“Nicola talks about an average morning caring for her daughter Rebecca, and then discusses the wider problems that impact parent carers and disabled young people – but are all too often ignored by wider society. This is their #SecretLifeOfUs.”
This morning’s shenanigans in the Slator household.
Means an absolute multitude to me – once I’ve reflected on the photo.
In no particular order:
Animals and special needs – in harmony.
Animals and medically special needs in harmony.
Bec is 20, almost 21 chronologically. But only 18-24 months cognitively. Snowy – rescued by Yorkshire Cat Rescue in 2004 – is possibly 19/20/21 this year. Adopted by us 2004. And possibly between 1 and 3 years old.
Tracheostomies saves lives. As long as tracheostomy weekly supplies get through to the tracheostomy patients. And not be diverted to covid wards.
Tracheostomy special needs means 24 hour waking care.
There are no carers.
Parent carers work 24/7; have no pension entitlement; have no annual/sick leave. Have no rights. Parent carers apparently have no medical expertise of their own children and their views and knowledge are not taken into account
Costs of fuel are higher – Bec has many medical machines that need power. Potential fuel blackouts will be a big issue.
Sustainability – quilt cover is from our boarding school days circa 1975. And is still going strong. Not a throwaway household!
Disability is still a taboo subject. In any capacity. Most of all when it comes to budgets. Complex special needs young adults are not treated as individuals. There will come crisis point when all children of Rebecca’s chronological age will drain the system. Because the System does not recognise that the amount of money spent on these young children medically, has a huge impact on the system and society when they reach ‘adulthood’.
Parent carers especially single parent carers are not given the support needed by society. Burn out/PTSD is not recognised in society with regard to parent carers.
Animal charities are not awarded lottery funding because apparently animals do not help humans. But I will buy as many Lalas as I can that have the specific ‘ring’. Priceless to Bec and our home sanity!
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