Take Heart

Interview with Mark Arnold

June 29, 2021 Amy J Brown, Carrie Holt and Sara Clime Season 1 Episode 46
Take Heart
Interview with Mark Arnold
Show Notes Transcript

Mark Arnold, the Additional Needs Blogfather, shares about how his faith has grown as a special needs dad, how we can be an inclusive church, and some of the joys he’s experienced raising his son with additional needs. Don’t miss this dad’s perspective. 

June 29, 2021; Episode #46

Timestamps & Key Topics:

  • 0:21-    Intro
  • 1:04-    About Mark Arnold
  • 5:29-    Relying on God’s Strength
  • 7:36-    Capturing Joyful Moments
  • 9:41-    Connection With Others
  • 13:01-  Nothing About Us Without Us
  • 15:21-  Notice us
  • 18:31-  You Can Start Again
  • 21:33-  Resources
  • 24:46-  Outro

Episode Links & Resources:

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Carrie M Holt  0:21  
Welcome to Take Heart where our goal is to give you hope, offer insight and encouragement, so you can flourish in your journey as a special needs mom. Each week Sara, Amy and Carrie will explore a theme, share an inspiring story, practical tips and encouragement for you to use every day. Thank you for joining us today. 

Today I am so privileged to interview our guest, Mark Arnold, on our Take Heart Summer Interview Series. Mark is the father of two adult children, a husband and the Additional Needs Ministry Director at Leading National Christian Children's and Youth Organization, Urban Saints. He is also the co-founder of the Additional Needs Alliance, which is a vibrant and fast growing online community. He is an enthusiastic national and international advocate for children and young people who have additional or special needs or disabilities. He is passionate about enabling everyone who engages with them to be inspired, trained and well resourced. Mark is also a Churches for All and Living Fully Network Partner, and a member of the Council for Disabled Children and the European Disability Network. He also writes a monthly additional needs column for the magazine, Premier Youth and Children's Work (YCW) magazine. His son with special needs is James, who has autism and some learning difficulties and epilepsy. He'll tell us more about him today. 

Well, thank you. Welcome, Mark, we are so glad to have you here on Take Heart. Could you tell us just a little bit about yourself and your family and your special needs journey? I'm so excited to have a dad on our show because I feel like I think a lot of our listeners are moms. But I know a lot of them are married too. iIt's just so good to get a dad's perspective, and we need this in the in the world of special and additional needs.

Mark Arnold  2:46  
Brilliant. Thank you, Carrie. Thanks for having me on the podcast too. As you said, my name is Mark, Mark Arnold. I live in a place called Bournemouth which is on the south coast of England, about 30 miles to the west of Southampton, if that helps to identify it for listeners. I'm married to Claire, and we have two children who are both grown up children, now. Phoebe is 21 and studying history at university and James is 18 coming up to 19. James's journey is one that's very much influenced us as family. James was diagnosed as autistic when he was two and also with learning difficulties. Along the year since, he's picked up epilepsy and anxiety issues too. So it's been a journey for us as a family, for us as church and also with the work that I do. I work for a Christian, children's and youth organization in the UK called Urban Saints. Because of James's journey and the impact that that had on us as family, positive, good impacts that it has on us as family, we launched an additional needs ministry as part of what we offer out to churches in the UK and beyond. So that became part of life for us too. Since then I've been part of founding the Additional Needs Alliance, which is a collection of parents, carers, family members, children's youth organisations, practitioners, a whole bunch of folk that journey with us in that. You mentioned about me being a dad. Well, I have also been the founder of something called the Dads Fire Circle, which is a place for dads to come together, and gather and share with each other because yeah, that doesn't happen so much as maybe it should. I write as the Additional Needs Blogfather, which is great fun and great to see lots of what I write being picked up in the states as well. So some folk might have heard about me from that as well.

