Much has been written about the need to support parents of children with special needs – particularly in the shadow of the Greenridge Crescent tragedy in January, and the ongoing Covid-19 pandemic. 

Much has been written about the stress experienced by parents of children with special needs. But not many are aware that they carry a grief that is unique and prolonged. Few are aware that they bear a loss that has no resolution.

For churches to step up holistic care of such members and to address a growing societal need outside its four walls, understanding the nature of this grief and loss is crucial.

Leow Wen Pin, Director of the Centre for Disability Ministry in Asia, sheds light on this grief and loss.

This topic is addressed in the Certificate of Christian Disability Ministry programme that equips lay Christians with the necessary skills to serve in a disability ministry. The course is organised by the Koinonia Inclusion Network in collaboration with the Biblical Graduate School of Theology.

An ambiguous loss

Parents of children with special needs experience a unique and more prolonged form of grief unlike other forms (such as from the death of a loved one). This has been attributed to “ambiguous loss” – a loss that has no resolution.

This concept is borrowed from the field of dementia. The term “ambiguous loss” was coined by Professor Pauline Boss, a therapist and researcher at the University of Minnesota.

In Loving Someone Who Has Dementia, Boss writes that spouses of persons with dementia often face an ambiguous situation: Their loved one is physically present, yet their mind has undergone significant deterioration.

Such caregivers often ask the question: “Is my spouse still the same person I married?”

Indeed, many disabilities (such as autism or muscular dystrophy) are ambiguous, too. For example, they can be ambiguous in their causes (“Why does my daughter have autism?”) or in how the disability will progress over time (“When will my son lose his ability to use his limbs?”).

Such disabilities also exhibit a lack of resolution – parents have to deal with their child’s disability for a lifetime, and worry about what will happen when they themselves pass on.

One mother I spoke to described the experience like this: “I felt my dreams (for my child) dying and resurrecting, dying and resurrecting, dying and resurrecting.”    

What we can do to help

Recognising that parents of children with special needs face ambiguous loss, here are five ways that churches can help.

1. Help them exercise self-care

The lack of resolution means that parents have a lengthy journey ahead. Therefore, developing resilience is critical, and key to this is learning self-care.

Just like how airlines remind passengers to put on their own oxygen masks before helping others, caregiving parents need to address their own needs in order to care effectively for their children.

Cell group members could remind parents to care for themselves and encourage them that such care is not selfish.

Cell groups members could also complement such reminders with community care. For instance, they could offer to take care of the child with special needs (after appropriate instruction and familiarisation) to give these parents a break for much-needed self-care.

2. Provide a safe space to release their emotions

Parents of children with special needs often have to cope with a whole range of confusing emotions (such as anger, guilt and frustration) during their caregiving journey. Churches need to give them space to air their emotions and manage their feelings in a healthy manner.

This is where the Book of Psalms is so instructive. The psalms remind us that we can air our frustrations and anger before God. Indeed, God is generous enough for us to be emotionally honest before Him. He has even given us the words of the psalms to teach us how to lament when we are lost for words.

Churches could further support this process of lament by giving such parents listening and supporting communities in which they can share and weep with others. After all, aren’t we supposed to “weep with those who weep”? (Romans 12:15)

We can also learn from Singaporean churches such as Adam Road Presbyterian Church, Church of our Saviour, and Zion Bishan Bible-Presbyterian Church that have established special parent support networks. 

3. Encourage them to release control to God

A facet of ambiguity in disability is the loss of control – whether it is the loss of control over bodily or mental functions, their child’s behaviour, their child’s future and so on.

Churches could help parents grow to accept lower levels of control and adjust to this new normal.

In contrast to facets of society that may be obsessed with control, churches could remind parents that Christians have the confidence to cede control, for we have a good and almighty God who loves us. This process can also be a journey of discipleship for such parents as they recognise their own limitations and submit to God’s sovereignty.

This is also where the spiritual discipline of the sabbath is so relevant for such parents – for it involves letting go.

