I sometimes wonder if guilt is the most universal of emotions.\u00a0 Every religion\/culture likes to claim that it has the market cornered on guilt (Jewish mothers, Irish Catholics…).\u00a0 But is there anyone who carries more guilt around than a parent?\u00a0 From the moment we know what’s going on in utero, we start thinking about what we are supposed to do and what we did wrong.\u00a0 Did I take my prenatal vitamin?\u00a0 Am I eating enough fish?\u00a0 Am I eating too much fish?\u00a0 What about the wine I drank before I even knew?\u00a0 And then the baby is here and it’s all concrete guilt, the daily stuff like, “Is it okay that I let him cry so much?” and “Why won’t that kid shut up?” All the way to:\u00a0 “Was I present enough for him?”<\/p>\n
As both an autism parent and a non-autism parent, guilt is just part of my daily habit, as familiar to me as my own face.\u00a0 “Does Max realize that I want to talk to him but I just don’t understand so much of the technical stuff that occupies his life?”\u00a0 “Does Benj feel like I care about Nat’s rights more than his?”<\/p>\n
And then there’s Nat.\u00a0 All of his life I have felt a vague, slightly queasy guilt, for the mere fact that he has a disability.\u00a0 Irrational, even offensive to say that, right?\u00a0 I apologize.\u00a0 Guilty as charged.\u00a0 But truthfully, it’s a feeling that’s in the mix.\u00a0 It’s not the only feeling, of course.\u00a0 But my thoughts today are about teasing apart the strands of guilt that clump up the otherwise colorful joyous ball of yarn that is my relationship with my sons.\u00a0 I always try to be honest, and so I have to admit that I feel bad that Nat — and his brothers — have a disability to contend with, that I brought them — especially Nat —\u00a0 into this horribly complicated world rather unprepared.\u00a0 All my advice to Max and Ben are crappy, seat-of-the-pants stuff.\u00a0 Sometimes platitudes:\u00a0 “I know, Darling, it’s not fair.\u00a0 It’s hard sometimes.\u00a0 But that is life; it’s not perfect, it’s hard and you are learning that at a very early age.”\u00a0 Great, thanks Mom.<\/p>\n
But Nat.\u00a0 Nat got a shitty deal and it happened on my watch.\u00a0 And more than that, there are all of the things that I didn’t do, or that I can’t, or won’t do.\u00a0 I won’t go in for therapies that claim they’ll do everything from increase speech ability to making the patient less anxious.\u00a0 Yes to the former, not so much to the latter. My Momma makes him less anxious.\u00a0 A nice pillow makes him less anxious. \u00a0 Neighbors turning off their fucking lights once it’s daytime makes him less anxious.\u00a0 So if I have to drive an hour each way more than once a week and<\/em> insurance won’t pay and<\/em> no bona fide universities or hospitals have produced studies that demonstrate efficacy and safety, and<\/em> if I’m not pretty much guaranteed some kind of very evident<\/em> result, I am not doing it.\u00a0 Or if I don’t like the way the practitioner looks at or speaks to my son, I’m out of there.\u00a0 I am old enough at this point not to waste my precious time with my son to go in for that. Let me tell you, when your child gets to be 21+, you know that life is too short and you choose your battles.<\/p>\n At least that’s what I tell myself.\u00a0 How I feel about it is quite another thing.\u00a0 Most of what I feel guilty about is not understanding who Nat is.\u00a0 There has to be some fiction and fantasy to how I view him, because he just can’t tell me what he is thinking for the most part.\u00a0 His smiles are not always related to what’s going on.\u00a0 His anxieties are sometimes inexplicable.\u00a0 No matter how hard I try, to scrunch myself down into his head, I will never know if what I’m seeing is still my own head or his.<\/p>\n So I feel bad a lot about my relationship with Nat.\u00a0 It’s good, but is it?\u00a0 Is it enough?\u00a0 Do I enjoy him the way I thought I’d enjoy my child?\u00a0 I don’t want to say this, but the answer has been no fairly often.\u00a0 He is a lot of work.\u00a0 There is not a lot of tangible reward.\u00a0 There is a lot of scrunching myself, contorting myself to be what he needs me to be and so there is so little surface area of me in the relationship.\u00a0 And yet sometimes it feels like it’s all me.<\/p>\n Until Disneyworld.\u00a0 Somewhere in that running around, from Tomorrow Land through Adventure Land to Frontier Land, I burned off some of that guilt.\u00a0 We were just running, I was leading for once, he was following me, looking for me, listening to me for the next fun thing.\u00a0 And yet it was a give-and-take:\u00a0 “Nat, do you want to try the Dumbo ride or do you want another roller coaster?”\u00a0 and then of course the rephrase, to be sure that he is not simply giving me the default answer, the second of the choices:\u00a0 “Do you want to try a roller coaster, or do you want the Dumbo ride?”<\/p>\n And off we’d go.\u00a0 Only once did I impose my will and refuse to do what he wanted:\u00a0 stay till the bitter end for the fireworks.\u00a0 No, I was getting cold and I did not want to be on a crowded shuttle bus back to the hotel.\u00a0 I was tired, and I could not deal with all the staring that I had ignored the whole day.\u00a0 No guilt, because look at what I had done.\u00a0 I had flown 2 1\/2 hours with my fairly deeply autistic son, taken him to this overwhelming amusement park, spent lots of dough, and shortchanged the conference I was supposed to be attending by cutting out as soon as my presentation was over.\u00a0 I exhausted myself.<\/p>\n I totally enjoyed myself.\u00a0 It was a completely selfish, indulgent, all-sensory enjoyment.\u00a0 We went where we wanted, we ate what we wanted, we went to bed as early as we wanted.\u00a0 We got along like old friends.\u00a0 I had no guilt, not just because I had given him everything he wanted, but because I had also gotten everything I wanted.<\/p>\n","protected":false},"excerpt":{"rendered":" I sometimes wonder if guilt is the most universal of emotions.\u00a0 Every religion\/culture likes to claim that it has the market cornered on guilt (Jewish mothers, Irish Catholics…).\u00a0 But is there anyone who carries more guilt around than a parent?\u00a0 From the moment we know what’s going on in utero, we start thinking about what 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