Carrie M Holt  5:00  
I was reading some of your posts and actually just watched your One Word with Sandra People's video and saw your dad's fire circle. I'll reference that definitely at the end of our podcast, because I think that is a great resource for dads. I was really excited to hear about that. So what is one way that you feel like your faith has grown as a result of your journey?

Mark Arnold  5:29  
Yeah, that's a really great question. I think, for us, we've learned to rely less on our own strength, and to rely more on God's strength. I have to admit, that's hard. It's hard for me. I can struggle if I'm not in control of things. Sometimes on this journey that we're on, we're a long way from being in control. Knowing that God's there, and that God's got this, that's so important to us. Seeing God redeeming something that could be hard, and making something really positive out of it is great. I very much doubt that I'd be doing what I do, if it wasn't both for our journey with James, but also what God has done in us and through us on that journey. When we're helping someone who's on a similar journey to us, there's that real sense of God using that not just to help that person, but also to help us, maybe, heal us a little, reaching into our souls and bringing light there. So yeah, that's really great to be a part of what God's doing there.

Carrie M Holt  6:42  
Yeah, and I can definitely identify with that. I'm very self reliant. I think a lot of our listeners are that way and just learning that we can't lean on our own strength. Like you said, I love how we have found purpose through our children's experiences and through their journeys, and God has used them to heal us in so many ways. What is one thing about your child, or just being a special needs dad, that gives you joy? We talk a lot on our podcast, the mission of Take Heart is for our listeners to know hope, joy and connection. What is one thing just about being a special needs dad that has given you joy?

Mark Arnold  7:36  
There's loads of things really about being dad to James that brings us loads of joy, but maybe most of all, it's about what he teaches us, what he teaches us about himself, what he teaches us about ourselves that's really, really important as special needs parents. James has the most wonderful laugh. Sometimes in the middle of even some hard stuff, something will amuse James, and he will start to laugh. This wonderful, uncontrollable body shaking, laugh starts to emerge from him. That just changes everything. It's transforming. It's like the lights have come back on again. Sometimes it's about capturing stuff like that as a special needs parent, and holding on to that ourselves. Also sharing that, to make a difference for other special needs parents too and helping them to know that they're not alone. There are other families like ours out there, that we all care for each other and get it like nobody else does and share the good stuff and the hard stuff with each other but journey together. I think James teaches us so much through all of that, that helps us then to help others.

Carrie M Holt  9:00  
Yeah, I love that. It's so fun to look at our kids and see how God has created them so uniquely and wonderfully, and the joy that they bring us. Let's talk a little bit about connection. Honestly, I would love to hear if you have any words of wisdom and encouragement for our listeners about how you and your wife make your marriage work and how you balance the needs of your son and the relationship of your marriage. If you don't mind speaking to that a little bit?

Mark Arnold  9:41  
Yeah, sure. I think connection is so important. It really is in lots of different ways that we connect with each other as family, with others that we're journeying with through church, through different communities and so on. I think we as a family very much have learned to be sort of circus performers. We juggle, and sometimes we're the clowns. We do all kinds of different roles within all of that. The one thing that brings all that together is the show always goes on. It always, always happens. Sometimes things go wrong, but hey, that can be part of the show too. It can make it fun. As husband and wife, we're a great unit there. We can share stuff with each other. If one of us is really just finding things hard right now, then we know that we can talk to the other one, and they'll get it. There's no judgment, and there's no negativity. It's hey, we're in this together. We'll work through the tough stuff and get to those better places again. Those connections are really, really important. The connections with James, as I said, that help us to learn connections with God that help us to share everything with him too. When Claire and I are sharing stuff, there's actually three people in the room. We're sharing it with God too. We can sense his arm around our shoulders, sometimes just saying to us, "I know. I'm there with you. I've got this." That really, really helps. And that, you know, really boosts us. Then we've got folk in our church and in different communities we connect with as well, that really helped us to be on this journey as well. Sometimes it's great just to be able to talk things through with other people too, and just to say, "Hey, you know, this is really tough, or Wow, this was great," and just to have somebody that maybe is on that journey too, maybe somebody that really gets it, that has been in the same place we're in. Then our time will come to be that person for somebody else, too. Those connections are really important and absolutely essential for us surviving as special needs parents.

