Working and parenthood is the biggest balancing act for so many families. That goes double when your child has a disability. And if you're a single parent, the challenge is immense. (Apols to those who had a sneak preview of this in error on Monday!)
The situation is different for everyone whether you always planned to be at home while your children were young or whether you've been forced out of the workplace through a lack of support, or if you're just having to juggle the two demands regardless because you have no other option - or indeed, because you have a career that you just can't step away from.
Parent, Tina Medlock, is one such parent who is still working but isn't sure how long this is going to stay an option as her son requires just as much support as ever. She's shared her story with SNJ.
Working life and special needs parenthood, the never-ending balancing act by Tina Medlock
My view on work-life balance and stay at home parents has changed over the years. Pre-children, I had a very idealistic view of how this would be juggled and in my very planned out life (including the pregnancy), I went into parenting with a very naïve view of what it should and indeed would look like.
The reality is, many families of this generation need two incomes to survive. The truth is also that some parents need to work for their own sanity. I tell myself periodically that if I could, I’d pack it all in. I’d become a professional athlete and not have to worry about getting to the eleventy appointments I have monthly for my son, whilst putting any needs of my own on the backburner. My other half laughs at this idea every time I bring it up. I’m past forty and my athleticism is probably thirty years behind me. He looks me up and down, rolls his eyes as if to say, “here we go again” and he’s lucky he doesn’t get a kick where it hurts.
He tells me that I’d be bored if I didn’t work and I know he’s right. I’d be fed up of my own company and having committee meetings with myself would drive me up the wall. The flip side to that is that I find it hard to manage a full-time role as a manager within the NHS and look after my family’s needs.
You see, in my overly-planned out world, my child didn’t have additional needs. He came with an instruction manual and our lives were well and truly mapped out for us. Life was simple and it would have made a perfect Instagram-worthy shot. Even after his diagnosis of autism, I silently criticised other parent/carers for not working. I’ve always worked despite what was going on. I asked myself, “What do they do all day?”
The penny finally dropped recently when once again I was forced to admit I was struggling to cope. I was told that as your children grow older, in some respects it becomes easier as they are less dependent on you; that’s never going to be the case for us. We’re going through a process of planning his transition from a mainstream school to a specialist school. Alongside that, we’re moving his Statement of Special Educational Needs to an Educational Health Care Plan, which for anyone who has gone through this process, they’ll know what I mean when I say it’s a mountain of red tape, endless paperwork and meetings. It’s essential though as without it, my son cannot be guaranteed the support he needs within school and into the future.
Ongoing medical appointments
It’s not just the educational aspect of his life that I’m managing, he also has hospital and dental appointments that are with specialist services and often in the middle of the day. Not only is that disruptive for him but it is for me, given I work approximately 25 miles away from his school and another 10 miles away from the NHS buildings I need to frequent. I constantly joke about him needing a more efficient PA than the unpaid one he has at the moment, but there is smattering of truth within that statement.
These days, I feel quite ashamed that I ever had the thought I used to, and am well and truly versed with what a parent/carer does all day, even if their child is at school. You can never just take it easy as there is always something to do. And there isn't just Joseph in the family, I have a partner and two step-children who also need a part of me and I try to ensure I can be everything to them as well as to Joseph. I frequently find myself wondering what day it is, whilst managing conflicts between work and personal calendars.
Fortunately, my employer granted me a flexible-working plan which means that I can start work earlier or later and sometimes from an alternative base to allow me to be that parent Joseph needs. It’s not always been the case though, and some roles within my organisation would make that impossible and it’s not a one-way street. They know that I will be as flexible with them as I can in order to meet the needs of the business.
I’m not sure how long I can sustain the full-time hours and being an effective parent/PA. There may be a time in the future where I’ll come to the end of the full-time road. If that happens, it won't be through any lack of trying, but society needs to know that being a parent/carer is tough and combining that with work is certainly asking for a great deal. Those parents who stay at home are not lazy parents. They are parents who are putting their children first because they believe this will give them the best chance possible. That’s all I want to do for Joseph. I want to look back and know that I gave it my all to ensure his future success into adulthood and hopefully independence.
It’s easy to judge someone when you haven’t walked in their shoes, but sometimes you need to open your mind. You may not be on the same path but it’s likely you are striving for the same destination.
My tips for managing a stressful life:
- Don’t lose touch with friends who don’t have children with additional needs. I often hear people saying “they won’t understand”, but unless you explain, they never will
- Do your research at your own pace. The internet is full of useful information but trust your sources.
- Speak to people and escalate your concerns if you’re not happy with the outcome. There is always a route to those further up the ladder
- If you are employed, speak to your manager about options for flexible working. Many roles do not need to be carried out between specific hours or in a specific place
- Wherever possible, take time for yourself. Whether that be going for a walk, meeting up with a friend
- Don’t be afraid to speak up and say you’re not coping, we’re all human, not SUPERhuman
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She is also an experienced broadcast and print journalist & author. Tania also runs a PR, web & social media consultancy, SocialOro Media. She is a Rare Disease & chronic pain patient advocate with Ehlers Danlos syndrome.
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