Who am I? I am a mother, a step-mother, a wife, a daughter, a sister, a friend, a neighbour, an employee. I think I’ve ordered that accurately. But hang on, where do I come. I am a woman. I often feel like that list is an accurate depiction of the pecking order.
Of course the children’s needs have to come first for any family. But what about when the children are children for longer than usual? When you have a child with additional needs, it is often the case that independence is achieved significantly later than the ‘norm’ or sometimes never. And that takes its’ toll on the main carer.
I am the main carer; I am not a stay at home mum, I go to work at weekends and sometimes evenings. But I am around for weekdays. I do the school runs, I take care of the housework (sometimes), shopping, cooking, laundry, errands, etc. I am the carer when the children can’t attend school, I’m the contact when they are ill at school and need collecting, I do the medical appointments, the home visits, the school meetings and anything else that crops up. I am here so of course, that’s my role. It’s just being a mum, right? But when your child is almost eight years old, you do expect a degree of stability. You expect regular school attendance, the odd cold or virus, and independence for personal care (with lots of prompting). I’m not writing this for sympathy, or to make a point to anyone, merely an insight of life as a special needs mum. I’ve heard ‘but you get lots of help don’t you, there’s loads of practical support for disabled children’. It’s a myth. There isn’t. Of course it depends on the level of your child’s disability. In our case, she kind of falls into that middle ground of needing extra help, but not enough to warrant a great degree of external support. And also being proactive parents means we kind of get left to get on with it. We have a great family support worker who has secured the best schooling for Aine (despite her protestations we firmly believe without her we would still be battling). Her school are amazingly supportive, her teacher an angel in a fleece (her classroom is too cold she contests). We have support from the Donna Louise Trust, a charitable organisation that helps with respite, we get some financial support from the Government, I’ll save my political rants for another blog however. But I still struggle on a day to day basis. I suffer from anxiety, my body is as tense as a coiled spring, I rarely relax, rarely sit still, rarely sleep a full night and never switch off! I sit in defence, waiting for the next seizure, the next meltdown, the next thing to upset the apple cart, honing my mind reading skills. I spend all day preparing myself for the evening routine, all evening and night preparing for the nighttime waking, and the early hours preparing for the morning routine. I can’t plan time for myself, because it’s often interrupted by a higher priority. I rarely get time just to be me! Of course the many Facebook posts tell me that I need to; ‘you can’t drink from an empty cup, take care of yourself first’ a personal favourite. My solution is to choose cappuccino, when you think it’s empty you can scrape up the frothy bits around the edges.