Carrie M Holt  12:25  
Definitely. How have you seen your church and been able to encourage, through your work and through helping our church communities to help families connect with one another families to have a stronger unit, even as a family? What's some of those things that you could tell our listeners that your church has done, or that you're encouraging churches to do to help families with connections who have children with additional needs?

Mark Arnold  13:01  
I think there are lots of things that I could share there. I think some of the key things really, though, are always to be guided by the parents themselves. Churches listen to parents, not to assume, not to decide on behalf of families what they need, but actually to journey with them. There's a phrase that I don't know if it gets used much in the States, or whether it's a UK phrase, but the disability community here in the UK use a phrase called: "Nothing about us without us.." Nothing about us without us. In other words, don't decide stuff for us, don't do stuff and then just assume that it's going to work, but journey with us and be there for us. I think the other thing that's really helpful especially for families, when we're thinking about children with special needs and disabilities, is to know that this isn't something just that needs support for a couple of hours on a Sunday or for a children's club night or something. This is getting alongside families through the week, through the month, through the year. Knowing when those times are going to be tough for those families and being there for them and practically, and pastorally supporting them through some of those more difficult times. Building that trust and relationship with families so that families are able to know that they can put their hand up and say hey, we're really struggling right now. We could really do with some help right now, and to know that there will be a community there that will step up and get stuck in whatever needs to be done. Whatever help needs to be provided, they will be there for them and as a community to journey together in that.

Carrie M Holt  15:05  
How have you seen some of that change because of COVID in the last year? Have you seen the role of the church differently with connection and community and support?

Mark Arnold  15:21  
I think there's been a mix of experiences that families have had over that period, or over this last year. There have been families that have found that actually, they've been able to connect to church, into their church community in ways that they've never been able to do before. Families that might find it hard to rock up at 10 o'clock on a Sunday morning to a church service each week, but could flick on Zoom and connect in that way, and be able to engage with what's going on in a really interactive and encouraging way that way. Then at the other end of the scale, there's families that have really felt isolated. They've heard nothing from their church. It's been a really tough year for them, so a real mix of feelings. Urban Saints, that I work for, were part of something called the Disabled Children's Partnership. The disabled Children's Partnership did a survey reaching out to parents and saying to them, tell us about your experiences of lockdown. One of the most striking responses was from a mum, who responded to say, just notice us. Just notice when we're not there. Recognize that things might be tough for us at the moment and get in touch, and just make contact with us. I think that's such an important thing to remember. Actually, it's so easy to send stuff out on emails and just use technology to connect with people, when sometimes picking up the phone, or going round in a socially distanced conversation on the doorstep or something can make a big, big difference for a family in that moment.

Carrie M Holt  17:14  
Yeah, definitely. I was watching your Belonging video with the One Word that Sandra People's did, and I love how you say that: notice us that we, we want to be noticed. I was actually thinking about, there's a mom who lives in our neighborhood who has a daughter with some special needs. I have seen her at our church, and I've talked to her at church. I realized that I haven't seen her there in over a year. Our church is open and we have been back with our family. I need to reach out to her personally and notice her and check in on her. I just want to encourage our listeners that  sometimes it's not all about, you know, the church feeding us. It's also about us noticing other special needs families and connecting with them and noticing them too. So thank you for encouraging us with that. If you could go back and give yourself some advice for the beginning of your special needs journey, what is one thing that you would tell yourself?

