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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 communities to step up holistic care and to address a growing societal need outside its four walls, understanding the nature of this grief and loss is crucial.
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 those with special needs
Recognising that parents of children with special needs face ambiguous loss, here are five ways that society 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.
Communities surrounding such caregivers of those with special needs could remind them to care for themselves and encourage them that such care is not selfish.
They 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.
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2. Provide a safe space to release their emotions
Parents of children with special needs often have to cope with a range of confusing emotions (such as anger, guilt and frustration) during their caregiving journey. We need to give them space to air their emotions and manage their feelings in a healthy manner.
Churches such as Adam Road Presbyterian Church, Church of our Saviour, and Zion Bishan Bible-Presbyterian Church as well as organisations such as CaringSG and SPD have established special parent support networks.
3. Encourage them to release control
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.
Supportive communities could help parents grow to accept lower levels of control and adjust to this new normal.
However, parents used to caring for their children 24/7 may not feel that they have the luxury to rest.
This is where practical support from the rest of the community comes in. Through simple gestures of love and care, society can remind these parents that they have support, while giving them the mental and emotional space to rest and let go.
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4. Journey with them to find meaning
Parents of children with special needs often struggle to make sense of their situation. Communities 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 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. I even blamed God for doing this to me.”
Such a struggle is common. The community can support by facilitating a journey of discovery for such parents through counselling and walking with them in their journey.
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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 a boy who always wanted to be a 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.
When we journey with parents with patience and sensitivity, we can help them rediscover their own stories in a new light.
Leow Wen Pin is Director of the Centre for Disability Ministry in Asia
This article has been adapted from Salt & Light.
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