Doing church with our little girl who has special needs
It’s a team effort to help Michelle feel genuinely included, says her mum Jonene
I help lead the singing at the 9am family service at my local Anglican Church on the North Shore in Sydney, New South Wales. When I look out at the congregation I see a mix of expressions on people’s faces. They generally look happy but there is no one who comes close to the joyful expression on the face of my 8-year-old daughter, Michelle, who has Down Syndrome. Michelle is always beaming while she stands on a pew and sings at the top of her voice.
As a family we attend church every week and Michelle absolutely loves coming along. However, this hasn’t always been the case. When it comes to sharing our faith with Michelle, enjoying corporate worship has been the greatest challenge for my husband, Craig, and I.
Parents and the church need to work together to seek to cater for the special needs of their child
Craig and I met at church and have faithfully attended small groups and church on a weekly basis throughout our 13 year marriage. After being born, Michelle’s very first outing was to the family service on Christmas Eve at our church where we had been parishioners since moving to the area six months earlier. Craig and I love going to church and believe that attendance at a weekly service is key to discipling Michelle and her younger sister, Verity. In order for us to share our faith with our girls, and in particular Michelle, we feel it is important to convey what it is like to belong to, and be included in, the family of believers.
The dictionary definition of “inclusion” is the action or state of including or of being included within a group or structure. We are encouraged in the Bible to “do good to all people, especially to those who belong to the family of believers” (Galatians 6:10). For different reasons, children with disabilities have not always felt welcomed at church. Perhaps they have been hindered by physical barriers to accessibility or maybe they were held back by the loving action of parents or carers who feared distraction or disruption to the weekly service. But just saying that a child with special needs is “welcome” does not mean they are included or are made to feel that they belong to the family of believers.
Rather than expecting a child with a disability to conform to a rigid program, our experience is that parents and the church need to work together to seek to cater for the special needs of their child – in order to truly include them.
Both Michelle and Verity went to crèche and have progressed through the various children’s groups. We have faced a number of challenges with Michelle because her developmental level is well below other children her age, her speech can be difficult to understand and she is not able to follow age appropriate directions. She also has behavioural challenges associated with her disability including a tendency to be stubborn, inflexible and she struggles with emotional regulation and appropriate expression of emotions. As a result, Michelle has required substantial support by us and many people involved in children’s ministry at church from the time she reached the toddler aged group.
Due to the inevitable delay in the development of Michelle’s speech and reduction in her speech intelligibility, Craig and I have been using Key Word Sign with Michelle since she was a baby. Key Word Sign is the combination of manual signs and natural gesture and is used to encourage and support language development in children and adults with communication difficulties. It is used internationally and adopts the signs of the host country so, in Australia, we borrow signs from Auslan (Australian Sign Language) which is the native language of the Australian Deaf community. I worked with the co-ordinator of the toddler group to convert the actions of many of the songs that they were singing to Key Word Sign. This change was incredibly well received by Michelle together with the parents and children who attended the group.
Michelle expressed that church made her feel sad, which was heartbreaking.
Michelle is verbal but she still demonstrates difficulties with her speech clarity and articulation of sounds so there is an overall reduction of her speech intelligibility. Over the past five years I have developed the Key Word Signs for a number of songs that all of the primary aged children enjoy in the kids church. Occasionally, they also perform them in the main church service. As a result, Michelle, her peers and leaders now have the tools to better communicate with each other which ultimately provides a sense of belonging for Michelle.
Michelle stayed in the toddler group well beyond being a toddler but when her sister reached the age of attending the group we tried to move Michelle to a group with her school-aged peers. This failed dismally because there weren’t any songs and the lessons were pitched way beyond her level. The theory was that it would be ‘nice’ for Michelle to be with her peers and ‘nice’ for them to get to know Michelle. Unfortunately, Michelle hated going and it wasn’t edifying for anyone.
If I was able to get Michelle over the threshold and into the room then she quickly tried to escape or could be found sitting under a stack of chairs as far away as possible from the group. It didn’t take long for this to translate into a reluctance to attend church and culminated in Michelle expressing that church made her feel sad which was heartbreaking. As a result, we decided to take Michelle back to the toddler group and, because of her size difference to the other children and challenging behaviours, it meant Michelle needed a one-on-one helper.
Michelle has seen Mummy lead the singing in the main church. When she finally graduated from the toddler group and joined kids church (skipping the Kindergarten group), she wanted to get on stage to lead the singing. Michelle loves music and loves to sing but the only trouble is that she is terrible at singing! The children’s minister lovingly supplied a microphone that was no longer working and customised it with stickers and Michelle’s name and she now jumps on stage and sings at the top of her voice during the introductory worship session. Barely a word may be intelligible but, just as the “…Spirit himself intercedes for us through wordless groans…” (Romans 8:26 -27) when we don’t know what to pray, I trust that the Spirit intercedes when Michelle sings her heart out and God hears and understands every precious word.
Michelle now feels genuinely included …
Michelle loves kids church and when she arrives, she proudly picks up her microphone and takes her place on stage to sing after the talk.
Michelle now feels genuinely included thanks to the devotion of the children’s minister and many who are involved in children’s ministry at our church. We are grateful to God that our church has not only embraced Michelle but helped her become an active participant of the community.
The Bible tells us that “…God has put the body together, giving greater honour to the parts that lacked it, so that there should be no division in the body, but that its parts should have equal concern for each other” (1 Corinthians 12:24-25). If our churches are to shine a light before others and help people with disabilities feel as though they belong in God’s family, they need to work hard to go beyond just being welcoming – and be genuinely inclusive. Only then are we demonstrating that we “…love the family of believers” (1 Peter 2:17) and children with disabilities and their families feel like they belong in God’s family and the church community can also benefit from the indispensable gifts of people with disabilities.