Mark Arnold  18:31  
Yeah, I think I would tell myself, it's going to be okay. It might look terrifying at the moment. But you'll adapt, and God will change you. You'll end up in a very different place from where you thought you'd be, but it will be good. Yes, there will be tough days, but you'll build resilience, and you'll get better at dealing with the hard stuff and the unexpected stuff. That journey will then equip you to be able to help others as well. When one of those really tough days come, and they will because you know it is expected, then to know that you're not in this alone. There are people that care who are around you, a great big God is there next to you as well. I always think of the words that Scarlett O'Hara so profoundly said in Gone with the Wind, that wise sage, Scarlett O'Hara says, "After all, tomorrow is another day." How right she was. How right that can be in the context of special needs parenting. It might have all gone wrong today, but hey, there's always tomorrow and you can start again.

Carrie M Holt  19:59  
Yeah I love that. That reminds me of Anne, from Anne Green Gables saying, "Tomorrow is fresh with no mistakes in it." 

Mark Arnold  20:09  
Absolutely, and we can start again. The thing is not to bring into that new day, all the feelings we might have had from the day before. So the day before has just been a wreck. Just bin it! Maybe learn some things from it, but start afresh on the next day and get stuck into that and know that God's there with you, and there's some good folk with you cheering you on. It's a new day to explore together.

Carrie M Holt  20:39  
I love that. If you don't mind if you could share with our listeners just a little bit more about your blog. I love the name of your blog: The Additional Needs. I really had not heard that phrase before, and my son's 14. Maybe I should have. Where did you come up with the name of your blog? I love how welcoming the name of your blog is with that Additional Needs Blogfather? Tell us a little bit more about your blog and your ministry for our listeners, so they can find you and some of the resources that you might have for our listeners.

Mark Arnold  21:23  
Okay. Thanks for the encouragement about the blog as well. Yeah, I wear lots of different hats. The Additional Needs Blogfather is one of them. Additional needs is increasingly what special needs are referred to in the UK. There's a sort of move from calling them special needs to additional needs. That's where that bit came from. It's a blog, and I'm a father. So Additional Needs Blogfather came from that. It's been a great journey. I've been blogging on there now for about four years, I suppose. It's built up quite a great following, which is really encouraging, but creates pressure then to keep finding things to write about. There seems to never be a shortage. God always inspires. Folks can find the blog by going to the www.additionalneedsblogfather.com. You'll find the blog there. As I said, My day job is as  Additional Needs Ministry Director at Urban Saints. You can find out more about the stuff that we do there, particularly in the additional needs or special needs space by going to www.urbansaints.org/additionalneeds. We've talked about a couple of the communities that I've been involved in forming. One of them is the Additional Needs Alliance: that community for families, children's and youth workers, professionals, practitioners, anybody really who's interested in caring about children and young people with additional special needs. Primarily, that's on Facebook. If people search on Facebook for Additional Needs Alliance, then they'll find us there and can join the 1000s of people that will be there already as part of that group. You mentioned the stuff I do with dads. The Dads Fire Circle. We gather once a month, at the moment, that's on zoom, to connect with each other and share life together. There's a website and a Facebook group where dads can journey, share, ask questions and explore things together. It's great to be able to journey with those dads. If folk are interested in that, then look for www.dadsfirecircle.com, and you'll find more about the stuff that we're doing there.

Carrie M Holt  23:58  
Well, thank you so much for being a guest today. We are just thrilled to have a dad's perspective. Many things that you said resonated with me, and I know it will resonate with our listeners today. So we appreciate you coming on the podcast.

Mark Arnold  24:13  
It's been great to be here with you. Thanks so much for having me on. A blessing on all that you're doing through Take Heart. I think it's a great thing that you're offering out to families over there.

Carrie M Holt  24:46  
Thank you for joining us this week on Take Heart. If you're enjoying our podcast, could you do us a favor and leave a review on whatever platform that you're using to listen? You can follow us on Instagram or Facebook @takeheartspecialmoms. If you have any questions or comments, or would like to share your story with us, please follow the links in our show notes. We love hearing from our listeners. Be sure to listen in next Tuesday as Sara continues our Take Heart Summer Interview series with a special guest.