{"id":276,"date":"2013-09-02T13:57:59","date_gmt":"2013-09-02T13:57:59","guid":{"rendered":"http:\/\/twinmommeetsautism.com\/?p=276"},"modified":"2013-09-02T13:57:59","modified_gmt":"2013-09-02T13:57:59","slug":"the-road-to-adult-living-rocks-roots-and-vistas","status":"publish","type":"post","link":"https:\/\/twinmommeetsautism.com\/index.php\/2013\/09\/02\/the-road-to-adult-living-rocks-roots-and-vistas\/","title":{"rendered":"The Road to Adult Living – Those Who “Get It,” and Those Who Don’t"},"content":{"rendered":"

As with many things in life and autism, as I blather excitedly to others about our hiking NH’s 48 Four Thousand Foot peaks accomplishment, there are those who get it and those who don’t.\u00a0\u00a0I think about that\u00a0today, several weeks afterwards, during a rainy weekend where I’d far rather be hiking than dusting the living room.\u00a0 I think about it also as the daily struggle to gain capabilities continues, and we do the work that gets us to the peaks -the over and over again repetition that builds capability.<\/p>\n

The “get it” camp among those who reveled in our hiking joy included the boys’ longtime therapists who have watched them gain capabilities, which is really rewarding, and some neighbors and family members.\u00a0 One neighbor even\u00a0baked us a cake afterwards to celebrate.<\/p>\n

The “don’t get it” camp unfortunately at present included most of their teachers, which is a sad statement on which I could riff for a few hours. The “don’t get its” also includes a few uber-hikers that I admire among the various online groups in which I participate, which I suppose saddens me, but also gives me pause to examine my own motives as well as expectations.<\/p>\n

As a spectrum disorder I suppose one has to know autism and its particular expression in a given individual to understand any accomplishment.\u00a0\u00a0 So much media airtime is expended on advocating inclusion for autistic individuals and convincing neurotypicals that jobs, gainful community roles and living settings are possible and indeed contribute to society.<\/p>\n

Unfortunately for those of us who were given “Classic Autism” ie lower functioning individuals – in my case that means W. and J. cannot read, struggle to count and perform basic activities of daily living – it’s not so easy.\u00a0\u00a0 Most assuredly W. and J. belong in their world, and make it a better place.\u00a0\u00a0 However their capabilities are very limiting\u00a0on the\u00a0job or for independent living.\u00a0\u00a0 W. continues to do wonderfully at his shredding job at a sheltered workshop, however by definition it is not competitive employment like bagging groceries (which I wonder if he could ever do).\u00a0 Most decidedly, W.\u00a0needs the supports of the staff at his shredding job to remember basics like “when the red light comes on the machine is jammed so you have to stop” and such – even after at least 9 months of working intensely on such skills.<\/p>\n

J. on the other hand has such profound sensory issues that work environment overload spawns either bouts of nonfunctional vocalization (once called “whale noises” by an S\/LP we met vacationing at a hotel) or bouts of slapping himself rhythmically.\u00a0\u00a0His vocationally oriented school has not yet found a\u00a0job setting where Jeff functions well after about 2 years of various rotations.\u00a0\u00a0 At home with support I see him function beautifully while painting, and he’s also done wonderfully albeit with 1:1 support at a local bakery where he scrapes then greases about 100 cake pans each week prior to baking.\u00a0\u00a0 But it’s been hard to build the requisite preparation skills and independence around these roles – not impossible of course, but a lofty peak to climb on which we are still early in the ascent.<\/p>\n

My lower-functioning guy’s challenges brings up the topic of their life path and where they’ll fit in the world after us.\u00a0\u00a0 Yesterday’s Boston Globe carried a story on abuses at\u00a0a group home chain where\u00a03 adults have died in the past 18 months.\u00a0 Truly I couldn’t\u00a0bring myself to read more than the first 4 paragraphs.<\/p>\n

The road is long, yes.\u00a0\u00a0\u00a0At present I also\u00a0struggle with my own limitations as full-time work demands, a\u00a0profession of “can you top this” in ridiculous expectations, and\u00a0the increased demands of my aging body like the need to stretch and sleep in ways I\u00a0could formerly skip.\u00a0\u00a0Always I feel insanely sad and “bad mother” like when I can’t accomplish all the 30 boys’ action items I put on my To Do List each day.\u00a0\u00a0 The rain has made this weekend about chores and organization, not hikes, which also inspires my feeling rather cheated and sad.\u00a0The road is long indeed, and I am human.<\/p>\n

But thanks to this summer I have a new mental image:<\/p>\n

\"IMG_1882\"<\/a><\/p>\n

This is W., the child who couldn’t go more than 100 yards when we started hiking without a sit down protest and a promise of a reward.\u00a0\u00a0\u00a0The child who took insanely long to plan the next step.\u00a0\u00a0 The child who’d ask to go home after 10 minutes.<\/p>\n

This is W. journeying independently home.<\/p>\n

On my crappiest days, I know I made this happen, and it gives me intense joy.<\/p>\n

 <\/p>\n

We stumble, struggle and sometimes fall as parents of special kids, but the path to\u00a0capability\u00a0journeys upward always.\u00a0\u00a0\u00a0 If you set your child’s\u00a0goals low, you will achieve them.\u00a0 If you look to new heights – you will go above and beyond, and may even surprise yourself.<\/p>\n

Onward!<\/p>\n","protected":false},"excerpt":{"rendered":"

As with many things in life and autism, as I blather excitedly to others about our hiking NH’s 48 Four Thousand Foot peaks accomplishment, there are those who get it and those who don’t.\u00a0\u00a0I think about that\u00a0today, several weeks afterwards, during a rainy weekend where I’d far rather be hiking than dusting the living room.\u00a0 […]<\/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-276","post","type-post","status-publish","format-standard","hentry","category-uncategorized"],"_links":{"self":[{"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/posts\/276","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=276"}],"version-history":[{"count":0,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/posts\/276\/revisions"}],"wp:attachment":[{"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/media?parent=276"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/categories?post=276"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/twinmommeetsautism.com\/index.php\/wp-json\/wp\/v2\/tags?post=276"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}