I bumped into someone the other day who I hadn’t seen for over a year. We exchanged pleasantries and briefly caught up. It’s hardly high up on the social etiquette rules to say ‘oh yes my kids are almost 6 but both disabled’, so I dodged the issue talking about the fact they are now at school (I didn’t even say where as that would take some explaining as to why one travels so far while the other attends the local primary), we are all well and how lovely it was to see her again after so long.
And then the inevitable question:
‘So what are you doing these days?’
‘Oh, I’m a carer.’
‘So when did you become a carer?’
What a good question!
When did I suddenly go from being ‘just’ a parent to my children to becoming their carers too?
Was it the day my children were born shortly after I first gave up full time work to start my maternity leave?
I was ‘just’ a parent then. New and excited and enjoying the beauty of holding two new lives.
Was it when they were around 9 months old and I made the choice to not return to work after my maternity leave?
I was ‘just’ another stay at home mum then.
Was it the day I first realised something was ‘wrong’ when I called my health visitor and they were only 18 months?
I was ‘just’ a worried mother then.
Was it when they were 21 months and the paediatrician first mentioned autism?
I was just an anxious, confused and upset mum then, frantically googling ‘autism’ hoping and praying there was some mistake. But I still didn’t see myself as a carer.
Was it when my children had their third birthday and still one of them wasn’t walking?
I may have been edging more towards a carer but everyone, including myself, still viewed me as a parent.
Was it when my children, first one and then the other seven months later, began receiving disability benefits?
Possibly. I guess signing as their ‘representatives’ should have made me realise. Over time I was doing more and more of a caring role but don’t all parents ‘care’ for their children? I was only doing what all parents should.
Was it when my children started having more hospital appointments than birthday party invites?
All kids need to see the doctor at some time, right? I was ‘just’ a busier than normal mum.
In truth I don’t know when it actually happened. I never had a starting date, I certainly have no finish date and it wasn’t something I ever planned on becoming. But the reality is both my children need twenty four hour care, well above what other children their age require. I am more than a parent:
I am a fellow professional at every meeting, knowing more about their needs than any of the others combined.
I am their voice when they have no voice. I will fight for them way beyond what anyone else ever will.
I am their advocate. I will take their side against all odds and push for what is in their best interest.
I am their driver, lifting them out and in transport, pushing them in wheelchairs, changing their nappies, and ensuring their health needs are met.
I am their nurse making sure daily medications are taken on time and reordered as needed.
I am their speech therapist, occupational therapist, mentor, and encourager. I spend more time doing exercises from therapists than I do doing homework from school with them.
I am their researcher ensuring new guidelines on their conditions are adhered to and they receive the care they should.
I am their educator when school has finished but they still struggle with the concepts and learning that others grasped easily.
I am their administrators filling in forms on their behalf and keeping their records up-to-date.
Over time my job evolved. I have a full-time job that brings me huge rewards but very little pay. I have gained patience, empathy, a sense of humour and the ability to function on very little sleep. I have become well versed on my ‘clients’ needs and wants. I am highly educated on how their disabilities and conditions affect them personally.
To many I am still just seen as a parent, a stay at home mum, or even an unemployed person.
But I am proud to be a carer.
When did I become a carer? When I realised my children needed more of me than I thought I would need to give. When I realised their care needs were overtaking my life as well as theirs. When there was no longer time to think about a job let alone apply for one or have one. When the meetings and appointments and paperwork became my life.
And I was finally ok about that.