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