A wonderful mother, carer, and West Mercia Police staff member has written an emotional blog to mark World Autism Acceptance Week. They have chosen to write this anonymously in their words, from their struggles and their feelings about caring for their non-verbal six-year-old autistic son.
I am my child’s safe space. He doesn’t experience the world as others do, and when I’m not with him it can cause him physical pain – so much that he melts down. Unable to cope, unable to function, he hits out and hurts himself.
My child can’t speak, so he gets frustrated when he can’t make his needs understood. Even when I am with him, sometimes I can’t reassure him enough that scary things are OK.
This week, water is like acid to him – he insists on being carried so the water won’t touch his shoes. It’s not just bath times, he sometimes won’t drink water. We know that next week water will be OK, but there will be another thing.
I’m constantly exhausted. I feel guilty: am I doing enough? Should I be trying this strategy? When I’m awake with him at 2am, researching the internet for the latest therapy that may make his life and our lives easier, my mind wanders towards the future. Being told that he will need lifelong care is scary to me.
I need to work – not just for money but for my mental health. I need to be more – more than a carer, more than a mummy. I need something that is just for me. It’s then that the cycle of guilt starts again.
We need understanding and a bit of compassion. When he’s not at school, my son can only be cared for by three people. Those are me, his dad and our lifeline, his big sister. It has to be someone he knows, someone who can be thinking things 10 steps ahead, so he doesn’t begin to unravel. He can’t cope and hurts himself or others. It needs to be someone who knows how he likes things to be. Someone who can carry a six year-old child, who at times will suddenly need to leave wherever we are. It also needs to be someone who can be fun.
When he is off school sick, on an inset day or during the summer holidays, I do have to drop everything. This affects my leave, pay and hours of work. I need to be able to
take calls from his occupational therapist, speech therapist and dietician. This all has a great impact on my job.
I’m so physically exhausted I can’t think straight, but my son needs me. I’m doing my best, that’s all I can do. ∎
This blog was originally published on the West Mercia Police intranet – it is reproduced here with kind permission of the author