As American theologian Walter Brueggemann reminds us: “Sabbath is not simply the pause that refreshes. It is the pause that transforms … Sabbath is an invitation to receptivity, an acknowledgment that what is needed is given and need not be seized.”

However, parents used to caring for their children 24/7 may not feel that they have the luxury to rest or even to pray.

This is where practical support from the rest of the church comes in. Through simple gestures of love and care, churches can remind these parents that God will take care of them, while giving them the mental and emotional space to rest and let go. 

4. Journey with them to find meaning

Parents of children with special needs often struggle to make sense of their situation. Churches could journey with them to find meaning.

Call Me By Name, a book I co-edited, contains interviews with parents of children with special needs. In it, one mother noted: “I suffered a period of self-condemnation … Time after time, I questioned God and asked why this has happened, especially when people asked me what I had done to deserve two children with special needs.”

Likewise, a father said: “During the first year, after (my son) was diagnosed (with autism), there was a lot of denial, rejection, and questioning. There was also a lot of casting of blame: Did I do wrong? Was it my sin that got him into this? I even blamed God for doing this to me.”

Such a struggle is common. The faith community can support by facilitating a journey of discovery for such parents. Spiritual direction and pastoral counselling, whether provided by a member of clergy or a suitably-trained lay leader, can be extremely valuable.

We should be very careful not to force a particular viewpoint, but focus instead on letting parents discern for themselves, how God is working in their lives.

5. Help them to tell themselves new “stories”

We all tell stories about ourselves to ourselves. However, when we or a family member is diagnosed with a disability, the stories we’ve told ourselves break down.

Take for instance the boy who always wanted to be footballer but is now progressively losing movement in his lower limbs. He now has to craft a new vision of the future for himself. His parents, too, also have to revise their own hopes and dreams for him.

This is not a simple process but the Church is blessed here with good news – the gospel.

Indeed, when we receive the gospel of Jesus Christ, we are grafted into God’s story. This is why the Apostle Paul tells all Christians: “You are no longer strangers and aliens, but you are fellow citizens with the saints and members of the household of God.” (Ephesians 2:19)

So, while disability is often difficult and disruptive, the gospel allows us to rewrite our life’s story in the light of God’s enduring story.

While we may be tempted to think that a child with special needs has less worth, the gospel reminds us that God does not. Jesus died for all of God’s beloved children, disability or no disability. (Ephesians 4:7, 15-16)

When we journey with parents with patience and sensitivity, we can help them rediscover their own stories in God’s bigger story.

The whale’s purpose

I was especially touched by one father’s story recorded in Call Me By Name.

He said: “I hate to admit to it, but sometimes I have asked God why we have children with autism, especially when it is not just one child, or two, but three!

“But there is one story that really resonated strongly with me, and continues to do so in my journey with my three children: The story of Jonah. But the character that I like to be is not Jonah, but the big fish, the whale!

“I believe that the whale must have been reared in the sea by God, fed over the years so that it could fulfil its purpose to be at the right place at the right time to eat Jonah at the precise moment he fell into the sea, so that Jonah could be kept in its belly for three days.

“Likewise, I see myself as that big fish. My purpose is to prepare my three sons for the rest of their lives, and I need to stay true and obedient to this task that I have been called by God to do.”

This father’s recognition of his vocation as a nurturer of his children did not come overnight. It was the result of persistent self-reflection, shaped through a life of faith lived in a community of faith.

The Bible and Christian tradition, when used in an informed manner, provides us with a deep reservoir of resources to exercise care for others. With such grand God-given resources, it seems only right to diligently seek to love and care for others.

As Jesus reminds us, “By this all people will know that you are my disciples, if you have love for one another”. (John 13:35)

The five approaches are just some of many ways that churches can support parents of children with special needs in their midst and also in the larger community. They were based on Pauline Boss’ Loss, Trauma and Resilience (2018), but adapted to address Christian parents of children with special needs.

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