It is one of the paradoxes of parenthood. That we live for our children. The promise of their infancy, the turmoil of their teens and the growing absence of their adulthood. And though we might miss them there is something wonderfully reassuring in the emergence of independence. At least that is how it should be, because it’s different for us.
If you are the parent of a person or a child with a learning disability, or autism or both. That progression from infancy to adulthood is different. Infancy or soon after is shaped by the impact of a diagnosis. The teenage years, yep there is turmoil, often on an immense scale. And as for the emergence of independence. Where do you start?
And then lurking somewhere in the back of our minds and in the worst of our dreams. Is the thought of what would happen in the event of our deaths. This came up in a tweet today in response to BBC Breakfast week long coverage of SEN and Disability. When a father reported having said to a social worker that if he died they might as well bury his daughter with him.
I get the horror of it. The thought that we will one day die and our sons and daughters with learning disabilities and autism will be left alone in the world. Utterly dependent upon a system that seems to excel at nothing, but the promise of much and the delivery of less.
I get the dread. That ever-present sense of something terrible, our death and their vulnerability and I get why so many of us find it hard to imagine a life for our sons and daughters without us. But we must.
Because it is not ok to imagine that they wouldn’t survive or even thrive without us. It is not ok to imagine – even for a moment – that our death would mean that they too would be better off dead. Firstly, because no parent has the right to even think that thought; and secondly because our adult child’s dependence on us is politically constructed, and so too is our sense that they cannot thrive without us.
According to a 2015 report from Carers UK unpaid carers contribute a staggering £132 billion a year to the UK economy. I don’t know what percentage of that figure is contributed by the parents of people with learning disabilities and autism, but I would guess that we care for much longer periods of time than most. And as such we probably represent the single most significant resource within the care economy for people with learning disabilities and autism.
But are we valued? You’ll hear lots of rhetoric about the amazing contribution of unpaid carers to our society, but no we aren’t. Despite all the talk of supporting carers, the parents of people with learning disabilities and autism are an expendable resource and we are the resource that gets spent first. And the longer we last the more they save. And it’s because of this, that we have this sense of our sons and daughters overwhelming dependence on us. Because too often while we’re doing our job – too many don’t bother doing theirs.
The truth of it is, that young adults with learning disabilities and/or autism need to grow away from their parent’s in the same way that every young adult does. Their independence may take longer to nurture and it will take support and resources to achieve. But they can thrive without us and they do. So, in those dark moments when you are tempted to imagine the worst, just remember, if everybody else does their job as well as you do yours they’ll be fine. The issue isn’t what happens when we are dead, it’s the work that people aren’t doing while we’re alive and that’s really not ok.