DRM Carers Corner with Dan White

CARER’S COLUMN WITH DAN WHITE

Meet Dan White, a carer, who will share with us his personal insights into being a carer with an invisible disability…

MY name is Dan, I am a carer with a hidden disability and this is the first of (hopefully) many insights into who we are as carers, what we do, and how our lives run parallel and overlap the wonderful disabled community. But how do we kick things off? I can think of no better way than to be unguarded and have a coffee break to give insights that may be familiar, or maybe strangely enlightening!

The chocolate cake looked sumptuous in the rays of the afternoon sun. I slid the knife through the dark seductive surface and the liquid chocolate began to pool around the base of the brown treat. I took a slice, engaged my mouth and we all sat in the coffee shop eagerly picking up again the conversation of the Bristol Stools Chart. These are the unusual, frank conversations between parent carers. Like mothers groups, we meet anywhere to talk frankly and so we should, to be honest and personal is cathartic, a release, and a testament to our community strength.

When your child is born nappies are a constant, but for parents of disabled children, the issue of toileting may not stop after a few years. In fact, for some, it becomes so constant that we roll our eyes when some parents endlessly complain about potty training. Not all disabled children require a lifetime of catheterisation or suppositories, but for many of us, it becomes a day-to-day part of life. For parents of disabled children, nothing too toxic or unnatural is off the menu. In fact, most of the topics look like items on the coffee shop menu. Children with complex needs or disabilities are obviously more prone to bladder and bowel conditions, so we all often culminate in a get-together in a local eatery over lunch where anything goes and rightly so.

Why do we talk about it openly and together? Well, as ever watching guardians we need to be able to spot or smell infections that take place as it could be pivotal in discovering a contagion. We are a resource for each other, we share experiences. We smell pull-ups, change bags, even note colour changes whilst happily devouring a biccie with one hand and juggling a cuppa in the other. There is no reason why we shouldn’t openly discuss this in the high street. Staying home perpetuates isolation, mental health, and more. As a community we are often marginalised, we feed off contact and information; it could save a life. We need and deserve to be part of the wider world, we all need a break however much we love the stardust and atoms of our children.

The conversations are not restricted to us either. Our children, regardless of any communication issue, often join in the chat. Before Covid, we visited friends and over lunch compared stories of urine infections and constipation. My daughter and her friend both sat at a separate table discussing operational procedures like seasoned surgeons. They discussed the sometimes uselessness of catheters and liquid antibiotics that taste like “witches pee-pee.”

To those outside the care and disabled communities, while you eavesdrop, enjoy your muffin and your mocha and educate yourselves on how complex, rewarding, stressful, unique and sometimes comical our world is. We are parents just like you, but our lives are wired a little differently. Poop talk is very much part of British humour so why not join in? Come join “Bowel Weekly” and tell us your s**t stories.

“WE ARE PARENTS JUST LIKE YOU, BUT OUR LIVES ARE WIRED A LITTLE DIFFERENTLY.”

Author: Dan White Website: danwhite-1972.webnode.com Twitter: @Danwhite1972