I am a Parent/Carer

Many moons ago I watched a Kitesurfer out on the Mediterranean coast in Hyères, South of France. He was quite agile and seemed to be at one with the Wind. I cannot remember how long I stared, but soon enough he coasted back to the Beach and took off his helmet. I was shocked! He was probably 78, or 80 years old, he barely walked across the Beach and to confirm what I was seeing someone else probably his partner walked towards him handing him a Towel, just as elderly! This is not uncommon for France to see retirees running the Promenade Plantée trail in Paris, to Cycling on slippery winding roads all across the Countryside. Something that also appears common is that there wasn't an air of worry about these folks. Of course, you can't tell the backstory but one can definitely see the signs of anxiety and stress even in a hello, especially if it is constant (lifestyle of anxiety and stress). I didn't see that. I also didn't see that in my friends and acquaintances who were...

I heard that the Paralympics closing ceremony was amazing! I missed it as well as the Olympics closing ceremony and the Paralympics opening ceremony, one does, a day in the life eh 😅 for a Parent Carer.  But I did manage to catch loads of sporting events throughout the Paralympics I noticed this time that abilities and eligibilities were clearly written as footnotes on the screen, describing where the vulnerabilities and disabilities were with the contestants. It gave me a clearer picture of who was competing but also a sense of awe as how one does compete. I felt a little ashamed, and asked myself "what am I doing with my all-too-able body?" I silently vowed to take up Tennis again ... The Paralympics brings to the front right and centre, "Hope", and "Resilience", and "Out of the box thinking". I saw immense innovation in reasonable adjustments for all the contestants to compete. Did anyone watch a Boccia game? Wow! Sadly I dare not speak on a...

It's the start of May, and like the re-set of the Tax year in April, there have been some changes too in the Unpaid Carer's world, but what would this mean practically for Carers and specifically the Unpaid Parent Carer? Carer's allowance is going up Perfectly detailed on Lottie's website  it's an increase from £76.75 to £81.90 per week a £5.15 change or 6.7% increase. While certainly welcomed, we must bear in mind that the Carer's allowance has never been awarded incrementally on the number of individuals you care for, that could be possible via Universal Credit though, but Universal Credit does require a rock bottom situation to sign up for. As an Unpaid Parent carer to just one individual, it has always been an unbalanced sum so I do welcome comments from those who care for more than one individual, as I certainly feel that the now new monthly amount of £327.60 hardly meets up to expected expenses for one individual let alone stretched further. My POV continu...

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 Pathologic...

I have just picked up Autism in Childhood , written by Dr Luke Beardon, and there is a dialogue between parent and child set in the future where the child who is born on the autistic spectrum wants to know why the condition needs a diagnosis to be recognised. It asks whether the predominant neurotype (PNT) or neurotypical as it is more widely known, was not diagnosed. The child, wanting to understand even further, was curious to know why persons on the autistic spectrum went to clinics for therapies and needed badges and markers. It was a bittersweet read because you long for that future, but you know the work needs to happen in the here and now.  Part of the work happening is the program for Doctors in training at the University of Sussex called "Time for Autism". Doctors in training (just about their final year) are paired up with a family that has a diagnosed person on the spectrum living with them, and Home visits (about 3 in total) are made. These Doctors get to speak to...

It is tough to summarise or timeline global changes and events, even in the near present. We have had the mainstreaming of Crypto Currencies, a globe-stopping pandemic that we are all just still coming out from, the launch of the Metaverse, Genetic altering in vitro procedures , Apple’s visor on mixed reality, a potential cage fight between Elon and Zuckerberg (the shame of a mention). The Wars in Ukraine, Myanmar, Sudan … And the dramatic, more intense and frequent changes to the global climate. And you can’t help but wonder, when it comes to the buzz, Twitter taking to threads and all sorts of peer-to-peer services popping up are the in-conversations, but very little is mainstreaming on what an inclusive society looks like regarding persons on the autistic spectrum, neurodivergence. In teams, workplaces, powerhouses, religious settings and everything in between, families and persons on the spectrum are, have always been there. They are overcompensating, struggling, some thriving, and...