The other day a friend knocked on my door. She had a present for kiddo and being a fellow SEND mum and parent to an autistic child she’s one of those people who just “gets it”. She asked when I was free for coffee and we started to swap dates. “What days do you work?” I asked. She replied, unbeknown to me, that she was no longer able to work because, “enough is enough”. We swapped knowing sympathetic glances, because I knew exactly what she meant.

Being a woman in our society automatically places a certain level of expectation upon your shoulders. You will have a career until a certain point, have children and take maternity leave and then either become a doting house wife (absolutely nothing wrong with that) or return to part time/full time work whilst raising your family. Your partner will continue to work full time and when the evening comes you will all muddle through bedtime sharing the workload (I hope) and eventually crash out in front of the TV for what seems like 30 seconds (but is actually 3 hours) before you go to bed and repeat it all again tomorrow. Either way you fall into the category of “working mum” or “stay at home mum”.

I however, and my friend mentioned above, are neither. We are a whole new category altogether. We are parent carers. Here’s what our category looks like:

We had a full time job, fell pregnant and took maternity leave. Maternity leave was either the most stressful time we had experienced because our child had medical difficulties and our working lives were halted there, or we returned to work one way or another. Very quickly we realised that having a job and being a parent carer did not mix for numerous reasons. It clashed with endless appointments, your child being excluded from school, your child not being able to attend mainstream childcare or pre school and the small fact that your child never sleeps. Ever. Falling asleep at the wheel was a very real possibility.

Eventually after using every days annual leave you had for appointments, phoning in sick on numerous occasions because your body couldn’t function under the exhaustion or realising that your child needed your 24 hours a day in order to make sense of this crazy world, you resigned. Or in my case, you closed your business. And you gave up work for the foreseeable future. Only you didn’t did you, because this is when the real work began.

Branded either a “lazy stay at home mum” or a “benefits scrounger” you appear to have it all from the outside. On the inside, you now have the hardest job of all which comprises of the following:

1. Learning about your child’s disability inside out, because knowledge is power.

2. Managing a diary which would put your work schedule to shame from the job you gave up.

3. Realising your house hasn’t been cleaned since before maternity leave, cleaning it, and realising there’s just no way you can keep it up regularly because you’re so exhausted you have to sleep all day

4. Attend never ending appointments every week.

5. Sort out your child’s medication, every week.

6. Fight for your child’s education, every day.

7. Try and help your child make sense of this world, every day.

8. Do the weekly shop at at least 3 supermarkets because your local branch doesn’t stock the brand your child eats, you travel miles away to get the brand they actually eat and top it off with a discount supermarket shop to try and keep costs down because, remember, you no longer work anymore.

9. Attempt some self care usually in the form of a workout so that you can keep your mental health in check and not fall apart and let your whole family down.

10. Do the shopping and the cooking where you can because your partner now works doubly hard to support the family financially on his own and you’re worried the pressure will make him crack (if he hasn’t already).

11. Be a loving and attentive wife on top of all of the above. I’ll just leave this one here so it can get shoved to the bottom of the pile, even though you really don’t want it to.

But when people ask you what you do for a living what do you say? “I’m a stay at home mum” or a “full time carer”. Truth is, very few people understand what that actually entails. They have no idea about the exhaustion, the balancing act, the determination, the organisation, the drive and the motivation. They simply see a stay at home mum. And do you know what drives me really up the wall? When your life calms down and you finally have the time to return to your career, your CV will simply look like you decided to have a bit of time off. Whereas actually, your skills could give the CEO of a multi national organisation a run for their money.

And that people, is why many parent carers “choose” not to work.

To those of you out there still working or running your own business whilst still doing all the above, you are super human and I have never ending respect for you.

Thanks for reading,

Danielle