Meeting Children's Needs Part 2

If you are a parent of a child with disability and live in India…don’t get dejected. It is tough yes, but we are moving forward. It is happening in patches, some locations offer better services than others and some services are offered by quacks. This is no different than other countries.

You may wonder why it your lot to butt your head against the school, society or family. Your fight will help someone else who’ll follow your path ten years down the road. This is not a curse or a premonition—just an acceptance of reality.

What can you do to help this process?

Make your child visible. If your neighbors don’t know about your child then you can’t expect them to understand the adaptations required in your immediate environment.

Take your child out to where the neighborhood children play. Children will ask honest questions but they will accept your answers and be more open to suggestions on how to include your child in play. If they play for 1 hour, don’t expect them accommodate your child for the entire hour—at least not initially. Start with smaller installments and gradually work your way through. This is not just about social acceptance of your child or social skills development in your child. These children will grow up to become policy makers—in private industry, in the government, in society. You are molding the minds of these policy makers and developing their understanding of your child's needs.

Answer others' questions about your child's disability. That will help others see your child's needs as do-able and will pass on the information to other parents. Most of my referrals from rural areas start with the comment, "My friend/relative heard from a parent (of a child with a disability just like mine) that we can do something for her..." One word of caution—if you get excessively emotional people will listen to you for the first few times. But after that they tend to back off. It is not that they are being intentionally rude to you—it is just human nature to want to discuss other things.

Present your child in a positive light. Begin by discussing what he/she can do. This brings your child’s potential into focus.

Do not allow anyone to patronize you or your child by saying that they have sacrificed their lives to provide service to ‘these kinds of children.’ By accepting that it is a sacrifice to work with your child, you have accepted that your child is below par in some manner. Any one in this field should enjoy their job because it offers opportunities for creative thinking and social interdependence/competence. “Say No to Flowery Language” about your child with a disability.

“They are God’s children” is another patronizing comment. It focuses on the commentator’s need for recognition of his/her goodness and Godliness. Whether you believe in God or not, you should believe that all children should have equal rights and benefits. Equal doesn’t mean the same, so there is room for individualization. I may have written about this earlier…one young mom from a devout Muslim family complained about how every professional she met said, “Don’t get disheartened. These are God’s children. You have been entrusted with their care…blah, blah.” “I am not disheartened and I know that God has given me these children…I maybe sad to see them in pain but I am never sad that they are my children. I find it patronizing that they assume I need to be counseled about God’s plan for me!”

Don’t allow comments linking your ‘Karma’ and your child’s disability go unquestioned. They may argue that it is a matter of individual belief but no one has the right to say that you or your child, deserve disrespect, pain or difficulties, due to a disability.

Most important of all, enjoy your child. That opens minds like nothing else can.

Ms. S