{"id":1876,"date":"2011-01-22T16:45:22","date_gmt":"2011-01-22T21:45:22","guid":{"rendered":"http:\/\/susansenator.com\/blog\/?p=1876"},"modified":"2011-01-23T08:21:02","modified_gmt":"2011-01-23T13:21:02","slug":"ill-never-go-helpless-again","status":"publish","type":"post","link":"https:\/\/susansenator.com\/blog\/2011\/01\/ill-never-go-helpless-again\/","title":{"rendered":"I’ll Never Go Helpless Again"},"content":{"rendered":"

I finished a really good book<\/a> this morning, and then went to empty the dishwasher, when the thought strayed into my head that I don’t do much these days.\u00a0 This is the kind of thought I am prone to, a vestige of my former low self-esteem.\u00a0 Luckily, my new, stronger parts of my brain rose up quickly in my defense.\u00a0 “What the F?\u00a0 Do you know what you do with your time?”<\/p>\n

Yes,<\/em> I thought.\u00a0 These days, and for the past year or so, my main occupation has been planning for Nat’s Post 22.\u00a0 Every day I read something, talk to someone, meet with someone, email someone and basically move towards a complete synthesis of many streams of information.\u00a0 The way I do things is through obsession.\u00a0 That’s the way I love, that’s the way I work, write, exercise, and parent.\u00a0 I dig in to the deepest layer, below skin, fat, and muscle; below confidence and coping, to the raw and bloody emotions around a subject and I try to feel it, see it, and know it.\u00a0 Forget warts and all, I want to get to the pathology of things.\u00a0 That is the only way to live.<\/p>\n

That is the only way I can respond to all of the anxiety I have over Nat’s independent adulthood:\u00a0 by fixating on the entire subject until I know it.\u00a0 And I am getting there, gaining a fluency in Government Speak, where I can juggle federal programs with state agencies, rules and laws, and also how to find the catch in each kind of support offered.\u00a0 I write down figures on any scrap of paper lying around — drives Ned crazy that I never get a clean sheet — and I calculate:\u00a0 “If Nat qualifies for this, we will need to contribute that; if Nat can handle this level of support, we can go for that kind of living situation.”<\/p>\n

I got so much figured out.\u00a0 If I were grading me, I’d get an A- in Post -22.\u00a0 So what’s the problem?\u00a0 Aside from the fact that we won’t know if Nat will get state funds for even a part-time caregiver until two months before he turns 22 (yes, it’s true, at least in Massachusetts; the Department of Developmental Services gets its budget from the Legislature, which never passes a budget on time)?\u00a0 The problem is that I can’t get a core group of families!<\/p>\n

My friends who have sons around Nat’s age rarely even return my zealous, fact-filled emails.\u00a0 They don’t want to deal with it.\u00a0 They have full-time jobs and other pressures.\u00a0 They know how to take things more slowly, to have balance in their lives.\u00a0 But it drives me crazy.\u00a0 I want someone to nudge, someone to compare notes with, but it has to be someone I’ve known for a while.\u00a0 Someone who knows Nat and whose kid I know!\u00a0 This is part of my dream:\u00a0 to have Nat live with guys he knows and likes!\u00a0 How great would that be?<\/p>\n

Why won’t they sit down and plan with me?\u00a0 Am I that much of a pain in the ass?<\/p>\n

But imagine if the boys could live near us!\u00a0 Not with us, near us!\u00a0 A few weeks ago I found a really cute 3-4 bedroom dump of a house right nearby in a great part of my town.\u00a0 Affordable-ish.\u00a0 An agency could buy it and fix it up.\u00a0 My town could be persuaded to provide a Project-Based Section 8<\/a> and reduce the rent, saving the rest of their SSI checks<\/a> for food and part of their caregiver’s salary.\u00a0 The caregiver could live in the fourth bedroom rent free to supplement.\u00a0 I could see it.\u00a0 It was perfect.\u00a0 I imagined painting it all of Nat’s favorite colors.\u00a0 I imagined big loud young men stretched out in the high-ceilinged livingroom, rejoicing every time the T went by (the D-line runs right behind the house!) (these young men love trains).\u00a0 I thought of how they could go on walks with their caregiver (three young men could share one using Adult Foster Care<\/a> money, if they qualify) to all Nat’s familiar haunts:\u00a0 Starbucks, KuKoos Cafe, the Library, Peet’s, JP Licks, Booksmith, Panera.\u00a0 It would be so easy to live there without even having to buy a car for the house because they could walk to Stop&Shop.\u00a0 They could join ZipCar<\/a> if they needed wheels.\u00a0 They could use The Ride<\/a>. Someday.\u00a0 You gotta have goals.<\/p>\n

I am so obsessed with making this happen for Nat.\u00a0 This feels like the way I planned before he was born.\u00a0 I read Consumer Reports to learn about the safest baby equipment.\u00a0 I learned about de-leading an old house.\u00a0 I read and read about what labor and delivery are like.\u00a0 I joined La Leche League so that I could nurse him (I didn’t).\u00a0 I wondered about cloth vs. disposable diapers.\u00a0 I did not let myself think about disability or anything like that, but the worries lay inside my heart like clogged arteries waiting to close up.\u00a0 So I didn’t learn about that.<\/p>\n

This is like awaiting the birth of Baby Nat because I am full of hope!\u00a0 Paradoxically, this process makes me excited.\u00a0 I feel proud of understanding The System, of the helpful connections I’ve made, of the vision that I now have.\u00a0 My mind is on all its cylinders.\u00a0 Nat’s adulthood does not make me sad or scared (most of the time), because I have explored every dark corner of it that I can.\u00a0 I am leaving very little to chance or the vicissitudes of state budgets.<\/p>\n

Yes, yes, of course this could turn out just the way Nat’s babyhood turned out, where nothing matched up with what I had prepared for.\u00a0 It was like I had studied for the wrong exam.\u00a0 Autistic babyhood was not covered in any of the bestselling baby books.\u00a0 I still have a little poisonous hatred for Brazelton and What to Expect the First Year<\/em>.\u00a0 Fuck them for not knowing Nat.<\/p>\n

Sorry.\u00a0 Anyway, I need to talk and think about Turning 22 so much that I’m writing this down today.\u00a0 If I am wrong, I will deal with it, after being knocked on my ass by Nasty Reality.\u00a0 This is my boy, after all!\u00a0 My orange-and-yellow Nat!\u00a0 If I’ve learned anything from the Incredible Horrible Wonderful Clueless First Year of Nat, it’s that as God is my witness, I’ll never be helpless again.<\/p>\n

\"\"<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"

I finished a really good book this morning, and then went to empty the dishwasher, when the thought strayed into my head that I don’t do much these days.\u00a0 This is the kind of thought I am prone to, a vestige of my former low self-esteem.\u00a0 Luckily, my new, stronger parts of my brain rose […]<\/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-1876","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-ug","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1876","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=1876"}],"version-history":[{"count":2,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1876\/revisions"}],"predecessor-version":[{"id":1879,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1876\/revisions\/1879"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=1876"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=1876"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=1876"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}