II n a recent video interview, Sophia Nicholls tells her story of why she and her husband Nigel formed the Adventist Special Needs Association (ASNA). The interview was in response to receiving an award for Outstanding Leadership from the South England Conference. She was interviewed by Janice Lendor on behalf of the South England Conference’s Women’s Ministries team.
My journey started on May 21, 1996. I was about to have my first child, Matthew. It was a water birth. I remember lifting him out of the water and looking down at him and thinking that there was something unusual about his face. I noticed that one of his eyelids opened, but the other one didn’t. I prodded around as a mother does, and looked up at the midwife and said, “What’s wrong with his eyes?” She reassured that everything was ok, but within a couple of days, we were taken to Great Ormond Street Children’s Hospital in London where a consultant informed us that our son was born with a condition called ‘Peter’s anomaly (PA), a scarring of the cornea of an eye.
Although he would be registered blind, Matthew would experience some light perception. As he grew older, we became aware that he was not keeping up with his milestones, which caused us some concern. Referrals to specialists confirmed that Matthew had learning disabilities and autism. It would be difficult for us to communicate with him, and he had some very unusual sleep patterns.
Matthew’s birth took us on a journey that catapulted us into a totally different world, one of isolation, exclusion, and exhaustion. It was a challenging time.
The challenges of the early days drew Nigel and I closer together. We spent much time learning about visual impairment, joined a number of family societies, and met up with other parents, but for a while, we felt as though we were the only Adventist family in the UK that had a child with a disability!
In particular, when we went to our church community, there was very little understanding of what it is like to parent a child with additional needs; with autism in particular. Matthew found enclosed spaces difficult to cope with, and wouldn’t sit quietly. Sound and noises would often affect him in a negative way, and so in response, he would scream. It ended up with my husband and I taking turns to attend church. I would often stay at home, or stay in the car with Matthew, while Nigel would join the congregation for worship.
I would sit at the back with Matthew, he would make a noise, others would look around to see what was going on, ‘tut,’ and through their expression of annoyance, made me and my family feel excluded and not part of the church family. We never felt we belonged. I would also get a sense from members that there was something I had done in my past that resulted in having a child with a disability. It made us feel as though we did not belong to the church community.
In the end, I stopped going to church, because the situation became impossible.
In 2000 our family attended the General Conference Session held in Toronto, Canada, a gathering of approximately 65,000 people, with an expectation that at least in this context there would be understanding and the ability to make some provision for people with special needs. We took Matthew to the children’s Sabbath School, but were met at the door with a notice; “We do not cater to children with special needs.” Shocked, we decided that we needed to do something about this within our own church.
On our return to the UK, we placed an article in the Messenger, sharing our story, really as much as anything to find out if we were alone. If there were other parents with similar children, would they like to meet up? Within a couple of weeks, we had a number of families contact us saying, “Wow, great to hear your story; thank you for sharing it. We are experiencing what you are, and it’s great to know that we are not alone!”
That was the birth of the Adventist Special Needs Association (ASNA) which became a charity in 2003. ASNA is a user-led small faith-based charity with two main functions.
- Direct Support – To provide a place where families and anyone with additional needs can feel supported and have a sense of belonging. This includes running residential respite and support breaks, online peer support groups, advice, and signposting.
- Indirect Support – To provide disability training and awareness toward the removal of barriers that prevent access to services and opportunities for people living with disabilities and special needs.
During one of our annual ASNA Carers Retreat, we discovered that a woman was in attendance who had been invited by an Adventist church member. She was not an Adventist and didn’t want anything to do with Christianity. She had come because her son had severe autism.
Our aim at this type of retreat is to give carers an oasis of calm and an oasis of support. Participants attend health workshops, along with having fun together, and this particular woman was impressed and inspired that the Adventist church had this ministry. On her return home, she practiced some of the new lifestyle principles she had learned and wanted to start attending her local Adventist church. To make a long story short, she is now a member of the Adventist church and serves on the ASNA board of trustees.
The heart of ASNA’s ministry is to ensure that anyone with special needs, any parents with a child who has special needs, or anyone who lives with a disability or special needs feels that they have a place where they belong and that God loves them no matter the circumstance. We are all made in the image of God and have value in God’s sight.
We have also wanted to help people understand that if you are living with a disability it is not because of your personal sin. I remember some well-meaning members suggesting that if we prayed hard enough, or confessed our sins, the Lord would heal our son, and he would be able to see. That was told not only to us but also to other families.
I read John 9 and felt very encouraged by what I read there. When the disciples asked Jesus the very question, “Why was this man born blind?” Jesus said it was nothing to do with the sins of the parents. “It was not that this man sinned, or his parents, but that the works of God might be displayed in him” (John 9:3-4).
I feel both humbled and very blessed to be receiving this Outstanding Leadership Award. I believe that God has placed our family in this situation, and feel blessed when I think about the number of people we have helped, supported, and encouraged with our story. I hope and pray that our ministry has demonstrated outstanding leadership, in that sense, to lead people ultimately to Christ. I see that as my purpose in life, using the gift of having Matthew to help others.
If we hadn’t had Matthew, we wouldn’t have started ASNA twenty years ago, we wouldn’t have met so many people and heard so many inspiring stories. Neither would we have experienced individuals and families praising the Lord for ASNA’s help and support in helping them feel that they are not alone. God loves us as we are. We are made in his image and, without question, he loves us. Our family hopes that this ministry has changed people’s lives and has led them to Christ in some way.
This article was adapted and published with permission from the South England Conference Women’s Ministries.