Calling for new carers

Before I had Alex I – somewhat naively it turned out – assumed that when letters were addressed to ‘the parent/ carer of…’ that you were either/ or.

Turns out… You can be both.

First and foremost I’m Alex’s parent, his mother.

I love him, we love him, we try to bring him up as best we can, just like any other parent of any child would.

But carer….that’s a way heavier burden.  That implies you have to get it right, all the time.

(And sometimes that’s more overt than at other times – the social worker who comes out every 6 weeks to my house for safe guarding… the note home in his school book: ‘we noticed a bruise on his leg’… Because my boy – my beautiful little boy – he’s classed as ‘vulnerable’ because he has disabilities).

We feed him, clothe him, try to find him the right equipment… make sure he’s comfortable, stimulated to keep on developing… advocate for him with anyone who will listen. We look after him and keep him safe – 24 hours a day.

Whilst his independence is definitely increasing, it’s incremental, and without us, he wouldn’t survive.  Every second he’s in our care we are with him – from getting him up in the morning, to eating, bathing, going outside, every nappy change (just stop – if you will – a nappy change on a 7 year old boy) all the way through to pyjamas and bed time.

Sometimes that’s a huge weight.

Looking after a 7 year old boy with severe learning difficulties is considerably harder than looking after one who is neuro-typical.

Who knew?

This is where other carers in his life are so important.  They lighten our load – make us better parents and enrich his life.  When Alex goes to respite my head empties.  The whole house slows down.  Meal times are more relaxed.

We can do all those things that most other people do without thinking – go out for a meal, watch a movie, see a show.  Walk up steps.  Sit and watch the view.  Read a paper.

All without worrying if he’s about to physically or vocally express his impatience, or disgust, with the choice of activity.

Alex is a gorgeous little boy.  He’s incredibly sunny.  Broadly very easy going.  But he likes to be on the move – or have the freedom to move – pretty much all the time.  And you can see that that’s pretty incompatible with a lot of the activities I just listed… So time apart is critical.

For all of us.

We get to rest up and do the things that are otherwise out of reach and Alex gets a change of scenery, a chance to be with new people, who are focussed on him and his needs… just like any other sociable little boy.

This week is Carers Week.

I think that encompasses both me and, potentially, you.

If you’ve ever thought of doing respite care for a child, please contact your local council.  Anything is an option, from a couple of hours after school, to an evening meal, to an overnight stay.  Our kids… they aren’t scary, they aren’t frightening, they’re just not what we’ve decided to deem ‘typical’.

They will enrich your lives.

And you will know the good you are doing for both them and their families.  Thank you.

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Mummy, show them the hat, the hat *always* works!!

Caring is sharing… Is caring

When letters come home from school that need to be signed by Alex’s parent/ carer I could circle both.

I am his parent.

I am his carer.

Sometimes it’s difficult to know where one stops and the other begins as they do – quite seamlessly – bleed into one big role.

This is how the Carer’s Trust defines carer:

A carer is anyone who cares, unpaid, for a friend or family member who due to illness, disability, a mental health problem or an addiction cannot cope without their support.

That’s Alex.
And that’s me.

But that’s also his father, his sister, the rest of our family, our friends… we all keep more of an eye out for him than we would do for a neuro-typical boy of 5.

This week is Carer’s Week, a week to highlight the millions of carers in this country who – unpaid, or, frankly as near as dammit unpaid – look after those members of their family who can’t look after themselves.

You’ll all know the saying that it takes a village to raise a child… it takes a town, a city, to raise a child with additional needs.

I do it willingly. He’s my son and I love him unconditionally. I love him fiercely in a ‘to the ends of the world’ kind of way. We seem joined by the smallest piece of elastic. This love can be all encompassing just because he cannot look after himself. Cannot speak up for himself.

Because I am his parent, his carer and his protector.

But I couldn’t do it without so many people to buoy us up. To share the caring load. Because by sharing it, it makes it possible for all of us to care for him. It’s too much for any one person to do by themselves. I’ve tried that and I nearly broke in two.

So I want to use carer’s week to say thank you to his other carers.

To say thank you to Alex’s incredible school who look after him and nurture him and guide him to be as independent as he can, to enable him to experience new activities (tree climbing – really??), new people, whilst always keeping him safe.

To say thank you to the holiday playschemes who are all run by amazing people. Who recognise that our children – almost more than most – cannot stay in during the whole holiday. That they need to get out of the house, be surrounded by their peers, be supported in fun activities. Who give up their holidays to have what must be rewarding but exhausting days with our children.

To say thank you to Alex’s respite carers (and all those of you who have gone before). Who care for him and are genuinely fond of him. Who tell me how well he’s doing, how much he’s developing. Who allow us to recharge our lives for a couple of nights knowing he is safe.

And to everyone who has let me talk to them, just unload a little, thank you too. Because sometimes the sheer admin of his care – both on a day to day Alex level and navigating the minefield of The System – makes me want to cry.

To all of you – for letting me feel safe to share Alex with you – thank you.

By sharing him – sharing his care – we are still here, intact. Parenting and caring for both of them.


You can learn more about Carer’s Week here: