{"id":353,"date":"2008-11-13T19:25:00","date_gmt":"2008-11-13T19:25:00","guid":{"rendered":"http:\/\/susansenator.com\/blog2\/2008\/11\/the-post-22-sword-of-damocles\/"},"modified":"2008-11-13T19:25:00","modified_gmt":"2008-11-13T19:25:00","slug":"the-post-22-sword-of-damocles","status":"publish","type":"post","link":"https:\/\/susansenator.com\/blog\/2008\/11\/the-post-22-sword-of-damocles\/","title":{"rendered":"The Post-22 Sword of Damocles"},"content":{"rendered":"

I still do not know what to do about my missing Nat so much. This feeling makes me want to bring him home, take him out of there, even though they seem to love him and care for him well. It has nothing to do with them. It is about me, and this unresolved pain. I can’t stand it. It still flares up, every single day. Planning his birthday is especially hard. Thinking about Chanukah, and what to do for the eight days. Wanting him home, then seeing him just lie around on the couch when he’s here. <\/p>\n

Sometimes I do not know where I end and Nat begins. I cried to Ned last night, lying on his shoulder, the best bed on earth. “I want him back, I was wrong to send him away,” I said. “Can’t I have him back? We promised each other that if one of us was unsure…”
Ned waited a moment, as he does, measuring his words carefully. “We can,” he said at last, “but I don’t think we should. He’s doing really well there.” Then: “Does he seem sad to you?”<\/p>\n

This made me cry some more. My nose was flooding, disgusting. I think Max and Hannah could hear me down the hall. “No,” I said. But it did not make a difference. I just kept crying. “I shouldn’t have done it,” I said. “Why does it have to be this way?” It.<\/span> It was this way, meaning, there is no good solution.<\/span> It means that there were times when Nat really scared me, and his brothers. There was a time, a year ago, when he could not be calmed, he was anxious all the time, and he would fly into rages, running out of the house, pinching us, scratching. As if he were telling us he could not stand to be here, either, with our unpredictability, our inability to understand him, our noises, our lights, the stupid weather, sudden changes of plans. What could I do? I could not handle it. I can only do schedule boards and penny rewards and calendars and stay organized for so long. I’m naturally sloppy, changeable. I could not help him. Why did it have to be that way?<\/p>\n

And then even when things improved in Nat’s attitude, there was the Sword of Damocles, the post-22, the end of childhood to consider, ready to drop upon us. There was the matter of the state’s cruel radar screen.\"\"<\/a> The bureaucracy that determines who gets funding as an adult and who does not. The legend that goes around, that if your kid is in residential, he is more likely to get housing and supports as an adult.<\/p>\n

It’s good for him, it’s good for him. Meanwhile I hear from others I know, adult autistics, about how they hated residential, how they hate Risperadal, ABA, all of these approaches we take in the name of helping our children. And I get so scared that once again I am on the wrong path. I had this child whom I love more than my own life, yes, that is true, I have to say that. And I feel sometimes like I have failed him because there are no real answers, there is no one I trust except Ned, and he’s telling me to hold on. So together maybe we’ll duck the Sword and the five of us will get out of this alive. I hope.<\/p>\n","protected":false},"excerpt":{"rendered":"

I still do not know what to do about my missing Nat so much. This feeling makes me want to bring him home, take him out of there, even though they seem to love him and care for him well. It has nothing to do with them. It is about me, and this unresolved pain. […]<\/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-353","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-5H","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/353","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=353"}],"version-history":[{"count":0,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/353\/revisions"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=353"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=353"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=353"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}