I handed in my notice last week, and take ownership of my official Full Time Carer badge in three weeks time. In the meantime, I am doing exactly the same amount of “caring”, whilst shoehorning a job into any gaps in my carer’s schedule, as I have been for quite some time.
I can’t be any more specific than “for quite some time”, because I am still trying to get my head around what now makes me a carer as opposed to any other resident parent, as they are carers too, surely? In fact, I have spent many a moment chewing at this riddle over the last few weeks, as one of my many misgivings about giving up work is whether as Leo’s Mum I should just bloody get on with it all and carry on keeping all those balls in the air, and not rely on the state for support doing what, as some kind of caped super-mum, I should be able to manage anyway.
For my own sanity, I need to keep reminding myself that it is okay to give up work to care for Leo.
I care for my neurotypical child as well as my neurodiverse child. She may last more than a day without me around, but I am pretty sure Olive wouldn’t manage a day without getting involved in some serious childhood mishaps and accidental starvation without a carer in her life at the age of four.
So when, exactly, did I cross the line and stop being just a mother and become a carer?
The amount of wordspace on the internet dedicated to the struggles of the average working parent is no less than immense. Leo has always been Leo, and I have dedicated a large percentage of my life to caring for him since the moment he popped out, both before and after he joined the ranks of a child with special needs – but it would seem that in order to start identifying as a carer I now need to frame my natural maternal actions towards him in a different light.
I read somewhere recently that 1 in 3 carers have to give up their jobs because of their caring responsibilities. Working, and working well, once I had children, was always a massive challenge, but once the system got involved with Leo, and his anxiety levels started bubbling over, it became a herculean task. The paediatrician appointments, the occupational therapy appointments, the CAMHS appointments, the parenting course I had to attend (in work hours) before CAMHS would even grant Leo a face-to-face appointment, the meetings with the SENCO, the school nurse appointments, the keeping of the daily diary of Leo’s behaviour to prove his particular flavours of everyday differences and challenges, the phone calls chasing the various professionals involved in Leo’s care, the mounting piles of paperwork to sort, the books and websites to read to educate myself about autistic spectrum conditions, at some point started to feel like a full time job.
Then of course, the hours settling Leo to bed, the early mornings, the constant negotiating needed to get a demand avoidant seven year old to do anything. The mornings it takes an extra hour to get him into the car, out of the car and through the school gates, the phone calls from Leo asking me to pick him up early from after school club as he just isn’t coping, the soiling and subsequent piles of washing, the mental and physical exhaustion (for both of us) after a meltdown. These have not so much started to feel like a full time job as a new way of life.
That is why there is something called a Parent Carer. According to Carers UK only 8% of self-identified carers are caring for someone under 18 ², and I bet most of the 8% are their parents, but we definitely exist. We are doing more than other parents, but if the rest of you are anything like me, you suffer a lot of guilt for thinking of yourself as a carer who deserves privileges (or carers allowance) for doing it.
A very unscientific straw poll of members of a parent’s support group I belong to shows that a fair amount of parent carers don’t work or are thinking of stopping work and most are okay with this. I have had the feeling for a long time now that I have been doing it all, but not doing as good a job of any of it as I should be. The children begin to feel like an afterthought; mini-problems that need to be solved or shipped elsewhere so I can get other things done. The job not enjoyed any more as I know deep down I am not doing it as well as I can. Something has to give, and as I can’t give up the kids, or kick myself and my health to the kerb, it has to be my job.
It is time to stop beating myself up, to shed the belief system that I am a good, worthy person because I work for money, and embrace being not just a parent, but a parent carer. I am still not sure when the balance tipped from being a run-of-the-mill harassed single parent to being a self identified carer, but I am definitely there, and it is definitely okay and valid to view myself as one.
¹ Google.co.uk dictionary definition. ² Carers UK Policy Briefing October 2015 – facts about Carers