The boy stood there, moving his arms in a rhythmic fashion, a bemused smile on his face. His mother watched from the corner of her eye, and the people were looking back and forth amazed. And then one person said to the mother, “Why do people give birth to children if they cannot take care of them? Why don’t you take more care of your child?” Tears formed in the eyes of the mother and she withered inside, but said nothing. She felt it was her karma for giving birth to an intellectually challenged child. As she shared this with me, she asked, “Will I have to listen to this kind of comment for the rest of my life?” I was quiet, for I had no answers. And I did not know if I ever would. I cried at the insensitivity of the people saying it, I cried at the pain the parents would go through in hearing the comments from people who did not understand. And I cried at the lack of awareness on the issue among the general public.
“Your child has a disability.” These are words that no parent wants to hear. It fills the parents with a sense of fear and deep grief. The fear of the unknown, the difficulties, the struggles, the pain that people associate with the word disability and the grief of experiencing the death of their dreams and aspirations for their child.
I myself struggled with those experiences and had to grapple with the question, “What does it mean to be a parent of a child with autism?” I vividly remember being reminded when first the diagnosis was made, that it was not an accident, and neither was my child a mistake. God was not sleeping when my child was being formed, and neither did this happen as a punishment from God. When I look at my child and at the students in our centre, I see them as unique persons created in God’s image. Rather than saying, “He is an autistic child,” we need to say, “He is a child with autism.” Autism does not define him as a person. He has his own unique personality.
God has created each person in his image, no mistakes, no compromises. And we as His children need to affirm and demonstrate this truth. How can the church do this? We do this by reaching out to families of people with disabilities.
Provide Emotional Support
Identify families that have children with disabilities. Provide support for parents to give vent to their feelings, to cry, to grieve, to talk or whatever may be the appropriate way for that person in dealing with their situation.
While the parents are going through the process of grieving there are siblings who are being neglected, not purposely, but because parents are trying to cope with a piece of news that will change their lives forever. Some siblings may be small enough to not understand what is going on, but do know that something major has happened in the family. The church needs to reach out and undergird the family. I remember when we received the diagnosis for our child. I was relieved, for I had known for a while something was not quite right, but my husband was shattered. Straight from getting the diagnosis we went to a friend’s place. They had supported us for many years, by providing a much needed place for us to share our thoughts. As we sat there, my husband and the host did not speak at all, and the hostess and I talked about what was next. I remember being thankful for having friends like them.
Another place where we as a church can step in is the area of respite care. Parents who have children with disabilities rarely get time to spend together as family. In workshops we suggest 1-2 days break per month, minimum, to the primary caregiver, generally the mother. It is necessary that the mother takes a break from the child so that she is rested enough to take care of the child at other times. Otherwise tiredness steps in, and a tired, overworked mother makes more mistakes and, in the long run, the child suffers.
Care for Siblings
Many siblings resent the attention given to their sibling with special needs. They seem to be lost in the rush of needs that the other child has. As the sibling, they are always expected to ‘understand,’ and we as parents sometimes forget that they too are children. The church and its families can step in to provide a special outing to the sibling, away from the special needs child. A place where they are special.
We need to personify love to the child with special needs as well as his/her family. We need to personify grace to them. We need to reach out in understanding and hope, support and prayers, as the body of Christ, so that we all can be enriched together and grow as a family of God.Image courtesy of Stephen Dagnall / Flickr.com