Going that extra mile with children and their parents
14 MINUTE READ
Another day of seeing a child developing differently. That is what the parent told me. There is silence. There is hesitation. Plenty of pauses. In between the child demands the attention of the mother! I wondered! She knew exactly what the child wanted. We finished the consultation. Deadly silence. More questions and sometimes tears. Hope and future buried in those questions! Lord we are all human – can you please answer those questions for me!
This child is now included in the 15% of the world’s population with disabilities. Disability can be visible and or invisible, progressive or non-progressive. The pain and suffering for the parents and child become a reality to reckon with daily.
Along with the diagnosis of “disability” comes countless medical visits. Each encounter and conversation takes root in the hearts and minds of the parents. Disability takes its toll financially, emotionally and relationally. This alters family dynamics and impacts the many individuals who play a part in the life of this child.
There are many scholarly and theological articles on this disability. The role of religion, models of care and the contentious issues in disability have been discussed. They highlight the tensions, failures and societal progress in caring for the disabled. Needless to say, there are many more that need our attention… and desperately. In reality, the actual needs are awareness, awakening, action and genuine and complete acceptance of all children with disabilities. In other words, a willingness to go that extra mile with the child and the parents.
“Even in Jesus’ time, many continued to live with their disabilities.”
We will not have the perfect world on this side of the return of Jesus Christ (Revelation 21). Questions will remain unanswered to the dissatisfaction of all the stakeholders, especially the parents and children.
As expecting parents, we will always have dreams and aspirations, through the eyes of the world, for our children. These dreams and aspirations are shattered when there is unexpected “bad news” before or after the birth of the child. Initially, there may be shock and disbelief. There may also be anger, frustration, denial and disappointment. Then the ultimate realization gradually sinks in, “I now have a child with different ability – impairment or disability”.
How God sees disability
The Bible is not silent about disability. Jesus spent a lot of time with people with disabilities. He healed many, but not everyone. Even in Jesus’ time, many continued to live with their disabilities.
The Bible says “God formed my inward parts; God knitted me together in my mother’s womb”(Psalm 139:13). We are fearfully and wonderfully made. He made us all by one blood for His purposes (Acts 17:26).
There were many disabled at the side of the pool (John 5:1-8). This one man was unseen for 38 years, but Jesus saw. Learning about him, Jesus went to him and healed him. What about the others at the poolside who were not healed?
The Old Testament makes many references to disability too. The passage in Leviticus 21:16-24 teaches us another theological point in the context of God and disability. To enter the holy of holies in the tabernacle, a high priest without blemish, physically and in the heart, was needed.
In the New Testament, Jesus became that great high priest. The real issue is spiritual, not physical imperfection. Physical imperfection can still enable you to serve God in your calling. As followers of Jesus, we are “a chosen people, a royal priesthood, a holy nation, God’s special possession, that you (we) may declare the praises of him who called you out of darkness into his wonderful light” (1 Peter 2:5,9). We can all function as a member of the priesthood with any level of ability.
Again in the Old Testament, the stutter of Moses teaches us about God in disability. The Lord said to Moses, “Who has made man’s mouth? Who makes him mute, or deaf, or seeing, or blind? Is it not I, the Lord?” (Exodus 4:11). Moses argued with God to prove he was not suitable for the calling. God did not take away the stutter but provided a solution in Aaron. That did not diminish Moses’ calling. The same applies to those born with special needs.
“When we see a physical limitation, God sees beyond it.”
Jesus came to give all of us abundant life (John 10:10). Through Jesus Christ, the issue of quality of life is addressed: “This is how God showed his love among us: He sent his one and Only Son into the world that we might live through him” (1 John 4:9). Jesus is interested in our present. Life with weaknesses and abilities with Jesus is infinitely better than a perfect body without Jesus. “If your arm is offending cut it off!” (Matthew 5:30). This is a figurative quote by Jesus.
Jesus is just as interested in our eternity. When we see a physical limitation, God sees beyond it. His is an eternal perspective. For what is seen is temporary, but what is unseen is eternal (2 Corinthians 4:18b). Revelation 21:3-4 reminds us, “They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain.” Jesus is desperate to ensure that we all have a home in eternity where there will be no more pain, suffering, or disability.
(God made us all in his image as we were formed. He knows, sees and comes to us. God saves me – that’s definite. He heals me according to his sovereign will which is perfect for me.)
