Looking in the mirror I don’t recognise the person I’ve become. This relationship is not what I thought, but there were tell-tale signs all along. As a dormant instinct casts a new light, ominous shadows creep into view and I realise abuse doesn’t always look like violence, sometimes it’s dressed up as care. The isolation started [...]
Would you be able to squeeze into your morning routine a 30-minute school drop off (each way) – at a school in the opposite direction to your other children’s local school? Would you still make the school start times? Did you see the range of articles scattered through media outlets following a Reform UK Freedom of Information request about [...]
As the parent of someone with complex disabilities I know that love isn’t enough. Love doesn’t give me more hands, patience or hours in the day. Love doesn’t make people listen or put more capacity into the system. As a leader trying to change working with parent carers, hard work isn’t enough either. Last month marked [...]
Today I was at the Labour Party Conference with the incredible Hayley Charlesworth of Harry’s Pals, speaking about Every Parent’s Worst Nightmare. This isn’t about disability.It’s about the mental health of parents and carers who are told their child has a life-limiting condition. No parent ever holds their newborn and imagines being told their child may [...]
CONTENT WARNING: This blog contains ableist slurs with the purpose of understanding and challenging how our ableist attitudes shape and form our language. For ableist slurs not to evolve attitudes need to change. We give words their power. The negativity of our words depends on our attitudes not the letters it contains. Words surrounding disability [...]
Hmm, this feels a bit unusual: Advice for Healthcare Professionals When Dealing With Something Rare By Jo Holmes Once again it’s ‘Rare Disease Day’. While I don't love identifying Lucy’s genetic diagnosis as a disease, I do find belonging in the rare community that builds up around the 28th February each year. You may gather from [...]
Holidays 'Same S*!t Different Location'. That's the title of an episode of 'The Skies We're Under' podcast, a podcast by and for families of children with complex disabilities. It's true... as parent carers wherever we go as a family the routines of daily care don't stop because we're on holiday. Feeds need making, syringes washing, food [...]
In promoting the 'Don't Call Me Mum' initiative and asking practitioners to #CallMe, I often hear the excuse that a hospital professional is simply too busy. It is easy in the bustle of the hospital ward to mistakenly regard the details as unimportant. Like the panoramic view of any hospital stay might include the admission [...]
November. It’s that time of year again when Pudsey is dusting off his eye patch and schools around the country are asking children to come in wearing spots (because we all have spotty clothes in our cupboards) to raise money for Children in Need. What could possibly be wrong with [...]
Medications 7 times through the day and night isn't cancelled. 24-hour PEG feeds aren't cancelled. Hoisting and toileting isn't cancelled. 24-hour postural care isn’t cancelled. Personal care isn't cancelled. Cooking, cleaning, educating, playing, resting isn’t cancelled. Contacting and negotiating with professionals isn’t cancelled. Visual stimulation, sensory stimulation and active movements aren’t cancelled Trying to keep your [...]
