Maya’s view of herself means more than any disability scale


After hearing me talk about a friend whose child has CP Maya asked me (and in the car of all places), “Is my CP severe Mom?” And then in 30 seconds or less here is what ran through my head: “OMG is she really asking me this question?”, “I can’t lie to her”, “I am always honest with her”, “This is a really important question and I don’t want to screw up the answer!!”, “I’m totally doomed to say the wrong thing here!”.  And then I said, “Well, Maya, like I always tell you, how you view a circumstance depends on how you are looking at it. Some people need more support than you and others need less. Also, when it comes to CP you have to be clear about what skills you are referring to. There are some ways CP may affect you but not others and vice versa.”  After I said this much, I paused and thought maybe I should ask her how she sees herself before I tell her how I see her or how the gross motor function scales (GMFCS) etc see her. “So what do you think Maya?” “Do you think you have a ‘severe’ form of CP?” To which she replied, “No, mom I don’t. There are lots of things I can do.” 

For those of you who follow my posts closely you will know that Maya has had her emotional ups and downs lately about what she can’t do. She has been less receptive to us redirecting her to to look at her strong suits. But, regardless of what has been feeling recently, she clearly still has some really positive self-perceptions too! We have always strived to approach and convey to Maya our deep acceptance and love for her, encourage her and gently help her to focus on what IS available to her. I think some of this has sunk in over time. After she shared her feelings with me and I agreed, I could hear her exhale with relief and realized what an important conversation this was for both of us.


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