How the family and child see disability
Thinking back to the child with disability…
I imagined this child standing on the seashore with the parent. The sea was roaring. People were busy with their own activities. The waves were relentless but did not fail to reach the shore. Some were gentle and soothing to the feet. Some were strong and rough, demanding strength and ability to weather it. Then on and off the forceful waves hit the shore. The parent had to hold the child tightly to protect the child from being washed into the sea! Both of them tumbled but rose up again to face the next wave.
This is symbolic of what I have seen over many years as a medical practitioner.
The waves come in the form of medical challenges, diagnostic dilemma, challenges in accessing services, the uncompromising health system, and even heartless professionals (not many!). Then, there is often family crisis as well in these already struggling families. For example, the sibling of a child with disabilities misbehaving in school or in the community, or unexpected sickness or death of a caregiver. The list of problems is endless.
The family’s struggles are acknowledged. However, communication may fail. There may not be time for each other and mental health may not be optimal. Relationships within the family may be at risk. Indeed, the risk of a family breakdown is higher after a diagnosis.
And the child? This child is no different from any other child created in God’s image. He/she is looking for love and joy. The child has hopes, expectations and dreams about their future. This child, no doubt, is of the same worth as any other in God’s eyes and has access to the same unlimited grace and love.
Yet, in this life, this child is faced with many challenges. He/she must deal with pain, vulnerability, suffering, disconnection, and potential dependency. The child may be confronted by societal rejection, simply because he/she is viewed by others as having disabilities.
“Just like any other child, there are many things that this child cannot control.”
Just like any other child, there are many things that this child cannot control. The difference for the child with disability is that at times, it seems like no one has any control, not even the parent! To ensure some control over the quality of life of the child, obtaining financial and therapy assistance at the crucial stages of development and finding an appropriate school will be vital for this child.
We tend to refer to people with disabilities as a “single group”. In reality, individuals with disabilities are diverse. Even two individuals with the same disability may have quite different needs. For example, a child with a below knee limb deficiency tends to have better mobility with a prosthesis than a child with a more extensive limb deficiency. This is because he/she has better control of the prosthetic leg. Or if the limb deficiency is caused by a traumatic brain injury affecting motor functions, the challenges are likely to be quite different and probably greater.
Another example is a child with learning difficulties. Learning difficulties affect children with normal intelligence as well as children with below normal intelligence. Moreover, the learning difficulties experienced by each child may be quite different. Some children may have a specific learning difficulty in reading, writing, or drawing and so on. Other children may have multiple learning difficulties.
Autistic spectrum disorder (ASD) is yet another example. Children with a diagnosis of ASD may be considered the same by society but the condition affects each child differently and each child’s functionality is unique.
Then, there is also the environment that makes life difficult for the child and his/her parents. The disability support system wants to categorise each child to enable access to government-funded disability services. This is not always possible. There is pressure on all stakeholders who are expected to deliver. We need compassion to consult. We must collaborate. And we may need to delay the diagnosis and plan ethically. The virtue of waiting is wonderful! But as a health provider, will I be allowed, or will I be criticised, or even penalised?
Apart from care, what else does the child need?
We can learn a few lessons from reading the story of David and Mephibosheth (2 Samuel 9:1-13). David had become the king of Israel. He inquired about his friend Jonathan and his family with the desire to express his gratitude, although David had previously been hunted by Saul, been through war and treated unfairly. Ziba, a servant of Saul’s household told David, that “There is still a son of Jonathan, he is lame in both feet” (v.3 and 13). Mephibosheth, the son of Jonathan, was crippled since he was dropped as a baby by his servant (an acquired disability). When Mephibosheth met David, David reassured him, provided for him and invited Mephibosheth to always eat at his table. This would have given Mephibosheth self-esteem and identity and restored him back to the community he belonged.
(We need to reassure, provide and place the child with disability alongside us, to build and develop his/her self-esteem and identity, and fit into a community and have others to relate to for the rest of his/her life.)
What is the Christian response – you, me and the church?
What is our attitude?
Sometimes I wonder, “What happened to the sharing and caring that we are taught in church?”
I grew up in a home with a close relative who had epilepsy until she died. On more than one occasion, she experienced seizures during the church service. At the time, I felt embarrassed. However, I appeared strong to support my mother in helping our close relative. From these experiences, I learned some lessons of practical Christianity!
