{"id":8007,"date":"2016-10-18T17:36:15","date_gmt":"2016-10-19T00:36:15","guid":{"rendered":"http:\/\/grace-filled.net\/?p=8007"},"modified":"2016-10-20T20:44:12","modified_gmt":"2016-10-21T03:44:12","slug":"31-days-of-parenting-kiddos-with-special-needs-why-autism-speaks-doesnt-speak-for-me","status":"publish","type":"post","link":"http:\/\/grace-filled.net\/?p=8007","title":{"rendered":"31 Days of Parenting Kiddos with Special Needs: Autism Speaks"},"content":{"rendered":"<p><center><img decoding=\"async\" src=\"http:\/\/grace-filled.net\/specialkids.jpg\" alt=\"31 Days of Parenting Kiddos with Special Needs\" \/><\/center><\/p>\n<p>You know how I blogged on <a href=\"http:\/\/grace-filled.net\/?p=7953\">information literacy<\/a> last week?  (You didn&#8217;t read it?  Go read it now.  I&#8217;ll wait.)  Well&#8230; I have an example of it now.<\/p>\n<p>The website that is given out to every parent that gets an autism diagnosis for their kiddo is <a href=\"https:\/\/www.autismspeaks.org\/\">Autism Speaks<\/a>.  They&#8217;re the most vocal organization out there of all the resources on autism, they sponsor walks to raise money for research, and they&#8217;re all about managing autism\/finding a cure etc.  I was too shell-shocked to really read up on it when Daniel was diagnosed and instead focused more on learning about ABA because it was a way of working with him that seemed to reach him in ways that other things didn&#8217;t.<\/p>\n<p><strong>One small problem with the site:<\/strong> it&#8217;s run by neurotypical people and is aimed at making autistic people more like those who are neurotypical.<\/p>\n<p><strong>The problem with this:<\/strong> People with autism AREN&#8217;T neurotypical.  It would be like putting someone in a room with speakers going at full volume with a million different sounds and then expecting them to carry out their life as normal.  IT&#8217;S NOT THE WAY OUR BRAINS WORK!!!<\/p>\n<p>A big problem that I have is that people act like autism is a deadly disease and that it&#8217;s incompatible with life.  Seriously, I&#8217;m high-functioning (which we discovered AFTER Daniel was diagnosed) and my life is fine.  Do I have to find ways to adapt to the world?  Yes.  I go into hiding after having to be social for an extended period of time and I tend to hyper-focus.  I also have always taken what people say very literally and had to learn to distinguish between reality and hyperbole.  Is my brain useful in this world?  It is.  I think my brain functioning in a slightly different way means that I have a way of seeing things and analyzing things that helps me and which can other people.  Would it be that way if I wasn&#8217;t on the spectrum?  No, and I think it would be boring.<\/p>\n<p>After finding out what the signs for autism in girls are and discovering that I fit them, I changed my viewpoint quite a bit.  Rather than hoping that ABA and other therapies would &#8220;fix&#8221; Daniel, I started thinking about what would help him to live in the world being the person God made him to be.  I also eventually (like a month ago) stopped feeling like Daniel&#8217;s autism was a failure on my part.  (And yes, I had been made to feel that way by a lot of people.)<\/p>\n<p>Daniel never stopped being the kid he &#8220;used to be&#8221; &#8212; he has always been himself and will always be the kid he is.  Instead, I need to work on myself and my expectations.  I found this to be the case when I met with his teacher and two of his therapists today for my &#8220;fall family meeting&#8221; (a fancy-schmancy name for a parent-teacher conference) and they talked about how much a sweetie pie he was, how he interacts, how he participates so well, and just how much they love him.  I used to freak out about him staying at grade level and now I&#8217;m more concerned with making sure that he learns to be kind and have made peace with him being whoever he ends up being as a student.  (Kiddo *LOVES* school so I&#8217;m pretty sure he&#8217;ll catch up eventually.)<\/p>\n<p>So how exactly does <a href=\"http:\/\/grace-filled.net\/?p=7953\">information literacy<\/a> fit in?  Well, they tell you to look at bias, manipulation, etc. as a means of determining which sources are more authoritative.  <a href=\"http:\/\/autismspeaks.org\">Autism Speaks<\/a> doesn&#8217;t (or at least didn&#8217;t for a while) have any autistic people on their board of directors or really in any high-up part of the organization which is a bit weird for an organization that purports to speak authoritatively on a condition.  <\/p>\n<p>I asked my dear friend Anita for an alternative and she recommended the <a href=\"http:\/\/autisticadvocacy.org\/\">Autistic Self-Advocacy Network<\/a> instead.<\/p>\n","protected":false},"excerpt":{"rendered":"<p>You know how I blogged on information literacy last week? (You didn&#8217;t read it? Go read it now. I&#8217;ll wait.) Well&#8230; I have an example of it now. The website that is given out to every parent that gets an &hellip; <a href=\"http:\/\/grace-filled.net\/?p=8007\">Continue reading <span class=\"meta-nav\">&rarr;<\/span><\/a><\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_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}},"categories":[1,37,70,17,42,67,68],"tags":[],"class_list":["post-8007","post","type-post","status-publish","format-standard","hentry","category-daily-life","category-daniel","category-parenting-kids-with-special-needs","category-personal-issues","category-the-a-word","category-write-31-days","category-write-31-days-2016"],"jetpack_publicize_connections":[],"jetpack_featured_media_url":"","jetpack_shortlink":"https:\/\/wp.me\/p38xoO-259","jetpack_likes_enabled":true,"jetpack_sharing_enabled":true,"_links":{"self":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts\/8007","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcomments&post=8007"}],"version-history":[{"count":2,"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts\/8007\/revisions"}],"predecessor-version":[{"id":8021,"href":"http:\/\/grace-filled.net\/index.php?rest_route=\/wp\/v2\/posts\/8007\/revisions\/8021"}],"wp:attachment":[{"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Fmedia&parent=8007"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Fcategories&post=8007"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/grace-filled.net\/index.php?rest_route=%2Fwp%2Fv2%2Ftags&post=8007"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}