I am at a crossroads and my day of decision making ironically falls on International Women’s Day 2018. The gap between pay and opportunity for women is well documented, however there is little profile given to the additional impact of caring responsibilities – which statistically falls more to women than to men.
As a Mum, it is a challenge to balance career ambitions with home life – this becomes much harder when one or more of your children has disabilities. It seems to be expected, as Mum to a disabled child, that you don’t work. We are at the beck and call of professionals who inevitably work 9-5pm and need us to be available to them. The paperwork and diary management required is a full-time job. Most importantly GG needs me at home, more than the other two and this is becoming more evident as they grow older – two are becoming less dependent as one is becoming more so.
My employers have been very supportive of me – I have worked for them for more than a decade so they knew the pre-mum version of me. I continued to work at pace after GGs older sister was born and even went back full time after GG, although it didn’t last very long. After GGs younger brother was born I settled on 4 days a week and am incredibly fortunate to have been offered support and flexibility (in return for a lot of hard work), which has allowed me to be one of a rare breed – a Mum with a disabled child who has continued to progress my career.
However, the next logical step is the big one. The next role is the one that I have dreamt of since the start and it is – professionally – within my grasp. From a home life perspective it is a very different picture. I am at a crossroads.
In the last 12 months, we have moved 200 miles for a different lifestyle. I have continued to work in a demanding high profile role – in fact, I have been covering 2 challenging roles whilst (in theory) working 3 days a week. I have however been at home more. I have been there for more of the school runs, the after-school activities, attended the assemblies and school plays. I have travelled a lot, been away more than I have enjoyed, and GG has struggled with that (despite my fabulous parents covering in my absence).
Here is the crux of the issue. I haven’t quite given up on the ‘ambitious me’ that wants the top job. I am genuinely not money motivated, but I love what I do and know that I make a positive difference. I have worked really hard to get this far and it is so hard to walk away from it. However, the ‘home me’ knows that it is not the right decision for me or the family. I need a career that I can still enjoy but balance with the extra high needs of my family.
I cannot help but ponder how this could be different though. The constant battle to get what GG needs is all consuming. In a theoretical world, where there was a co-ordinated approach to provision for a child with additional needs, the burden on the parent carer would be so much less. In the first two months of this year alone we have battled through a social care assessment, we continue to fight for the right provision in GGs EHCP (Education, Health and Care Plan) and applied for and then (successfully) appealed for a blue badge.
In a co-ordinated world, I wouldn’t have had to spend hours justifying GGs needs over and over to different professionals. The provision could be based on one core assessment leaving us to focus on meeting GGs needs elsewhere. We have also attended 5 hospital appointments – one of which was a day admission – and completed a significant medication change. All of this comes on top of managing a child who has much greater needs at home which we just absorb into our lives.
I will not give up on my career – it is too important to me. I have plans and aspirations and slowly I am starting to let go of my previous dreams – to replace them with new ones. GG brings immense joy to me, my family and a lot of other people, so I will be focusing my skills on making the world a better place for all those who are disadvantaged – and helping the rest of the world to see how beautiful it can be. The holy grail of an inclusive society.
I do still want to scream from the rooftops about it not being fair but I know it won’t actually help. Instead I will focus my efforts on trying to get the voice of parent carers heard among the millions shouting for equality on International Women’s Day.