Below is another post I wrote a while back for Firefly. I am sharing here as you may like to read it. I also thought it was a good opportunity to give a little update on dear little Taz. She’s doing brilliantly. We are so pleased. Thankfully her school have accepted her in this lockdown. I feel deeply grateful (whether we should be feeling so grateful for an essential service is another debate) but after what happened last time I just feel so relieved she has a place.
Taz continues to do really well. We are not seizure free, I don’t think we ever will be, but her seizures are every few weeks and are currently manageable. Her neurologist raised an eyebrow at the slightly odd combination of meds she is on but is delighted she is doing so well on them. We all decided not to make any changes at the moment. She is on much lower doses than she was. We never know how long these good patches will last but right now we are doing our best to soak up the joy of seizure free days and the delight this brings her, and us.
She is continuing her campaign of destruction around the house, plants have suffered as has the wooden floor in our kitchen (from repeated and very deliberate water pours). Cats have escaped her offers of massage. She is developing new fascinations with certain objects, the weekend saw the cheese grater being celebrated for all its shiny textured surfaces, the lemon squeezer too. They stayed close by her side, carefully guarded all day. When we tried to move them she pointed to indicate she wanted them back. This is new for her. She has also been getting in a few huffs. When she is cross about being guided somewhere she does not want to go, she huffily pants before breaking free. Concentrated cuteness.
Anyway – being a working parent carer – here’s how it is for me…
That title is a bit of an odd one as by their nature parent carers work. So very hard. For me it feels a bit like being in a senior position with huge levels of responsibility, having to deal with multiple experts, do all the admin yourself (no PAs exist for parent carers), all the while being so deeply emotionally invested in the outcomes that it hurts. As with most jobs, this one comes with its fair share of pay offs, the elation when a therapy or new drug seems to work, or the shout-it-from-the-rooftops celebration for what to outsiders may look like the smallest achievement (we were recently celebrating my daughter learning to help put her arms into clothes again, following huge regression and loss of skills).
I also have another, more typical job, which I absolutely love and which enables me to be the mum and the parent carer I want to be. Importantly for me, it has nothing whatsoever to do with childhood disability. I am lucky enough to have remained in a fairly senior position in my company while juggling hospital trips (many sudden, dramatic ones – our daughter has severe epilepsy) appointments and the actual mumming bit too. This isn’t down to me being some kind of superwoman, far from it (although you are frequently told you are ‘amazing’ when you are a parent carer – I’ll take that). I have stubbornly maintained my career because I need it, for my own wellbeing and maintaining what can feel like a very fragile sense of self sometimes. It’s easy to feel ‘you’ being slowly eroded as a parent to a disabled child and not just with painfully frequent references to you as ‘mum’ from professionals. Well-meaning I know but I wince every time I hear it.
My job has evolved to become a place of sanctuary for me. A place where I can use my skills and spend time with a team I love. This is a team of people (9 of us) who know all about my daughter, who know to interrupt me in a meeting if my phone goes (I have it set on a crazy-loud ring which makes everyone jump, typical I suspect for most people with a child with epilepsy) and would drop everything to give me a lift to the hospital. They also know I need to be able to have a quick cry now and then.
For many parent carers working is not an option so I feel lucky. Should I feel lucky? Ideally not. I would like to see workplaces make employment far more accessible for parents of disabled children. I have heard stories of people being refused employment as they need to have their phone on them at all times. That’s just rubbish. We’re niche group and I don’t think there’s specific legislation around this at present. Women seem to be taking the brunt of this too. After having a child most of us can get back to work in some form. Got a disabled child? Stop right there. At this point you are dished up a generous serving of appointments, therapies and meetings with a side dish of eye-watering form filling. Your plate is full. It doesn’t leave much room for resuming, or starting a career. The thing is, having a job, for me (and I suspect for many more parent carers, if they were given the chance to do it) is a form of support and that thing called ‘self-care’ which we are also supposed to be fitting in. It can build confidence, skills, relationships, and leave you more able and prepared to handle the demands of parenting a disabled child. My ability to quickly bash out an assertive email or to challenge professionals comes from my work. So, turns out I’m not amazing, or superwoman, I just do what I need to do and I am grateful to have an employer that enables this. I hope more parent carers can have that chance in the future.
Life with a Livewire 