In recognition of all parent carers
When asked by the wonderful Ambitious about Autism to write a blog for Carers Week, so many burning issues sprang to mind, however, I decided to focus purely on the hugely challenging and enormously important role we play as parent carers.
We all have our own stories to tell. Life for most, however, is one scary and momentous journey from the moment we get an autism diagnosis for our children. It is the unknown. Nobody hands us a manual and says, “here’s what to do”, “here’s where to get help”, we literally find ourselves scrabbling around trying to find the proverbial needle in a haystack.
Any of us who have experience of the social care and SEN systems know how challenging it is to get the right help. We become warriors for our children, having to battle at every turn; some we win, some we lose but whatever the outcome we must press on, become creative and find options that support our loved ones.
Without us, what would happen?
Thoughts of what will become of our children when we are no longer around can consume us and as we age and our children become young adults, these fears often become even more debilitating.
The fight for support into the future becomes even more challenging, often described within the autism community as ‘reaching a cliff edge’.
All we want for our children, like any parent, is to ensure that they are safe, nurtured and fulfilled in life. A life they deserve, just like anyone else.
I am a single mum of two autistic sons, Oliver, 22 and Harry, 23. We left our home on the beautiful Caribbean Island of Antigua and Barbuda in 2013 to relocate to the UK in search of specialist help which wasn’t available on the island. Upon arrival here, I was quite naïve to the workings of the SEN and social care systems which, I have since learned, can be heartless and dehumanising.
Developing a strength I didn’t know I had
The jam packed past eight years have changed me; I believe for the better. My children have taught me to value and celebrate all achievements and successes, however big or small and to help me find a real purpose in life that I may not have otherwise found. I have also developed a strength, a survival mechanism, that I never knew I had.
Like most, however, I have had my fair share of rock bottom moments on this journey. I have become adept at knowing when I am reaching this undesirable place and my default is now to look in the mirror and say out loud, “Caroline, sink or swim?”; inevitably I choose the latter and I know it is the pure, unadulterated love I have for my children that keeps me going.
As parent carers our lives are irrevocably changed. We give up careers, marriages crumble, we become financially unstable, our mental health suffers from sleep deprivation and the anxiety and stress caused by the constant battling.
We become isolated from society, much like our children. Quite frankly, it hurts.
We are largely invisible to society and do not get the help and support we may also need. We don’t want to be ‘thanked’ for what we do but some recognition and appreciation of our important role in society is hugely important.
What being a parent carer has taught me
Experience has taught me, that we can either get swallowed up by the system and crumble beneath it or rise above it, value and be kind to ourselves, recognise the amazing role we play and soldier on. Perseverance certainly pays. Good and bad experiences have taught me what the ‘right’ and ‘wrong’ support looks like. The ‘right’ support literally changes lives, not just those of our children but, in turn, of the whole family.
I have seen both of my sons flourish, however, there is always a sense of fragility that surrounds them. Any changes to their environment, support or routines can literally send our young people spiralling backwards and the past fourteen months of the pandemic have sent many families into complete crisis.
I am one of the parents who had to give up paid work. I simply could not commit to the demands and inflexibility of most employers. Whilst this was hard at the time, I am forever grateful now that I have found a new path and consider my role as a parent carer and my continuing mission to improve the lives of autistic people, the most important and rewarding ‘job’ I have ever had.
Focusing on what I can do for my children
To close, I would like to share some things that have helped me over the years, especially during the ‘sink or swim’ moments. I try to focus on what I can do for my children and others in the same position.
To name some of my activities, I have campaigned for the rights of parents to continue advocating for their vulnerable children into adulthood (Deputyship); partnered with a local PCSO to train police in our community on autism; voluntarily supported several great autism organisations and set up a non-profit organisation on our beloved island of Antigua. I am working with an amazing team to develop a model of lifelong holistic care, support, and work opportunities for young adults. I am also halfway through writing a book.
Becoming ‘involved’ has been hugely cathartic for me. People I meet along the way, often ask, “how do you do it, how do you cope with your life”. My answer is simple; I do it, “for love”.
About the author:
Caroline Hopton is a parent carer for her two autistic sons.
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