I keep trying to fix everything, but I’m tired.\u00a0 I’m like that little Dutch boy, plugging my finger into the leaky wall.\u00a0 As soon as one hole is plugged, another leak springs somewhere else.\u00a0 I just keep standing there, like an idiot, water all over my shoes.<\/p>\n
Even before I knew nothing about Albert Camus’ version of Existentialism, I knew that you were supposed to do this.\u00a0 Like the good Dr. Rieux in The Plague<\/em>, who just keeps on trying to heal the doomed and dying of Plagued Paris, we’re all supposed to be good, without thought of the end product.\u00a0 I was raised that way.\u00a0 My mom said it was part of being a Jew:\u00a0 Tikkun Olam, repairing the world.<\/p>\n You probably were raised that way, too, Jewish or not.\u00a0 Not to be saints or martyrs, who usually died for a cause, who perhaps valued others’ lives more than their own, but rather, to be humans who just kind of work to make something better, with the hope of success, but not really.<\/p>\n Autism parents are often made out to be saints when all we really are are parents.\u00a0 Tired parents.\u00a0 When someone says to me, “You do so much,” with admiration in their voice, I fight hard to see it as a compliment.\u00a0 But I can’t help but think about the double edge of that kind sword:\u00a0 the implication that Nat is so so so so so hard.\u00a0 The implication that another parent might not do the same because he is just so _______ blech.\u00a0 My huge-but -repressed indignation rises up when I get that compliment and wants to say, “Don’t say that!\u00a0 Don’t even think it!\u00a0 He’s just Nat!\u00a0 You would do the same because he is simply your (my) child.\u00a0 All children are worthy of whatever effort.\u00a0 That’s just our job as parents.\u00a0 It’s not saintly, it’s not heavenly-ordained, it’s not beyond the Pale.\u00a0 It is just plain old human love.\u00a0 I’m sorry it’s so hard to give me a compliment, though.\u00a0 I don’t expect this to be clear to everyone.<\/p>\n It’s like they think they have it easier than me.\u00a0 But how do they know what easy feels like to me?\u00a0 Some people think I do a million things in a day and they feel exhausted just hearing about my shit.\u00a0 But that high energy and intensity comes naturally to me.\u00a0 I find it exhausting to be bored and uninterested.\u00a0 But having a day ahead of me that consists of 10-mile bike ride, teaching my class, picking up Benj from school, thinking up something interesting to write, feeding us dinner, settling down leaning on Ned on the couch and watching In Treatment while a laundry hums:\u00a0 that is a good day.<\/p>\n Getting pissed off at something happening in the world of disability is also usually part of a good day for me.\u00a0 I love the energy of my anger, and harnessing it to write something scathing and to-the-point.\u00a0 I love calling my fellow travelers to arms.\u00a0 But sometimes it is just so tiring.\u00a0 Wave after wave of bad news hits me upside the head, such as the latest:\u00a0 My beloved Barak’s proposed budget, which contains within it deep cuts to human services and education.\u00a0 I can only imagine the forces of evil he is up against in Congress, the wealthy who must hold tight to their profligate way of life and who refuse to give anything to a government for the people.\u00a0 That he would lay out something as heinous as these cuts, well, you shouldn’t know from it. But now you do.<\/p>\n Still, we have to fight it.\u00a0 It’s not only not good enough, it’s bad.\u00a0 It’s such a leak that it’s like New Orleans, almost.\u00a0 So get out your caulk and get ready to yell because they must not cut social programs, human services.\u00a0 It is the lifeline for people like Nat, who want to live worthwhile lives but will not be able to depend on their families forever, if at all.\u00a0 Write to your Congressman using this easy link<\/a> and tell them to find that money somewhere else.<\/p>\n","protected":false},"excerpt":{"rendered":" I keep trying to fix everything, but I’m tired.\u00a0 I’m like that little Dutch boy, plugging my finger into the leaky wall.\u00a0 As soon as one hole is plugged, another leak springs somewhere else.\u00a0 I just keep standing there, like an idiot, water all over my shoes. 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