My so-called strength is deserting me.\u00a0 I hate this, I hate this.\u00a0 There is no escaping my terrible sadness and fear for Nat’s future.\u00a0 Yes, yes, he is luckier than some because he does get some funding.\u00a0 We don’t know how much or where he’ll live or with whom or whom the staff will be but we do know he’s eligible for residential care.\u00a0 But still, for residential care, there is always a catch.<\/p>\n
Nat is between two worlds; he always has been.\u00a0 Neither “high-functioning” or “low,”\u00a0 it is hard to find a match for him, just as it was hard to find a school program.\u00a0 There is always a fork in the road, between the upper levels who are mostly verbal and can make conversation and be left alone maybe a little or a lot, and the so-called lower levels who appear disengaged and have a lot of trouble with communication and safety. In school we had to make the choice between academic programs and pragmatics.\u00a0 We had to risk regression with peers who were more challenging or we had to risk his anxiety and aggression with a more demanding curriculum and fewer support staff.<\/p>\n
Nothing for just plain Nat.\u00a0 How often I have wanted to just pull him out of the world and teach him myself.\u00a0 But what kind of life would that be for either of us?\u00a0 I need to be out in the world and he does, too.\u00a0 He loves being around people, as long as he doesn’t have to talk to them, probably more than I do.\u00a0 I can’t deny him that.<\/p>\n
The group home project is a bit frail at the moment.\u00a0 We are not at all sure we have anyone for Nat in November, when he needs it.\u00a0 There is talk of bringing Nat home for a few months, with support.\u00a0 But that makes me scared.\u00a0 Will he become anxious with the changes and regress and aggress?\u00a0 Will Ben pay the price?\u00a0 Will we even be able to find adequate staff once he does have a cohort?<\/p>\n
Why does the state set such low pay rates for caregivers?\u00a0 How the fuck does that make any sense?\u00a0 And if they do that, why can’t I legally supplement their salaries and pay them more?\u00a0 It is a system that perpetuates low-level life styles, mostly maintenance, because the staff are disengaged.\u00a0 They need to be paid better, like anyone else.\u00a0 What is motivating them?\u00a0 Coming to work to restrain people and clean them up?\u00a0 No wonder there is so much “van therapy;” it is probably a relief to pile them into the van and get them seat-belted and deposit them at DayHab or a mall.\u00a0 God damn it.<\/p>\n
Oh, I’m sorry to anger or depress you, my dear readers.\u00a0 These are my fears.\u00a0 They are your fears, too.\u00a0 They are the worst I can think of.\u00a0 Oh no, wait, there is worse.\u00a0 I could live in a country like Darfur or something.\u00a0 God forbid.\u00a0 This fucking world.<\/p>\n
I know of a young man who would be a perfect match for Nat but he doesn’t have funding.\u00a0 The only funding available for staff for Nat and this guy is very very low.\u00a0 So to put them together means risking a disengaged caregiver.<\/p>\n
Who can help us?\u00a0 All I see is uncertainty stretching ahead for my dear son.\u00a0 Sons.\u00a0 Me.\u00a0 Us.\u00a0 Sure, yes, life is always uncertain, red in tooth and claw.\u00a0 But fucking hell I have tried so hard to make things work for him and now there is so much I have to leave to chance.<\/p>\n
plus Max is leaving on Sunday.<\/p>\n","protected":false},"excerpt":{"rendered":"
My so-called strength is deserting me.\u00a0 I hate this, I hate this.\u00a0 There is no escaping my terrible sadness and fear for Nat’s future.\u00a0 Yes, yes, he is luckier than some because he does get some funding.\u00a0 We don’t know how much or where he’ll live or with whom or whom the staff will be […]<\/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-2104","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-xW","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2104","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=2104"}],"version-history":[{"count":1,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2104\/revisions"}],"predecessor-version":[{"id":2105,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2104\/revisions\/2105"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=2104"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=2104"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=2104"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}