Being fairly new to the world of parenting and even newer to to the world of parenting a child with special needs, I find I have a lot to learn . . . on everything.
A big lesson I am learning now that Caedmon is mobile and wanting to play on playgrounds and with other children is that people (parents and kids) look to me to see how they should respond to him. When they ask questions about him they will pay attention to how I answer the questions even more then the words I say. If I answer in a matter-of-fact way, nonchalantly and at ease, they will interact with him in the same manner. If I answer in a fearful, concerned way they will show pity and back away, a bit fearfully.
I've also been learning that the way I answer questions depends on where my focus is on a particular day. For example, if I am concerned about an upcoming exam or worried about how his shunt is functioning, I will answer in a concerned and worried way and the people will respond in part. If I am focused on how beautiful he is and what a joy he is, I will answer in that same joyous manner and people will see how amazing he is. It never fails.
I believe this is the difference between definition and description. What my focus is on is what I use to define. When my focus is on his diagnosis and defect it defines him and that is all the people around me see in him. When my focus is on who he is as a person, his worth as a child of God and his value as a human being, that is what the people around me see too. His difficulties become merely descriptions of why he needs a walker or why there is a bump on his head but are not who he is.
This is something I want to model for him and pass on to him. However, I've realized that I have the same problem with my own character defects. Too often I allow my mind to define myself by the times I have screwed up, the things I have said wrong, the people I have hurt, rather then to let those be descriptions of moments of weakness. I am not my mistakes, I am a worthwhile daughter of God who has made mistakes and learns from them everyday.
That is a lesson worth passing on.
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