I've been asked by a friend to write a new blog post about learning difficulties. I told her that it's a big old subject, so we discussed it and agreed on me writing about compassion fatigue.
My daughter, "C", has severe autism, a neurological condition with complications, including learning difficulties. She's 18 years old but still doesn't call me mum. She still doesn't 'get' communication, that talking to people is a useful skill, and she doesn't understand what people say to her. This can lead to severe problems if not handled the right way, including meltdowns, where she sits or lays down on the ground, screams, cries and lashes out at anyone who goes near. She nips, claws and kicks out at me and refuses to move until we can get through the bad situation that we're in.
Fortunately, this is a rare occasion now, but it has taken its toll on me, my mental health isn't too great and I get tired very quickly when patience and mental strength is required. She started at residential school a few years ago, and she comes home to visit at weekends. During this time she has gone from full on meltdowns almost every day, sometimes more than once a day, to them being a very rare occasion, thankfully, due to the hard work that her residential school and home have put in to make things better for us. She has a strict routine, she has lots of activities to keep her busy, and calm! This is one of the most important things when caring for someone with autism, lots of good boundaries and finding things which the individual enjoys doing to fill their spare time. Boredom is not an option. Boredom is one of the things which make behavioural problems start. Without any structured time, a person with autism will flounder and become worried and confused. They need to know what they can do in that time, if it is 'free time', they still need a narrow choice of activities to choose for, otherwise it can be overwhelming and they can't focus on anything at all. So for a parent or carer, this is full on time, you have to keep on your toes, constantly making sure that those free times are actually filled with something. This is when we get to the point of this blog, compassion fatigue.
Not only compassion, but physical and mental fatigue. Exhaustion. You know what you're meant to do, but it gets harder and harder to do it. Eventually, the understanding and patience runs out and that's when things get really, really hard. Things can be going amazingly, like they are for my family now, but there is still a fear there. Change is hard to introduce because it can cause confusion and upset for C, but sometimes change is inevitable and essential. So then I have to work out a way of minimising that change or cutting it into smaller, easier to manage pieces, and even then it can go horribly wrong. The fear is there once again, looming large, and as soon as I become complacent, here we go again. After trying so hard so get it right, trying to make things easier for her, it's devastating when she gets upset. When this is happening every day it gets harder and harder to be patient and understanding, no matter how much I know why she is behaving that way, chasing around trying to sort it out can be exhausting and very difficult. It's not easy to be patient and understanding when your child or young adult can overpower you physically, leave you with injuries and ultimately, anxiety and fear of the next time.
A typical example of this happened in the summer of this year. We have been going for afternoons out, going for lunch together, going shopping, going to museums, parks and to the seaside. C has coped really well with this and we have filled some very happy days together. I decided that it was time to take it up a level and have a day out at a theme park. Unfortunately this was too much for her and we quickly ran into difficulties. She became obsessed with the shops and ice cream stands and I couldn't coax her away from them. She had a major meltdown, refusing to move, screaming at the top of her voice and lashing out at me. I ended up with some big scratches on my arms, kicks to my legs and a huge sense of failure and desperation. I remembered the bad old days when this was a regular thing, I remembered the helplessness that came with it. I couldn't calm her down, I couldn't coax her to do anything. One man was quite rude in speaking to me, although the staff were understanding and gave us space. It took a long time to persuade her to leave, with two more relapses into screaming and refusing to move before I could get her back in the car. I then had a long drive home, with her poking and prodding at me because I was crying and couldn't stop. I could hardly speak for the rest of the day, I felt so bad about what had happened. I had put her in a situation that was too hard for us both to manage and it was all my fault, but I couldn't help feeling resentment towards her for the injuries and upset I had felt. I felt guilty, both for not predicting the unpredictable and because I could have happily walked away and abandoned her when she had pushed me to my limit.
I count myself lucky at the moment, C has her residential placement, where she is thriving, and we spent our weekends together, which are just long enough for us to have a bit of fun and happy times together before the fatigue starts to set in once again. I sleep well after one of her visits but it is long enough for her to have quality time with me, while short enough for me to not get exhausted any more. The fear is always there, even more so because her future is not yet secured, I am dreading when the funding for her placement runs out because I then have a choice of her coming home full time or going into another residential placement, which may not be one of my choice where she is fully cared for with all her needs met as well as they are currently.
There is a lot of pressure on me to ensure her future because she can't do it for herself, which just adds to the fatigue, makes me worry and tires me out. There are times when I want to scream and cry and get angry, I want to hand it all over to someone else to deal with, but there is only me and that's really really hard. Added to my mental health problems, the added anxiety and depression doesn't help and I neglect my own needs. I was asked 'what can others do to help me?' and I'm not entirely sure. It's such a wide range of things, it's hard to pinpoint one particular thing. As a general rule though, it's mainly company and practical support. Right now I feel alone in almost everything I do, and some company would help so much because I feel so isolated. Practical support would be along the lines of perhaps getting me out of the house a bit more often, accompanying and assisting where necessary when we try a new thing at weekends and finally someone by my side when the big things are happening, like when C's funding runs out and I have the probability of a fight on my hands with the authorities to secure a placement which is right for her. It's just such a shame that social and emotional wellbeing comes so low on the list of priorities for those who hold the purses, while it's carers like me who need it most, often more than anything money can buy.
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