What’s your story? Tell us about yourself.
I was born on the southern coast of England in a beach town called Bournemouth. I’ve always lived here, although work has taken me all over the world! I’m married to the wonderful Clare, and we have a 17 year old daughter, Phoebe, and James who is 15 and has Autism and Learning Disabilities. Most of my career was spent in IT and telecoms, although alongside this I volunteered at church with the children’s and youth work. About 11 years ago these two strands joined together as I joined Urban Saints, a national Christian children’s and youth organisation. Over time I’ve held various roles but I’m currently putting down my Chief Operating Officer role to head up our Additional Needs Ministry. Living in a beach town, I love beach life (when time allows), and also enjoy cooking and reading.
Tell us about Urban Saints and the Additional Needs Alliance!
reaches out to churches and independent children/youth groups across the UK, resourcing and equipping them as well as running camps and holidays, mission trips, and more. About five or so years ago, myself and a friend, Kay Morgan-Gurr, were running some additional needs training and the group asked how they could continue the journey after the training had finished. We decided to provide a way to link people across the country (and beyond) who are passionate about working with children/youth with additional needs. And so the Additional Needs Alliance
was born! Based around a busy and diverse Facebook group, we also now have a website. There are around 1,100 people who are connect in the group, including children/youth workers, parents, and practitioners.
Where are you headed next with the ANA?
As the Additional Needs Alliance grows, we are increasing in influence, being asked to speak at events. We hope to continue this growth, retaining the ‘family’ spirit of our connection. We hope to provide more services to members, including a “find your nearest inclusive/accessible church” map/directory in a kind of “TripAdvisor” way. We want to keep resourcing folks in other ways to, as well as drawing in great info and resources from others. The Alliance doesn’t belong to any one organisation, which makes it’s a place for collaboration and sharing.
What are some immediate lifestyle challenges you deal with as you take care of James living in the UK? And what are some things to be hopeful about?
Well, life with James can be highly unpredictable. I’m writing this at home because James refused to go to school today so I’m home with him. There are things we just can’t commit to as we can’t always guarantee to be there, but I’m thankful for cloud-based IT services, Skype, Zoom, email, and phones, which also means I can work anywhere. Although there are tough days with James (like today!), there are great ones, too. There are many places that we love to go together where we have amazing times! The challenges are definitely blended with positives and hope… I wouldn’t be doing the work I’m doing now if it wasn’t for James!
What is an everyday, conventional, lifestyle brand or product that James uses that makes both his and your life easier?
James would be lost without his Apple iPad. He uses it for entertainment, for learning, and for communication. We’ve been through several as accidents can happen (like the time a fellow pupil threw it in the swimming pool at school!), but we’ve always got one to use and one on charge.
What advice would you give to other parents or caregivers with needs like your son?
If I give just one piece of advice it is this: reach the point of acceptance about your child. It helps no-one to be in denial, or angry about the way things have turned out. Look for the positives. They will be there if you look hard enough. Celebrate the little victories, and as Vivian Green wrote, ‘Life is not about waiting for the storm to pass…it’s about learning how to dance in the rain!’ I would also strongly advise parents to link with others, people who ‘get it’. It can be a lonely journey on your own, so find others on the same journey and chat, support, and cheer each other on!
– Mark Arnold, Springible Contributor