One of the most critical lessons I learned is the importance of showing compassion and living compassionately each day. I need to do this. You need to do this. Thankfully, there are many compassionate people around.
Why is it that some people are not moved? Is it because of not knowing? Or because some are unfamiliar with the concept of living, responding and caring for the vulnerable, marginalised children and the families? Why do some individuals protest and complain and exert their rights if they are asked to do something at work without being trained?
Like many medical practitioners, I want to help. However, the families can be demanding, unreasonable, or too naïve and in denial. There may be cultural differences, different values, different expectations of the social system. Uncertainties may lead to more uncomfortable situations. Sometimes, I become doubtful of my ability to respond. In those situations, I ask the Lord to help me take a step in faith. I remind myself to be inclusive in an individualistic society. As the Bible teaches, look after the welfare of others (Philippians 2:4).
As Christians working in health, do you take time to understand and seek God’s understanding? When did you last take the time to consider?
Do you understand the difference between healing and curing? (My thinking is the former is the removal of the oppressive symptom and the latter is a physiological reconstruction of the physical body or function).
Often, it somehow feels more comfortable to do something, rather than understand and learn more about something. The story of Mary and Martha comes to mind!
What is church’s attitude?
I would say the church has a generally healthy attitude towards disability. Of course, there is always plenty of room for improvement. There is a collective effort to make genuine adjustments in accepting all. However, the church is made of individuals. Each of us needs to play our part. We all need to be the change we want to see. Let us encourage others in the faith community, especially those who have not considered this issue.
Jesus teaches us to love one another and he helps our love for others to grow. Nevertheless, we are human, and therefore we are not blameless or perfect. Love cannot be manufactured. The church needs to grasp the difference between being good and kind, to valuing and loving life regardless.
The Bible clearly demands that we do to others what we wish others would do to us (Luke 6:31).
Despite advances in science and technology, the statistics on disability, both in adults and children, are not improving.
For the child with disability and his/her family, may we show the love of Jesus.
Empathy and sympathy alone may not address the real need. Couple empathy and sympathy with love in action. For example, fixing the ramp for the wheelchair is practical help. Add to these, continuous support and prayer in full measure. The Bible calls us to pray without ceasing (1 Thess 5:17).
Blaming the church and urging the church will not improve the issues that come with disability. The needs of the child with disability are diverse and change with age and different circumstances. Therefore, we need to embrace disability and make changes together, so that we can provide the needed support and understanding.
As we saw in David, the grace of God and his love flows through us. This should motivate us to be gracious to others, regardless of their appearance or ability.
Focussing only on the deity and divinity of God and minimising relationship (Isaiah 57:15) can be dangerous as it may create blind spots in our spirituality. Care and compassion arise from relationships.
Government deficiencies and the limitations of care providers are unlikely to improve rapidly. Moreover, governments and care providers may not necessarily share our views and values. These are often the key targets for criticism.
What is needed is a transformation in all of us. We need a Christ-like heart. A heart of love, acceptance and sacrificial caring of others. We need to live intentionally, looking out for everyone around us regardless of ability or disability.
Even if the diagnosis is reinforced and all the needs and supports are optimal, neat outcomes aren’t the norm in most areas of medicine. Many doctors and healthcare workers carry this weight, but kind words can soften the blow of bad news, and empathy and understanding can undoubtedly ease the burden.
There is no greater comfort than human connection. And the connection is even more meaningful if we are connected to Jesus Christ because in Christ, we have eternal hope.
My day at work is over…
All the things I have discussed above rushed through my mind. The many conversations and phone calls with therapists, teachers, child care and disability workers and government agencies are echoing in my ears! I know I have tried. I don’t know if my efforts were enough. I feel encouraged that I had some time with this child, to look, listen, touch and play a part as a health professional. Maybe I helped a little or maybe I upset the parent! I reminded myself, again, I am also a mere human. God willing, I will return tomorrow and do it all over again with another child and his/her family, believing that it is my calling. Trusting God to provide for me and for them. He is ALL SUFFICIENT.
Dr Mithran Coomarasamy Dr Mithran Coomarasamy is a Paediatrician working in the Western Sydney in Australia, both in the public hospitals and in private consulting practice. He is also trained in Developmental and Rehabilitation medicine and has been leading a developmental diagnostic team for many years.