Simon Elliott, priest at St Oswald’s, Netherton is one of the driving forces behind next Saturday’s (26th Sept.) inclusive events and service for those of all abilities. Here the father of two talks openly and honestly about being father to a child on the autistic spectrum, its impact on his faith and why being truly welcoming and inclusive is so important to him.
Simon is very used to having a child run up to him at the most inappropriate times in a service he’s leading. For that child is his son Matthew. Diagnosed as being on the autistic spectrum, Matthews’s experience of church tends to involve him running, climbing, crawling around with one or the other of his parents in tow. That can take some getting used to for folk and really challenges the notion, in many churches, of how we can be truly welcoming and inclusive.
“I notice it a lot in relation to other children in church“ explains Simon “sometimes other parents / carers, especially those newer to, and maybe feeling a bit unsure of, church are very conscious of thinking that their children ought to behave a certain way. And sometimes I want to say don’t worry, look at my son, he’s the biggest tearaway of them all.”
Simon quite keenly sees the paradox in a lot of this. He understands families trying to teach their children what they think is appropriate behaviour at times, and is aware of this sometimes being a struggle when children ask why they have to do this when Matthew is running around etc. “St Oswald’s is great” Simon states, “they have learnt to understand our needs as a family and are very accommodating, but like many families with a child on the autistic spectrum we are reluctant to try new places, say when we’re on holiday, it’s just too difficult.”
Matthew’s assessment came gradually over a few years. Simon and wife Lisa had a realisation that he wasn’t developing at the same pace as other children and early on he was diagnosed with Global Development Delay and later he was also then diagnosed as being on the autistic spectrum. This was not too surprising to either parent.
But it had a real impact on their faith journey. “ I felt angry, I wanted to know why.” Simon confesses “as a pastor it is sometimes easier to find the things to say to other people than to say to / accept them for me; that was, and still is, tough. Now I am sure that my faith is not always looking for the answers. I struggle with the idea I should try to find a reason or purpose for it. The question, why him, why us is not helpful. But I know that God is in it with us, he’s as heartbroken as we are, he journey’s with us.”
Simon and his family have learnt to appreciate the little things. A small step of progress or development is a big thing for them. Matthew has no speech at all, and when things happen like him making a new kind of noise, his eye contact improving, him showing a bit of affection in his own way, they are a big deal.
Grace, Matthew’s younger sister desperately craves attention from her big brother and will often now ask questions about why Matthew doesn’t talk and so on, recently stating “Maybe Matthew will talk to me for my birthday.” And on the odd occasion that he does seem to respond slightly to her with a touch or something, she’s delighted. So when those moments come they are marvellously special, but also at times difficult reminders of where Matthew is at.
“It hasn’t shaken my faith but it has certainly challenged it,” says Simon, “and I have a lot of questions. I have hope for the future but I also have real fears and worries for the future. As Matthew gets older and stronger how will we be able to cope? What will happen to Matthew if Lisa and I as parents can’t cope as we get older or maybe face health problems ourselves? How will this all affect Grace’s life? And I could keep going.
"These are some of many big and hard questions that are always there and significantly impact the meaning of hope for the future. If I dwelt on these thoughts all the time though I would soon be driven mad by it all. A lot of the time my focus instead simply has to be on the day we’re on, taking each day as it comes and dealing as best I can with whatever are the current main issues / challenges / difficulties. I also struggle at times with the reality that I have to juggle roles as minister, Dad and husband, constantly being caught in the guilt of doing one when I maybe should be doing the other, exacerbated by Matthew’s care needs being so high and also not wanting Grace to miss out on things as a result of our whole situation.”
And then at the heart of this is a paradox. “Matthew is who he is, created and loved by God just as he is, just as I believe we all are. His condition is not a sickness as such, he is not ill, just wired differently somehow. As his Dad I love him absolutely and unconditionally just as he is, but at the same time if someone offered me a pill that could change him right now to be able to speak to me, to tell me why he’s happy or sad, to be a lad I could play football with or when he’s older take to the pub, then I would snap their hand off for it. And that causes a struggle for me as guilt can creep in that I’m somehow not grateful enough for the gift that Matthew is to us, or that somehow by wishing these things sometimes it means I don’t love him enough.”
“I don’t have the answers. But it affects the prayers I pray – what does it say about prayers for wholeness and healing? It affects and shapes the ministry I offer.”
Which is why Simon is so passionate about churches creating safe inclusive places to welcome people. “Church is for all but we can often exclude people with our attitudes being off putting to folk. For me the experience of church is not so much for Matthew but for Grace. To give her a place where she can be and where she can come knowing that Matthew’s needs will be embraced.
“Many churches would be put off because there is a clash between spiritual calm and having places for someone like my son. But it’s not difficult as we don’t need to make it all singing and dancing. We simply need to be able to offer a welcoming attitude.”
That’s what the event on Saturday 26th September is about. There will be ideas, support and advice for churches who want to be inclusive in this way as well as safe places for children with a wide range of needs and abilities. All finished with a short, fun, inclusive service.
“We’re not going to grow churches by excluding people” says Simon “and we do this consciously or unconsciously when we can’t accommodate children, and adults, with additional needs. That can change, its not hard to change and the rewards are many. My prayer is that many can join us and gain ideas and inspiration.”
We’re not going to grow churches by excluding people and we do this consciously or unconsciously when we can’t accommodate children, and adults, with additional needs. That can change, its not hard to change and the rewards are many.