this american life

as i mentioned yesterday, i listened to the new this american life and was really touched. the first segment was a story by keren sosnoski, a mother of a child with mosaic down syndrome. she was reporting on another woman, kristy colvin, and her 'radical' child rearing method for her son, tim who was also born with mosaic down syndrome - she chose not to tell him or any of his teachers. sounds a bit risky. but under the circumstances i strongly agree with her decisions.

a child with mosaic down syndrome can look just like everyone else, but struggle with the mental difficulties of the disease; or they could have all the physical characteristics of down syndrome but have a high i.q.; or the possibility for combinations and variations are endless. a very confusing and elusive disease to say the least.

so then what to do when you have a child whose looks are very minorly affected, and possesses a relatively high i.q.? what do you do when, after you tell a teacher your child's situation and advise them that he doesn't need to be treated as if he were hampered in any way, they turn around and fail to discipline him for fear that would upset them?

tim is almost 20 now. his mother decided to tell him about his disease when he was 13. he spoke about the decision and how he felt when he was told:

keren sosnoski: what came into your mind?

tim colvin: storm, cyclops, rogue, the x-men.

t.a.l.: why did x-men come into your mind?

tim: because the x-men are mutants - genetic. they gain those genetic problems. and that's what i felt like. i felt like an x-men and i thought that was kinda cool.

[cue: misty-eyedness.]

tim went on to speak about how he and his mother will have to change now that he's getting older:

tim: my mother is being a control freak right now. i'm going to be 20 this may. it's time i started to be a bit more independent. when i leave this house i plan to never wash dishes again.

t.a.l.: who's gonna wash them?

tim: my wife. [laughing] i kid...'m kidding. i'll have the kids do it. [more laughing]

[cue: real crying.]