Being a parent carer

‘Parent carer’ is a term widely used in professional circles to describe a parent of a child with a disability. Many parent carers do identify as such, but not everyone.

Some people have not heard of the term, or believe that as a parent you care anyway, so see it all as part of ‘the job’. It is vital that we continue to recognise parent carers as having a vastly different, and normally far more difficult role, than parents of non-disabled children.

Being a parent carer is, certainly in my experience, an entire job in itself. Add that to the ‘typical’ role of ‘standard’ parenting and you’ve got an incredibly full plate. The physical load (the extra cooking, cleaning, appointments) and the mental load (the coordination of services), combine to create an enormous weight for anyone to carry.

Unlike most typical jobs, this role is charged with emotion and can give you soaring highs and crushing lows, often in the space of one day, or an hour. So it is vital then, that people around us, family, friends, public services and businesses, recognise this.

At present there is still much work to be done here.

Two examples spring to mind. Our local authority used to class parent carers as ‘carers’ and the local carers service was open to us. This offered subsidised counselling, a token wellbeing payment (which although small was significant for so many) and a raft of other support.

They also completed carers’ assessments. In the last few years this has been changed to exclude parent carers from the local carers offering. This has left me perplexed and cross, to put it mildly. The anger comes from the fact that it makes me feel unseen. Some people (I am guessing none of them parents of disabled children) have decided that parent carers do not qualify for this support.

A parent carer role is often for a lifetime, is 24/7 and involves more fighting and advocacy work than I could have imagined. This sort of exclusion leaves me thinking that they do not understand this, and see our role as just part of being a parent. Note to self – write to MP on this.

We visited a family attraction recently and wanted to bring my daughter’s carer with us.

My little girl requires 2:1 care so needs me plus another person on a day out. The attraction’s policy on carers admission fees was as follows: Students and carers: £2 discount. I could not believe what I was reading. Carers and students were lumped together as if they have the same requirements. I do not want a token discount for my daughter’s carer. I should not have to pay; she needs her there as much as she needs her disability buggy or epilepsy helmet. Another note to self – write to attraction.

These two examples show there is much to be done in educating the wider community on how the role of a parent carer is so different from that of a typical parent. As parent carers, we can all play our part in helping to get the word out there, but we shouldn’t have to of course. It’s another ‘to do’ on our infinite ‘lists’.

No one understands this like other parent carers, which is why communities such as this one, forums, charities and groups are so vital. I love it when I see another parent carer out in ‘the wild’ and we share a look or smile, knowing that someone else gets it. When you know, you know.