Being a parent carer
Life with a Live Wire
by lifewithalivewire
1w ago
‘Parent carer’ is a term widely used in professional circles to describe a parent of a child with a disability. Many parent carers do identify as such, but not everyone. Some people have not heard of the term, or believe that as a parent you care anyway, so see it all as part of ‘the job’. It is vital that we continue to recognise parent carers as having a vastly different, and normally far more difficult role, than parents of non-disabled children. Being a parent carer is, certainly in my experience, an entire job in itself. Add that to the ‘typical’ role of ‘standard’ parenting and you’ve go ..read more
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School Transport
Life with a Live Wire
by lifewithalivewire
2M ago
There’s been a lot in the news recently about SEND school transport being a big cost for local authorities. Before having a disabled child I had no idea it was even a thing, and certainly no idea about how important a thing it was. Around five years ago, just as I was getting my head around the idea that Taz would be starting her school journey at a specialist setting, I was informed that school transport would be provided. What, from day one? But she can’t go on a bus or get in a taxi without me, that’s impossible. She won’t cope, I won’t cope. I’ll at least drive her in for the fir ..read more
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The Big Swing
Life with a Live Wire
by lifewithalivewire
3M ago
For many years Taz has loved swings at the park. Like many children with a learning disability, she enjoys the sensory feedback and the motion. She particularly loves the toddler swings with the little frame around her middle for security. She’s now nine and, despite some passionate attempts to propel herself into them, has outgrown the toddler swings (along with the toddler seat in supermarket trolleys, much to her indignance). We have had to graduate to the basket swings that not all parks have. She enjoys these but not as much as the little swings. I had always assumed she would need these ..read more
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Being a parent carer – a feminist perspective
Life with a Live Wire
by lifewithalivewire
4M ago
The mental load is well documented but poorly understood. I remember a few years back, Women’s Hour on Radio 4 created an online quiz to reveal how chores are broken down in relationships. I duly completed it only to find that the split of chores in my relationship was more equal that I thought. I was shocked as I knew this not to be true. I then realised – the quiz just asked about visible stuff, cooking, cleaning, putting the bins out etc. It failed to include the hidden chores, the mental load: organising presents for your child’s friend’s parties, filling out school forms, school WhatsApp ..read more
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A trip to the beach
Life with a Live Wire
by lifewithalivewire
6M ago
We had a family holiday this summer. It felt so special that it was just us, no carers or enablers; just us, with grandma along for extra fun and another pair of hands. The trouble is, the very thing that makes it feel so precious (no one but family) can make it exhausting as well; no respite or night care for seven whole days and nights.     We stayed in the UK as we are too scared to travel abroad due to seizures and unpredictable behaviour (one day we would love to). We were near beautiful beaches and had a week of almost wall to wall sunshine. What a treat.  We went to ..read more
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A special school
Life with a Live Wire
by lifewithalivewire
7M ago
Taz went back to school yesterday. The sense of exhaustion and relief as we waved her off was intense. So was the guilt. To love someone with every cell of your being, while caring for them drains every spark of energy from you, makes for a mixed bag of emotion. I spent the day with a brilliant friend, on a sun lounger and in a pool. She cooked me a delicious lunch. I felt my battery level bar edge along a little. Today I am going to swim in the sea with some other brilliant friends. I can’t clean the house, or cook (thank you, husband), or exercise. I have never felt exhaustion like this. Lit ..read more
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Holiday club
Life with a Live Wire
by lifewithalivewire
8M ago
I got a newsletter from an organisation that provides information to families with disabled children recently. The introduction included this line: ‘for many families the summer holidays are a chance to recharge and take stock’. I of course expected the ‘but’ to follow, where they then acknowledge how very different this is for families of disabled children. But it didn’t. They left it at that. I found myself feeling angry that they did not understand the huge weight of the summer holidays for families of disabled children. It was of course a well meaning newsletter, likely dashed off in a hur ..read more
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‘Holidays’
Life with a Live Wire
by lifewithalivewire
8M ago
It’s the summer holidays. Taz is doing really well. The fact that we can say that when she is still having tonic clonic seizures most nights, I guess says a fair amount about the last few years. She’s busy Tazzing around, posting, exploring, lots of ‘ow’ ‘no’ and ‘stop’ when encouraged to do anything she’s not keen on (that includes most stuff that needs to be done to get through a day – e.g. getting dressed, cleaning teeth, taking meds…). Seizures are awful things; simply their relative absence (when they’ve previously dictated our days and weeks) brings joy. I’m going to be sharing a series ..read more
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Spring
Life with a Live Wire
by lifewithalivewire
10M ago
Last year we got a new fence in our garden. To make way for it I had to move some plants, one was a particular favourite, a sedum which flowers late in the summer. Pink flowers get darker each day, turning to intense red, then deep brown. It gets mobbed with excitable bees and becomes its own chaotic humming microcosm when the buds break. I put the sedum in a tub and watered it but by the time there was space for it to go back in the soil, it was in a sorry state. It seemed to sink into the ground through the winter. I found myself drawing a parallel with how Taz was at the time, repeatedly di ..read more
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Mum
Life with a Live Wire
by lifewithalivewire
1y ago
This is a post dedicated to my mum. Quietly brilliant, mum is our port in a storm every Thursday when she swoops in, Mary Poppins style (with as much stuff). Outside of Thursdays and Fridays, my mum orbits our family, constantly monitoring, phone nearby, ready to drop everything and parachute in, the minute things wobble. Mum has been on our journey, ensconced firmly beside us, from the early days of diagnosis. Holding me as my concerns turned to worries, and turned to terror. Lying next to me, both wide awake at 2am, while my husband was at the hospital, as we processed life-changing news. Si ..read more
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