of the parliament here in Ireland). Senator Dolan is also the CEO of the Disability Federation of Ireland.
The meeting was about Changing Places, why children and adults like my daughter need them for toileting and/or changing, how providing them would fit in with current disability policy and also provide business benefits, as well as ways to encourage organisations to install them.
The Senator was very receptive, listened carefully and was lovely to my daughter (who wasn’t particularly impressed with being at a boring meeting!).
I also raised some of my concerns about how current policy seems to be ignoring the needs of those with severe and profound disabilities. And he listened once again. So I may have found another ally in my fight to make sure that my daughter – and others – have the best life possible.
And I can’t think of a better reason to be cheerful for this week.