Rachel is on the core team for Christian Charity Jubilee+ and has a huge heart for those who find themselves pushed to the margins of society. She is also the mother of three children, Zeke, Anna and Sam. Zeke was diagnosed with autism as a young child and soon after that, Anna began to have epileptic seizures and was also diagnosed with autism. Rachel and her husband Andrew have shared this part of their story in their book ‘The life you never expected’. Today I am talking to Rachel about the ups and downs of being a neurodiverse family within the body of Christ and how her children have been blessed and a blessing in her local church context.
How have you seen God at work in the lives of your children?
In extraordinary ways, because I guess our story is one of unexpected breakthroughs and also unexpected complexity. I expected to see God at work in the breakthroughs but I probably didn’t expect to see God at work in the complexity.
From a pretty young age, I felt God give me a heart for people in poverty. On my worst days, what then happened with the children sometimes made me feel that I was being benched from his purposes. But then I saw him at work in their lives. So, for example, Zeke is able to verbally communicate in ways that we never expected, or were led to believe wouldn’t happen, but he’s quite a black and white thinker. I remember walking into town with him one day when he was about 8 or 9, there was a homeless guy sitting on the side of the road and Zeke just knew that we had to do something. So he verbalised that “What is it we’re going to do?” Rather than, “Are we going to stop?” or “Are we going to do something?” he just said, “What is it we’re going to do?” We asked the man what his favourite chocolate bar was and then we went and bought it for him. I just loved that Zeke was so black and white about that.
Anna doesn’t have much language, and one Sunday morning, we walked into church, and there were three women all sitting in different parts of the church, all of them recovering from addiction. Two of them had had children removed and put into care. And Anna went round each person and kissed them on the cheek. As she kissed them on the cheek, these women started to cry, and I realized that I couldn’t have done that, I couldn’t have gone up to them without explanation and given them a kiss on the cheek, but Anna had delivered this message from God to them. Anna doesn’t care about people’s body language, so if everything in someone’s body language is saying, do not come near me, I will listen to that, but Anna doesn’t! She will go up to someone, and I’ve seen her do it with people who’ve had chronic depression, or big anger issues and she will literally lift their head and look into their eyes. I feel like God sometimes gives our kids ministries to people experiencing extreme suffering or poverty or challenges that he couldn’t have given to somebody else, because it wouldn’t have been received in the same way.
I feel like they are increasing the currency of mercy and justice in the community that God’s placed them in. When they were little, I thought they were maybe draining the resources of the church, I now realize that they are massive contributors. And I know I’d say that because I’m their mum, but I honestly think our church would say that too, that they’re massive contributors to the health of the body of Christ in our church.
It’s interesting to hear you say that caring for children with additional needs made you feel benched from what you thought were God’s purposes for your life, I’m sure that will resonate with other parents. What have you since learned about God’s heart and purposes for your life as you have cared for your children?
I’ve seen just how willing God is to expend what looks like a wasteful amount of energy, emotion and kindness on his children. You realise that on a spreadsheet of the world, love isn’t efficient – we should be getting on with other stuff! I see now that in the story when the woman cracks open the ointment on Jesus’ feet – she does that because he’s modelled that first to her. He has wastefully expended his love on us and His compassion on us.
I also think I’ve probably got a bit more of an appreciation of the slow work of God in his life and in our lives. I’m learning that he esteems the slow work in other people’s lives as well, that it’s not like a volunteering slot, it is a long obedience in the same direction. Parenting children with additional needs can feel a bit wasteful at times. There were definitely times when I’ve thought, no churches are getting planted because my kids won’t eat, or because I’m really tired. But God was esteeming it.
In what ways have you and your children been blessed and supported by your church family?
Thinking specifically about when we gather as a church for fellowship on Sundays, we’ve received welcome, loads of encouragement and delight – and it is genuinely delight – when the whole church is distracted when Anna brings her own very loud contribution in between two quiet songs or throws her apple across the room. I’ve really appreciated it when leaders lead into it, as well. So rather than just ignoring that something is kicking off in the corner, I’ve found it quite helpful when someone has said “This is Anna, we love having Anna as part of us, we’ll carry on and let Mum deal with it.”
