Being a Mum and a Carer

I’m quite certain that in the moment when you find out that you’re going to be a mother, you fully acknowledge that nothing is ever going to be the same. When I discovered I was pregnant just over ten years ago, I started to plan. Planning for this little life that was about to unfold before me. Blank were the pages like an unwritten story book. Oh the possibilities! I so naively plotted a path that involved my child being completely healthy and neurotypical. Why wouldn’t I? But of course, that’s not the way it turned out. Monday 8th June until Sunday 14th June 2020 is Carers Week here in the UK. So what exactly does it mean to be a Mum and a Carer?

24 Hour Care

If you’re new here, my son Charlie was diagnosed with autism when he was four years old. So not only am I his mum, I’m also his full time carer. “What’s the difference?” you may ask. Perhaps when Charlie was a baby/toddler, I may have answered that there wasn’t much difference. All mums are pretty tired aren’t they? But as the years trickle by and the delay in Charlie’s development becomes more obvious, it’s hard to know where to begin with just how hard this is. Firstly, Charlie has always been home schooled. No nursery, no preschool, no playgroups etc. He did have a very short spell with a wonderful child minder when he was around three years old; but his separation anxiety has always been a huge stumbling block in terms of obtaining outside care. So right away, the first difference is just how much time Charlie has actually spent with me/spends with me. And I don’t mean for that to sound like I’m complaining, I’m most certainly not. But it’s important for comparison reasons because the care is 24 hour care and it is, for the most part, continuous. Charlie also needs more help with things that a child who doesn’t have autism needs. He may be nine now, but he isn’t fully independent at the moment. I mean, he can go and get whatever food he wants out of the cupboard, no problem. And if you hide something you can be certain that he will find it. But he needs assistance in daily personal care – cleaning himself, brushing his teeth, getting dressed etc. I obviously do not mind helping him with whatever he needs, whenever and forever. But what I’m trying to say is that usually, as children grow, the amount parents need to physically do for them decreases. It isn’t always that way when you’re a mum and a carer.

The Danger

Then there is the danger element. I’m not for one minute trying to imply that all parents aren’t constantly worrying about their kids. Literally, from that first instant when you hold them in your arms as a newborn, you spend every single day worrying. But when you’re a Mum and a carer……. it sits a little differently. Let’s take the “Child gets lost” scenario as an example. All children are taught, as soon as they are able to understand, that if they get separated from their parents they find an adult who can help. They tell them their name, where they live and so on. If Charlie gets lost, he wouldn’t say a word. If somebody were to ask him his name, he wouldn’t answer. If he were kidnapped, he wouldn’t know to shout for help. If he were alone, he wouldn’t necessarily know how to keep himself safe. Can you imagine the amount of catastrophizing that my brain has done with this? The level of fear is incomprehensible, I assure you. The only solution – vigilance, constant vigilance. I’m on red alert every single day. And that shit is tiring! But this isn’t just incase he gets lost. This is always. As neurotypical children get older, you trust that they can make good decisions about which situations are safe and which are not. When you send them off to school or to play with their friends you are pretty secure that they’re going to be just fine. You can relax. Charlie needs to be supervised every hour that he is awake. He can’t always judge what is dangerous (like he scales walls and treehouse roofs and thinks nothing of it) so he always needs somebody to be there. If there’s a body of water, he wants to get in. He has no concept of the water being too deep or too cold. He doesn’t understand that cars on busy roads could hurt him. If Charlie is awake at 3:30am, I’m awake at 3:30am. I can’t just say “sit in your room and watch your iPad” or “just stay in here and play with your marble run” because there’s no guarantee that he will follow those instructions. And if we are up all night, there’s no respite. There’s no cavalry coming to save the day. I mean sometimes Nick (Charlie’s Dad) might take him out for a walk so I can rest, but that’s all folks. I’m about 9 years worth of exhausted. Did I mention that being a carer is a 24 hour job? This is not to say that people haven’t offered to help. So many of my family members and friends have volunteered to watch Charlie. The issue is that Charlie isn’t able to be cared for by just anyone, even if they are the most willing and loving people in the world.

The Future

Finally, there’s the future. I spend a considerable amount of my time trying to work out how I can live to be 100 years old. How can I ensure that I outlive this beautiful, innocent boy of mine? I’m pretty sure parents aren’t supposed to say that, right? Parents ordinarily expect and want to die long before their kids. But who is going to love Charlie like I do when I’m not here? Who is going to understand him? Speak for him? Who can even explain to him where his Mama is when I pass away? Will he think I’ve just abandoned him? Will he wonder where I am for the rest of his life? Every single health scare I have. Every test, every Doctor’s appointment – there isn’t even ever a glimmer of fear for me or if I’m ok. The first thought will always be “what will happen to Charlie if I die because of this?” So as you can imagine, Coronavirus has hit us like a tonne of bricks. Managing everything in itself is tricky enough. When you throw a deadly virus in to the mix – well I’m sure you can guess that it’s been somewhat anxiety inducing. And I get that in general, I’m driving myself mad with worry about a future that doesn’t even exist yet. I honestly hope that by the time I’m about to pop my clogs, Charlie will be living independently and happily. That’s why we work so hard now, to try and give him the best chance of a “normal” life. But it’s there. That thought is always there, in the back of my mind. It’s the hardest thing about being a Mum and a carer by far. It’s the most heartbreaking thing about all of this.

I hope this post doesn’t make you feel sorry for me. That’s not my intention at all. I love my son more than anything and our journey may be far from normal, but it’s ours. Charlie being autistic has taught me so many things about myself and about life. I honestly cherish every single moment with him. He’s the sweetest and most special soul and even though this isn’t what I imagined Motherhood would be, I wouldn’t change him or the bond that we have. So please know, being a Mum and a carer isn’t easy. We don’t always show that we’re struggling because this has been our reality for as long as we can remember. And we’re tough. We have no other option than to be that way. But it can be a lonely place. So even if you aren’t sure whether you can help or how to exactly – check in with us. All love and understanding is appreciated more than you’ll ever know.

To every single carer out there – I see you and I stand with you.

Beth Anne xoxo