The Juggler

It is a difficult balancing act for any working mother, to juggle taking care of children as well as focusing on the demands of a job, whatever the job might be. There is a need to find reliable childcare, that is affordable, and then there are the implications when either the carer or child should fall ill, which could result in last minute changes of arrangements, flexibility or time off work. I always envied those families who had willing grandparents close by who could step into the breach in an emergency, or better still, be part of the regular childcare solution.

However if you add into that difficult mix, having at least one child with special needs, then those demands become magnified : the child might be more susceptible to illness or complications of their condition, such as recovery time from seizures. Additionally they will  potentially have endless appointments to attend during the weekdays and during the day : appointments with doctors, consultants, physiotherapists, podiatrists, orthotics, occupational therapists and social workers. Then they might also be unwell enough to have prolonged hospital stays too. All of this will take its toll on any compassionate leave or holiday entitlement that might be available, and so it might be necessary to take time off without pay, depending upon the employer.

I consider myself to be very fortunate as I have worked for the same family firm for almost thirty years now. I started my current job straight from university and in the 8 years I was there , before Joshua arrived, I worked full time and covered many business miles each year. I took 8 months maternity leave and then I returned to work for three days a week initially, and then it increased to 4 days a week once he went to school. I am lucky as  when travelling I can work unusual hours and I am able to bank that time as lieu time, and then I can use it against time off for Joshua’s appointments and school events, so that it evens itself out. I am also lucky in that our company has always closed down over the festive season, so there is never any issue about being asked to cover during that Christmas school holiday.

So the flexibility that I have at work, enables me to be a working mother who can still attend harvest festival and open mornings and of course I have maintained my Fridays off, which are invaluable for school coffee mornings, daycare visits, appointments when possible and for extended weekends at respite time. But I am well aware that not all SEN parents are as fortunate with their employers or their jobs. I know that many of the parents from school are not in employment any more, they used to work, but it became too difficult to manage alongside the demands of parenting. That situation is not necessarily their choice, but their employer could not offer them the flexibility that they needed to go into work late if necessary or to take time off during the day, so everyone is missing out as these parents have a lot of skills to offer the workplace. It also helps the SEN parent to have another outlook on life, to integrate more with society and to find something that is more predictable than raising a child with special needs. My job enables me to be something other than ” Joshua’s mum”, something that is just for me.

School Holidays

There are just four days left of the school year and I am not sure how that flew by so fast- one minute Joshua was starting the new Autumn term last September and now, here we are, it has gone. In previous years I have panicked about childcare in the school holidays, as I will have a fortnight off with Joshua during his 6/7 week holiday, but I am relaxed about this summer. I will have my Friday’s off and I will use the services of Yorkshire Grandma as well as  our new respite service if we need weekday cover, as they have told me that is available should I need it, so I am lucky in that regard. I think I am not as anxious about it this year also, because I am more focused on the end of school permanently, rather than the end of school for 6 weeks. This will be the last summer holiday that Joshua has when he will be going back in September, so rather than being worried about the holidays, I am grateful for the new term I think.

I also know how fast the school holidays fly by and Joshua is so sleepy at this end of term, that I can see he is ready for some lazy days and lies-in too. We will start the holidays with a weekend away at our holiday cottage, as we have not been able to go for months, so that will be special. Joshua will be back at respite for the second weekend of his holidays, as I am going away with my husband, sister and niece to scatter Mum’s ashes in a special place from her childhood, and we are looking forward to that very much. Then we go on our family holiday for a fortnight, from the third weekend , which will be very special. When we get back it will be halfway through August and we will go back to our holiday cottage for the bank holiday weekend and after that, it will be back to school. So with long weekends, due to my Fridays off, we will not feel too deprived of time off together.

It is difficult making my 20 days leave stretch to cover the school holidays, but my day off every week and any accumulated lieu time helps a lot. I know there are several parents who are concerned how they are going to survive the long summer with their children at home with them everyday. I do not have that worry as I find the time flies by, they are back at school before we know it. But if you have a child with behaviour difficulties, or one who requires routine so asks for school everyday of the holidays, then that must be very challenging.

As I did last year, I am inviting a few Mums and their children for lunch in the garden on the first Friday of the holidays. Hopefully, like last year, it will be a carefree play-date, when the Mums can chat – in between chasing after their offspring – and the children can be themselves, where nobody will judge them, all around a buffet in the garden. We had a good time last year, so I have invited more families this time, and we will just have to hope that we are blessed with decent weather again so that we can be outside. Last year we were too ambitious and followed lunch up with a group outing to a farm, which was too much for some of the young people, so I have learnt from that, this year the invitation is only for lunch and to chill in our garden, that is probably enough. Hopefully that will be one day in the school holidays when those parents do not have to worry about how they are going to entertain their children and I will enjoy hosting this energetic party.

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.