It's been four and a half years in the role as a Parent Carer, the first two years I really had no idea I was recruited 😅. Like every new challenge (if you are a pathological optimist like me), there are also new opportunities. I have had the sheer honour and privilege to interact and chat with numerous Parent Carers (some with more than one child in tow) with varying special needs; complex, rare, hidden or borderline. Listening to their stories and day-to-day challenges while they continue to love, raise, and unconditionally care for these children in uncertain financial and social circumstances has profoundly moved me. This has forever set in me a very grateful insight, a window into a world I never want to unsee. I am learning, and listening more and more about Fragile X Syndrome, Cerebral Palsy, Neurodivergency; Autism Spectrum with its hand-in-glove co-diagnosis of ADHD, Sensory Processing Disorder (SPD), Dyslexia, Dyscalculia, Demand Avoidance (formally known as Pathological Demand Avoidance PDA) to name a few, I am learning about the experiences of children with hearing and or sight loss.
However, in all my conversations, as well as gleaning from very good supportive groups like MASCOT and its myriad of sister groups I began to observe a Persona.
So I created the Persona "Tina" above, and I am happy for any feedback on this but it wasn't lost on me that females champion the Parent Carer sector. They are in the homes, they are the therapists, they are the special education settings head, teachers, cleaners, lunch ladies, they are the early years practitioners, they are the medical paediatricians. Although my observations are very particular to England, I have indicated in the Persona that this is a worldwide trend.
On this off-the-beaten-track journey, sadly the Parent Carer is more likely to have separated from their Partner, or if in a unit and married will be very much the lead, and executor of unfamiliar, difficult, and emotionally draining activities while balancing home life, this is what I refer to as a "Married single parent", although, in a unit, they take on more than their share with their Partner unable or perhaps unwilling to meet them halfway, ultimately that road eventual leads to a disintegration of the unit.
Although there are pages and pages of online and paper support, the reality in England at the moment for a Parent Carer is that waiting lists are enormous for any service you are seeking, events are scheduled during working hours and days, and case-by-case issues are hardly dealt with and you are told about that in the beginning! What is available is exponentially expensive with Parent Carers having to pay hundreds of pounds for equipment and activities that they may never get to see before they buy or trial.
It's a 360-degree lifestyle change and the only way to describe it is that it now takes you longer to plan to go outside than to be outside! With this 360 turn so do all (and I mean ALL) your friends, family, acquaintances, and religious connections shift and it isn't for the better and it happens fast. You become alone and isolated. Everyone seems to say and think the same "It is best we don't reach out so that we don't bother them". As the years go by and you are no longer there to throw the parties, go on the holidays, attend the events, be fun, or make the meals, offer the lifts, serve Coffees and Teas they drift away. You do have some connections with others but it is usually over a virtual medium, and hardly ever meet up. In an age where support in raising a child is no longer a village as a Parent Carer you are not just Villageless you are a societal outcast! The key thing to recognise is that no one wakes up or plans their future to be the carer of their child no one! So the fact that it is happening and has happened to me, and people around me means it can happen to you too. There are no guarantees that you won't in your lifetime care for or be cared for.
In the sub-sections to the key characteristics of my persona "Tina", I tried to show common wants and needs, frustrations, the type of personality and social-mental state, and it's grim however, with many pockets of superpowers emerging. While decisions are made speedily and you become a seasoned detective, and researcher, with emerging medical knowledge, the truth is that you are constantly in a war zone, that is why her hair looks unkept, and she still wears the same dress, and her skin is dry, and her face saggy and wet, it's a war zone and PTSD is real, but unlike a soldier that comes back from the battle, the battle never ends.
The flip side to all this is the person(s) you are caring for owes no allegiance to you, brought into a circumstance that they never asked for, they owe you nothing and it is pointless to ask for appreciation from those who can, and to seek it from those who cannot. Perhaps this is the biggest daily challenge, am I ready for the "unconditional"? This is a deep reflective thought because more than ever before as a society we crave feedback, as the saying goes "bad press is still press", we crave feedback, and we want to be seen, but every day it is asked of us to carry on with no motivation apart from the sheer self-driven will to do the right thing. And this is where you can help. If you have made it this far ask yourself do you know anyone who is a Parent carer? You don't have to talk to them and please don't pity them, but keep them on your radar, how could you make a difference in their day, could they be let off work earlier? If you are a family member does it hurt for you to learn more about the day-to-day life of caring and offer to do it once in a while or be that emergency contact, the good news is there is space for so much more to happen.
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Thank you again for reading this article and getting this far, it takes some time as you can imagine to put in all the details today. My life and professional experiences are shaping my carer role and I hope to only bring helpful and important insights, over the years. Unfortunately, the current job market and roles as well as expectations do not favour or allow me to perform my caring role that does not compromise the quality of life for the person I care for, so my options are limited. But if you found something useful in this article would you consider donating to my Go Fund Me Page
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