Fruits of my Labour

While I am on holiday and not at work, caring for  Joshua full time ,as he is not at school during the day, it gives me some insight into how life might look if I was not a working mother. I went back to work on a part time basis, three days a week, when Joshua was 6 months old and even back then , I had already worked for my employer for 11 years. When he went to school, I increased my hours to work four days a week and to take Fridays off and 12 years later, I have maintained these working hours. My fridays are very precious to me as they are days when I get to do what I want to do, without having to consult anyone : they are when I fit in my haircuts, when I arrange to see friends and family, when I make my chasing phone calls to the Council or NHS, when I can commit to my monthly parent coffee morning at school and when I can spend some time with my husband, without having Joshua around. If I do not do these things on a Friday, I tend to fit them into our precious respite weekends.

On reflection, Friday is probably the only day of the week when I can do normal things and it is the only day of the week when I can actually put myself first, so it is no wonder that I am loathe to give it up!

Juggling work, albeit part-time, and raising a child with special needs is not an easy balancing act to achieve. In addition to the normal challenges that working parents face, such as organising childcare when their child is ill or covering the long and frequent school holidays, there are other considerations when parenting a child with additional needs:

  • Joshua has multiple health appointments and has even had extended stays in hospital in his life – an unplanned emergency admission in 2010, his brain surgery in 2014, botox and subsequent phsyiotherapy sessions are the longest commitments that I can recall.While my employer would release and pay me for my own health appointments and crises,covered by their sickness policy, I have to make the time up or pay it back for Joshua’s appointments
  • There have been frequent emergency calls from school over the years, that Joshua needs to come home as he has had his emergency medication or to meet the ambulance at A&E as he has had seizures and fallen and cracked his head open. In those instances I just drop everything and drive the 30 minutes to school or 40 minutes to A&E and have never once asked permission to leave.
  • During school holidays ,or if I have needed to work away, organising childcare has been challenging. I now have 25 days holiday a year, which has to be used carefully as it is not enough to cover the long summer holiday, let alone the two weeks at Christmas and Easter and the three half term holidays. We are fortunate to receive direct payments, which enable me to pay Yorkshire Grandma for after school childcare and for some days in the schol holidays. However at an allocation of 6 hours a week during termtime and 10 hours /week in the holidays, it does not stretch to all of the childcare that we need.
  • Given Joshua’s special needs and his epilepsy in particular, it is not a simple matter of paying a local teenager to babysit for us. Whoever we entrust him to, has to be trained in administering Midazolam in emergencies and how to handle seizures. They have to have eyes in the back of their head as he cannot be left unsupervised at all, so that is a demanding requirement and I would only trust certain people to take care of our most precious son.

All of that being said, I get more than just my salary from working : I get an identity of my own, where I am not just regarded as ‘Joshua’s mum’.  I get a distraction from caring, when I get to be normal and I become preoccupied with issues other than disability. I get a sense of achievement, as I am good at my job, and I get thanked and praised by my clients, which boosts my self-esteem.

I am fortunate to work for a small, family-run firm and as I have worked there for 28 years, I have grown up with them. They supported me when Joshua was born, with all of his complications. I always say that I would not have been able to have kept working as Joshua was growing up, if I had had a “proper job”, where you cannot easily cast your work aside when that emergency call comes in.

Joshua has two more years of sixth form left and once he leaves school, then a new chapter in all of our lives will begin. But for now I am grateful that I have been able to work throughout his childhood and school days, even though it has not always been easy.

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Separation Anxiety

I will be working abroad this weekend, which is a rare occurence, but I will be leaving home on Saturday morning and I am not expected back until midnight on Sunday, after a full- on weekend project. So I am having to plan both, what I need to take with me to Germany ,as well as thinking about what I need to leave in place for my husband and Joshua. They will be fine I am sure, it is just one night away, which they have managed before of course, but it is not easy, especially because Joshua has had some bad clusters of seizures this week – he was off school yesterday after needing rescue medication at school on Tuesday. – so that will make it much more difficult to leave them, as I find it hard to handover control.

I returned to work on a part time basis when Joshua was 6 months old, just three days a week initially and then when he went to school, it developed to four days a week,and I still  treasure my Friday’s off. This was my first job from university, so I have now worked there for over 28 years! I have often been asked how or why I work, when being mother and carer to Joshua is so demanding? For me, it has often been a lifeline – something that I can control – unlike Joshua’s health needs – , something that is familiar and that I am good at and something that allows me to forget being just ‘Joshua’s mum’ for a while. Of course I , like everyone else, have bad times when I regret my decision to work and wonder if life would be simpler if I didn’t, but on balance it works for us as a family.

During my normal working week, I have to be flexible, to accommodate Joshua’s health needs, as he will always be my prioirity. There are many times when I have had to rush out of my office to meet an ambulance at school after seizures or a bad fall or when I have had prolonged carers’ leave after Joshua’s surgery for instance, and I am grateful for the flexibility that I have been shown throughout his lifetime. When I went off on maternity leave back in 2001, none of us knew that Joshua was going to be more demanding than most ‘normal’ children, but the family firm that I work for have accommodated my needs and they know, I hope, that I give the most that I can at any time.

But this weekend I need to hand over the carer reins to Dad and I have to focus only on my work, as there will be nothing that I can do from Germany. I will do the best job that I can this weekend, then return as Mum  from Monday morning.