Introducing Claire who has joined the Mobilise team, hosting our Monday cuppas and more. Claire is a parent to three children, one with complex needs. Currently negotiating home-schooling, a sensory-based curriculum for her daughter with disabilities, whilst working and managing a neurotic dog! Here she talks about how they’re holding up, and the five things she believes are keeping them sane.
If someone had told me there was a lockdown coming, and I would be stuck at home home schooling three children, caring for my daughter with complex needs, running a business and managing a neurotic dog for 11 weeks straight; with no breaks, no respite, no help, and with maybe another 11 weeks to go (which ended up turning into months!), I suspect I would have done some sort of hysterical laugh and maybe left the country (if the borders were still open!).
"I’m sure I’m not the only one!"
So sometimes it would seem, that it’s best not to know what’s coming, and to instead live moment to moment. One day at a time.
Forward knowledge of how long this would go on for, would have sent me into a panic. I would have catastrophised! But ‘disappointment (or disaster) takes planning!’ Without having any real grasp of how long this would last, I was spared the trauma of planning how ‘bad’ it ‘would’ or ‘could’ get!
Instead, I’m taking one day at a time, and not allowing myself to forward plan. And I think this approach might be exactly what is saving us!
But look at all of us. All with caring roles, each already ‘stretched’ before the lockdown. But each of us now finding our own way. Taking one day at a time. Some good, some not so good. But we’re doing it. And I think we should all be so very proud of ourselves right now.
Looking back on the last 11 weeks, and marvelling that I’m still sane, my kids are mostly happy (I say ‘mostly’, as one is 13 – say no more), and I haven’t burnt out, I’m pretty proud of us all to be honest.
It’s got me wondering how we’ve done it. After all, my 10-year-old daughter has complex needs. She’s non-verbal, with full personal care. She has no safety awareness, an attention span of approx. 10 seconds and is like the energiser bunny. Sleep isn’t very popular with her either! She’s ‘hands on!’. And with a weak immune system, there is no sign of her returning to school, any time soon.
But something is working for us – and looking back over the last few months, here’s what I think has ‘saved us’;
1. Living one day at a time
Not counting the weeks until they ‘might’ go back to school!
2. Diarising my own self-care!
Non-negotiable ‘me time’ to replenish myself. This can feel uncomfortable at first, but “we can’t pour from an empty cup”. If we really want to give our loved ones our very best care, then we must have our needs met! I have time each day to either read, walk the dog on my own, meditate or have a bath.
3. Ditch guilt
This has been amazing! It was clear I was never going to meet everyone’s needs to the level I would usually. It would be impossible, without me burning out – and where would that leave us? So, I make sure each child gets a piece of me each day, I save a piece of time for myself (self-care), and then I simply refuse to feel guilty. This is a marathon and our pace is what will save us! And what does guilt achieve? Nothing productive in this context, that’s for sure!
4. Be kind to ourselves
We will have bad moments, where we are not at our best. Just be kind. Chastising ourselves does not change what we did or said. A bad moment, probably indicates that we haven’t replenished our own needs enough – take it as a warning sign! Forgive, replenish and move on.
5. Be grateful
Every single day, we each find three things we are grateful for. Our home, the sunshine, our health, our family, zoom calls, cake! You name it! It’s a wonderful way to finish the day. And even on the ‘bad’ days, you realise there were some ‘good’ moments. It shifts our focus.
"There is no such thing as a perfect day, but there are perfect moments in every day."
Of course, the worries do still creep in sometimes. I worry about the economy and the future that holds for my children, I worry about those less fortunate than myself, I worry that we may get sick. But, then I remember, that my worry doesn’t solve the problem. In fact, worry and anxiety weaken our immune systems. And so, I bring myself back to the present. I turn off the news, I ignore social media for a bit and I ground myself in the here and now once again.
In some ways I think as a carer I was mentally prepared for this isolation, in a way that many of my friends weren’t. We were already used to ‘missing out’ on events, not ‘going out’ as much, generally being restricted. It’s been a real shock to many of my friends with neuro typical children, where I guess complete freedom was a given and understandably taken for granted. In some weird way, I feel on an ‘even footing’ for once. Although not entirely – I certainly can’t imagine what it’s like to get through all of the series on Netflix and Amazon! I don’t know what it’s like to be bored! And no – our house won’t be a completed DIY project by the end! ;o)
So, for now, I’ll enjoy “not missing out”, not running my children around like a taxi service and not having to pack bags! (swim bags, PE bags, changing bags, lunch bags, snack bags).
Instead, I’ll enjoy the sunshine, enjoy my self-care, and enjoy the new skill of living day by day.