So when did you become a carer?

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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?

moses basketWas 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.

naomieegWas 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.

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I walked beside you

I recently had the privilege of going on a walk with my son’s school. He attends a school for children with severe and complex needs. There was nearly as many adults on the walk as there were children. There were wheelchairs, crutches, walkers and a high percentage of children who have no speech. It was truly one of the most beautiful walks I have had the honour of being on.
I was holding my own son’s hand and here is how our walk went:

I walked beside you on the school trip one day
Holding your hand all of the way
You don’t see danger in the way that I do
You don’t know the way but trust that I do
I see the hedges, you pull the thorns
I watch for traffic, you laugh at horns.
I point out the library, you yearn for the doors
You pull to get in there and drop to all fours
The walk has now halted, a child is down
The teacher shows you photos and we keep walking through town

I walked beside you on the school trip one day
You held onto my hand for all of the way
You don’t see life in the way that I do
The innocence of childhood embodied in you
I see the challenges, you just see play
I worry for the future, you just live for the day
I point out the park, you just see the stream
As I pull you away you just let out a scream
Teachers come running with photos in hand
They knew this might happen, so they had it all planned

I walked beside you on the school trip one day
You taught me so much as we went on our way
Your mind is years younger than the body it uses
You keep falling over, legs covered in bruises
But you keep getting up and you keep going on
You may not have words but you sing your own song
You laugh at the birds and you flap at a fence
The joy that these bring you is pure and immense
I need more of your joy, I need more of your zest
We could walk so much further, but today let us rest.

I walked beside you like I always do
You needing me and me needing you.

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