Whether you\u2019re an autism authority or \u201cjust\u201d a parent like me who lives and breathes it through my twin wonder boys, each week brings a parade of events, insights and aha! moments that impact our special loved ones. Here\u2019s my take on this week\u2019s noteworthy items – both autism-wide, and me-deep from my own daily slog through helping my kiddos to grow, and achieving some normalcy on my own.<\/p>\n
Autism-Wide<\/strong><\/p>\n 1.Justice Department threatens ACA\u2019s pre-existing conditions<\/strong>. Given autism is often treated as a pre-existing condition, Wednesday\u2019s DoJ decision not to defend pre-existing conditions coverage in the Affordable Care Act in a case brought by 20 conservative states before the Federal court is frightening. The DoJ agreed with the states that the ACA\u2019s coverage and pre-existing mandates were no longer constitutional and that they should be struck down. Regardless if the Federal court agrees, it\u2019s is a harbinger of legal and personal fights to come \u2013 to ensure our loved ones get the care they deserve, and are not passed off with half-baked excuses for denied insurance coverage like a life-long congenital disability.<\/p>\n 2. Sadness and a call to kindness and self-care.<\/strong> This week\u2019s suicides of prominent individuals cast a pall over the nation with a chorus of mental health experts attempting constructive dialogue to ward off what data apparently suggest is often a surge of such events following publicity. Long ago I recall a far more savvy parent than me saying the one thing that\u2019s good about a lower functioning kid is that he\u2019d never worry about terrorism or nuclear war \u2013 and had a sustaining knowledge that someone would always take care of him. I take heart in a weird way that my kiddos are not likely to experience schaudenfreud. Yet still remember a fellow parent of a 12-year old at the time stating her son wanted to end it all \u2013 and frightening instances where bullied autistic individuals did what they were told this way. OMG world, can we please take a big breath and love each other \u2013 show kindness \u2013 and act inclusively. <\/p>\n 3. What autism feels like, from the inside.<\/strong> 4. It\u2019s IEP season, and\u2026.<\/strong> 5. Autism Graduates.<\/strong> So heartening to learn of cousins, nephews once removed etc. who completed high school and are moving on. Now let\u2019s strive to find a place for all of them in the work world. Progress on this front is so superficial and incremental, particularly for the more affected among us.<\/p>\n Me-deep \u2013 tendrils that went a mile deep at our house<\/strong><\/p>\n 1. What\u2019s inside out can be righted.<\/strong> Jeff showed me that yes indeed, he can turn a shirt right-side out, and after only a few weeks of practice. Yes, he needs prompting but I live for moments of learning like this. Someday he\u2019s going to fold all his own clothes, and I can watch hands-off and sip a Viognier. Ha!<\/p>\n 2. Reading is fundamental.<\/strong> Will\u2019s new-found interest in reading books with caregivers and me is heartening. One of the saddest aspects of my own daily walk with autism is that my guys don\u2019t read. Their logographic knowledge is amazing and picture assisted memory is also huge, but decoding phonemes into expressive language hasn\u2019t happened \u2013 yet. Will\u2019s interest put the Yet in that sentence. I just dusted off an individualized reading program developed by one of our finest S\/LPs, who abandoned it around the same time she decided she no longer wanted to treat our boys. Time to try again.<\/p>\n 3. Nose-prints as communication.<\/strong> The bane of my cleaning tasks are Jeff\u2019s nose prints on windows that my anal retentive self likes sparkling clean. Yet they\u2019re always the ones where he can see people walking by or our closest neighbor\u2019s huge TV which apparently has better stations than our own. Yesterday\u2019s respite helper said Jeff\u2019s bike ride kept getting interrupted by stops to watch people. Feels like a teachable moment in helping him find bridges from his routinized, closed world to the beyond.<\/p>\n 4. Food raids as communication.<\/strong> \u2013 The downside of Will\u2019s Weight Watchers participation \u2013 down 8 pounds, extremely slowly and with see-saws of progress \u2013 is that he\u2019s genuinely hungry. He\u2019s always been a chomper and we know how to position ourselves in the evening and keep an ear out for him attempting to forage the garage refrigerator \u2013 we thought out of boredom or simply loving to eat. I haven\u2019t quite figured out the magic formula for him but he\u2019s adapting to new patterns and I\u2019m lucky he loves lettuce and vegetables. I\u2019m also mindful that he may have other hungers \u2013 driven from boredom, dislike of hearing CNN and yakking political commentators each night, or some other feeling he gets from eating that I don\u2019t know.<\/p>\n 5. Like Arwen says\u2026..<\/strong>there is still hope. Balance is not something I do well, as I strive to live out a ditty I saw on LinkedIn this week (inset) and apply new mantra to \u201cmove the ball forward\u201d and not just with work. My classic struggle is to avoid putting something of my own choosing at the top of my list, ahead of curing autism or saving the world one tech company at a time. Yeah, I have way too many action items, interests and top priorities. But every once in a while I do what I need and it works. Like my new Pilates class or typing these words before I dive into the work piles. There is still hope for me, too, just like my guys. Just like us all.<\/p>\n Five things you can control (attributed to Arianna Huffington) Whether you\u2019re an autism authority or \u201cjust\u201d a parent like me who lives and breathes it through my twin wonder boys, each week brings a parade of events, insights and aha! moments that impact our special loved ones. Here\u2019s my take on this week\u2019s noteworthy items – both autism-wide, and me-deep from my own daily […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[1],"tags":[],"class_list":["post-638","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/posts\/638","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/comments?post=638"}],"version-history":[{"count":0,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/posts\/638\/revisions"}],"wp:attachment":[{"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/media?parent=638"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/categories?post=638"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/tags?post=638"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}
\nEver wonder what it feels like to walk in your child\u2019s shoes, experience their sensory discomfort, or hear and see the same life through their prism? This TheInvisibleStrings Asperger\u2019s forum post chronicles peculiar behaviors I know I\u2019ve seen from my guys \u2013 from listening to the refrigerator, to why an old movie always fascinates, to delays in responding to questions. Most importantly the author explains in painstaking detail the body experience of those with faulty neurology. Gives me pause, literally, when I\u2019m asking Will the same question six times, annoyed by his slow or absent response.<\/p>\n
\nharried parents repeat after me, as I\u2019m readying to do in a week: \u201cThe I in IEP stands for Individual.\u201d \u2013 Say it with all the patience you can muster as you remind administrators that there\u2019s no one-size fits all shortcut to helping your kid to grow while solving their latest resource crimp.<\/p>\n
\n1.\tYour attitude
\n2.\tHow forgiving you are
\n3.\tHow you start your day
\n4.\tHow you treat your body
\n5.\tHow many times you get back up<\/p>\n","protected":false},"excerpt":{"rendered":"