Ned’s often telling Ben (and me) not to judge our insides by everyone else’s outsides. He means that people may look a certain way, like they have it all together, etc., but that it’s more complex than that. I, on the other hand, am approaching others from my insides, as screwy and twisted and small-intestined as they are. The upshot is, I see everyone as smoothly as they show, and then I think I’m so different because I feel differently inside than how they seem to be. And Ben, who is in the throes of sixth grade social angst, does just what I do. He is so much like me that I often have trouble knowing how to help him.<\/p>\n
Last night I was drifting off in bed, taking inventory of the day. But something was not right. So I had to poke around until I found it; and it was Nat. I was thinking about how much more he does in his House than here, and how that bothers me. I was remembering how much I had to prompt him: “Nat, want to listen to some music?” or “Nat, want to watch something?” And this made me feel bad because I was imagining Post-22 Nat, living some place where they don’t prompt you to do something with your down time because the ratios are more like 2 to 8, rather than 1:1 or even 2:5 as it is here in our home.<\/p>\n
Then I got this picture in my head of Nat smiling and rocking and talking to himself in his Adult Home and nobody intervening and that’s that. As I thought of this, Ned was walking around, getting ready for bed and had no idea that I was swimming in such murky stuff so late at night. This realization took me away from Nat’s world for a minute and into Ned’s. I watched him putting stuff away and taking off his glasses, beginning to anticipate soft, welcoming bed, and I suddenly did not want to yank all that away from him.<\/p>\n
But — too late. He saw my face and he knew that something more than “Mmm, covers,” was on my mind. “What is it, Sweetie?” he asked. <\/p>\n
I could see Nat in his quiet, small grown-man world and it gripped my heart and wouldn’t let go. Such a small life. I couldn’t bear it just then. But how to answer Ned’s question, without plunging too deeply and shrinking delightful bedtime for Ned? “Nat,” I answered. “He’s so — well, he can hardly do anything without prompts, and when he’s on his own, they’re not going to prompt him so much.” I didn’t want to stop there, because if I did I would be handing it all to Ned in one heavy lump. <\/p>\n
I waited a moment, and so did he, and then I had a new thought. That’s the disability, right there. I said that to Ned. “This<\/span> is what it means that he is severely disabled.” It’s not about mobility, or talking, or behavior management; it is about his own inner ability to advocate for himself. To be active, rather than passive. <\/p>\n Yes,” Ned said softly, “He is very disabled.” <\/p>\n We lay there in silence; I, trying to hold up this new but also very old revelation and keep it from smothering me. And Ned, with the covers newly torn off of his momentary peace of mind about Nat, and also probably hoping that this would not lead to an hour’s worth of miserable conversation where he could be reading his Kindle and drifting off to my rhythmic snores.<\/p>\n Nat, Nat. How did this happen, how come this is your life? I saw him with that smile, maybe not even knowing how narrow his world was, and that hurt my heart even more.<\/p>\n You’re judging your insides by his outsides<\/span>. No one had said it, but I felt it. Just because I <\/span>would not want that life, doesn’t mean it is bad to him. As the weight of sadness started to lift, I sighed, and also reminded myself that I just do not know how it is for him. That I’ve done everything I can — maybe not everything someone else could, but everything I can. That I’ve loved him deeply and worked for him all his life and now, he is who he is. I have no idea how that feels to him, and I never will. Why assume it is bad for him, just because it would be for me? <\/p>\n Looking at the image of Nat, I see that he is smiling, after all. So maybe I should, too.<\/p>\n","protected":false},"excerpt":{"rendered":" Ned’s often telling Ben (and me) not to judge our insides by everyone else’s outsides. He means that people may look a certain way, like they have it all together, etc., but that it’s more complex than that. I, on the other hand, am approaching others from my insides, as screwy and twisted and small-intestined […]<\/p>\n","protected":false},"author":2,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[1],"tags":[],"class_list":["post-73","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/pSTth-1b","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/73","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/comments?post=73"}],"version-history":[{"count":0,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/73\/revisions"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=73"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=73"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=73"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}