There are positive outcomes associated with faith and spirituality for parents of children with special needs. What you might find surprising (unless you are a parent of a child with special needs) is that being involved in church and religious activities can however be associated with increased parental stress and depression if we do not approach this well (Ekas, Whitman and Shivers, 2009). Ann Edwards reflects...
There is indeed a small amount of research about parents’ experience in bringing children with special needs to church, and it’s sobering. Parents of children with special needs tell us they are unlikely to ask for help (Coulthard & Fitzgerald, 1999). Church is perceived as an “uncontrolled situation”; the unpredictable nature of church can result in the child behaving in a way the parents perceive to be disruptive (Askari et al., 2015). Parents report that negative attitudes are exhibited towards their children with special needs in churches (Howell & Pierson, 2010), with some families leaving their children in respite care instead of bringing them to church (Askari et al., 2015). Most telling is that some families have felt “abandoned” by churches unable (or unwilling) to accommodate their child’s special needs (Breeding & Hood, 2007).
I would suggest that this starts with our initial response to parents, after the diagnosis of their child’s disability. People respond in many different ways – some more helpful than others. Sometimes there is the offer of a listening ear and practical help. Often, there is an offer to “pray” for the child – praying for a miracle cure. Others suggest the new treatment they heard about on A Current Affair. Some remind the family to rejoice in the Lord always! Often, we pray that the family might cope with the “burden”. Indeed – the Australian Prayer Book instructs just this on page on page 47: a prayer “For a child born with special needs” – I’ve included the text, in italics, below.
Living Lord, creator of us all, we give you thanks for the life of [name].
It’s human to want to fix difficult situations. It’s human to want to avoid uncomfortable circumstances. It’s human to want things to be exactly as we expect they should be, to be familiar. It’s human to not know what to do, and to then say things that aren’t actually helpful. None of this is deliberate. Much is well intentioned.
So, how should we respond when we encounter a family that is getting used to a new normal? A family where a child’s different ability means that it’s hard to participate in church? A family that loves their child, yet may be grieving the loss of their plans, expectations, and hopes? A family that faces a new and uncertain reality?
It’s actually very simple, and Jesus and the apostles show us plainly what to do.
Bring the child (and their family) in
Time after time the scriptures tell us that Jesus stopped when he saw the blind, lame, possessed, ill and infected. He stopped, talked with them, removed the barrier to their inclusion, and sent them back to the community (Tataryn & Truchan-Tataryn, 2013).
This is not a justification to wait for a miraculous cure. That seems to me to miss the point. Jesus performed the cure to achieve the inclusion, to restore the marginalised and ostracised to their spiritual community. If we are in fact the hands of Christ on Earth, then we need to bring them in. We must stop waiting for the miracle when we can, in fact, be the miracle.
We need to look out for the parents. Don’t avoid them. Let’s tell them you are glad to see them (even if their child disrupts the service, even if they pass the plate without contribution, even if they are harried and snappy). We must ask them how we can assist. We must love them.
So many of the parents I know who have children with disabilities no longer attend church – it’s “impossible” to ask their child to conform to the expectations of a service (let’s face it, it’s hard enough with a typically developing child). Parents feel judged. They don’t want to change their 8 year old’s nappy on the toilet floor. It’s so hard to actually get there, and manage during the service, it does more harm than good. That’s a tragedy – they have lost their church family at the time they need us the most.
Accept the child as made in the image of God
The child with a disability is made in the image of God. Jesus loved each disabled and ill person he encountered. The implication is clear: we must love these children too, and their families, and see in them the face of Jesus. Every child is a gift to our community, whether or not we would have chosen to make them as God did.
Imagine how it feels for a parent to know that their child is loved by the church community. The joy it gives the parent and child to know that this place is safe, welcoming and accepting. Every child and every family deserves this. Tell the parents that they don’t need to make their child “fit” church. It’s up to the church to welcome their family.
Rejoice in difference – there is no “them”
Jesus was not without blemish at his Resurrection; he bore the wounds of his crucifixion. These wounds make him greater, not lesser. His brokenness is the source of our salvation. Who are we to diminish those with bodies that differ from our own (Tataryn & Truchan-Tataryn, 2013)?
Be aware that parents can respond to a child’s diagnosis by travelling the cyclic journey between denial, anger, bargaining and depression, before reaching that beautiful place of acceptance. Their church family needs to walk with them, love them, and love and accept their child so they don’t need to also grieve the loss of their spiritual home. When you love the child and their parents, when you try to see them as Jesus would, you will see what you can do to help, and you will do it gladly.
“The King will reply, ‘Truly I tell you, whatever you did for one of the least of these brothers and sisters of mine, you did for me’ (Matthew 25:40 New International Version).
We thank you for each and every child born into our community. We thank you especially for the gift of children with disabilities to our communities. Give us the wisdom and insight to support their parents. Show us what we need to do to make sure every single one of your children is included in our community. Give us hearts that love, care and nurture families that the world neglects. Help us celebrate the diversity of your creation, and rejoice in the image of you that we see in each and every person.
In the name of Christ, Amen
Askari, S., Anaby, D., Bergthorson, M., Majnemer, A., Elsabbagh, M., & Zwaigenbaum, L. (2015). Participation of Children and Youth with Autism Spectrum Disorder: A Scoping Review. Review Journal of Autism and Developmental Disorders, 2(1), 103-114. doi:10.1007/s40489-014-0040-7
Breeding, M., & Hood, D. (2007). Voices Unheard: Exploring the Spiritual Needs of Families of Children with Disabilities. Christian Education Journal, 4(2), 279-292. Retrieved from http://search.proquest.com/docview/205447815?accountid=8194
Coulthard, P., & Fitzgerald, M. (1999). In God we trust? Organised religion and personal beliefs as resources and coping strategies, and their implications for health in parents with a child on the autistic spectrum. Mental Health, Religion & Culture, 2(1), 19-33.
Ekas, N. V., Whitman, T. L., & Shivers, C. (2009). Religiosity, spirituality, and socioemotional functioning in mothers of children with autism spectrum disorder. Journal of autism and developmental disorders, 39(5), 706-719.
Tataryn, M. & Truchan-Tataryn, M. (2013). Discovering Trinity in Disability: A Theology for Embracing Difference. Maryknoll, NY: Orbis Books.
Jo Inkpin, Penny Jones, Jeni Nix, Peter Jeffery, Ann Edwards, Elizabeth McConnell