There was a period of about three or four years of special needs ministry on Sundays for Zeke because in the providence of God, there were about 4 or 5 children at a similar ability level who all clicked. We’ve had sensory provision, dark tents, inclusion in the kids work, a sensory den all sorts of things. There’s space in the building, so at the moment Anna sits outside some offices, where she’s got some soft chairs. There’s never been a silver bullet to making church services work, it has always looked different in different seasons. At the moment, I sit where the livestream’s recorded, so that I can feel like I’m part of it. I take communion with the people watching on the livestream so that I can be near Anna but also be a bit connected to church. I even brought a contribution the other week on a post-it note by having it run downstairs!
And in the broader context of the body of Christ, we’ve been blessed by particular individuals investing heavily in our family. There’s a woman in our church who’s given Anna one-to-one support pretty much every Sunday since Anna was two and a half, and she’s nearly 16 now. We tried to have a rota of different people but that didn’t work because it was just too much variation. But I think the woman who’s done that would say there are moments that Anna has kept her in church. We even went for a walk with her every Sunday morning during lockdown so there was a continuation of that investment.
For many parents, it can be a lonely place, if you’re in a church service on a Sunday morning and you want to connect with people but you’re also so aware of your child and what they need. What would be your encouragement to parents who find themselves in that place right now?
Yeah, not to give up. To keep seeking community and receiving grace in unexpected ways. If I’m honest, I have had to spiritually feed myself well during the week because on a Sunday morning, I am distracted and I am not going to take it all in. I’ve been in and out of the meeting for the last 16 years but I still need to go on Sunday to receive grace. It might look different, because it might not mean being in the whole worship time, or in for the preach, but I can receive grace just in the kindness of other people. Even if it’s corridor community, that’s still community. There have been lots of times when people have prayed for me in the corridor, people have encouraged me and stuff like that, so it’s not like I’m outside of the bounds of grace if I’m not in the main hall of a meeting.
And when people say and do things that might not be helpful, I think my encouragement would be to spot where mercy was the aim. Even if it wasn’t quite what was needed in the moment, spot the heart behind people’s words and actions.
What does it look like to make disciples of children with additional needs?
It probably looks less uniform than it does for other families. We’ve tried to take the things that bring our children joy with Jesus as we’ve never cracked a family devotional time. Zeke is really into football so Andrew will often play a game with Zeke and Sam then at half time, he’ll gather them in, and then they’ll pray and say, “Thank you, God, that you’ve given us legs that work.” “Thank you for football.” “Thank you for the chance to play together.” We’re just finding the things that are his delight, and trying to relate them to God, so that those two things are associated for him. Zeke is not big on reading or concentration so for him being active and having a conversation is much better, like walking and praying or football with prayer.
For Anna, one of her words is Jesus, which I’m really thankful for. There was a moment in the A&E waiting room when I was really at my wit’s end, and then she just held my face, and she kept saying, “Jesus, Jesus, Jesus.” It probably got me through that moment. She’ll watch worship song DVDs. She’s definitely got an association with Jesus and church. A lot of it with Anna is me just saying, “Jesus loves you, Jesus loves you” or “Jesus loves Anna.”
Do you have any other encouragements you’d like to share?
There’s an embattlement to being a special needs parent sometimes. I think one of the encouragements, is purposefully deciding that you are going to be a soft-hearted special needs parent. You still battle and fight for your children but it does feel like there’s a fork in the road moment where you need to decide which sort of special needs parent you’re going to be. Are you going to be soft-hearted to the body of Christ?
I think one of my realisations has been that I don’t just have to learn from other special needs parents, I can learn from anyone who’s had some curveball hit their life, or walked through a valley. It doesn’t have to only be people who perfectly understand my situation. I’ve learned to be receptive to other people’s wisdom and kindness and experience of getting through tough times with God.
And if you want to get alongside someone who’s got a child with special needs, you don’t have to be an expert. You just need to love that kid and really want to get to know them as a person.
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Books mentioned: The Life You Never Expected by Andrew & Rachel Wilson