There are judgmental questions from relatives, friends, neighbors and even people they meet in everyday life. They became more stressful and thick-skinned to face others who were misinformed about ASD diagnosis because children with autism look quite “normal”. The invisibility of autism related symptoms may only be observed through behavior.
Added to the distress is grief and even anger for the loss of hope of a bright future for their children, the controversy surrounding its cause and effective treatments, as well as their own self-worth and competence as parents. Some parents have feelings of punishment or doubts about the goodness and mercy of God, and found God ignoring their cries for help. The question “what does the future hold?” may be haunting them from time to time involving other risk behaviors like suicidal thoughts and actions.
In the midst of human history, suffering seems to be an unpredictable, unavoidable and universal phenomenon. It occurs to people of different ages and genders, any ethnic group, any status, and disregarding any religious background. Life is hard. No one is exempt from affliction. Christians are no exception. Nevertheless, Scripture confirms that “we can also rejoice in our suffering, because we know that suffering produces perseverance; perseverance, character; and character, hope” (Rom. 5:3b-4).
Suffering can be a mystery without known causes, and may never end during an individual’s life. Nevertheless, God offers the ultimate solution of redemption in Jesus Christ. To endure the challenges in raising a child with disability, strong faith in the all-loving God can offer meaning to the seemingly misfortune and suffering for these parents. God’s assurance of “but the righteous will live by his faith” (Hab. 2:4b) help these parents to navigate suffering on earth with peace and grow in experiencing God’s grace and love, awaiting for the future glory (Romans 8:18).
Jesus said, “But when you give a banquet, invite the poor, the crippled, the lame, the blind” (Luke 14:13, NIV). He gave his church a mission to minister to those who are under-privileged, marginalized or with disabilities with his gospel and his love. Paul encouraged the Corinthians that God “comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God” (2 Cor. 1:4). He further emphasize the unity of believers in Christ, illustrating his teaching of community living with the analogy of a human body made up of different parts in 1 Corinthians 12. He cautioned “those parts of the body that seem to be weaker are indispensable, and the parts that we think are less honorable we treat with special honor.” (1 Cor. 12:22-23). As part of the body of Christ on earth, Christian parents of children with autism can experience God’s presence through local churches as God’s hands to give a caring touch, as his feet to walk alongside, as his voice to speak words of comfort.
Local church can become the comfort zone and resting place for parents with children with disabilities including ASD to be connected to God, who is the biggest source of strength and hope they can find. Special needs ministry can foster a caring and supportive atmosphere to embrace these special families and can be designed for three church groups.
The first group are individuals with special needs who are God’s beloved children, same as everyone else. Within RHCCC, structured programs similar to the format of Sunday School, separate or integrated with supporting caregivers, are offered based on individual cognitive and physical abilities on Sundays. These children can learn about God and the Bible, and experience God’s love from those serving them. This would also allow their parents a peaceful time of worship with other brothers and sister, maintaining a harmonious and growing relationship with God.
With increasing number of the children growing into young adulthood, no longer in school and not working yet, a new ministry, Abundance Club day program, is offered since January 2019. Name of this program is based on John 10:10b that Jesus came that we may have life, and have it to the full. Our vision is “PDF” – Potentials to be nurtured based on God’s will and gifts for them, Dignity for them to be respected being created in God’s image and Fun and meaningful activities they enjoy.
The second group are family members including parents and siblings. Many parents come to RHCCC trying to find programs for their children, instead they are encouraged to accept what life with a child with ASD brings, and cope with related stressors by God’s grace. As they submit to accept Jesus as their Lord and Savior and be nurtured to mature in their faith in God, they can find hope, strength, meaning and life purposes to continue their life journey in God’s presence with peace and joy.
Moreover, direct caring support are given to the parents as well as the siblings in the format of parent support group and sibling fellowships. They can be more open in a welcoming environment to share their pain with other church members, and to be assured of their belonging to the body of Christ. They can also use their experiences to help other parents going through the same adversities. As they serve other church families, not just being supported and cared for, they can build up spiritual networks for themselves.
