Our Dads Who Care group has become a lifeline to fathers of profoundly disabled children. Here, James, who spoke at our recent AGM, shares how being a member of the group helps to reduce loneliness and feelings of loss.
It’s difficult to put into words just how huge an impact Crossroads Care and the Dads Who Care group has had on me.
I’m a dad in full-time work, but if I was to share with you even part of my day-to-day life, you would probably nod, smile politely and feel compassion, hopefully. Most likely, it would all be alien to you, and perhaps unpleasant to hear.
Let me give you some context about my world. I am a father of two. My eldest child, Thomas, 19, has Angelman Syndrome, a rare genetic condition that affects the nervous system and causes severe physical and learning disabilities. He needs two-to-one care for all aspects of his life from personal care to feeding via a gastro peg. He is a wheelchair user, has scoliosis and is non-verbal, suffers from constipation and has 100 to 150 seizures a day.
We were awarded two-to-one care in June 2022. Up until then, either myself or my wife, Clair, were always the second carer, and even now we have to step in to support the carers looking after Thomas.
I joined the Dads Who Care group when it first started about five years ago. Since then, we’ve been meeting up every four weeks for a few pints and a meal.
The boys in the Dads Who Care group listen, ask questions, share their experiences and give counsel, but we have fun and banter as well. They help normalise my world and remove the feelings of loneliness and the sense of loss.
The group has allowed me to open up, express myself and learn how to manage challenges and communicate better with others. But most importantly, it has helped me on my journey of being a husband, a dad and a man.
The Dads Who Care group has had such a huge impact on me, as I know it has for the other members too, so I’d like to say a huge thank you to Crossroads Care and their funders for continuing to run this vital group.