• educatingella

"But you are home all day. Why can't you prepare dinner then?"

No, it wasn't my Wife who said that to me. Thankfully, she expects nothing of me in terms of 'running the household' because she lives it too. She understands. It was actually a friend of mine who said it and it was quite a defining moment. You see, it was the moment, some years ago now, when I realised that my experience of Motherhood was more than me being a parent. It was the moment I realised I was a Parent Carer. And it was the moment I realised that I was unseen, and misunderstood.

This week is Carers Week 2022. A week created to recognise and celebrate the incredible work that Carers do. This blog is specifically about Parent Carers, or Family Carers, to be more inclusive. The theme of this year is 'making caring visible, valued and supported'. Three vital elements of the family carer identity which I rarely feel. And I know I'm not alone in that.

I've spoken to hundreds of family carers over the 5 years I've been a parent carer and one major factor which we seem to share is how we often fail to recognise ourselves as carers. All parents care for their children don't they? Of course. So how do you recognise the difference between a parent and a parent carer?

Ask yourself:

Does your child have additional needs: delays, neurodevelopmental diagnoses, mental health needs or physical disabilities.

Is your free time spent researching diagnoses and support, arranging appointments, filling in forms and emailing professionals?

Does your child's teacher keep pulling you aside to communicate challenges they are having with your child? Is your child needing adaptations and specialist input at school where you are finding yourself sending emails and attending meetings to ensure their needs are met? The ones in which you feel like 'that' parent. You can nod along if you wish, I know you get it.

Do you often feel like a PA, a doctor, a therapist, a physio, an OT, a speech and language therapist rolled into one?

Does your 6 year old require you to dress and undress them, help to feed them, help to walk, to communicate with others, to manage the impact of the environment, help to carry out any task, to play and to spend time? Of course, all children develop on their own timeline, but it gets to a point where all the other children are able to do these things while yours seems to require your support with everything.

Do they need therapies through the day, aids and adaptations to support independence and development? Do they need medication, support with behaviour and generally help and supervision above and beyond expected at this age?

If you answered yes to some of these, it is likely that you're a parent carer. At this point you may have considered, have already reduced your working hours or quit your job altogether because you can't keep on top of the care your child requires whilst holding down a job. It's time for a tricky reality check - this is your job now, only you don't get paid for it.

It may not be a paid job (though I should add here that those who are eligible for Carers Allowance receive a pitiful £278 a month) but it's certainly intensive, emotional and high pressured work with deadlines. We don't receive a salary, we don't get to switch off of an evening or a weekend and there is no annual leave. We don't have a manager for support and we fight the red tape daily without the backing of a union or colleagues.

We aren't visible, we aren't valued and we very often feel unsupported.

Over the years I've had some extremely ignorant and hurtful comments made by folks who I've turned to for emotional support. For example 'I'd love to just be home all day with my Daughter', 'since you're home all day, can't you do the housework then?' and the worst 'you're lucky you don't have to work, I'd love all day home with my child'. Ouch.

I guess the comments are representative of the misunderstandings we face as parent carers.

We're often believed to have all the time in the world because we 'don't work' and so when we talk to our friends and family about feeling overwhelmed with the load of life and parenting in general, with the added pressure of the extra work caring for our child in relation to their disabilities brings, we're often met with dismissive comments like so.

In reality, we aren't home sitting on the sofa relaxing while our child happily plays. We aren't chilling with a book or listening to a podcast. We can't just nip to do the weekly shop with our child in tow. We can't just whip out the hoover or go and tidy the bedroom. We can't make phone calls for those referrals or appointments and we can't just prep dinner in the kitchen. Because who's going to care for the child? Who is going to do their sensory diet, theraplay, speech therapy, physiotherapy? Who is going to supervise them from getting hurt through the impulsive behaviour and lack of danger awareness around the house...................? Quite.

If you happen to be reading this as a friend or family member of a parent carer, I invite you to consider the following words to acquire a deeper understanding of some of our thoughts as parent carers:

What would you prioritise?

- filling in a form to get financial support for your child or cooking dinner for yourself?

- completing a course to help your child or getting a bath as some self care?

- chasing up referrals for your child or reading a book to switch off from caring life?

- cooking lunch for the next day so that you all get to eat or watching TV to relax?

- preparing those new communication cards that will help your child at a new group tomorrow or going to sleep earlier?

- making notes for your child's appointment tomorrow or having a date night?

- filling in those 3 huge, detailed forms for an upcoming assessment or finally reply to a friend after 5 days?

- get everything ready in the evening for the next day to help your child manage daily tasks or cleaning the house?

If this isn't work, I'm not entirely sure I understand what is?

So it is time to start unlearning what we believe to be 'work'; that is, the idea of work being when we leave the children behind to go out and earn a living and it's time to start relearning. Our value isn't attached to the money we earn. We aren't less because the government fails to recognise that what we do as parent carers is work. Parent carers are doing incredible work and it's time for society to start showing up to recognise the importance of the work we do, to truly see us as carers and to value and support us.

And to the person who stated 'but you're home all day, why can't you prepare dinner then?'

I hope you get it now.

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