The third group are other believers of all ages in the church, including students who are peers of individuals with special needs. Very often, fear and ignorance keep people from making contacts with those with disabilities. They may even react in a negative manner unintentionally towards the individuals and their families. Awareness about those who are different are promoted to keep the congregation informed, and to equip those with a passion to serve these families with related skills, information and resources.
While serving these families, these serving teams can witness personally God’s work in these hurting families in spite of the disabilities of their children, and to have their own relationship with God strengthened in the process. They connect with these families and contribute to their well-being as member of the church, while at the same time celebrate lives with them as children of God, practicing the “one another” biblical teaching.
Special needs ministry is an integral part of every church to reach out to the communities of individuals with disabilities and their families with acceptance as modeled by Jesus in welcoming the under-privileged group to his great banquet. The purpose is to allow these families and the church congregation to walk life journeys together as a compassionate community towards wholeness for everyone involved.
Serving families with children with ASD requires perseverance just as the parents have to endure all stressors to continue to bring up their children. It is a life long journey to walk with them as they transit into various life stages, each with different challenges. The amount of work and commitment to devote manpower and resources to these families with children with ASD can be huge and intense, but it is worthy for God’s kingdom and can be accomplished by God’s grace.
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Do you know about Autism child and their families?
Autism spectrum disorder is a life-long neurological development disorder with a wide variety of symptoms and behavioral characteristics on a continuum in varying degrees from mild to very severe. There is no specific underlying cause being identified yet and no known total cure, causing more behavioral challenges and higher demand of daily needs at each life stage. Individuals are characterized by three main impairments affecting social interaction, language and communication, as well as restricted interests and repetitive behavior.
Due to their inability to communicate and understand reciprocal social behavior, children with ASD may have difficulties building up friendships with their peers. They can be overly dependent on routines and their five senses can take in either too much or too little information from the environment resulting in meltdowns agitated by sensory sensitivity in routine changes. Other challenges are regulatory problems, self-injurious behavior, physical aggression, loud and repetitive verbalizations and behaviors. Their restricted interests frequently interfere with family functioning.
Job related interruptions for working parents would affect the financial income essential for the family. Stress related to finance is common as it takes very high costs for medical expenditure, special diet expenses, intervention treatment, alternate therapies and various training programs. Parental relationship is affected tremendously by these stressful life demands leading to higher divorce rate.
Normally there are four stages of pre-diagnosis, diagnosis, post-diagnosis leading to the final stage of acceptance and adaptation. Children at birth may not show any signs of disorder. Parents noticed something abnormal in language, pointing and awareness, rituals and behavioral problems, eye contact, and sleep. Incorrect diagnosis and criticism by general practitioners created misunderstanding, doubt, anxiety and self-blame. This overwhelming emotion was described as most difficult to bear during pre-diagnosis. Stressors were triggered by the long diagnosis waiting time which was distressing and difficult to understand for the parents, creating delay for intensive behavioral intervention which was crucial for early intervention.
Nevertheless, receiving a confirmed diagnosis of ASD later in life is often a shocking trauma, resulting in intense emotional reactions. Denial may also be experienced for an extended period. Parents varied in their response levels due to different individual condition in this wide spectrum of disorder, unique family circumstances and different coping abilities between mothers and fathers. When the proper diagnosis was eventually given by specialist in autism, the parents were relieved to understand more about their children’s behavior. They welcome this ‘label’ to confirm what they have suspected, even it was their worst nightmare.
The high levels of stress of these parents would be lowered significantly when they identified positive experiences in the process of diagnosis, such as learning through the experience of special problems; strength and family closeness, understanding life’s purpose and expanded social network. If the physical, psychological, mental, emotional and even spiritual health of the parents is more stable, they have a better chance to cope with this ongoing challenge, maintain a harmonious relationship with others, and to effectively bring up their child with a life of quality and dignity.