Ahead of the Open the Box Conversation: "Open to all?" on 24th June at St Johns, Waterloo, Local Missional Leader, Rachel Bray, explains why she is sharing her story about her experience as a parent of autistic twins.
Rachel, tell us why you've decided to share your parenting experience at this Open the Box Conversation?
I have three boys, two of whom (non-identical twins) are high-functioning autistic, now 20 years old. The journey of parenting them thus far has been full of joys, sorrows, crippling loneliness at times and wonderful inclusion and shared-ness of lives at others. I am no expert but I feel I have a story to share about what it's been like for me as a mum, and as a Christian, which I hope will help open up conversations with those who want to be welcoming and inclusive but aren't sure how to go about it, as well as encouraging others to have a voice, and to share their own stories.
Why do you believe it's so important to hear from families whose children have a range of disabilities or special educational needs?
Through being a parent, and also through being a governor at a special school for high-school age young people with autism, I have met many parents of autistic children and young people. We as a family have been blessed by the church families we have been part of, but sadly, time and again, I have heard the tale too many times of people who went to church with their children in the early years, but it became too hard, they felt rejected and they stopped going. We have to do better as church – to listen, to welcome and to include, so that not only the parents and carers but these precious children, young people, adults and their siblings are given the opportunity to encounter God's love for themselves. If we get it ‘right' with parents; we will surely more often than not, be on the right track with their children.
What kind of challenges did you face as a parent in church with your twins?
The challenges have been different at different stages of their and our life. Church is also generally a conformist place, so having children with a social disability in a church setting has had its particular challenges.
For me, the hardest time was pre-diagnosis as I was very isolated. As toddlers, some of their behaviours were unusual and at times challenging which was hard to understand ourselves, let alone to explain to others at church and made us want to withdraw from social situations. Diagnosis made things easier as at least it gave us a way in to explain things but our sense of ‘belonging' particularly in those early years was majorly tested. Some people went the extra mile – which blessed us enormously; many were gently accepting; others judged and that hurt.
As they got older, going to church involved one of us always being in the children's groups with them, missing out on the ‘adult' times of worship and teaching, so we were rarely able to be in worship together. There were times when the boys didn't want to be at church and we had to find a way to navigate that. And now as they are older, it's still challenging in a different way as they currently dip in and out of church as many young people of this age do & we still have to be much more ‘hands on' parents in ways that are different to many parents.
Why would you encourage parents to come along to this Open the Box Conversation?
Mine is only one story. It will be different from everyone else's. Everyone has something to share, that we can all learn from. You might take encouragement and strength from something you hear that Saturday, realising you are not alone. Also sharing your story might just make a difference to someone else and help them with whatever they are facing, or encourage a church leader to help his/her church be more inclusive. I thank God for all the parents I have met, listened to and shared with over the years. My life and that of my family are the richer for it.
What benefits do you think that those involved in working with children youth workers, family workers in our diocese will gain from coming to this event?
If I could say one thing to them it's come and be encouraged, enabled and empowered in your wonderful and invaluable ministry. Come and listen to those who will share their stories, gain insights and empathy, and ask your questions. It will help you welcome, support, come alongside and encourage those who you meet with disabilities and their families and networks so they too can encounter the love of God as you have and find their own unique place in the body of Christ.
As a parent, what do you hope the outcomes from the event will be?
That I too will learn from the experiences of others, be encouraged that as a Diocese we are asking good questions, working hard at understanding how we can be genuinely inclusive of all. My prayer is also that if we learn to do that better as church, more children, young people and adults with disabilities, and those who care for and walk alongside them, will be drawn into personal relationship with God and grow in their faith as disciples, and that together we will all learn more and more what it means to be part of the interdependent body of Christ to which we all can belong.