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 [...]
Do you ever head off on a journey to somewhere, but you have no map, no idea what it is going to look like or how you get there? I’m not talking about an exciting adventure where you get to be spontaneous, throw your head back and let the wind tussle your hair as you follow [...]
It’s the 11th October 2021, there is a severe weather front closing in and I have written about it before. I’m braced for impact. It’s my son’s 16th birthday tomorrow I am full of so much joy, pride, gratitude and love. I am brimming with heartache, loss and grief. Weather fronts are the transition boundary [...]
Have you ever tried to curate your expectations in order to minimise disappointment or sadness? As though you are trying to flatten the curve of your emotions by not letting yourself feel the high of hopefulness or joyful expectation. I have found myself attempting (and failing) to compress and ignore feelings of hope, excitement, love or [...]
An upside down world In the last year, the country has been turned on its head. Things which were once important are no longer a priority. People's values have been honed, the world has shrunk, and everyone has gotten used to living in a different way. Whether it is wearing a face mask to pop [...]
It is reported in the BBC news yesterday (18th March 2021) that over the past year the CQC has identified 508 “Do not attempt resuscitation” (DNAR) orders which were inappropriately put in place without discussion with the person or family involved. There is evidence to suggest this is happening more frequently for people who have learning [...]
There has been a lot of talk about Harry and Megan this week. Polarising, hot-headed opinions including the passionate view point that being entirely uninterested is the only right reaction. It has made me wonder what it looks like to, "keep the peace" and whether attempts to keep the peace can result in perpetuating injustice and [...]
If you had told me six months ago that any of the support we relied was going to be taken away from us as a family (until further notice), I would have considered locking myself in my bedroom. Ask me to home school ANY of my children = tears (there is a reason I am [...]
The world is reeling. It has been shaken to the core. The rhythm of our lives is untethered. Christmas won't be the same. New year celebrations won't be the same and all of us are clinging to the hope of a vaccine. Our values, way of life and priorities have been challenged. For parents who have [...]
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 [...]
