Before Mikaere I was a UX Designer. I worked as a contractor and I earned a pretty penny (the going rate for a senior UX contractor in London is about £400 – £550 a day). I had a healthy income, a healthy savings account and a fab disposable income. I wanted for nothing.
But because Mikaere has NKH and requires so much care, and our time is precious, there is no way I could leave him with someone else. So I said goodbye to my job and the pay check that came with it and settled in to being a special needs Mum.
Here’s the thing though – the carer’s benefit is £62.70 a week. If was being facetious, I’d say it was a daily rate of £12.54, if you assume that it’s for a working week. It’s not, clearly. By comparison, a carer (not even a nurse, just a carer) is paid about £8.50 an hour. Across a ten hour shift, that’s a day rate of £85.
I feel like the government doesn’t appreciate the work, time and effort special needs carers take on. I don’t think they appreciate the cost that comes with special needs. We’ve had a significant drop in household income, but we’re still expected to pay for all the special needs extras. Supplements, syringes, helmets, extra therapy sessions, compression suits, hospital parking, supplements. The list of special needs requirements is long.
We’re only just beginning to look at more equipment that may or may not be covered on the NHS. Supportive car seating, wheelchairs. And I know the world of hoists, fancy wet room equipment, safe sleeping systems and wheelchair accessible vehicles are coming.
It’s frustrating to know all of this is in our future and not know how we’re going to pay for it all. On top of that, I wonder how special needs single parents manage. Because bluntly, without Sam I couldn’t afford to care for Mikaere.
I know this is a bit of a whinge post, but I miss working. I miss earning an income and being a financially independent earner. I know giving up my job to care for Mikaere was the best decision for our little family (without a doubt) and I’d choose it again in a heartbeat, but that doesn’t mean I don’t miss working, because I do. I miss earning a pretty wage, and the financial ease that bought. I miss being treated like a competent adult (rather than “just” a mum who couldn’t possibly know more about my child’s condition than a doctor who keeps confusing it with Nonketotic Hyperglycaemia, a disorder about blood sugars).
I miss using my brain. Working on things outside the mundane of meds and sterilising and waiting on hold and arguing with the people who book medical appointments. Discussing emergency end of life care plans (read: if Mikaere has an ‘acute event’ – at which point do we stop providing care and let him go? Because we did that today). I’m over carefully negotiating his care with his team. (Sidenote: how many neurotypical parents have to negotiate what’s best for their children with people outside their family on a regular basis??).
I miss working and I’m jealous of neurotypical parents who get to choose what works best for them, working or not working.
And then I think about what’s best for Mikaere, and it’s me. I’m best for Mikaere. So I brush off the working angst, and endeavour to work more on a side hustle or two, and settle in to special needs parenting.
But it irks. Right now it irks that the conservative government doesn’t see the value in supporting families like ours to a point where we could live comfortably, without fear, without having to pick and choose which therapies we can afford. We’re expected to drop a wage and pick up additional the costs of special needs parenting. I’m frustrated benefits are being cut, the NHS is underfunded and social support isn’t a strong suit of the Tories.
I’m frustrated that apparently carers like me are meant to survive on £12.54 a day. I don’t expect to get paid to parent my kid, but it when I have to give up my job, do more than a typical carer does and cover the increased costs of special needs – that irks. £12.54 a day. £62.70 a week. £3260.40 a year. Less the National living wage. It’s ridiculous.