So we learned yesterday that Nat has been designated a Priority One by the DDS (Dept. of Developmental Services) which means that in all likelihood, the state will fund an adult residential placement with 24\/7 care.\u00a0 Nat, in the macabre irony of the world of disability, is lucky that he is so severely disabled.\u00a0 He will have a home and caregivers for now and especially for when we are no longer able to do it.\u00a0 What will his home be?\u00a0 That is still the question.\u00a0 If I can get all the pieces to come together in time for his transition out of school in November, then he can live in my envisioned group home, the one I’ve been working on for nearly a year.\u00a0 But if that doesn’t work, there are a few back-up options, like another group home that is just beginning in a nearby town, or one that is already up-and-running.<\/p>\n
That is excellent news.\u00a0 As the DDS Liaison put it, “He will be safe and fed.”\u00a0 Basic needs met.\u00a0 But the salad days of public education entitlements are ending, the days of fully-scheduled, mind developing endeavors, the era of the intricate skill-heavy IEP, finit.<\/p>\n
But this post is not about that.\u00a0 I’ve been thinking about Max these days.\u00a0 My feelings with regard to Little, Little (his very first nickname, which even then was said with irony, my 100th percentile baby boy).\u00a0 The other day I brought up something at dinner that we’d talked about months ago, about NYU and the Tisch School, where he’ll be going.\u00a0 When I started asking him about it, he said, “I don’t want to talk about it.”<\/p>\n
I said, “But is there something — ”<\/p>\n
“I just don’t want to talk about it.”\u00a0 His face was red, and very sharply outlined, which is how he looks when he’s mad.\u00a0 I felt this mild remonstration like a fingerpoke in my belly, and my face felt hot.\u00a0 Here was Max, my gentle giant, setting a boundary with me in a really direct way.\u00a0 Pretty rare occurrence.<\/p>\n
The rest of dinner I ate quietly, feeling anxious that it would happen again, that anything I said would be snapped at.\u00a0 And I wouldn’t know when it would happen or why.\u00a0 I felt sad.<\/p>\n
When I woke up this morning, it all didn’t seem so bad.\u00a0 Max has to do this.\u00a0 He and I have a great relationship, but we are still mother and son, and so this is how a happy-well-adjusted teenage son breaks away from a loving, supportive mother.\u00a0 No matter how great the relationship, it has to happen.\u00a0 Max is setting the boundaries, and I have to stand behind them.<\/p>\n
I got to thinking about how different it is with Nat.\u00a0 I have to set Nat’s boundaries for him, and the way I do that is by having him not come home several weekends a month.\u00a0 I am doing that to teach him independence.\u00a0 I have to do it for him, because he cannot do this on his own.<\/p>\n
I think that’s why it has been so hard for me.\u00a0 It is hard enough having Max changing the rules and dynamics between us.\u00a0 But with Nat, I have to do this difficult and alien thing myself.\u00a0 I have to make myself do it, the way I sometimes force myself to eat broccoli.\u00a0 It tastes terrible, sometimes makes me almost vomit, but it is the healthy thing to do.<\/p>\n
He’s not here this weekend, can you tell?<\/p>\n","protected":false},"excerpt":{"rendered":"
So we learned yesterday that Nat has been designated a Priority One by the DDS (Dept. of Developmental Services) which means that in all likelihood, the state will fund an adult residential placement with 24\/7 care.\u00a0 Nat, in the macabre irony of the world of disability, is lucky that he is so severely disabled.\u00a0 He […]<\/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-2051","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-x5","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2051","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=2051"}],"version-history":[{"count":5,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2051\/revisions"}],"predecessor-version":[{"id":2056,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/2051\/revisions\/2056"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=2051"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=2051"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=2051"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}