I have spent a lot of the last couple of weeks out of work, either at school or on medical appointments with Joshua. I work four days a week, having Friday’s off, and I am very lucky to have a flexible employer. It helps, I am sure, that I have worked for the same family firm for 25 years now and so they have benefitted when I was younger, freer, full-time and driving over 40,000 miles a year. But, since Joshua was born, 14 years now my priorities have changed : I initially worked 3 days a week but then increased to 4 days a week once he started at school. Over the course of the last 14 years, I have needed time off for extended hospital stays, at home to take care of our poorly son and even spontaneous dashes to school to collect Joshua after a seizure, like happened today in fact. Throughout all of that, my employer has been both accommodating and understanding. I am very fortunate as I always say ” If I had a proper job, I would have been sacked a long time ago”. How do teachers get time off to watch their child’s sports day or Christmas concert? how do shopworkers get a week off, fully paid, to stay in hospital to be trained on the ketogenic diet? How do waitresses leave their shift suddenly to collect their son from school after a seizure? Yet I have been fortunate enough to do all of these things and many, many more with my employer’s blessing, but never without an element of guilt.
But it is not just medical appointments that cause chaos for working parents : all of the school meetings and events inevitably take place during the school day and week, Our school loves events on Wednesdays! so to attend Annual Reviews, Sports Days and parent open days, more time off work is required.I have some flexibility as I can swap my day off around, with sufficient notice, but there are parents who work full-time, so they do not have that option, so what are they supposed to do?
Then more recently, I have faced the challenge of the fact that Joshua’s sleep has been disturbed by his epileptic seizures. As a result we have had several nights, such as tonight, when Joshua is awake all night, or from 1am or he will go to sleep around 5 or 6am after an anticipated seizure. As he does not have any awareness of his own safety, Joshua needs to be supervised while he is awake; so there are days when I am in the office, with wobbly knees and feeling dizzy, because I may have just had 1 or 2 hours sleep the night before. That is not good for anyone.
I have to say that it feels as though, without flexible employers, the system does not expect parents of children with special needs to work at all. This is such a waste of our obvious talents, as well as an opportunity to escape, albeit temporarily, from a challenging home environment and to have an identity other than as ‘Joshua’s mum’.