A few months ago I found myself sat in a busy supermarket carpark whilst the little one snoozed. I didn’t want to wake him and enjoyed the peace for 15 minutes (It comes to something when 15 minutes in a carpark is considered a break). I glanced to the car next to me and an elderly lady waved frantically at me as if trying to get my attention. I put my thumb up and mouthed “are you ok?” To which she nodded and waved. She tried to get the attention of every passer by, aswell as myself a few more times. I considered getting out to check on her but worried she may have dementia or something and I didn’t want to frighten her, so instead I kept putting my thumb up to her and smiling.
About 10 minutes later, the elderly ladies daughter came back to the car. I watched to see how the old lady responded but she suddenly went withdrawn. The daughter sat in the drivers seat and started doing what looked like breathing exercises for a good couple of minutes as if to gain composure. She then started shouting at her mum, I mean she really let loose. Mum sat there with no expression on her face and looked forward the entire time. I could make out some of what the daughter was saying:
“I can’t do it anymore, Mum. I have no life. All I do is look after you, Mum. I don’t go out, I don’t see anyone, I just look after you every day”.
I wanted her to catch my eye so I could ask if she was ok. My heart ached for both of them and it has played on my mind since.
I imagine our lives are worlds apart, her caring for her elderly mother and me caring for my young autistic son but I got her. I knew how she felt in that moment because sometimes, I feel it too. I wondered what support they had, if any and then thought about what support I have. This picture gives an accurate representation of the support we get:
Unless you live the life of a carer you probably won’t fully understand what it’s like. If you aren’t a carer for a child with additional needs you have absolutely no idea how difficult it can be. To have shoulders so broad that you can carry the weight of an unexpected disability, a damn hard fight to access services and days when even dragging yourself out of bed to face the daily challenges can seem too much. You might think you know, but you don’t. And that’s not to sound patronising, it is just a lot harder than the snapshot of life you get to see, hear or read about.
Flip reverse it and I feel sad that you don’t get to celebrate the small things that you take for granted. No victory is small in our world. My 5 year old took his own t-shirt of last night and I hi-fived and praised him like he’d just won a lifetime achievement award. We get happiness out of the smallest of things because for us they are big things.
Yesterday I took My son to the dentist. The same dentist but new premises. I needn’t have worried about that as he rocked it in my eyes. I was so proud of him. To others, they saw a boy getting up and down countless times to press the button to electronically open the doors, and to be as delighted on the 20th time he did it as he was the first time. They saw a boy lye on the floor and squirm around when I asked him to sit down. They saw a boy who got so much pleasure out of flicking the lights on and off (much to the receptionists annoyance!) One lady smiled at me and said “You are SO patient with him”. Then I was, but I am guilty of not always being patient. Besides what choice do I have? He isn’t a bad or naughty kid, he sees the world differently. I explained he was autistic and she thought he was wonderful getting so happy from the door. The dentist checked his teeth whilst walking around and did it with the lights on and then with them off. The point I am trying to make is that this is our life all the time. It’s exciting but it’s tiring. It is busy and frantic when we are anywhere apart from the confines of our house.
Carers burn out is real. There are shockingly high statistics of carers having ill health. The NHS reports Carers are twice as likely to suffer from ill health as non-carers. More than half of those who provide more substantial care have suffered physical ill health as a result of caring, and more than 70 per cent of those caring round the clock have suffered mental ill health at some time.
Yet in my experience, carers are so overlooked. We are always someone else’s problem, pushed from pillar to post with no support.
There are some really useful things you can do to help someone like me, here’s just three ways:
1). Get to know my child and give them the opportunity to know you.
2). Ask how we are and listen to our problems.
3). Offer to help
I will continue to care for my son until my last breath. He is my biggest teacher, my hero. Sometimes it would be nice if carers were seen as heroes too.