“Your child has a disability”—words that probably no parent would ever like to hear. Being faced with this reality can fill parents with a sense of panic and deep grief at first and can bring with it the fear of the unknown, the difficulties, the struggles and the pain that people generally associate with the word disability.
Even though unofficial statistics in India tell us that 10% of the population has a disability of some kind or another, there is still little guidance here on what to do when one receives such a diagnosis. The devastation and emotional struggle seem even more intense when families do not know where to turn to for encouragement and practical help. As they grapple with this new reality, they often find little support and understanding from extended family members, neighbors, schools, and the larger community.
We need to realize that disability does not just impact the person affected, but the whole family, and changes the dynamics of their everyday lives and home forever. All family members individually and together as a unit go through grief and the process of reimagining life.
It may take a long time for parents to get from denial to accepting the fact that they have a child with disability. In a way parents experience the death of their dreams and aspirations for the child. In India, academic studies are highly emphasized and most parents wish for their children to become doctors or engineers. When they realize that their kid might never go to a regular school and will not be successful in the ways they hoped, deep disappointment sets in with sorrow and worries about the future.
Mothers, who are usually the primary caregivers, might feel overwhelmed and experience profound grief. After the diagnosis, lack of information adds to their hopelessness and helplessness. Initially many of them look for cures and feel shattered when they realize that their child’s condition might improve but it will never be cured. It takes time for this truth to really sink in and be accepted. Mothers can also wonder about the cause: “Did I do something wrong during pregnancy? Is it my fault? Did I take harmful medicine? Is it bad karma?” With the possible added blame from relatives and the frustrations and stress from taking care of a child without sufficient knowledge and tools, the In His Image program has put many a mother on suicide watch. It is not hard to see why.
How fathers of children with disability cope usually receives less attention, even though at times they might be the primary caregivers, especially if the mother falls into depression or responds with deep apathy. Men have fewer outlets for sharing their struggles and finding support, let alone cry and show emotion openly. Additionally, fathers in India generally are the ones who must bare the financial brunt of therapies, special needs educators, special school tuitions, etc. The ways they are impacted cannot be ignored.
The parents’ marriage is also greatly affected by disability in the family. There may be a lot of blaming between the spouses initially and ongoing struggle as they attempt to reshape and refigure life. Experiencing waves of grief, spending much of their time, money and emotional energy on taking care of their special child, making sure other siblings are getting attention and coping well, and pressures from outside all pile up on the plate of the couple. Marriage and parenting are hard enough as it is, it does not take much to see why with the added stresses of raising a child with disability and lack of support many couples end up separating.
Last but not least, what about siblings of children with disability? Often they seem to get lost in the shock and grieving their parents go through and the difficulties of everyday life. Mom and dad might expect them to always be helpful, understanding, good and patient super kids in order to not add to the burden. They can feel guilty for wanting more attention for themselves, for wanting to have a sibling they can play and have a healthy rivalry with, and they can resent their differently abled sibling and/or their parents for this way of life.
My heart is heavy thinking through all this. But even though here we have described many of the hardships families experience, once they are able to accept their child as a gift and not a mistake and learn to support him/her, there are also many little victories and glimpses of joy waiting. Good counseling can help. Supportive church communities can help. Loving extended family members can help. Well-equipped teachers and therapists can help. Let’s pray for more of these all over India.
••••••••••Written by Adrienn