|Personify love to the child|
The children were getting ready for a class excursion. A classmate of theirs was very excited too. He too was going with them, first time with friends without any family member accompanying: it seemed as if everything was 'normal'. The child was excited, because his everyday life is not normal. People treat him differently. The child waved bye as the bus taking the children went by. Left behind was his family. Perhaps for the first time to behave like a 'regular' family. They did not know how to interact with each other, because they never had, so far. Every aspect of their life was taken over, by the disability. The parents never knew what it was to talk to each other in a 'regular' husband wife way, the sibling did not know what it was like to have his wishes met. Because every time, in every place, the disability took first place.
How do families cope in a scenario like this? And what can we, as a people of God, do to make a difference. Interacting with parents, I find that 90% of our conversations centre around our differently abled child. Our other children seem to be lost in the rush. Their desires take a second place, their lives seem to be spent shuttling between all the meetings, therapy, special educators etc.
I was asked to share in my church what a church's response should be to children who were differently abled. As I shared, from my position of vulnerability and sharing our pain as a family from some of the responses in a few churches, many, many came up to me later saying they never realized. That day a number of people came over to my child and shook hands with him and said Hello!!! . And guess what my child said when I got home "they saw me, they saw me!!!" How exciting for him, to be acknowledged. He somehow thought other people had not seen him, while others just did not know HOW to respond.
We are placed on this earth for a purpose. Finite man, when he could not understand the infinite God was given Jesus by that infinite God, so that In Jesus we could see, God incarnate. It is in Jesus that we understand God in our very limited understanding. No, we still cannot fathom the full extent of our God, but we can grasp and understand the expression of Him through Jesus, His Son and God himself. In the same way, for the church to talk about love, grace, faith is meaningless, if we cannot incarnate the word. If our lives cannot by our lives show what grace, love, faith means, it is, as it is said in 1 Cor. 13, a clanging cymbal. And we have to model to the world around us what it means to glorify God through our lives. It is for us to show the way, how we believe that each and every person is made in the image of God. It is for us to lead the world by saying that there are no useless vessels in Gods kingdom-for each and every vessel has a purpose.
And how can we do this? We do this by living out, by example, how we reach out to families of children with disabilities. I think, the first thing that any church can do is to identify the families that have children /adults with disabilities. There are many around us, we just need to have eyes to see it. We need to share with them the love of Christ. And how does one do that? Firstly by acknowledging the fact that there IS a child with disability and acknowledging the disability in itself. While admitting a child we talk to the parents. Generally the conversations give us a fair idea of where the parents are emotionally, as far as the child's disability is concerned. Some have just received a diagnosis and are shattered. They cannot think straight and think the world has come to an end. In a way, they are grieving, grieving for the loss of dreams; they had for their child, dreams of the ideal child. The first few months after receiving the diagnosis are crucial for parents as well as the family.
Here the church can step in. Provide the much-needed support, for parents to give vent to their rage, cry, grieve, and talk whatever be the way the person deals with it. And while the parents are 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 under gird the family. I remember when we had received the diagnosis for our child. I was relieved. for I had known for a while something was not quite right, but did not know what it was, but my husband was shattered. So straight from the place where we got the diagnosis, we went to a friends place. Friends that had supported us for many years, by providing a much needed place for us to share our thoughts, and under gird us. And as we sat there, my husband not speaking anything, and the host, also speaking nothing but just sitting there, and the hostess and I talking about what next, I remember being thankful for having friends like them.
Another place where we as a church can step in is respite care. India does not have a culture of baby sitting. WE all come from joint families where cousins, uncles' aunts ' etc. baby sat the younger ones. And then came nuclear families in metros, where there is no extended family to turn to take care of the child where the mother takes a much needed rest. Parents who have children with disability rarely if ever, spend time together. Sometimes we find that the disability defines us. In workshops we ask families to give 1-2 days break per month, minimum, to the primary caregiver, generally the mother. It is necessary that the mother take 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.
A third place is with siblings. A number of siblings have resented the attention given to their sibling with special needs. They seem to be lost in the rush of needs that the other child has. The needs, attention given to the other sibling can make children resent their sibling as well as lead to problems. I have heard siblings express. "I wish I too had (whatever disability their sibling has). 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 he/she is special simply because he /she IS.
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.