Tomorrow, September 25, is Eunice Kennedy Shriver Day, a new global celebration which is dedicated in her honor to the act of inclusion, in particular, inclusion of those with intellectual and developmental disabilities.\u00a0 All you have to do is think of ways, large and small, that you can connect with someone with ID or DD.\u00a0 And then — just do it! Inclusion can start with just a new way of thinking, and if you let that lead to personal connection — well that’s all there is to it.<\/p>\n
Here is what I did:<\/p>\n
The golden welcome-back aura of September brings with it the opportunity of new beginnings and second chances.\u00a0 But I find myself uncomfortably challenged by that. My oldest son is severely autistic, and our emotional calendar\u2014to say the least \u2013 does not always match up with other people\u2019s.\u00a0 So I have to admit that when I first heard about the upcoming \u201cEunice Kennedy Shriver Day,\u201d planned for September 25th, I kind of sighed. This was to be a new, international day devoted to acts of inclusion of those with intellectual disabilities. Sounds good but how, exactly, am I to do it? A simple trip to the ATM with Nat can be a cause for anxiety, because I know he is going to want to walk around and around that crowded little room, waving his hands and whispering to himself. Yet I bring him because I know he loves being among people, even though it looks like he\u2019s not even noticing them. Is that an act of inclusion?\u00a0 I suppose it is, because I bring him along even though I don\u2019t have to.\u00a0 Somehow, I don\u2019t think that this is quite in the spirit of EKS Day.<\/p>\n
But I wasn\u2019t thinking about any of this the other day when I took Nat to the hospital for a routine EKG.\u00a0 Around once a year we go in and he gets tests like EKGs and blood labs, because of his serious medications.\u00a0 And every time, I sit with him, watching him closely and holding his hands.\u00a0 That\u2019s probably unnecessary at this point, now that he\u2019s twenty; it\u2019s just that there was this one time \u2013 maybe ten years ago \u2013\u00a0 when the phlebotomist stuck him and Nat twisted around, shouting, \u201cI want to bite you,\u201d aiming his teeth at the man\u2019s wrist.<\/p>\n
Shortly after we registered with cardiology, a woman came into the waiting room with her teenage son.\u00a0 They checked in, then sat down to wait.\u00a0 She chose a magazine, and soon the technician came out and called out the boy\u2019s name.\u00a0 His mom barely looked up from her magazine as he left for his EKG.\u00a0 I felt a small twinge of envy for this normal mom and her normal, independent son, but by now I am so used to those little pinpricks of pain that it barely registered.<\/p>\n
I got ready for our turn. Maybe that was when I got the idea \u2013 a fantasy really, of Nat going into the EKG by himself. He was calm today, after all.\u00a0 I just get scared of what could happen, what used to happen, and so my tendency is to do everything with him, to avoid trouble.\u00a0 But was that fear based in reality anymore?\u00a0 Was it even fair to him?<\/p>\n
So I did the quick mental calculations of risk that I have become so adept at:\u00a0 EKGs are a\u00a0 simple procedure; you take your shirt off, tape on the sensors, turn the machine on, peel off the sensors, and put your shirt back on. All of five minutes.<\/p>\n
\u201cSo Nat,\u201d I said.\u00a0 He looked up, wide-eyed.\u00a0 Nat gets anxious about conversation.\u00a0 \u201cDo you want me to go in with you for the EKG, or do you want Mommy to stay out here?\u201d<\/p>\n
\u201cMommy stay out here,\u201d he said immediately.\u00a0 Then he added a firm \u201cYes.\u201d I had my answer.\u00a0 He didn\u2019t want me with him.<\/p>\n
The teenage boy soon came out and his mom stood up and gathered her things, completely oblivious to the miracle of nonchalant normal she had just experienced.\u00a0 The same technician called for Nat.\u00a0 He leaped to his feet and slipped quickly past her, waving his arms and talking to himself as always.\u00a0 The tech didn\u2019t seem to notice; she didn\u2019t realize he was anything but a guy going in for his EKG.<\/p>\n
But I could feel that old, heavy responsibility pushing down on me, from twenty years of protecting Nat from the world and \u2013 I realized just then \u2013 of protecting the world from Nat.\u00a0 So of course I felt it was my duty to inform her: \u201cHe\u2019s autistic \u2013 but I\u2019ll be right out here\u2026\u201d\u00a0 I said, almost apologetically.\u00a0 As if I had no right to send Nat in there alone; as if he had no right to try out independence on his own terms.<\/p>\n
\u201cIt\u2019ll just be five minutes,\u201d the technician replied.\u00a0 So I sat there waiting, glancing at magazines that I wasn\u2019t relaxed enough to read.\u00a0 And then, indeed, five minutes later, Nat burst back into the room, talking and waving; all was well.\u00a0 The technician stood there for a moment, smiling at us from the open door.\u00a0 I could have cried with happiness and pride.<\/p>\n
I\u2019ll never know what it was like in there for Nat and the EKG technician.\u00a0 I guess I don\u2019t really need to know, any more than the other mom has to know about her son during his five minutes. But what I now know is that inclusion doesn\u2019t necessarily come with a lot of fanfare \u2013 sometimes a meaningful act of inclusion may only last for five minutes.\u00a0 When Nat jumped out of his chair and into the examining room without me, shucking his isolated, protected existence for a few moments, that was a move towards inclusion:\u00a0 his own.\u00a0 And what made it work was that there was someone smiling and waiting for him when he got there.<\/p>\n","protected":false},"excerpt":{"rendered":"
Tomorrow, September 25, is Eunice Kennedy Shriver Day, a new global celebration which is dedicated in her honor to the act of inclusion, in particular, inclusion of those with intellectual and developmental disabilities.\u00a0 All you have to do is think of ways, large and small, that you can connect with someone with ID or DD.\u00a0 […]<\/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-1735","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-rZ","jetpack_likes_enabled":true,"jetpack-related-posts":[],"_links":{"self":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1735","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=1735"}],"version-history":[{"count":3,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1735\/revisions"}],"predecessor-version":[{"id":1737,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/posts\/1735\/revisions\/1737"}],"wp:attachment":[{"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/media?parent=1735"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/categories?post=1735"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/susansenator.com\/blog\/wp-json\/wp\/v2\/tags?post=1735"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}