Grace for Rett » Grace's Life with Rett Syndrome

I’m no longer a mother – Finding humour in Carer’s Allowance

I’m pretty sure it doesn’t work this way in America (I wouldn’t know) but in the UK, you get a pretty penny for having a defective kid. Grace gets ‘DLA’ (Disability Living Allowance) and it’s a darn good thing she doesn’t actually have to LIVE on it because it’s a pittance for someone who needs to live on it. And then there’s the extra tax credits monthly etc etc but the one that is the funniest to me is that I get something called ‘Carer’s Allowance’. You see, when the government finds that you’re living with the burden of an atypical child, you’re no longer a ‘parent’ you’re now known as a ‘carer’. And when you have to care for someone special, they pay you for it.

This is such a weird situation, don’t’chya think? I mean…didn’t I go into parenting knowing that I have no idea what type of children God will bless me with? Why does having a child who needs extra care (isn’t that what being a parent is all about?) deserve a salary and a special name?

Don’t know if I ever mentioned this, but when we visited the geneticist for the first time, she actually suggested that if I ever get pregnant again, I have a test to see if the baby has Rett (the chances of that are NONE by the way) so I can ‘terminate’ it. She said this to me as I was holding my sweet baby girl in my arms. I just put my hand out, stopping her mid-sentence, and laughed out of awkward shock. I didn’t go on my usual “Yeah, that’s how Hitler felt too” monologue. But I’m pretty sure it’s this “gee sorry we didn’t catch that one soon enough – here’s some money” mindset that has changed me from a ‘mother’ into a ‘carer’.

Grace rocks. Heck, we should probably just adopt another one since we know what we’re doing now!

Erika - August 9, 2010 - 1:39 pm

You’re awesome Elizabeth! We feel the exact same way with Asher and have even thought of adopting another DiGeorge kid because we too have already had the crash course training for it. It’s amazing what the simple act of prayer can do in these little one’s lives, isn’t it? Why wouldn’t be bring in another child who could benefit from it….and who may have lived a life completely without it. The power of prayer and God’s Love is evident in Grace’s life! Keep up the good work “Momma” 😉

Catriona - August 9, 2010 - 2:38 pm

I know what you mean – it is bizarre, being designated ‘carer’ instead of ‘parent’, especially when the child in question is still so little. But being the parent of a severely disabled child is very different to ‘typical’ parenting, as you and I know only too well. One of the ways it differs is how much more challenging it is for parents of ‘complicated’ children to earn a living. That’s why carers’ allowance is so strange: it’s such a small amount that no-one could consider it a replacement for a salary that you can no longer earn because of the sheer number of ways that your child needs you, and because of the impact of disability on the family unit.

So I think it’s a bit of a fudge: recognition that you may need financial help, but not enough to actually live on! We always used to joke, blackly, that DLA, which isn’t means-tested, is society’s compensation for having a sub-standard child. I hadn’t thought of the termination angle on it before. As disabled kids get older, it seems to me that the state is getting a pretty good deal out of paying a pittance to ‘parent carers’ – if we were to say we couldn’t cope, it would cost them far more.

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