This is a post all about caring for my son, rather than my usual post topics, so please feel free to delete this if you’ve received it via email and it’s not of interest. My next post in a couple of days will be about the usual nature or knitting I promise 🙂

This video is shared in order to show a little of what life is like for my son, he often looks like a regular young man in still pictures and I have shared many pictures of him over the years, but those do not convey the depth of his disability or the challenges he contends with, and the video shows a little more of that. If you watch the whole video you will see some stimming behaviours – so prevalent in those with severe autism; affection; smiles and giggles; momentary sensory overload; tics and twitches; response behaviour and some nice interaction – the whole range of our day, except for the worst bits.

Let me introduce you to Toby…

Most of you know me as a knitter and pattern writer, but some of you may also know that actually my full time job is unpaid carer to my adult son, who is non-verbal, autistic, has severe learning disabilities, multiple sensory processing disorders, pica, tics and challenging self-injurous behaviours. Since he left special needs education a year and a half ago we have provided 24 hour care and support for him at home, with only 12 hours of external support for our family per week. Toby needs help with every single aspect of daily life, he cannot dress himself, bathe or clean himself after using the toilet, cannot get his own food or use any technology including tvs/ dvd players and so someone else has to do all of this for him. He puts everything in his mouth so needs constant supervision to keep him safe and stop him eating non-food items.

Today is Carers rights day in the UK. Carers Rights Day is a national campaign raising awareness to help the UK’s 5.8 million unpaid carers better understand their legal rights and the support they’re entitled to and so I wanted to raise awareness and talk a little about my experience of what it means to be a carer.

The dictionary defines ‘care’ as ‘the process of protecting someone or something and providing what that person or thing needs’

And there is a whole industry built around ‘caring’ for people of all ages who cannot look after themselves and need either some or total support for every aspect of living. This ‘care’ industry hopefully does meet most peoples basic needs, but much of it is rooted in a profit making business model and stories of lack of ‘care’ in supposed care settings frequently make the news.

We count ourselves extremely lucky that Toby has 2 wonderful small family/charity run places to go for day activities twice a week, and these are places where he is treated with respect, dignity and completely genuine affection. But in fact such good quality of care cannot be often bought or paid for, because actual care in the truest sense of the word is rooted in love. That is because to truly care for a vulnerable person it is necessary to often put the needs of that person above your own in order to keep them safe, healthy, happy and settled.

Millions of people up and down the country do provide this selfless care for their loved ones, with minimal support and without any financial recompense. The average person has a 50:50 chance of caring for a family member by the age of 50 – long before retirement age. This can have an enormous impact on their health (physical and mental), financial situation, free time, and employment opportunities.

And the sad truth is that help and support is hard to come by. Systems put in place often cause trauma to families that care for loved ones, as they create mountainous burdens of paperwork and form filling. And annual checks from social services, court of protection and GPs, each with additional attendant forms, prioritise ticking boxes and meeting targets on the part of the agency, taking away free time from carers and causing deviation from routines which can result in extra stress to both carers and those they care for. Councils allocate minimal funding for day activities but give no support in finding suitable placements, families have to find and research these themselves and also recruit staff, run payrolls, complete DBS checks and have employer liability insurance in order to outsource some of the caring responsibilities, all of this takes a good deal of time, which they receive no payment for and all of this work takes up precious free time that they would otherwise be able to spend on themselves.

Helen Walker, Chief Executive of Carers UK, says:

“57% of carers feel overwhelmed often or always. Many carers tell us that the burnout they feel doesn’t come from caring for someone, it comes from the battle to access support.”

“Unpaid carers play a crucial role in society. It’s widely agreed that our struggling health and social care system would collapse without them. Therefore, we need to see proper recognition and support in return.”

If you’ve got this far I want to thank you for reading and for giving me your time today  🙂

I have written this purely with the aim of sharing information and in solidarity with anyone reading this who also cares for someone that they love. I see you, and I want you to know that although it may sometimes feel thankless and at times desperately hard, you are doing a wonderful job xxx

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Resources:

Carers UK Website

Carers Trust Website