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.
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: