{"id":10865,"date":"2017-05-01T14:11:51","date_gmt":"2017-05-01T18:11:51","guid":{"rendered":"https:\/\/www.shorebeat.com\/brick\/?p=10865"},"modified":"2017-05-02T00:17:36","modified_gmt":"2017-05-02T04:17:36","slug":"the-weight-of-it","status":"publish","type":"post","link":"https:\/\/shorebeat.com\/brick\/2017\/05\/the-weight-of-it\/","title":{"rendered":"The Weight of It"},"content":{"rendered":"<p><img loading=\"lazy\" decoding=\"async\" class=\"alignnone size-medium wp-image-10866\" src=\"https:\/\/www.shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-400x300.jpg\" alt=\"\" width=\"400\" height=\"300\" srcset=\"https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-400x300.jpg 400w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-240x180.jpg 240w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-768x576.jpg 768w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-1024x768.jpg 1024w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-560x420.jpg 560w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-80x60.jpg 80w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-100x75.jpg 100w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-180x135.jpg 180w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-238x178.jpg 238w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-640x480.jpg 640w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-681x511.jpg 681w, https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066-600x450.jpg 600w\" sizes=\"auto, (max-width: 400px) 100vw, 400px\" \/><\/p>\n<p>Today we ran into each other at the grocery store. We don\u2019t know each other well, but our kids have been in the same class together several years now, and once we were very compatible room mothers. We chat about our kids (of course), their school, how fast summer is approaching. It\u2019s the obligatory two to three minutes of conversation, but truth be told we both like each other, and despite our long list of things to accomplish that day we\u2019re happy to have seen one another.<\/p>\n<p>I think in another lifetime we would have been friends. Hell, I like your daughter so much had she been born thirty years earlier we would have been friends too.<\/p>\n<p>I have lots of acquaintanceships and friendships after living here more than a decade now. A number of my relationships have a great deal more depth to them (my cub scout wife comes to mind, thank God she volunteered to \u201cbe prepared\u201d too), and a handful of them are moms to autistic kids as well. I made sure to make friends with moms of kids in both the severe and mild camps, as frankly while I know it\u2019s a spectrum (who doesn\u2019t now) my kids\u2019 \u201cautisms\u201d present as totally different entities, with so little crossover to call them both just \u201cautistic\u201d is laughable.<\/p>\n<p>Okay, I\u2019m not laughing, but you know what I mean.<\/p>\n<p>The truth is, I really only unburden myself to the other autism mommies, in part because to explain what\u2019s really going on at home would take a lot more time than two to three minutes (understatement of the century), and in part because I need the people I vent to to just \u201cget it.\u201d My mommy friends of \u201chigh-functioning \u201c (a label I hate) kids get my angst when my youngest has a friend issue or has decided he\u2019ll never take care of his older brother when he\u2019s older because he\u2019s too much work (which I really, really get, but one can have hope). My \u201clow-functioning\u201d (another label I hate) mommy friends talk me off the ledge when I talk about sleep deprivation\/potty issues\/ his overwhelming need to hide my keys twelve times a day and know just to listen and not suggest anything, because I\u2019ve been on the autism rodeo for fourteen years, and damned if there isn\u2019t anything left to try.<\/p>\n<p>Believe me, I\u2019m A type. I\u2019m thorough.<\/p>\n<p>I know, my grocery store friend, we see each other fairly often. I\u2019m the one in the decent-looking blue t-shirt after school trying to interest seven boys in a scouting program that just got with the twenty-first century. I\u2019m at PTA meetings (although I\u2019ve backslided this year). I volunteer at school for various events I\u2019m not sure my son cares if I attend anymore (he says he does, but perhaps he just knows how to work his mom). I usually have a smile on my face (I once won a scouting award which touted I was \u201cKim Happy Clown McCafferty,\u201d which was accurate on so many levels it was uncanny.) I look happy. I am happy.<\/p>\n<p>But there\u2019s this too.<\/p>\n<p>I won\u2019t even attempt to speak for other parents of autistic children here. There\u2019s not just a spectrum for our kids, there\u2019s one for the parents as well. I have read essays and even met parents of severely autistic children who literally wouldn\u2019t change a thing about their kids because they believe it might change the core of who they are. I have read pieces by and met parents of severely affected kids who would do anything for a cure, who would get them to take that magic pill no matter how many pill-swallowing programs their kid had to attend to get that damn magic down their gullet. For the record, I\u2019m somewhere in between \u201cautism is unicorns and rainbows\u201d and \u201csuck it out of him.\u201d<\/p>\n<p>Where I am on that spectrum depends on the day. Hell, sometimes it depends on the minute.<\/p>\n<p>The truth is I vacillate on many things that affect my beautiful, severely affected teen-aged boy. There are some days I am deeply sad about my boy never attending college, getting married, or driving a car (okay, maybe not that one so much). Some days my rational mind tells me he doesn\u2019t think about these things (yes, I presume competence, no, a child still entranced by Baby Einstein in puberty is not worrying about his ACT scores) and is mostly happy with his life, and I should just be grateful for that.<\/p>\n<p>And I am. And despite the accompanying OCD that often threatens the fragile harmony of our family he is happy and thriving. It\u2019s just that when things disappear constantly on his fifty-year-old mother who desperately needs visual cues, sometimes I am not.<\/p>\n<p>Autism mostly happens to the individual who has it, but it happens to the rest of the family too.<\/p>\n<p>If I\u2019m being perfectly honest with you dear acquaintance, I function, I present that smiling countenance to the world because I compartmentalize. You see, my son\u2019s age and impending adult have arrived, and that \u201cfuture thing\u201d I put on the shelf because I was trying to get him to pee in the potty for a year-and-a-half has come to call. This fall will be his first transition IEP, and while I know his amazing, \u201cDisney World-esque school\u201d (I know it\u2019s not a word but it should be) will do their best by my boy, the reality of post twenty-one is scary as hell.<\/p>\n<p>The truth is, contemplating his future, is, well, impossible. You see, even if his dad and I can figure out something worthwhile and safe for him most days after twenty-one; even if we can find a safe residence he\u2019ll actually stay in when technically he\u2019s old enough to drink; even if we can fashion a world that will never be as wonderful to him as his school placement but will hopefully keep him happy enough the problem is, his dad and I will die.<\/p>\n<p>And planner that I am, even I can\u2019t get out of this one.<\/p>\n<p>I am confident that his little brother will play some role in his care-keeping, even if it doesn\u2019t involve living with him. His cousins are close enough to his age I\u2019m sure they will check in on him as hubbie and I approach our dotage, and will do so after our deaths. I\u2019m hopeful I can figure out what the hell to do with him, as the \u201cgroup home versus \u201cbuy a place with our last dime and staff it\u201d options are a constant melody in my mind. Frankly, I mostly block out the statistics on his chances of being sexually assaulted or left in a van to die (and no, I\u2019m not being dramatic) because these issues are too painful to contemplate, and even I can\u2019t help him from beyond the grave.<\/p>\n<p>But damn, I\u2019d give it my best try.<\/p>\n<p>The truth is, the weight of his future world is always there. It\u2019s there when I slink into the back of a PTA meeting fifteen minutes late because I had to help my husband get my son upstairs for bed. It\u2019s there when I\u2019m hoping for forty-five minutes of solitude at my youngest\u2019s karate class because that afternoon was soul-grindingly hard. It\u2019s there when things are actually good and I\u2019m just directing kids through an obstacle course at field day.<\/p>\n<p>It\u2019s there when I run into you in the produce section, the products of which are still considered an abomination by both my kids.<\/p>\n<p>That weight, that tangible weight, is always there, no matter how deep my smile, or if I remembered your name. Please know that\u2019s why I might have forgotten what you do for a living, or why I halved my volunteer services this year because I\u2019m just too damn tired. Despite the beautiful, vindicating, soul-strengthening moments I have with my family, that weight, that uncertainty, that impossibility, is always there too.<\/p>\n<p>So please, just know.<\/p>\n<p><em>For more on my family visit my blog at autismmommytherapist.wordpress.com<\/em><\/p>\n<p><em>Follow me on Facebook at Autism Mommy-Therapist<\/em><\/p>\n<div class=\"fcbkbttn_buttons_block\" id=\"fcbkbttn_left\"><div class=\"fb-share-button fcbkbttn_large_button \" data-href=\"https:\/\/shorebeat.com\/brick\/2017\/05\/the-weight-of-it\/\" data-type=\"button_count\" data-size=\"large\"><\/div><\/div>","protected":false},"excerpt":{"rendered":"<p>Today we ran into each other at the grocery store. We don\u2019t know each other well, but our kids have been in the same class together several years now, and once we were very compatible room mothers. We chat about our kids (of course), their school, how fast summer is approaching. It\u2019s the obligatory two [&hellip;]<\/p>\n","protected":false},"author":196,"featured_media":10866,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_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":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[4,12],"tags":[2193,293,295,294,1127],"class_list":["post-10865","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-life-in-brick","category-ocean-county","tag-autism-adulthood","tag-autism","tag-autism-acceptance","tag-autism-awareness","tag-transition"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"https:\/\/shorebeat.com\/brick\/wp-content\/uploads\/2017\/05\/Autumn-08-066.jpg","jetpack_shortlink":"https:\/\/wp.me\/pgt2Ft-2Pf","jetpack_sharing_enabled":true,"_links":{"self":[{"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/posts\/10865","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/users\/196"}],"replies":[{"embeddable":true,"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/comments?post=10865"}],"version-history":[{"count":0,"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/posts\/10865\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/media\/10866"}],"wp:attachment":[{"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/media?parent=10865"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/categories?post=10865"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/shorebeat.com\/brick\/wp-json\/wp\/v2\/tags?post=10865"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}